The 5-year milestone

Five years ago today, was a Friday our family will never forget…

About two weeks prior, our whole family had picked up a respiratory infection. Almost everyone had recovered by Easter on April 21st, 2019, but our then 4-year-old Lochlan had only gotten worse. He struggled through the Easter egg hunt and was exhausted. He went to the doctor and got antibiotics in case he had picked up a secondary bacterial infection. Several days later, he showed no signs of getting better. Early on Friday, April 26th, 2019, his doctor took a blood sample and had it assessed to see if there was anything abnormal going on with his white blood cells. That evening, we were told we needed to go to Helen DeVos Children’s Hospital’s emergency room. We had no idea what was going on. We knew it was likely serious, but we tried to tell ourselves that everything was going to be okay. As soon as we got there, we were told that Lochlan had a lot of immature blood cells circulating in his blood. In other words, Lochlan had leukemia. We were checked into the hospital for a long stay. The first step was to figure out what sort of infection Lochlan was still battling so we could focus on him surviving that. He had three common viruses, luckily something generally self-limiting. Then, on April 28th, we got the full diagnosis. Lochlan had acute B-cell lymphoblastic leukemia (ALL). That part was promising. Most acute B-cell leukemias in children are curable. However, genetic analyses revealed his leukemia was due to a chromosomal translocation between chromosomes 4 and 11, aka t(4;11). This means that his chromosome 4 and chromosome 11 both broke, and when the cell tried to repair it, it accidentally put part of chromosome 4 on chromosome 11 and (likely) vice versa. This is a common mutation in infants with ALL (~50%) with a dismal prognosis, with <30% of infants surviving 5 years, and most of them dying within the first year. This is a rare mutation in people over 20 years old (~10% of ALL) with a similarly dismal 5-year prognosis. Between 1 year old and 20 years old, this mutation is pretty rare and only represents 2-3% of cases of adolescent ALL diagnoses. The numbers are so low that there weren’t good survival statistics available. We needed to fight, but we also needed to accept that the odds might be against us. Further analyses of Lochlan revealed that his bone marrow was so crammed full of cancer cells that there was little liquidity to his samples, and very few additional analyses could be done, so we never got a chance to develop highly specific genetic probes that could be used to precisely track the presence of his specific mutation in his blood. Furthermore, the immature blood cells that were circulating in his body were not the cancer cells; they were all the normal cells that were no longer able to fit inside the crowded bone marrow and had to find new homes to maintain minimal normal blood cell function. The doctors tracked the presence and quantity of immature cells in his blood, but not whether they were the normal cells or the cancer cells. We were blind to the presence of his cancer cells throughout this journey.

We spent most of 2019 in and out of the hospital. Every time that Lochlan received Vincristine, he would get a fever 2-3 days later. The protocol for a child with a fever and low white blood cell counts (particularly neutrophils, the first responders against infection) was a trip to the emergency room, blood samples, and 3 days of IV antibiotics while waiting to see if anything grew from the blood samples. It didn’t matter if he showed any signs of being sick (he never did) or that it was always 2-3 days after receiving Vincristine. It didn’t matter that these fevers have been documented in the literature in children receiving Vincristine. It didn’t matter that it happened on every single holiday and birthday. Eventually, we convinced the doctors to start letting us out after 1-2 days with one of the worst tasting oral antibiotics available after showing literature suggesting it could be used for this exact purpose. Lochlan fought us and frequently threw it up, but he at least got to be home. He at least got to attend his 5th birthday party. Because the t(4;11) mutation put Lochlan in a less optimistic survival category, he received a longer and more aggressive chemotherapy routine. Vincristine caused his Achilles tendons to lock up and he began walking on his toes. Methotrexate damaged the myelination of his neurons causing instability and poor awareness of his body in space; he became clumsy. The doxorubicin damaged his heart cells, damage that may or may not make its appearance over the next several decades. He missed a year of preschool and social development. But he was going to go on lower dose, maintenance chemotherapy in time for Kindergarten. He could go to school and all would be fine. WRONG. The pandemic hit. Would COVID kill him? Would one of us get COVID, bring it home, and be the cause of him getting it? We fought to get parents of at-risk kids to the front of the line for the vaccination schedule in Michigan. It worked. He got COVID anyway, his sister got really sick, he seemed entirely unaffected. Many of the negative effects of COVID are related to the hyperactive response of our immune systems to the virus. Perhaps having a crappy immune system worked to his advantage.

On August 2022 Lochlan finally finished chemotherapy. His coordination slowly improved. He still has issues with walking on his toes and needs physical therapy. He is a voracious reader and excelling at school. He is very creative. He has a lot of friends. He’s a very sweet kid. He has trauma and frequent nightmares. He’s scared to be alone. He’s not helpful with chores and addicted to his tablet. He’s mostly normal. It has been 5 years. This is the major milestone that cancer statistics are based on. Relatively few children will have a recurrence at this point. It’s difficult to give an exact number especially given the poor understanding of Lochlan’s type of leukemia, but it’s probably < 5%. For the layperson, he’s cured. For those of us who know too much, it may take another decade to truly feel like he is cured. But this week we celebrate. We celebrate victory over this horrible disease. We celebrate the love of our family and friends who have stood with us through this battle. We celebrate the life of Lochlan the Lion-Hearted.

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The Final Post

Hello everyone! Sorry it has been a long, long time since I last shared any update. This one will be short and hopefully the last. Things have been pretty boring on the cancer front for the past couple years of maintenance chemotherapy. Side effects were moderate and predictable like poor ankle flexibility from Vincristine, lower energy due to poor blood cell counts, etc. We made it through two rounds of COVID with minor symptoms. Lochlan progressed through kindergarten and 1st grade without any evidence of learning issues and has been one of the best readers in his class. He finished chemo on August 13th and will get his port out this month. He’s happy and recovering. We won’t know if he’s cured for another few years. For the next year he will still get monthly blood cell checks, then every 3 months the year after that, then every 6 months, then yearly checks for the foreseeable future. We are still so grateful for all of the help that we received and continue to receive from our friends and family. It was tough, but we made it through what will hopefully be the only battle. Fingers crossed. Love the Maupins.

Summer is Coming 3/29/2021

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This period of weather when the snow goes away and the sunshine means warmth, is one of my favorite times of the year. It’s a time of change with the promise of fun and adventures. It means that it is going to be at least 60F outside, which means I can wear shorts lol. It means I can retire the snowblower and bring back the lawnmower. The kids can ride their bikes around the end of our court. It means that outdoor playdates can resume and my kids can play safely with their friends. That’s one of the most important things right now. The chance for some level of normalcy for my kids who have been even more restricted than the average child right now. It has been tough for everyone and I think we are all ready for change. Alright, I’m done with my flowery intro and ready for some updates.

Thanks to the help of my family, friends, and tons of other families out there who were operating independently, families of at-risk kids were moved up in vaccine priority. Not only to tier 1C, but we ended up becoming eligible the second week of March, which was way ahead of the proposed start of tier 1C originally set for May. Becca and I had our first shots and we will be getting our second shots at the end of this week. Becca had no reaction to her first dose of the Moderna vaccine. I tend to have an exaggerated immune response to literally everything, so I had significant pain and swelling in my shoulder, I felt tired, crabby and “out of it” for 24 hours about two days after getting the injection, and then a week later I also got the injection site rash, but it didn’t cause any discomfort. Thankfully, the kids will be going to my parents’ house for the day after we get our second shots so Becca and I can “Netflix and chill”. With cases on the rise in Michigan again, we are very excited to finish the vaccine series and minimize our chances of picking up the virus and passing it to Lochlan. I’m assuming cases are rising due to Spring Break. I’m going to reserve judgment, because I’m not sure whether or not I would be a careful 18-25 year old if I was in their shoes. I know that my emotions and need to socialize were vastly amplified during those years. So I get it. Hopefully people just minimize their subsequent delivery of the virus to others who have been trying to avoid it. Unfortunately, that’s difficult, but fingers crossed. I can only control my own actions and not the actions of others, so I will primarily worry about how I conduct myself. In either case, we should hopefully be getting to a point that enough people have been exposed to the virus or vaccinated that the virus starts to run out of hosts. But with mutations, who knows…

Back to bright news, Lochlan took 1 day of practice to learn how to ride his bike without training wheels and then 2 more days of practice to learn how to start his bike on his own without training wheels. We are super impressed. He has even handled most of his falls without throwing tantrums or crying. Since it is March and he is already a two-wheeler, I suspect that Torren might decide to work on moving past her training wheels this summer. She’s a pretty motivated learner, so I’m interested to see what she does.

Alright, I need to get to work. I will let you know how the side-effects go this weekend. The end of April will mark 2 years since Lochlan’s diagnosis. The beginning of June will mark 2 years since we last saw leukemia cells. The probability of recurrence drops day-by-day. Life is good.

Sincerely,

Kevin on behalf of Becca, Lochlan, and Torren

Campaigning for Chemo Kids

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It has been awhile and I see that I have not updated on my career direction or anything else that has been going on! So first things first, I was able to get a new job as a Biology Scientific Advisor for a Grand Rapids, MI based biotech startup known as BAMF Health (www.bamfhealth.com) and started last November. Our mission is to radically change cancer therapy by utilizing a therapy known as Targeted Radionuclide Therapy (TRT). Radiation is very effective at killing highly proliferative cells. Traditionally giving a patient radiation therapy involves identifying a particular tumor in a patient’s body and aiming a beam of radiation at the tumor. While improvements have been made to make these beams more accurate, and thereby the off-target damage to the normal tissue that surrounds the tumor can be reduced. However, the beam still has to pass through healthy tissue to reach the target tumor and not every tumor in the patient can be targeted. TRT overcomes this barrier by attaching the radiation emitting atom to a molecule that can be injected into a patient. These molecules are designed to bind specific receptors that are over abundant on the cancer cells. Once the molecules bind, they can then deliver a high dose of radiation within a very small range and kill the cancer cells with minimal penetration into the non-cancerous tissue. These molecules will also allow us to see where the patient’s tumors are hiding via PET imaging. However we won’t even need to see all of the tumors in order to deliver the radiation, so the molecules should be able to take out micrometastases as long as they express the target receptor. So far clinical trial results have been really promising for treatment of some of the worst cases of prostate cancer. There have been numerous examples of patients going from massively widespread metastases at the beginning, to little-to-no evidence of disease after several cycles. One of the major limitations to widespread use of this technology is the synthesis of the radioactive molecules, which require more advanced technology than is currently being used and because the radioactive atoms are highly unstable. So an additional part of our mission is to build updated radiopharmacies across the US that will be able to generate these molecules and rapidly deliver them to patients within our clinics. My job as a science advisor is to help educate everyone within the company on the biology behind our technology and to aid in the design of our clinical trials. I’m having a blast and learning a ton. It’s pretty much a perfect job for me.

Lochlan’s therapy is going well, the holidays went smoothly, and thankfully there haven’t been any major hiccups due to the pandemic. Fingers crossed that it stays that way. But I am also trying to campaign for better protection for kids with cancer or who are otherwise immunocompromised. I’ve been sending out letters to various individuals, groups, and media in order to promote inclusion of caregivers/parents of immunocompromised children in the earlier vaccination tiers. Here’s a general letter I composed:

“I need the support of strong advocates for children with cancer. We need to demand that government officials move their parents up a tier in the SARS-CoV-2 vaccine eligibility since most of these kids won’t be able to get the vaccine until next year.

I am in the midst of trying to get attention for this seemingly forgotten group of at-risk individuals with no voice of their own. I am a parent of a child who is undergoing chemotherapy for acute lymphoblastic leukemia. He has been in maintenance for a year and will be 2 years in remission in June. Best case scenario he still has 2 more years of chemo ahead of him. As long as he’s on chemo, he is immunosuppressed. He is 6. Due to lack of clinical trials scheduled this year for children his age, there is a near 0% chance that he will be eligible for any of the vaccines until at least 2022. He is not alone…

Every year over 150K kids are diagnosed with cancer in the US. These young citizens have weak immune systems due to both their disease and the therapies we use to treat them. They lose years of their childhood to this disease and they are currently losing even more due to the risks of COVID-19. The risk of infection from playing with friends and going to school are too great for these kids. Most are expected to survive their cancers, but those predictions are based upon minimal interruption to their therapies. From the few case reports that have been published, treatment is often paused until the virus is cleared. The long-term repercussions of missed therapy will not be known for many years. Even if this virus does not kill them, a study on college-aged athletes with mild and asymptomatic SARS-CoV-2 infection still showed evidence of heart damage weeks after clearing the virus. Damage from the virus could compound the damage their developing bodies are already undergoing in response to chemo, surgery, and radiation. Once again, we will not be able to properly assess the extent of the long-term consequences for many years to come.THIS IS 100’s of THOUSANDS OF KIDS in the US right now. There are very few case reports of SARS-CoV-2 infection in pediatric cancer patients (probably reflective of how hard their caregivers are working to minimize exposure risk) and there is almost no public discussion going on about kids with cancer and how to better protect them right now. But the increased risk of serious infection in pediatric oncology patients has been well documented for other infections including coronaviruses.

For patients under 12, there will be no vaccine for them this year. There will be no return to school in the fall. No playing with friends. There is hardly any talk of this vulnerable population in the news or on the internet. Most of their parents/caregivers (their greatest potential source of infection) are young and healthy people that will not qualify to get the vaccine until the same time that 16-year-olds are allowed to sign up. So years of social development lost and distress from extreme isolation and they might still get horribly sick when their parent brings SARS-CoV-2 home from work.

These children have been completely forgotten by society. Where are their advocates? Please please write to anyone you know whose voice could make a difference. Our children need your help. Their parents and caregivers need to be moved up the priority list for vaccinations.”

I did an interview today with Lynsey Mukomel from WOODTV8. It will air tonight. Hopefully I did an alright job. I sent WOODTV8 my letter and Lynsey responded within about 15 minutes. Such an amazing opportunity to amplify these small voices.

We are definitely getting a little stir crazy in our house now that it is so cold. Cannot wait for spring and playing outside all day again. Thank you everyone for all of your support. We are so grateful.

Love

The Maupins

Dude. 2020. Amiright? (8/15/2020)

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I am sure you’ve heard other people say it. I’m sure you’ve probably said it. But I cannot believe that it is mid-August already. Like school is supposedly starting any second now. The world is in chaos. Pandemic. Protests. Presidential pugilism. Pool tables in your community! The social media aspect got to me, so I had to abandon Facebook, like a month ago? Two weeks ago? I have no idea. I can no longer tell the passage of time in a reliable fashion. But I can tell you, that quitting the F-book, is a great idea. Life gets slower. Easier. Breathable. Try it. So it has been a long time since I last updated on Lochlan and our family. That’s mostly because nothing scary has happened and we’re just trying to live our lives and enjoy summer the best that we can. But here’s an update.

Lochlan lost his first tooth. Conveniently, he lost it on Grandpa Bud’s birthday, which is the day before his own birthday! So we can always remember that he lost his first tooth when he turned 6. Simple memory device there. The tooth was stored in a special tooth pillow, which you can see in the picture, so it is safely stored away in keepsake land. I cannot say the same thing about my baby teeth, because I used to play with them after they fell out and typically lost them. I wrote many letters explaining why I lost the tooth to the tooth fairy as a child. They still brought me money, so I guess it doesn’t really matter.
Grandpa Bud had his 70th birthday and Lochlan had his 6th! It’s always fun bc they can sort of celebrate a bit together. Lochlan’s party was Mario Kart themed and we camped, as usual. Grandpa Bud picked virtual wine tasting. Both were unique and both were fun.
We rescued a baby bunny from Becca’s boss’ dog’s mouth. Apparently she was driving into work and realized that her dog had a baby bunny stashed in its mouth for a late morning snack. Becca took the bunny home, we named him Bubblegum for obvious reasons, and he is currently living in a hutch outdoors. We plan on releasing him into the backyard when he’s an adult. Although he seems to really love chilling inside on the couch and he has super socialized with us, so who knows if he’ll even want to leave. His choice.
We have had other nature guests live with us. We had a Giant Leopard Moth caterpillar and an Eastern Comma Butterfly caterpillar that transformed with us. Becca raised a strain of sourdough yeast that was derived from one named Pauline that she got from her cousin. We are now also raising a Kombucha SCOBY culture that we’ve named Scooby-Booch. We’ve also started growing a bunch of herbs and vegetables and sprouting broccoli sprouts. So we have really embraced the Crunchy-side this summer. That’s slang for “Having sensibilities of a counter-culture nature lover or hippie; derived from the concept of crunchy granola” according to Wikipedia.
Torren will be starting preschool at a Farm-based program here. It looks pretty cool and she was born Crunchy and is a huge animal lover. It only has 6 kids in the class, so I think germ control might be a little bit more manageable. On the other hand, Lochlan will be doing online Kindergarten this year and supplementing with playdates. There just isn’t enough information regarding SARS-COV2 in kids with chemo for us to feel comfortable sending him to the front lines. Plus, we depend upon childcare from our parents, so we REALLY want to minimize their risk. So it will be an unusual fall, but I’m not sure we remember what “normal” life is supposed to feel like lol.
Work-life: Becca still loves working at her clinic and having the opportunity to interact with adults. She was considered an essential worker, so had no real changes in work, other than a greater flux of vet customers coming in due to an increase in pet adoptions and time flexibility due to the shelter-in-place. As for me, scientists were not considered essential, so I was working from home from the end of March to the beginning of June. Whitmer then made an order allowing scientists to return to work. If any work environment is set up to properly minimize exposure risk, it’s definitely us. VAI has done a great job handling everything and keeping us updated and reformatting the Institute to protect us. We haven’t had any infections in the Institute thus far, but who knows what will happen once school starts. Unfortunately, as part of the consequence of multiple factors, my lab no longer has the funds to support me past December. Letting me go was the most logical decision since everyone else in the lab is working on the funded and more exciting project and were working on it since before I rejoined. I would’ve made the same decision, so there are no hard feelings. I am grateful that Brian gave me the opportunity to come back to the Institute and he has been nothing but great in regards to Lochlan’s leukemia and the scheduling chaos it sometimes brought. So now, I need to finish writing up a manuscript on my project and figure out if any of the other labs in the Institute would be willing to pick me up. There aren’t any other labs that totally fit my background experience in regards to disease or tissues, but I actually prefer learning a bunch of new things. I’d rather know a bunch about a ton of different things than be THE expert in one or a few things. So the primary challenge is going to be convincing a lab to take me on despite my lack of expertise in their area of research and/or techniques. I’m not sure what exactly my plan will be if I don’t find another lab. There is another research facility across the street that has a bunch of Michigan State University labs that might be an option. Otherwise, I may have to consider an alternative career. But that’s all last resort type stuff. Hopefully it won’t come to that. Fingers crossed that 2021 will be a year of improved life, not the further slide into chaos. But as Seneca wrote: “It does not matter what you bear, but how you bear it.” So we will get through whatever is coming!

Alright, time to get to painting our deck!

Love Kevin and Becca

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Chaos 2020

Well I ended my last post with “Hopefully 2020 goes a bit easier.” That comment must have really angered the Fates, because 2020 immediately entered into a weird and chaotic realm of awesome and horrible. Everyone is aware of the global horrible going on right now which is being compounded in the US by the worship of a false idol, so I’m going to focus on the good stuff for this update.

Lochlan has been in chemotherapy maintenance for a couple of months now and doing pretty well. His chemotherapy regime is considerably less intensive. Once a month, he goes in for vincristine +/- intrathecal methotrexate. His at-home chemotherapy is a little more complicated than it has been previously. Every day he has to take 6-mercaptopurine orally. For the first week after his monthly vincristine appointments he also has to take a moderately high dose of prednisone (a steroid similar to, but not as strong as, dexamethasone). Once a week (except on the weeks he goes into the clinic) he also takes oral methotrexate. He has been handling everything really well and the only real issues come around the end of the week after vincristine when he is experiencing his typical side-effects from that, as well as the mood-altering effects of steroid treatment. He is… unpleasant. We love him, but he can be a major diva. Because the steroids increase his appetite, he moans while he eats. But at least we rarely have to harp on him to finish his meals.

Lochlan’s mobility, strength, and endurance have improved significantly since starting maintenance. He is able to run around the yard and our cul-de-sac for very long periods of time again. His hair has been growing back. It’s still very short and growing slowly, but he might actually need a haircut in a month or two. Therefore, he is not in Lansing protesting his inability to haircut lol. While he hasn’t been at school, he has been doing really well working on writing his letters and numbers, as well as has made great improvements in his ability to draw people, robots, and color within the lines. He has also been picking up some basic addition and subtraction. We think he will be in good shape for kindergarten next year.

Since the shelter-in-place order was enacted, both of the kids have started sleeping through the night on most nights. The kids miss playing with their friends, especially the neighbor girls. They have, however, started up a little back and forth of “mailing” drawings and colorings with the neighbors. In general, the kids are happy.

Becca and I have been doing fairly well. Because Becca is a vet tech, she has been considered an essential employee, so she has continued to go to work ~2 days per week. As a scientist that is not working on COVID-19, I am not essential, but I am able to work from home. My previous daily work routine was heavily based on physically doing experiments. I obviously cannot do that now, so my current work routine is significantly different. We have a bunch of data related to a project that we’ve been working on for the past year or so, so most of my time has been committed to weeding through that data and trying to construct a complete story for publication without the need for additional experiments. Because the ability to write computer code is incredibly valuable for doing science and interpreting results from experiments, I have also been filling in additional work hours with learning how to write code. Emotionally, Becca and I seem to be doing fairly well, but we definitely have some off-days. I went through a little stress overload all last week, but I seem to have worked my way through it and am back to equilibrium. It has been really nice to have more time with my family due to removing the commute and need to get dressed for work. It’s still unclear what, if any, additional risk the new coronavirus might have for Lochlan, so we’ve been playing it as safe as we can. Once shelter-in-place is lifted, I’ll be a bit more nervous though. That second wave will come and I suspect there will be fierce resistance trying to reinstate a shelter-in-place. Guess we will all cross our fingers and hope that it isn’t as bad as how 1918 played out… At least we’re not also dealing with the effects of WWI.

Stay healthy and stay safe

Kevin and Becca

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The End of a Terrible Year?

I pose the title of this entry as a question, because I have been reflecting upon all of the events of this year and am unsure of just how bad this year actually was. To start off the year, a winter storm did some damage to our house. This was enough to file an insurance claim. The result? We now have a better looking house and some things that were sort of broken before also ended up getting fixed as part of the process. Although we do have some new neighbors and their fence collapsed into our yard yesterday. They had the fire department over two nights ago, so not sure if the fence is going to be their top priority of things to fix in the near future. Like us, they seem to be having a rough start to their new home ownership.

The whole existence of this blog speaks to the other even more significantly negative event of this year. Lochlan was diagnosed with leukemia. It has been heartbreaking to see our little man have to go through this process. The countless needle sticks, the pain of the leukemia, the pain of the chemotherapies, the horrible tasting antibiotics that he has had to take nearly every day of the past 7 months… The struggle to get him to take his meds or to allow the nurses to jab a needle into his chest port and sometimes his arm have never gotten easier. But as this year comes to a close, so does the majority of his treatment. Lochlan went through the second round of intensification. It took the rest of his hair and he lost a lot of energy, but we only had to stay overnight in the hospital like once or twice and we didn’t miss Halloween or Thanksgiving. He has been in the second round of interim maintenance for about a month now and he has shown signs of his energy returning, his head is starting to grow peach fuzz, and his WBC counts are being maintained at a level that should keep him home if he gets a fever. We had a close call with a fever right before Christmas, but thankfully his neutrophils had recovered by then, so it ended up being just a long visit to the ER. About a month to go of treatment every 10 days (vincristine, low dose methotrexate, and/or asparaginase) before we switch to just monthly visits. There have been no signs of the leukemia cells since his first month of chemotherapy, so while we cannot say that Lochlan is cancer free (we have like 5 years to go until we can say that), he is at least in a good prognosis group for survival. IF the cancer comes back… the longer it takes before coming back, the better the prognosis and typically the cells still respond to the same chemotherapies if it takes a year or two. So I believe in that case, the plan would be to knock back down the leukemia cells with intensive chemotherapy and follow that up with irradiation to kill all bone marrow cells and then give him a bone marrow transplant. Hopefully the cancer is fucking dead and we don’t have to do that, but that’s generally what happens in that scenario. Because we have made it through the main stages of chemotherapy without it coming back, that’s a REALLY good thing. So we can start the next year in fairly good spirits. The main war is over and we’re in peace time negotiations with the cells in Lochlan’s body. Hopefully any little Hitler cells died in the first war.

Okay, so the leukemia was TERRIBLE and scary and sad and bad, but a lot of good things happened this year and a lot of it was because of the cancer. Let’s start with the communities that have formed around my son. Traumatic events have a wonderful way of bringing people together to fight for a cause. I’ve made new friends, discovered “new” family members, rekindled old friendships, and have gotten closer with those whom I’d already been connected. And this was just my experience. I know that this has happened to our extended family as well. The love and generosity has been so helpful and we are so grateful. We have even had two anonymous people pay for our meals at restaurants. Just thinking about these things make me tear up a little and I’m like super tough and void of emotion. At least that’s that mental model I’ve created of myself lol. It’s also worth noting how much Lochlan and Torren have grown as a part of this experience. Lochlan has vastly surpassed 5 year old Kevin in regards to interacting with adults. He has likely surpassed 37 year old Kevin. Like any child he can be difficult with his parents, but he is frequently sociable and polite with people outside of our family. Although he has a bad habit of asking nurses for hugs and kisses lol Lochlan is also very sweet to his sister and will generally practice peaceful negotiations with her when they disagree. Torren has shown tremendous strength and compassion for her brother. She tries to help him take his meds, she gets very sad when he has to go to the hospital, and she has started up a medical practice on her toys at home. Both kids have been loving the jokes that many of you send us on Lochlan’s chemo days.

Other good things have happened this year that may not be related to the leukemia that are worth mentioning. Rebecca found a great new place to work as a vet tech. Even though Becca had only been working at the clinic for a short time, her boss let her take off months of work until we figured out how to manage our new lives, then let her gradually come back. Not only that, but both vets at the clinic made us numerous delicious meals and checked in with us regularly. Pretty great team they have going there. I’ve spent the last year back at the Van Andel Institute working with Brian Haab, whom I worked with prior to starting graduate school. Brian and the lab have been fantastic, flexible, and supportive. The lab has made some great progress in developing a new test for pancreatic cancer. If you want to hear an interview I did about the test, you can listen to that here: https://www.wgvunews.org/post/van-andel-institute-39?fbclid=IwAR09C9e6GF8fWvDVSb8FuK47CvHjc0eXvuqbHQACZwYDm6hpfXjjXthpFMg

I was also given some opportunities to re-engage with the Van Andel Institute Graduate School by leading a discussion course on the critical evaluation of presentation styles and by serving on a board to aid in the design of the new graduate school building that will be put into the building at 234 Division Ave. Plans haven’t been finalized, but it’s going to be a pretty sweet makeover. I was given approval to be able to access the building since I am an alum. We also got a Nespresso Vertuo, which has entirely revolutionized our morning coffee routine.

The beginning of next year should be pretty exciting. I will continue to participate as a leader in the discussion course for the grad students, we have a family trip planning for Great Wolf Lodge, and I was invited to give a research seminar at Grand Valley State University by one of our friends who is a faculty member there. Becca and I also have our 10 year anniversary in June! Thank you everyone for helping us get through 2019. Hopefully 2020 goes a bit easier.

Love

Kevin and Rebecca

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Bad week? -> Good week! (11/5/2019)

Dad’s old fashioned axe carved jack o lantern

Last week (10/29) was the last dose of vincristine and doxorubicin for the first month of “delayed intensification.” Because we were a few weeks into this stage of chemotherapy, it was not surprising that his white blood cell counts were very low. Unfortunately, low white blood cell counts means that he doesn’t have much of an immune system. Even more unfortunate, was that mom, dad, AND Torren all had colds through the weekend before the 10/29 appointment. So after spending the day at the clinic, Lochlan spiked a fever shortly after he got home that evening. Historically, he has gotten fevers FROM the chemotherapy, but usually they’re 3-4 days after receiving vincristine and they’re generally under 101 degrees Fahrenheit. His fever was 102.6, it was 7 days after his previous vincristine dose (or 0 days), he was scheduled to start another week of high dose steroids (which would both block fever and suppress the immune system further making it harder to detect and fight off an infection), and it was highly improbable that he didn’t catch our colds. So I brought him to the ER that night. Unfortunately, the ER didn’t get the memo that he had already been declared neutropenic and would therefore HAVE to be admitted to the hospital, so we ended up waiting first for 2 hours while they rediscovered that he was neutropenic and then another 1-2 hours for a room to be cleaned and prepared for us. So it was a pretty late night. Then some sadistic person came in shortly after we had both fallen asleep and was loudly testing every single outlet in our room. I never got an explanation as to why that happened, but it might have been the most annoying sleep experience I’ve had at a hospital.

But at this point, we were pretty nervous that Lochlan might end up missing Halloween because the standard procedure when a kid is admitted to the hospital with a fever and neutropenia is to put the kid on strong IV antibiotics and wait 48 hours to make sure that no bacteria grow in the cultures taken from his blood (neutrophils are critical for clearing bacteria that like to sneak into our blood stream. Rarely an issue for a person with an intact immune system, super easy for bacteria to sneak into someone without an immune system. Major problems if this happens). However, they also did a nasal swab and that came back positive for enterovirus and parainfluenza 4. Neither were of serious concern and each alone could account for the fever, but viruses also mean that we get locked up in our room.

Around noon on Wednesday a doctor stopped in and I started the usual bartering for Lochlan’s freedom. I kept it simple. 48 hours of blood culture time would put us at 8 pm on Thursday, which would be too late for Halloween. So given that we had a reasonable explanation for the fever (viruses) and an oral antibiotic that we could take at home (Levaquin) that as long as he didn’t get a new fever (it had been gone since he went to bed the night before) that maybe they could let us go at 44 hours of blood culture time. Well they ended up doing us one better and they let him go home at noon on Thursday! Plenty of time for Becca to drop him off at home with Bop and Torren and then head back to the Institute to help me win a prize in the costume contest. Then we both headed home for a short trick-or-treat run in the blizzard and then rain storm. Totally worth it.

This weekend was fun, laid back, but we still got a lot of household chores done including raking the backyard and hanging some Christmas lights. Today, Lochlan’s appointment was just to check his blood cell counts to see if he needed an infusion. To measure blood cell counts they did a finger prick instead of accessing him. His counts were good, so they sent him right home. Lochlan did great with his oral meds last week and he gets a break from most of them for this next week. He earned it. The steroids have had his appetite through the roof this past month and he has an adorable moon face, but they’ve been keeping him up at night and clearly wiping him out. It will be good to be done with them. The holidays are rapidly approaching. Fingers crossed that we don’t spend any of them in the hospital.

Love

Kevin and Rebecca

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School Starts (9/17/2019)

Met some chickens at the Metabolism group cookout
A totally safe bonfire

The week between interim maintenance visits was the kids’ first week back to school! Both kids have been loving it and both have claimed to be friends with everyone. Hilariously, like older kids, they seem unable to tell me anything that they’ve learned at school. Maybe this is a deep seeded part of the developing human brain lol

Sick and in isolation
Video chatting mom and sister during the tornado warning to make sure they were okay
Playing games with mom
From the last visit, but Locke was on TV!

Also not surprisingly, Lochlan brought home some sort of upper respiratory infection. His body seemed to handle it fine, but that meant we spent the whole next week in isolation for his maintenance therapy. This was our third week in the hospital. Other than being trapped in the room all week, there weren’t any major complications. Locke’s creatinine levels were a little elevated at the beginning (probably due to his kidney thing), so they put him on extra fluids. We were originally worried that his lack of exercise might slow down his methotrexate clearance rate, but those extra fluids kept us on track. Locke was out of the hospital by noon on Friday, which was a new record.

Family hike in the neighborhood
A young berserker
spiderwebbing
Becca made this and Dr. Bones owned it
Feet loaf

Because Locke was out early on Friday, and it was Friday the 13th, there was time to have a FUN-FRIDAY! We started Halloween decorations and ate Feet Loaf, Becca’s take on meat loaf. It tastes way better than it sounds…and looks…

Just barely caught Angry Birds 2 in theaters

Another week of freedom, play, school, then it is Torren’s 3^rd birthday on Saturday! That will be a great way to cap this last week before what I think is our last week of interim maintenance.

Love

Kevin and Becca

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Horses of courses (9/3/2019)

Well it has been a busy couple of weeks since the last post. Through the Children’s Hospital, Lochlan was nominated to have a horse come and visit our house thanks to Camp Casey ( https://camp-casey.org/ ) the weekend before last. Camp Casey is a horse riding program that started in Farmington Hills, MI in honor of a young girl named Casey Foote. When Casey was going through chemotherapy, for her brain and bone cancer, she found solace in horseback riding. This non-profit visits kids with cancer and throws them a pizza party with a horse! AT THEIR HOUSE! In fact, when they knocked on the door, our horse “Mosey” was standing AT THE DOOR! He even sneezed into our house lol We were worried that Lochlan wouldn’t ride the horse because he avoids all petting zoo animals. But, he actually did really well and both brushed the horse and rode it without much prodding. Torren, who loves animals, was ecstatic as expected. This was a really unique and fun experience, so we are grateful to have had them visit.

Playing Wii U
Late Thursday night with Torren the sleepless
I’m a kitty
GOING HOME!

That was followed by our second trip to the hospital for a dose of interim maintenance chemotherapy. We checked in on Tuesday morning and Locke’s counts were good (although hemoglobin was on the lower end, so they planned to do a blood transfusion once the chemo treatment was done), so we were given the green light to start treatment that night once Locke was sufficiently hydrated. The week was pretty low-key, but the highlight of the trip was that the hospital recently had some Wii U play centers donated, so we got to play a newer version of Mario Kart. While Rebecca stayed with Lochlan during the days, I once again stayed the first two nights and she stayed the third night. As a reminder, our check out day/time depends upon when Lochlan has peed out almost all of the methotrexate. The first time we did this, Lochlan started the methotrexate at 6pm on Tuesday night and hit his target blood level by Friday morning. However, this time Lochlan didn’t start methotrexate until after 9pm. This ended up being an important factor, because by Friday morning, Lochlan was sitting just above the threshold for being considered “clear” to go home. The nurses said that because of this, he wasn’t scheduled to be retested until SATURDAY MORNING. This wasn’t going to work because 1. We needed to be in Midland on Saturday morning for Grammy’s birthday and 2. Lochlan was only a tiny bit above the threshold, so we suspected that he might pee the rest out by that afternoon. Becca debated with the floor doctor and got him to schedule another test for 2pm, although the doctor insisted that kids often sit slightly above threshold for a whole day so he didn’t think Locke would pass the test. Pshhh… Locke was well below the threshold by the 2pm test. So we got cleared to go that night after the blood transfusion.

As another reminder, Lochlan tends to spike a fever 3-4 days after receiving vincristine. He got vincristine late Tuesday night, and as expected, spiked a 100.3 fever on Friday. I was worried bc we were still in the hospital when it happened. But clearly the nurses/doctors have finally taken our claim seriously, bc they still let us leave right after the transfusion (7pm). We gave him Tylenol, then he had no other fever issues that weekend. Locke and I drove home, we threw him into the other car, and drove to Midland.

Torren was very excited for her new coat
Playing good guys vs. bad guys
Locke took a selfie
Making breakfast

The birthday weekend at Grammy’s went well. It was primarily a combination between Torren and Grammy’s birthdays, but there was some celebration for Lochlan and Becca’s cousins Marcy and Ty as well (although Marcy couldn’t join bc she was sick). There were several trips to the playground, some runs around the neighborhood, and a few minutes of sleep. Lochlan had some struggles playing soccer with some kids who came to the party on Sunday. The medicine and cancer have slowed him down and little kids can’t really be expected to understand that they need to play with him a little differently until he gets off the chemo and gets his legs back. One kid pushed him pretty hard and Locke fell on the side of his bad kidney so was having a lot of trouble with pain and his pee was a little dark that night. Thankfully, that all cleared up by bedtime, but I got really stressed out and lost my interest in celebrating, so spent some time alone until the party calmed down. I’m getting too old to keep up with Grammy and Bop anyway lol jk

One last exciting thing that happened, was Locke started preschool today! This is his first time going to school without mom (previous preschool was a co-op). Tomorrow Torren starts her class! Lochlan was happy when mom and Torren picked him up, so I think it went well. He said that everyone is his friend.

Well thanks for following this adventure. We are planning on enjoying this hospital-free week before heading back next week.

Love

Kevin and Rebecca

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Interim maintenance (8/19/2019)

I know I promised an update last Odin’s day or Thor’s day, but it’s better to post on Máni’s (moon’s) day than never post at all right? So originally Locke was supposed to start interim maintenance on 8/5. For this stage of chemo, they want the normal bone marrow cells to get a full break from heavy immune suppressive drugs. However, Locke’s blood cell counts were low on 8/5, so we did not start interim maintenance until the following week (8/13).

Mom accidentally packed Torren’s shorts in Locke’s bag so we thought it would be funny to send her this pic
Night lights outside the children’s hospital
Lochlan took pretend cooking super seriously
Playing with the hospital train set
Torren wanted to show Locke the crown she made

So what is interim maintenance? This is a 2-month “break” where Locke gets a slight change in chemo to drugs that still strongly disrupt highly proliferative cancer cells, while not overly preventing the proliferation of the more moderate normal cells. Unlike previous stages of chemotherapy, Lochlan HAS to spend a few nights in the hospital every other week, where they monitor the levels of one of his drugs (methotrexate) to make sure he gets it out of his system before sending him home. However, while they originally told us it would be 3 DAYS, it turns out that it’s more like a MINIMUM of 3 NIGHTS and he leaves whenever his methotrexate levels dip below a certain point. So it’s essentially a full workweek, every other week. Yes. It is not our favorite. But this is life now. There aren’t other options, so we take things as they come.

The drugs for this stage:

Vincristine

Vincristine. Same drug that he has been getting since we started this whole ordeal. This drug primarily works by screwing up the cell machinery that is involved in allowing cells to divide while they are proliferating. In a normal cell, this gets sensed as a problem that the cell needs to fix or at least slows down cell division. If this can’t be fixed, then the cell kills itself. For cancer cells, they either sense this and die or they divide and end up with an abnormal/incomplete number of chromosomes and this greatly screws up their function and they will often die as a result of the improper segregation of chromosomes/genetic information. This drug can cause severe constipation. For those familiar with Lochlan’s adventure, he tends to have a lot of issues with vincristine constipation. However, we seem to be on top of it this week and haven’t had any issues that weren’t solved with some laxatives/stool softeners. This drug also tends to give Lochlan a fever 3-4 days after administration (well low grade for 3-4 days and then it spikes). The doctors did approve the use of Tylenol the day of, and the day after receiving vincristine and this has seemed to help prevent the fever spike. This is great bc usually the fever meant an additional 3 days in the hospital.

Folic Acid
Methotrexate
Leucovorin

Methotrexate. Previously Lochlan had only received methotrexate in his spinal fluid. As a reminder, methotrexate interferes with various cellular pathways by pretending to be the B-vitamin folic acid (one of which is in the formation of the nucleobases that constitute DNA). It strongly suppresses immune cells and was one of the first chemotherapies developed for leukemia. It was originally given in the spinal fluid to prevent leukemia cells from establishing themselves there. For interim maintenance Lochlan is receiving methotrexate in his IV every two weeks. In addition to suppressing the immune system, it can also be highly toxic to the kidneys. This is why Lochlan is monitored and not allowed to leave until the drug is mostly cleared from his system. To help clear the drug, Lochlan is given lots of IV fluid, beverages, and is encouraged to run around the hospital. To make our hospital stay even better, he(we) is(are) forced to wake up at least two times a night to pee.

Leucovorin. Leucovorin is a methotrexate “antidote.” Leucovorin is given to rescue the normal immune cells from the suppressive effects of methotrexate bc it can be converted to other folic acid derivatives while bypassing the enzyme that is directly inhibited by methotrexate. So Lochlan receives methotrexate for a few days, this kills off some residual cancer cells (although also prevents proliferation of normal cells), then Lochlan is given leucovorin, which rescues the cells that didn’t die in response to methotrexate so that they can resume normal proliferation.

6-MP

6-Mercaptopurine. Lochlan received this oral chemotherapy during consolidation/intensification. He takes this pill every day, but at half the dose he previously used. This drug interferes with the formation of nucleobases that constitute DNA.

But that’s basically it. Otherwise Lochlan has had a fun and busy couple of weeks. His cousins Ava and Gabe were in town two weeks ago. Then last weekend Lochlan and Torren got to spend the weekend with Grammy and Bop while Becca and I went to Lake Huron with Becca’s cousins for our annual cousins’ camping weekend. Sadly for me, I pulled a muscle in my back while I was squatting on Friday. So I spent the weekend in excruciating pain. But it was still fun. Although we did not get super restful sleep, so we are pretty tired. Talk to you all soon.

Uncle Aaron teaching Lochlan some sports
Lochlan demonstrating a pretty good throw
Cousin photo
Riding bikes with Ava
Seriously lego building with dad

The NASA experiment I helped design last year made it to the international space station a few weeks ago. Here’s an astronaut changing cell media. Unfortunately, I was not there for the launch due to Lochlan’s leukemia, but the rest of the team got everything set up without me!
Playing cards on the beach
Grilling dinner
Men can plan without needing to communicate with each other ahead of time

Love

Kevin and Becca

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Locke’s Birthday Weekend and the Interim to the Interim Maintenance (8/6/2019)

All the kids
Mom’s homemade lightsabers
Fishing: Locke’s favorite birthday game
Gift bag design station… Awesome right?

It has been quite a streak of good ol’ family fun since the last post. Lochlan did NOT spike a big fever before his birthday party, although it did go up to like 99. We gave him Tylenol for the first 24 hours after the vincristine. Then we gave one more time after that because he had some random ache/pain. So maybe hitting the inflammatory response early helps blunt the fever response.

silly string
Locke with the Benedict boys
Pinata prizes (yes, this is all in reverse order)
The snack table
Balloon race

Lochlan’s birthday went off super smoothly and Becca really loaded up on the party games and Star Wars themed food items. I was really impressed. She totally nailed it. Lochlan also had a great time and was full of smiles that whole day. Because Grandpa Bud’s birthday is the day before Lochlan’s, we also celebrated his birthday! We usually camp with Becca’s family for Lochlan’s birthday, but that obviously couldn’t happen this year. Instead, Becca’s family stayed until Tuesday and we played our typical yard games and had bonfires/cooked in our backyard.

Happy Birthday Grandpa Bud!
Stormtrooper homemade cupcakes
Flying
How many people CAN you fit in a hammock?
Water balloon fight prep. With a playset, things got pretty serious
Campfire cooking!

The week was after that was fairly uneventful, until my sister and her family came to stay with our parents. We spent the weekend with them at the beaches in Grand Haven. The kids had a blast together. The day we got back home, Torren was telling me all about her big sister (her cousin Ava) and other grandfather (her uncle Aaron). So it was another good weekend.

Sometimes he asks to have a selfie taken with him
Playing on Rosy Mound Beach
Needed a break bc it’s a long walk to the beach
Becca’s first attempt at a 5 strand braid on Ava
Let me tell you about our extensive range of microbrews
Love
Love
Beach bums

As many of you know, Lochlan was SUPPOSED to start interim maintenance this week. However, when Becca brought him in on Monday, his circulating blood cell counts were too low. So they gave him a blood transfusion and sent us home for another week. The interim maintenance is partially about letting the normal bone marrow cells rest a little from the super strong cytotoxic chemotherapies. Some kids take up to 3 weeks off from consolidation to allow the bone marrow to recover before they start interim maintenance. Therefore, there is some potential that it won’t start for an additional week. I will update next week regarding whether Lochlan’s counts are back up!

Love

Kevin and Rebecca

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The Problem with ADD… (7/24/2019)

In general, Becca is the main person that interfaces with the doctors and then relays information to me, then I post about it. The problem is that I have pretty bad ADD, which can result in me missing bits and pieces of a message. Sometimes the details aren’t important (at least in my opinion), but sometimes they are. This is one case where the details were important. Becca sent me the following text before I wrote yesterday’s post: “So next we enter interim maintenance. Where every other week we go in for 3 days. That lasts for 2 months. What days would be best? Weekend or weekdays?” My brain skimmed the following: “So next we enter maintenance. Where we go in 3 days every month. What days would be best? Weekend or weekdays?”

So interim maintenance, is 3 days, every other week. The chemo is less intense than consolidation, but the schedule is actually worse because we HAVE to be in the hospital every other week. After 2 months, then we may re-enter intensification/consolidation phase for an additional 2 months before we go into actual maintenance. So unfortunately, we aren’t even close yet to maintenance/normalcy. Sorry for the false alarm.

Love

Kevin and Becca

Sorry for the lack of pictures, but I don’t have any new ones for this quick update. I’ll post again following Locke’s birthday.

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Maintenance is Coming… (7/23/2019)

Torren helping to wrap Locke’s presents instead of sleeping
Torren’s gift to Lochlan
Second-to-last chemo day of consolidation therapy
The kids looking cute together in hats from Brenda Kerr

This post will be extremely short, but Lochlan went in for his vincristine and asparaginase treatment today. Blood counts looked good (better than anticipated given the toxicity of Cytoxan that he received two weeks ago) so he didn’t need a transfusion. He will almost certainly need one next week. Doctors gave him prophylactic Tylenol to help combat the onset of fever in response to his chemo (which has been a consistent issue) and we were given permission to give him Tylenol for fevers at least through tomorrow. He usually spikes a major fever 3 days after vincristine, but this is at least a sign that the doctors are taking our notes into consideration. Who knows? Maybe being aggressive with the fever in the beginning will prevent the spike or at least delay it for after his birthday. Or maybe I’m wrong and there is no relationship and it has all been coincidence. I don’t think the vincristine-fever mechanism has been figured out or at least I haven’t seen a mechanism in the scientific literature (although the relationship HAS been observed in other kids). But good news! Next week, Lochlan will receive his LAST dose of chemo for the intensification/consolidation phase! Then WE GO INTO MAINTENANCE!!!! All I really know about maintenance at this point, is that it will involve us staying at the hospital 3 days in a row, once a month, for 2-3 years. That’s it. A weekend a month. His hair will start growing back. His normal cells will start living a mostly normal life cycle. His energy for the past month has been pretty good, but even that will improve. He will start his new pre-school in the fall pretty much back to normal.

That’s all I have for today. We are all really looking forward to celebrating Lochlan’s 5th birthday this weekend. This is an extra bit of celebratory material to add to the festivities. Thank you everyone for all of the love and support. I will post an update when we find out more details about how maintenance is going to work and I will continue to post periodic updates during maintenance.

Love

Kevin and Rebecca

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Everything is Currently Fine (7/22/2019)

I suppose that it is probably safe to assume that if I don’t post for a pretty long time, that is because everything is more-or-less “okay.” The last time I posted, Locke had to be admitted into the hospital because he had a fever and a headache (July 2nd). All blood cultures and viral swabs came back negative. The fever went away after the first night we were there (staying consistent with the vincristine pattern). The headache stayed around an extra day. They wanted to do a Positron Emission Tomography (PET) scan to see if they could identify a source of active infection, however due to the holiday, they weren’t going to be able to get him in until the 8th. Because the fever and headaches were gone by the 4th, they decided it wasn’t worth waiting because they probably wouldn’t find anything anyway, so they let us go home on the 5th. For a PET scan, people are given a relatively mildly radioactive version of glucose (fludeoxyglucose) that is taken up by hungry cells, but isn’t broken down so sort of hangs out in the cell. This technique is best known for identifying tumors because they suck up glucose at incredibly high rates (unless they’re slow proliferating cancer stem cells), but active sites of inflammation also have bunches of cells that need a lot of glucose to fight an infection/repair damaged tissue. So PET scans can also be used to identify sites of infection.

Glucose
Glucose with radioactive fluorine atom
Example of PET scan. Red indicates high glucose uptake

I ended up coming down with a cold on the 5th and Locke got it within a couple of days, but his blood cell counts were back up by this point, so he didn’t seem to have any enhanced illness due to his crappy immune system. We celebrated the 4th a few days late with Nanna and Bud. The past two weeks he has been on his Cytoxan, Cytarabine, 6-MP cycle of chemotherapy. He seems to handle those drugs a bit better because it was another uneventful 2 weeks. Unfortunately, tomorrow he starts vincristine again. This is a concern, because his 5th birthday is on Friday and his party is on Saturday which is exactly when we expect him to spike a vincristine fever. We will discuss options with the doctors. According to a study I saw, kids who were also taking steroids (dexamethasone) tended to not spike fevers in response to vincristine.

Playing games on the 4th at the hospital
I left the room for 2 minutes to switch over the laundry :*(
Sinks are a lot of fun
Freyja loves magic tracks
Our family 4th of July pic from the hospital
Home
5th of July celebration
Dr. Bones found a missing car
Bob’s burgers
6th of July celebration

Other activities over the past two weeks, included a trip to Grammy and Bop’s, a few trips to friends’ pools, and a lot of hanging out as a family AT HOME. Hopefully this week goes smoothly and Locke has an AWESOME 5th birthday. He wanted it Star Wars themed like his friend Jude from Indianapolis. I also heard that Jude’s mom overheard Jude talking to some neighbor kids. Jude was trying to collect toys to send to his friend Lochlan who had cancer and needed cool things. Kids are great. Adults could learn a lot from kids. Enjoy the pics!

I’m a hipster now
Locke upset bc he thought I bought him fancy underwear, but I said I got myself matching underwear
Swimming at Dee and Kevin’s pool
Static electricity
The Octagon
Leaving the elementary school park
Yeah, we started playing Magic
Goodbye Becca’s car with no name
Goodbye for real William H. Macy
Torren “didn’t know cars could drive up curbs”
Lunch with Lee and Amy
Swimming at Lee and Amy’s
Bubbles
Roasting peeps over the fire
We forgot that we didn’t have marshmallows, but we did have some peeps!

Love

Kevin and Rebecca

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The Cliffhanger(s) 7/2/2019

Turtle at Ada Park
Frog at Ada Park
Tiny pine cones at Ada Park
Smiling couple at Ada Park
Wooden lodge at Ada Park with homeless guy
Wooden lodge at Ada Park with beautiful woman
Girl on Gator
Pretty me
Pretty her
Final hole
We tied
Confusing sign
Becca throwing
Cute pics of us

So, when I last posted, Locke was delayed on receiving his asparaginase treatment until the next Monday (6/24). The weekend before that, Becca and I got to have a nice day away for our 9^th anniversary. Saturday (6/22) started out with a workout for me and a haircut for Becca. Then we went and played disc golf at Cascade park, which we hadn’t done in like 10 years. They changed the course a bit since the last time we played, but it was clearly still well maintained. I had some worries that people stopped playing disc golf and that Cascade may have taken their course out. Then thanks to Becca’s sister Rachel, we were able to use her hotel credits to stay at the Courtyard by Marriott downtown Grand Rapids. After getting cleaned up, we went to San Chez for dinner and had some amazing tapas. We followed this up with a visit to the hotel pool where we battled with our pool super hero moves and Becca showed how much better she is at swimming underwater than me. After sleeping in a tiny bit, we ate breakfast at Sundance Grille, then meditated, then took a long casual stroll through Ada park on our way back home. It was a great weekend, which was good because things have sort of sucked on-and-off from there.

Torren fake peeing on a target
Water fight

On Monday (6/24) Lochlan went in for his asparaginase treatment. While there, he first had a coughing fit (unclear if it was in response to the asparaginase or bc he freaked himself out which he does a lot now with medicine), so they took a break and restarted the treatment. When he was about 2/3 of the way through, he spiked a fever. Lochlan consistently spikes fevers ~3 days after receiving vincristine (which was on 6/21) and bc our immunes systems can develop antibodies against asparaginase after prior exposure (he had it during the first month of chemo), it was unclear whether the fever was due to one or both of those chemotherapies OR it was in response to a sudden bacterial infection (which I was skeptical of based upon the reasons I just listed that relate to chemotherapy). But because he had a fever and because he had low neutrophils (~300ish), he was put on IV antibiotics and admitted to the hospital. We figured that it would be a day or two of a hospital stay and we were convinced it was probably the chemotherapy because Lochlan showed no signs of illness and was running around the hospital the two days he was there. However, Wednesday the floor oncologist said Lochlan was not allowed to leave bc he insisted that it was bacteria (even though the blood cultures also failed to show any evidence of bacteria). I was at work when this happened and Becca was clearly upset with how the conversation went with the doctor, so I headed over to get a better idea of the rationale behind keeping Lochlan in the hospital. So the rationale went like this: The doctor seemed skeptical that Lochlan spiked a fever 3 days after vincristine, but that he would check Lochlan’s notes. The doctor said that immune responses to asparaginase don’t just present as fevers, but more as allergic reactions. So he was highly confident that this was bacterial and that Lochlan had to stay on IV antibiotics because he didn’t have enough neutrophils to be sent home and that there was a 30% chance of a worse bacterial recurrence if Lochlan went home instead of staying in the hospital. I asked if there was a broad spectrum oral antibiotic that we could give at home. He said one didn’t exist. I was skeptical of that claim, so I asked a nurse to page our primary doctor because she’s a better creative thinker. After talking to her, it turned out that a study recently came out showing that patients who essentially matched Lochlan’s characteristics, who took the oral antibiotic Levaquin (which we had at home because it was the antibiotic they sent us home with when Lochlan first came home from the hospital) showed major protection against recurrence. So she ordered Lochlan to be given a shot of neupogen (to stimulate neutrophil production from the bone marrow) and sent home as long as he agreed to take his Levaquin twice a day. It also helped that we were due to come back for chemo that Friday and that we only live ~25 minutes from the hospital. She said that if he spiked a fever before Friday that he had to come back in immediately. I promised and said that I would come crawling back, begging for forgiveness if that happened. So evidence based medicine won the argument and Locke was able to go home and play with his sister and all of his toys. He was very happy. He did a great job taking his Levaquin Thursday and Friday, despite it being the most foul tasting medicine that I think I’ve encountered. He didn’t develop a fever and was able to get his vincristine without any issue on Friday. However, Friday brought a unique stressor…

In hospital for fever A
Back home with sister thanks to science
Happy we bartered his freedom

Because Lochlan is taking some major chemo that saps his normal blood cells (all of his counts were about 10% or less of what would be considered normal last Friday), Lochlan consistently needs to get his blood cells counted and a blood transfusion with his chemotherapy. Neupogen needs about a week to really work, so Lochlan’s neutrophil counts tanked by Friday (30 per cubic mm, when we want closer to 3,000). That was disappointing, but the stressful part was that when they measured his circulating blood cells, there was about 10-15% immature cells. There should be 0%. They were of the myeloid lineage, so there was some fear that Lochlan had leukemia recurrence, but that it switched from Acute Lymphoblastic Leukemia to Acute Myeloid Leukemia. This can happen to people with Lochlan’s particular translocation and our doctor had observed this in a previous patient of hers (who needed a bone marrow transplant, but survived and is a young adult now). So Lochlan also got a bone marrow biopsy while he was there in order to get a better idea if this was indeed leukemia. Our doctor was hopeful because preliminary analyses suggested that the immature cells were at several stages of maturation (a leukemia would typically present as only one stage) and because several studies have documented that neupogen can result in the presence of circulating immature myeloid cells (neutrophils are of the myeloid lineage). We didn’t actually get the confirmatory results that looked for translocations until Monday, so the weekend was a little tense, but the results came back that the cells were normal. So this and the fever issue from last week were the reasons that I didn’t post an update until now. I didn’t want to leave you all with a bunch of potentially serious cliffhangers.

Torren and baby Warren
Nude gardening
Sandbox with Warren
Dad takes short break from shed building
The tiniest cornhole
Lochlan’s Bulbasaur
Warren hugging boy
Warren hugging girl

That weekend, Becca’s cousin Marcy came to visit and brought her 1 year old son Warren. Lochlan and Torren had a ton of fun playing with him. Having everyone in the family distracted by Marcy and Warren freed up some time so that I could put down the paving stones and start assembling my shed. I got most of it up by Sunday afternoon, then Becca finished it while I played with the kids. I forgot to take a final picture, but here’s a couple of progress shots.

The instructions recommended two people work together to assemble the shed
It’s not absolutely level, but relatively level

Some of you may be doing some math and wondering whether Lochlan got his fever 3 days after his vincristine injection. He did! Monday afternoon/evening Lochlan had a temperature hovering in the upper 99.x F. Technically we don’t need to call the hospital until Lochlan has a consistent fever over 100.3 F. But I packed our bags while we waited, because they tell us to come in 100% of the time once we call. Packing our bags was pretty easy because Becca had already put out Lochlan’s clothes for several days on my dresser. Lochlan fell asleep in our bed while we were trying to figure out if we needed to call the hospital that night or in the morning, so we decided that I would sleep with Lochlan and wait until he got hot and then bring him in. Around 4 am, I woke up and felt that he was pretty hot, took his temperature (102.2F) and got ready to go. He was in pretty good spirits, despite the fever, but also had a headache, which was new. We don’t have any test results back from blood cultures or anything (they were also supposed to take blood to test if his body rejected the asparaginase from last week), but Lochlan’s fever is going pretty strong ~103F at 8:30 pm and he last complained of a headache and dizziness. So I think he might be actually sick this time. It’s not clear if it is bacterial or viral. I don’t know if they’ve taken any mucosal swabs to test for viruses. They’ve never successfully cultured a bacterial specimen from him, but they did get positive results for viruses when we were first admitted at the end of April. His neutrophil count is slowly climbing (back to 300), but I’m guessing that we won’t be out of here until the end of the week at best. So I guess I am still leaving this post as a cliffhanger, but I’ve gone too long without posting something. Thanks again for all of the love and support. Becca and I discussed it a little and we think Lochlan’s spirit is becoming a little stronger during these terrible months. He does a better job of appreciating things around him (he talks about how beautiful the trees are whenever we drive anywhere) and he has been voluntarily helping out with some basic tasks around the house like feeding the cats. He also tells some of the nurses how great they are.

How Becca and I communicate
Fever B
At least there’s tons of toys here
Lochlan got a tractor for his poke prize. He told the nurse that he wanted to get the whole set when he made enough money. She gave him the whole set. Nurses love this kid.

This isn’t the life I would’ve picked for any of us, but I do think we’re all getting stronger. Tired and often walking a fine line across the cliff of despair, but we haven’t fallen.

Love

Kevin and Becca and Torren and Lochlan and Orion and Freyja

Orion and his girlfriend Freyja

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A Week of Abnormalcy (6/21/2019)

Torren’s pajama choice
A cool new Transformers quilt
Torren stealing pie
Lochlan reading cards from his cousin Ava’s Brownie group
Out for a ride with Torren

Driving the neighbors’ cars
Cruising with Heidi’s girls
Torren drew this lion for Locke

It has been about a week since my last update. Life has started to get to a somewhat stable level of abnormalcy. Since the last update, we had Father’s Day. That was fairly low-key. Nanna and Grandpa Bud came over and brought some ribs and other fixings. My Impala (William H. Macy) has had the death rattle shake for over 6 months (13 years, 220,000 miles, a hidden oil leak, a coolant leak, a minor steering fluid leak, multiple electrical issues, a broken muffler, leaky tires from rusty wheels, etc.) Grandpa Bud generously donated his gently used Toyota Camry Hybrid (now Steve Buscemi). It is a nice ride. It’s 5 years old and still smells mostly new. A couple of years ago, I left a watermelon and a gallon of milk in my trunk for a hot Indianapolis week. I’ll leave that smell to your imaginations. But I now feel safe driving my kids in my car. Well I haven’t technically driven them in the new car yet, but I will feel safe about it when I do. If you’re wondering about how I decide on names for my cars, my black jeep in high school was Don Knotts. If anyone can guess my pattern (besides great male actors), kudos to you.

Goodbye William, hello Steve
I love Torren’s face
My pony tail is finally coming in super classy
My friend Gabi brought her elephant femur to work

The week was filled with fairly normal work. I’m doing a bunch of CRISPR/Cas9 in some pancreatic cancer cell lines. The kids continue to need someone to sleep with them every night. Lochlan has been doing okay with taking his at-home chemotherapy. And the kids have been doing a lot of normal play, including play dates with our friend Heidi’s girls and the neighbor girls. Locke even got a special short visit from his good friend Jude and his older sister Ella (who Torren loves) as they were heading back to Indianapolis after what I think was a Father’s Day camping weekend with other family members in Michigan.

Visiting our friend Aimee’s house
Chemo with mom
Ultrasound with sister, kidney wound looks a tiny bit healed
Bubblessssss
Torren wanted her picture taken with our new friend Bobah

Lochlan went in and got his methotrexate dose in his spinal fluid, an IV dose of vincristine, and a blood transfusion (all of his counts are low again). The plan was to give him asparaginase today as well, but because the blood and asparaginase both have the potential for immune rejection, they didn’t want to give him both in the same day. So unfortunately, Monday he will have to go back in to get the asparaginase. This is his first time having vincristine in like 3 weeks, so his poop has been mostly normal. He will also get vincristine next Friday (2 weeks on / 2 weeks off) so we will have to stay on top of his stool softeners and laxatives. But because these are vincristine weeks, Becca gets a break from giving him his at-home chemo IV (cytarabine). This also means that he doesn’t have to have his tubes hooked up to his port, so he gets like two weeks of warm baths!

Tomorrow Becca and I will be celebrating our 9^th anniversary! First I will lift weights while Becca gets her hair cut. Then we are going to drink some Traverse City Cherry Bourbon while we play disc golf. Then we are checking into our hotel downtown. Then we are going to dinner. We don’t really know where, we are just going to wing it. Then we are going to go in the hotel pool and hot tub. Then we are going to watch a movie in our room. Then we are going to sleep in. Then we are going home to play with the kids again. Our anniversary is technically the 26^th, but Becca’s parents were coming to town this weekend, so we figured this was a great opportunity to leave for a whole night.

That’s it for now. Enjoy the pictures.

Love

Kevin and Becca

As a reminder: if you’re interested in donating to Lochlan’s medical fund (we hit the goal, but I imagine the bills will rack up even higher over the years), please check out his GoFundMe link below. Thank you to everyone who has contributed to the fund and/or has given support to our family in other ways. We are grateful for all of it.

https://www.gofundme.com/lochlan-the-lionhearted-has-leukemia

Dinner at Big Boiler Brewery with Jeff and Jon Kollnot

Oh and an old friend of mine (Jon Kollnot) was recently diagnosed with stage 3 gallbladder cancer. He does not have good insurance, so most of his medical care is not being covered. The drug that the doctors want to give him, is going to cost him $1800 like every other week. They really need help. So please consider donating, even if it’s only a few bucks.

https://www.gofundme.com/medical-funds-for-jonathan-kollnot

Locke says he likes the face he’s making in this picture, so here it is

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A New Cocktail after the Short Drug Holiday (6/13/2019)

Sorry for the delay; we’ve been enjoying our time at home! Friday night at the hospital was fairly uneventful and Lochlan didn’t have a fever, so we were cleared to head home early Saturday afternoon. Once we got home, there was plenty of time for Lochlan to play with Torren and Aunt Rachel and explore all of the new yard toys (playset, sandbox, and hanging tent). The play has continued over the past several days and Lochlan has been showing the most energy and enthusiasm that we’ve seen since before he got sick. On Tuesday, he even dressed himself and put himself on the potty, so we’re relieved to see that he hasn’t given in to helplessness and seems rededicated to pursuing a bit of self-sufficiency.

Flower petal angels
Hugging the tree right after getting home
Socrates
The first hug
Normalcy
Exploring the new playset
The hanging tent

As I have mentioned a few times before, this stage of chemotherapy has MORE drugs. I now have a list of these drugs so I’ll give you a rundown about what drugs he’s taking and a bit about how they work. The reason for increasing the number of chemo drugs, is that if there are any leukemia cells still hanging out in his body, they must be resistant to the main drugs that he received during his first month of treatment (vincristine, dexamethasone, and daunorubicin). Drug resistance can be due to mutations that prevent the binding of drugs to their cellular targets, increasing the expression of enzymes responsible for degrading the drugs, or by increasing the expression of drug transporters that physically pump the drugs out of the cell. We will continue to incorporate some of the old drugs because we know that they were able to suppress the vast majority of leukemia cells and even if there’s some resistance to them, the combination of the old drugs and new drugs might be more effective than the old or new drugs independently.

Here’s a list of the current cocktail:

Mercaptopurine (6MP): orally, 5 days a week at home

Cytarabine (ARA-C): by IV, once a day, 4 days a week at home

Cyclophosphamide (Cytoxan): by IV, every 4 weeks at hospital

Methotrexate: In spinal fluid, typically once a week, at hospital

Vincristine: by IV, weekly (two weeks on, two weeks off), at hospital

Asparaginase: by IV, once every 3-4 weeks, at hospital

The first warm bubble bath in 2 months

I told you that it was a lot. And Becca has to use her Vet Tech skills and give IV pushes through Lochlan’s port for the Cytarabine! How that will happen is that on Fridays, when Lochlan gets his weekly chemo treatments, the doctors will install an IV line into Lochlan’s chest port, then Becca will use that IV line to give Lochlan his at-home chemo through Monday, then she will remove the IV line after the Monday dose. While Lochlan is hooked up to the IV line and for 24 hours after its removal, Lochlan cannot have a bath. Lochlan loves warm bubble baths, so he’s not super pumped about this. However, he had his first full bubble bath since getting sick this past Tuesday. As you can see in the picture, he was in heaven. At least he gets to take baths 3 days a week now. That’s better than zero. But what are all of these drugs? (In the chemical structures, if you see a line with a kink, that kink represents a carbon atom (C), which typically also has 1 or 2 hydrogens (H). But that’s as far as I’m teaching organic chemistry today). I got all of the structures from Wikipedia.

The building blocks of DNA and RNA
Mercaptopurine

Mercaptopurine: Used to treat leukemias, Crohn’s disease, and ulcerative colitis. “Mercapto” means that the compound has a sulfur atom. A purine, is a type of double ring structure that contains carbons and nitrogens. The purine structure is found in adenosine and guanosine, which are 2 of the 4 building blocks of DNA (adenosine, guanosine, cytosine, and thymidine). Because mercaptopurine has a similar structure to adenosine and guanosine, it sneaks into the pathways that cells use to make adenosine and guanosine, thereby preventing cells from copying their DNA and thereby blocking proliferation. Mercaptopurine is classified as a thiopurine and anti-metabolite.

Cytidine
Cytarabine
Cryptotheca crypta, the sponge where cytarabine was discovered

Cytarabine: Used to treat leukemias and lymphomas. Also known as cytosine arabinoside. This drug has a cytosine nucleobase, but instead of being attached to a deoxyribose (as it would in DNA), the cytosine is attached to a ribose sugar. This compound was originally discovered in some species of sponges, so maybe that can appease the anti-drug pro-natural cure crazies out there. Cytarabine functions in multiple ways. Cytarabine can be incorporated into DNA during cell proliferation, but once it is inserted, a DNA damage response is initiated in the cell, and the cell should kill itself. Cytarabine also interferes with enzymes responsible for making DNA and RNA, also screwing up cell function. Cytarabine is classified as an anti-metabolite, as well as a nucleoside analog.

Cyclophosphamide
Phosphoramide mustard
Acrolein
https://www.slideshare.net/ferdiefatiga/cyclophosphamide
Mustard gas from WWI and WWII

Cyclophosphamide: Used to treat many cancers, including both leukemias and solid tumors. It is classified as an alkylating agent (adds a carbon containing structure to the bases in DNA) and nitrogen mustard (has a nitrogen with carbon “arms” that terminate in chlorine atoms (Cl)). Mustard gas (as pictured above) was a chemical weapon used in WWI and WWII, which had a scent similar to mustard plants, was yellow-brown in color, and caused severe burns and depleted white blood cells in people who came into contact with it. Wonderful how humans have treated other humans over the millennia… The white blood cell depletion was considered pretty interesting and the sulfur group was replaced with a nitrogen to make it less caustic and turned into a drug to combat lymphoma in 1942. Nitrogen mustards function by attaching their carbon “arms” to guanines in DNA and this causes neighboring guanines to chemically “stick together.” Think of the molecule as having two arms and one arm grabs one guanine and the other grabs another if it is close by, in a death hug. This leads to major DNA damage and triggers cell death. Cyclophosphamide is the pro-drug version and becomes activated by oxidative enzymes once it enters cells to create phosphoramide mustard. Creating a pro-drug, helps to increase drug stability and can reduce the ability of the drug to function in non-target cells. The remainder of the ring that gets removed is known as acrolein. Acrolein can be pretty toxic to the bladder, so we have to make sure Lochlan stays super hydrated, particularly right after he gets dosed with this drug.

Folic acid
Methotrexate

Methotrexate: This is a drug used in the first month of treatment. It is used for several cancers including leukemias and solid tumors. Because it is an immunosuppressant, methotrexate is also used to treat autoimmune diseases. It is an anti-metabolite that mimics folic acid and therefore screws up chemical reactions that require folic acid, most notably the formation of nucleobases, which are required for DNA. This was one of the first drugs used to treat leukemia. Lochlan only receives this in his spinal fluid and it is meant to prevent leukemia cells from getting established there. So far all of Lochlan’s spinal fluid analyses have come back negative for leukemia.

Vincristine
Periwinkle

Vincristine: This is a drug used in the first month of treatment. Vincristine is derived from the periwinkle plant. This molecule is obviously very complex, so much of its historical use involved deriving it directly from the plant, which should please the naturalists out there. However, the yield from periwinkles is incredibly low (1 ton of leaves = 1 oz of drug). Current methods involve a combination of isolation of natural intermediates and chemical synthesis. Unlike every other drug I’ve listed, vincristine does not have a direct influence on DNA synthesis. Vincristine functions by binding a protein known as tubulin. Tubulin is involved in grabbing newly formed chromosomes and pulling them into separate cells during cell division. When vincristine binds tubulin, it prevents this process, cells fail to properly separate chromosomes, and the cells fail cell division. A major side effect of this drug is extreme constipation. If you’ve been following Lochlan’s journey, you’ll be familiar with this negative effect. However, he won’t be receiving this drug every week, so hopefully the constipation isn’t as big of a problem as it was in the first month.

Asparaginase enzyme
Polyethylene glycol modification
e.coli
https://www.biocote.com/blog/five-facts-e-coli/

Asparaginase: Asparaginase is a protein that was originally discovered in bacteria (commonly produced from e.coli the main poop bacteria that always finds its way into lettuce) and is an enzyme that breaks down the amino acid asparagine to produce another amino acid aspartic acid. All human proteins are made from 20 standard amino acids in a particular combination, depending upon the sequence dictated by that protein’s gene. Usually a protein contains nearly all of the different types of amino acids. So if a particular amino acid is completely unavailable, then there’s going to be massive problems in synthesizing proteins, and cells are going to start dying. In human biology 9 of the 20 amino acids are considered “essential” which means our cells cannot make these amino acids from scratch and have to obtain them from our diet: histidine, isoleucine, leucine, lysine, methionine, phenylalanine, threonine, tryptophan, and valine. The remaining 11 amino acids are considered “non-essential” because some or all of the cells within our body can make them from other molecules in our bodies: alanine, arginine, asparagine, aspartic acid, cysteine, glutamic acid, glutamine, glycine, proline, serine, and tyrosine. So if L-asparaginase breaks down asparagine to aspartic acid, both of which are non-essential amino acids, couldn’t the leukemia cells just make more asparagine? That’s the catch. MOST cells in the body can convert aspartic acid back to asparagine. However, because blood cells (including leukemias) are used to being exposed to high levels of asparagine in the blood stream from our diet, they do not need to express the enzyme necessary to make asparagine. So L-asparaginase is really effective at starving leukemia cells of asparagine, while the vast majority of cells throughout the rest of the body could care less because they’ll just continue making their own. This drug has a special modification to it that greatly extends the amount of time it stays in circulation (weeks) so it doesn’t need to be given frequently and can continue to starve the cancer cells until they die a miserable death. However, the biggest risk with this drug is that our immune systems are keen on detecting and building a resistance to foreign proteins. So there is always the chance that Locke’s body will begin to recognize the enzyme as foreign and produce antibodies to destroy it. Or he could have an allergic response to the protein, necessitating that he be under close surveillance during the first few hours of receiving this drug.

Well that’s the update for now. Hopefully we will maintain this current level of abnormalcy. Also awesome news… We received several offers from some very generous and wonderful people who wanted to buy Lochlan one of the MINI pedal go-karts that he fell in love with at the children’s hospital. While people were putting in their offers, Becca’s former co-workers/friends from Dorr Vet clinic all chipped in and ordered one for Lochlan and one for Torren! Thank you so much! However, apparently the go-karts were supposed to be a surprise and I must have missed or ignored the memo. Both seem likely. I must have been too excited to listen or think about surprises.

Torren’s silly straw bouquet
Lochlan’s silly straw bouquet was more modest
Swinging!
Enjoying the sand box
Having a conversation with Torren
Everyone in our house is expected to love each other maximally

Don’t forget, the T-shirt campaign is back for a second round. If you still want a shirt and forgot to get one during the first time around, you have a few days left to order one. They’re super comfortable. Kid sizes are in the darker orange.

https://www.customink.com/fundraising/lochlan-the-lion-hearted

Love

Kevin and Rebecca

Enjoying the porch

https://www.gofundme.com/lochlan-the-lionhearted-has-leukemia

You Gotta be Kidney Me, We’re Going Home Tomorrow! (6/7/2019)

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I will lead with the best news: We are going home tomorrow! Bet no one guessed that based upon the last few posts. The doctors are comfortable sending us home now that we have a better idea about what was causing his fevers, that the fevers have mostly stopped, and that it isn’t an infection. Now that is out of the way and I can try to recap the past two days and give a little more insight into Lochlan’s funky kidney dysfunction.

Grilling me some dinner
Spying on the neighbors
She climbed all on her own
Popsicles for dessert
Trying to look cool
Torren matched the uni-leopard she got from Lisa “will likely get OA from CF someday” Turner

Yesterday, I got to spend the evening with the Torrific Torren. This was actually the first time I got to play with one of my children on their new playset. To get ready for that, I mowed the yard before I picked Torren up from Nanna’s house (and I lifted weights because I had a suspicion I wouldn’t get time for that). I got most of the lawn mowed before running into a low-lying tree stump near the playground (this was my first real time mowing the new backyard) and subsequently broke the lawn mower. I think and hope it’s just a bent/unbalanced mower blade. The engine still starts, but it sounds like I threw a blender full of change into a washing machine. Something similar happened once before when I first mowed our yard at our last house (there was a bent, black metal pole randomly driven into the ground). I managed to fix that by replacing the blade, but I never recovered the automatic propelling function or whatever it’s called when the mower sort of goes on its own. But that auto drive feature is for wimps anyway. However, if this proves to be more than just the blade, if anyone has small engine repair experience, I’d love the help. Otherwise Torren and I had a pretty good evening. She fell asleep on the car ride home, so that meant she was up until 9:30. But we ate dinner, played on the playset, had bath time (she let me wash her hair without a fuss!), she read me some bed time stories, and then we watched Bob’s Burgers and fell asleep.

Locke started a bike gang
I think his love for this kart is pretty evident
Taking a break while doing his laps around the hospital floor

On the other side of town, I think Locke and Becca had a pretty low-key day of playing and riding a sweet MINI (cooper) pedal go-kart! Locke is in love with this thing. The kart is made and sold by MINI, which means it is nicer and twice as expensive as every other pedal go-kart on the market.

https://www.shopminiusa.com/PRODUCT/2053/MINI-JCW-GO-KART/?CENTERID=4195901

We really want to get a couple of these for the kids’ birthdays this summer. What would be even awesomer, is if any of you work for MINI or know someone who does and could get us an employee discount. 😊 Even if we can’t get a discount, our kids need these, so they’ll get them.

My kids like making pretend dinner for me?
Showing mom how to play

Today Torren spent the day with my aunt Becky (the original Rebecca Maupin). Becky was a preschool teacher, so I am sure they played and learned lots today. Lochlan had a crazy busy day. He started the morning with higher intensity ultrasound imaging of his kidney to try and determine if there was a blood clot present. They did not find a clot, so the consensus is that the abnormal second renal artery that was only providing blood to the top half of his kidney was failing. So how weird is having two arteries feed into one kidney? I did some research. It’s not THAT weird. Many of you probably have an extra one, because it’s found in about 25-30% of people. The bonus arteries are known as “accessory renal arteries.” While for the most part the accessory renal arteries are innocuous, they can be of lower quality than the main renal artery (i.e., they are often narrower). This can make them more susceptible to clots and plaques. Because the accessory artery will have taken full responsibility for a portion of the kidney, then if that vessel fails, so will that part of the kidney. For the past year, particularly the day after a strenuous day of physical activity, Lochlan would sometimes have slightly cloudy urine in the morning. The cloudiness was likely due to the kidneys failing to keep some blood proteins from being excreted in the urine (abundant protein in the urine is known as proteinuria). As a reminder, your kidneys are involved in sorting out all of the waste from your blood so that you pee it out, while keeping all of the important stuff in your blood. In children, acute bouts of proteinuria isn’t uncommon and most of the time isn’t associated with any serious problems with the kidney. However, if it seems to be chronic, then there’s likely an underlying problem. Lochlan never had evidence of proteinuria at any of his doctor’s visits and it only seemed to be in the mornings the day after a lot of running around, so no one thought anything of it. However, in light of his current kidney problems, it might be reasonable to hypothesize that the proteinuria was due to the crappiness of his accessory renal artery. So while it seems like the leukemia and chemo have pushed the accessory artery into failing, it might have failed on him eventually anyway. His left kidney only has a single artery, the rest of his right kidney still appears healthy, and his markers of kidney function are in the healthy range, so I think he’s going to be alright. Obviously the doctors are going to aggressively monitor his kidneys for the remainder of his treatment though. They also recommended that he doesn’t play contact sports so that he doesn’t accidentally suffer a major kidney injury. For those who know me, that’s A-Okay in my book. He loves running, so I’m sure track and cross country will be his things anyway. Torren shows the most interest in weightlifting, so perhaps she will be our powerlifter. Hopefully not Crossfit. I’m confident that someone will do a study looking at the osteoarthritis incidence amongst all of the strength sports and Crossfit will win by a landslide. Still need some time for the Crossfitters to get a bit older. I digress.

Lochlan also had his spinal tap (the one that was originally scheduled for a week ago) and bc the doctors feel comfortable that we’ve figured out what was causing the fevers and that it’s not an infection, they started his consolidation chemo today! Becca did not leave me with the list of the drug cocktail for this phase of his treatment, so I will have to wait for the next post to provide you those details. Locke didn’t have a nap today and he rode the go-kart around the hospital floor for a good 45 minutes after mom left, so he is out cold. Tomorrow we will wake up, pack up what Becca didn’t already take home, wait for the doctors to do their rounds, and then we’re heading home to have a frickin’ Jet’s Pizza, pizza party as a whole freakin’ Maupin family (plus aunt Rachel). GoodNIGHT! Oh wait, the hospital also nominated Lochlan for Make-a-Wish. That whole process takes a few months to get interviewed and everything, and we haven’t committed on what the wish will be (Disney trip or be an astronaut are Locke’s two most likely choices). So I will make sure to keep you informed regarding that as well.

Don’t forget, the T-shirt campaign is back for a second round. If you still want a shirt and forgot to get one during the first time around, you have about a week to order one. They’re super comfortable. Kid sizes are in the darker orange.

https://www.customink.com/fundraising/lochlan-the-lion-hearted

Love

Kevin and Rebecca

https://www.gofundme.com/lochlan-the-lionhearted-has-leukemia

A Real Satchel of Richards (6/5/2019)

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Playing outside his room
Torren misses her parents
A cool window without barcoding
Early morning breakfast of champions
I’m never going to let you go mom

A few note worthy updates for tonight. So Lochlan’s ultrasound on Monday revealed that the kidney abscess was the same size as when the drain was installed. Therefore, Lochlan’s spinal tap for Tuesday was canceled and instead he was scheduled to have a more thorough inspection of the abscess and have a larger drain installed. As mentioned in previous posts, the stuff they’ve been draining out of his kidney is rather thick and bloody, so they figured that the tube might just be getting clogged up and not draining. After a lot of prodding of the interventional radiologist and anesthesiologist teams, we were able to get a scheduled time of 2 pm for the procedure. The reason we were so persistent was so that we could avoid getting Locke’s food cut at midnight (which really means like 7 pm in kid appetite time) and then having a procedure in the late afternoon. We’re super tired of having to starve Lochlan for 18-24 hours every time they say he’s having a procedure. But having a scheduled 2 pm procedure time, meant that he could eat up to 6 am! So Locke and I got up at 5 am and he had a breakfast of leftover pizza, snap peas, berries, and juice. I imagine that helped a bit with his starvation throughout the day, but surprise, surprise, I don’t think the procedure actually happened until like 4 pm. Also, as I have mentioned in previous posts, the interventional radiologists at Butterworth are dumb A-holes. The surgeon didn’t disappoint. According to Becca, after 10 minutes, the surgeon popped his head in and said something like “tube was kinked, wasn’t getting anything to flush out, removed the tube, sent him for CT imaging, got it?” and then left. Becca was then brought to the rest of the sedation team and nurses and THEY got basically the same treatment from the surgeon. They were completely confused about what they were supposed to be doing. He just left. Well, when I heard this, I stormed over and demanded to speak with one of our oncologists and that I also wanted to speak with someone from patient relations, because we are really tired of being treated like sh*t by these guys (Drs. Michael Doherty and Nik Kolicaj) from interventional radiology. If you get one of these doctors, be prepared, they’re a couple of _____. I wouldn’t have name dropped them, but this behavior needs to be corrected. They need to be called out. Interventional radiology needs to correct its culture. Your patient was a 4 year old child with cancer and you didn’t function with our child’s oncology team, you didn’t take the time to discuss what happened in the procedure to the parents who aren’t sleeping and are horribly frightened about the health and safety of their child, and in the case of Dr. Doherty, my son woke up WITHOUT a parent. What is wrong with you? But we spoke with the oncologists and they apologized and said that the sedation doctor had already contacted them about Kolicaj’s behavior. The oncologists also said they sent the CT imaging data to a pediatric urologist who was looking things over. I have a name to contact for patient relations and I will 100% be doing that, this week. First, I need to calm down because it’s really hard for me to talk about these dumb MFers without swearing.

Finally eating some healthier food
But ice cream is good too
Cruising around the halls
Being weird

In regards to his kidneys… so the ultimate conclusion is that the abscesses aren’t infections. Imaging revealed some unusual things. First instead of a single artery feeding into his right kidney, Locke has two. One feeds the top of his kidney and the other the bottom. Super weird. The doctors think that the top one might have gotten a clot and the abscesses were ultimately in response to that. Imaging also revealed that the top half of his right kidney is dead. They think that the fever has been in response to the death. While it sucks that he now only has 1.5 kidneys, a person truly only needs about a half of a functional kidney for survival. This finding does affect the plan for his chemotherapy. It isn’t clear whether there’s a clot, whether the chemotherapy caused the clot, whether chemotherapy might lead to another clot in his kidneys, whether the dead kidney might be a great future breeding ground for infection, etc. The oncologists said they’ll start him on chemotherapy in a few days, but they haven’t decided what drug cocktail, whether to stick with the original cocktail, whether to put him on milder chemo until his kidney heals more, etc. Because my dad had a blood clot a few years ago, they also are considering doing some tests for whether Locke has any genetic predisposition to blood clots. My whole genome has been sequenced, so I’ll be interested in finding out what genetic variations they’re looking for and whether I have them.

Otherwise, Lochlan has been doing some new activities this past week. He has been able to go to the big upstairs playroom and played pinball with mom, he went to the outside play area and got ice cream, he has been walking and riding a wagon around the hospital, and today he even got to drive a tricycle around!

We expect to have a lot more information over the next few days, so I’ll update once I get it. Also, the T-shirt campaign is back for a second round. If you still want a shirt and forgot to get one during the first time around, you have about a week to order one. They’re super comfortable. Kid sizes are in the darker orange.

https://www.customink.com/fundraising/lochlan-the-lion-hearted?ref=copy-link_social_desktop-campaign-page-share-top-v3&utm_campaign=desktop-campaign-page-share-top-v3&utm_content=lochlan-the-lion-hearted&utm_medium=social&utm_source=copy-link&side=front&type=1&zoom=false

Mom’s window drawing. Torren said she didn’t have enough curls lol
T-shirts!

Love

Kevin and Rebecca

As a reminder: if you’re interested in donating to Lochlan’s medical fund, please check out his GoFundMe link below. Thank you to everyone who has contributed to the fund and/or has given support to our family in other ways. We are grateful for all of it.

https://www.gofundme.com/lochlan-the-lionhearted-has-leukemia&rcid=r01-155862232411-af9263ecdb9e4925&pc=ot_co_campmgmt_w

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Dudes’ Weekend (6/2/2019)

If you still want a shirt, rumor has it that we will be reopening the T-shirt campaign. Stay tuned.

Dudes’ weekend has come to an end and I am now at home. When Becca and I switch nights, I can generally get home by 6-7pm (usually I’m coming home from work). This leaves time for a little bedtime with Torren. If it’s not too late, then I get a workout. That means shower, bed, wake up still not feeling rested due to Torren not sleeping through the night and/or our kitten Freyja attacking the window blinds, some random piece of randomness she found, or me directly. Then it’s wake up, back to work, then back to the hospital for the night where I won’t sleep because of nurses, or Locke waking up in pain, or because he’s scared, etc. I imagine the scenario looks similar for Becca. I hardly see her anymore, so I haven’t gotten a perfect picture of her routine. But during the week, she’s with Locke all day, while I am walking around at work and talking to adults. In other words, life is tough. I don’t think I’ve ever been this tired. The days are sort of “diet” reality. I’m consuming, but the flavor is muted and probably leading to brain disease. Meditation made reality more vibrant for me, but I can’t meditate anymore because whenever I close my eyes for over a minute during the day, I enter microsleep. The irony being that I struggle to fall asleep when I get in bed. I weighed myself tonight. I have also gained 14 lbs over the past month and my guts have been very upset with me because I haven’t been careful about avoiding dairy (which is in nearly every comfort food ever invented). But still I suffer less than my poor little Locke.

Magic Tracks being magical
Magical Tracks not being all that magical
Painting a wooden plane model
“Take a picture of me like this”
Having a hard time being grumpy, but still wanting love from his sister

In regards to Dudes’ weekend, it was pretty low-key. We watched Wreck it Ralph and Ralph Breaks the Internet like a billion times. Somehow, I am able to watch the same movies with Locke over and over without completely tuning the movies out. His blood cell counts continued to rise over the weekend, strengthened by the growth factor he received last week. His fever also went pretty high this weekend. I suspect it’s because of the growing neutrophil army fighting his kidney infection and stimulating healing of the wound there. However, he has also been having very loose stools (I think we will probably be discussing his bowel movements for at least the next 6 months), so the doctors wanted to make sure he hadn’t developed a Clostridium difficile take over in his intestines due to the antibiotics killing off all of the protective good bacteria. C. difficile is a bacteria that can cause a lot of intestinal problems, which can be life threatening. Drug resistant strains do exist and they can be pretty stubborn to kill, and a lot of interest has been developing around using fecal transplants to replace the diversity of good bacteria in the colon to fight back against C. difficile. While we were waiting for the test results to come back on the infection, I taught Locke about poop transplants and he got a good laugh about having someone else’s poop be used to help him make poop. I had to recommend that he get his transplant from mom instead of me because I have so many stomach issues. He also thought that was funny. The test came back negative, so thankfully we don’t have to worry about whose poop goes into whose butt in this family any time soon.

Astrolochticon. Locke wants to be an astronaut when he grows up.
Watching for lightning

Becca must have had a pretty good talk with him about good nutrition during the day Friday because he always asked for healthier food when I ordered his meals. Saturday night he asked for “green beans, steamed carrots, and dipping vegetables” for dinner. I also ordered him some meatballs for calories. It was a great dinner choice. Granted he ate 1 piece of celery and a snack sized bag of popcorn, but I consider this progress.

We don’t know when Locke will be able to come home. Apparently one of the doctors told Becca that they wanted to keep Locke on IV antibiotics for “10 days after he stopped having a fever.” If he doesn’t have a fever tonight, then today was his first day without a fever. So maybe 10 more days?… That only takes us to the middle of June… Suuuuccckkkkssss…

Other random things: Locke is loving all of the orange Lochlan’s Warriors T-shirt pics. Although it was funny when the pics first started showing up because Locke was like “I think I love this pic.” Then after a few different people posted the pictures, Locke was like “Why are you showing me all these pictures of people wearing that same cool shirt?” So he must have zoned me out when I told him what the shirts were the first time. Pretty sure he has my ADD. Locke got a transfusion today because his hemoglobin was a little low, and he was tired and moody. Locke has another follow up ultrasound tomorrow to check on the status of his kidney abscess (he’s draining ~20mL of goo per day!). On Tuesday, Locke has his make up spinal tap to check for cancer cells (he’s been negative every previous time and his bone marrow is super low, so we’re not expecting any surprises) and to get his missed dose of methotrexate from last week. After that, the doctors are going to have a plan put together for his next stage of chemo treatments. Hopefully he doesn’t have any more major issues with infections or constipation or else we have a few more months of these long stays at the hospital. Also the playset was finished today! Great work Bop and Bud. Becca also did a great makeover of the playroom. ALSO: If you still want a Lochlan’s Warriors t-shirt, it sounds like we might be able to reopen the campaign and get more printed. I will share that information when I get confirmation.

Alright goodnight for now. I am going to turn out the light and roll around in bed for another hour. Thankfully Grammy is still here and sleeping in Torren’s room, so I’ll only have to deal with Freyja waking me up.

Torren went to bed as a kitten tonight. Grammy will be the one dealing with this cute kitten waking her up tonight.

Love

Kevin and Rebecca

https://www.gofundme.com/lochlan-the-lionhearted-has-leukemia&rcid=r01-155862232411-af9263ecdb9e4925&pc=ot_co_campmgmt_w

Starving, but surviving (5/29/2019)

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It is the 1 zillionth night in the hospital. A bunch of lows and one mega high has happened since my last confession. I mean post. Becca beat me to the biggest announcement of the day, so most of you probably already know that part. I’ll save that bit for last and go through the other things that have happened.

So as a reminder, two days ago Lochlan was supposed to have the abscess in his kidney drained and have a temporary drain and collection bag installed. Because of delays and no one knowing the schedule, Lochlan went nearly 24 hours without eating. Forcing a kid to go that long without eating is awful. Even worse, despite having ultrasound to guide him, and despite the procedure only taking like 10 minutes, and despite the doctor being surprised at how little fluid he got from his attempt at draining the abscess, he blankety blank missed the main part of the abscess and still didn’t install a drain and collection bag. Just dropped the mic, didn’t come talk to me, and left the building. Listen people. If you’re hired to do a job. Do your F’ing job. If you feel like you did your job, but something weird happened, you double check your work and make sure you did your F’ing job. That’s a pretty simple motto to live by. If you have to work on a holiday weekend. You. Do. Your. F’ing. Job. So clearly I’m pissed about that day.

Then yesterday, Lochlan was scheduled to have his biopsy done early in the morning (8-9am) so that it didn’t disrupt his eating too terribly. Then 9 am rolls around and they’re like “he’s scheduled for his biopsy for 11!” So I take a break and head to work. Becca texts me at 10:30 to say that he’s being brought down for his biopsy. I rush over and sit in the waiting room. 11:30 rolls by and they still haven’t started. It’s noon before they start the biopsy. So that’s another day where 18 hours go by without Locke eating. Because of his kidney infection, his bottomed out blood cell counts, and his multiple spinal taps that showed no leukemia cells in his spinal fluid, they decide not to risk introducing an infection in his spine so they didn’t do his spinal tap nor give him his spinal methotrexate chemotherapy. I’m not sure when they’re going to do that. I’m sure they’ll make sure to starve him for a day before it happens.

Then they decide that they’re going to try again to drain the main abscess in his kidney today. So once again, Lochlan’s last meal was around 6 pm last night. In the morning they have no idea when they will be able to get him in for the procedure. Still not allowed to eat. Then at 11:30, they schedule him for 4pm! They say that he can have liquids until noon. Becca texts me this information. I do the competency math and assume that no one is going to think to give him liquids with calories or any sort of nutrient in it, and rush over with some cran-grape juice from our cafeteria because that stuff is delicious. I open the bottle and hand it to him, the nurse tells me I can’t give it to him. I say “yes I can, it is a clear beverage” she says “you can give him apple juice, which is clear, but not that” and I said “clear means no pulp, clear does not mean you can see through it” she looks at the doctor. The doctor says “I don’t know.” The nurse goes somewhere and checks. When she comes back, guess who’s right? Me. PhDs get no respect. Like I wouldn’t research this topic. I was also feeling super annoyed that they wouldn’t figure out a bit more of the scheduling ability of these surgeons so that he could’ve had breakfast. This kid is eating 1 F’ing meal a day (sorry I have been really worked up these past few days, so the F bombs are flying) because he’s essentially only allowed to eat dinner and all he can fit in his tiny hungry tummy is like a piece of pizza and that’s basically all he wants to eat. I can hardly convince him to invest the little food allowance he gets on any fruits or vegetables anymore. So he gets way too few calories and it’s all garbage food. Like what epigenetic S#$tstorm is going on inside his body in response to this diet? As if the drugs alone aren’t wreaking enough havoc on his long term health. But anyway, I head back to the hospital around 3:15 so Becca has time to go home and get Torren ready for swim lessons. At 3:30, hospital transport brings us down for the procedure. If you haven’t guessed already, the procedure didn’t start until after 5:30. Thankfully Dr. Grandpa Bud was there and he was able to go get some Jet’s pizza for Lochlan. At least if he’s going to eat pizza, it might as well be the best tasting pizza. I picked up one of those fancy juice mixes from the cafeteria in hopes that Lochlan would drink it and get some sort of nutrient load to go with the pizza, but apparently he discovered that there’s hot cocoa here, so that’s all he drank. We used to be so proud of Lochlan because his diet was mostly fruits and vegetables, with some lean meat. Now, thanks to the wonders of hospital food, his diet is sugar and grease. Hooray! Maybe the doctors can get him vaping next? He’d look so cool puffing those big ridiculous clouds while munching on his big mac and drinking mountain dew.

So many tubes, so many ouchies
Starving and waiting is all I do
Dr. Grandpa Bud has mastered the ability to fall asleep rapidly anywhere

Okay I’m done venting. Currently he’s in a ton of pain from the procedure and has a tube coming out of his back. They upped his morphine a bit, but he still seems like he’s suffering quite a bit. I can’t wait until he can feel “okay” enough again so he can be at home, develop a normalish routine, get some exercise, and get his insides scrubbed out with some green beans and broccoli.

On to the best news. Lochlan’s bone marrow biopsy results came back and… there were not detectable leukemia cells! Unfortunately I was not here when the doctors told Becca, so I couldn’t ask whether they only used fluorescence activated cell sorting (FACS; which is the primary tool for detecting the leukemia cells) or whether these results include some higher sensitivity assays. FACS has limitations in terms of sensitivity so like 1 leukemia cell in 10,000 whereas some molecular techniques could amplify that signal and pick up 1 leukemia cell in like 1,000,000 cells. BUT even if they haven’t done the molecular techniques yet, FACS is good enough for determining whether Lochlan is below the 0.01% mark for minimal residual disease. SO LOCHLAN IS IN THE GOOD (GREAT) PROGNOSIS GROUP AGAIN! Being below 0.01% leukemia cells means his likelihood of survival is >80%. So this is a huge relief. The next couple months of chemotherapy intensification are still going to suck, but at least we are going into them at a great starting place. There are still likely some leukemia cells hiding out in Lochlan’s body right now. Those remaining cells have survived some fairly intense chemotherapy (vincristine, daunorubicin, and high dose dexamethasone) so they’re going to need even more to kill them. We don’t know what the new drug cocktail will look like yet, but I will provide all of that information once we get it. For now, I think we’re in the hospital for another week or two while we figure out this kidney infection. Oh, oh, oh and I almost forgot about the new drug Locke got today… Neupogen. What is this new (neu) drug that Lochlan got and why did he get it? Neupogen is a cool name for granulocyte colony stimulating factor (G-CSF) which is a protein made by cells in our bone marrow to stimulate the production of… you guessed it! Granulocytes (the primary granulocyte type in our body is the neutrophil)! Locke’s neutrophil counts have been super low due to both the cumulative effects of chemotherapy and battling his kidney infection. Using this drug will expedite neutrophil production so that he has more defense against bacteria (like the ones throttling his kidneys right now).

Locke’s celebratory face?
Torren demonstrating what I will look like in the morning
Goodnight picture for the boys

Oh and they fixed the couch for our room, so I don’t have to sleep in this horrible recliner again tonight. Although I’m putting money on Lochlan waking up numerous times for pain and to use the bathroom, so it’s not like I’ll be getting much better sleep.

Luxury suite. Could be an awesome view, but the window detailing kills it. VARI is hiding behind the couch.

Love

Kevin and Rebecca

https://www.gofundme.com/lochlan-the-lionhearted-has-leukemia&rcid=r01-155862232411-af9263ecdb9e4925&pc=ot_co_campmgmt_w

’twas the Night Before Biopsy (5/27/2019)

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“Send this pic to mom”
Hanging with his main chicks
Snuggling mom
Smiling for a pic while on our walk
Trying to open the door to his room, but it’s a super heavy door

It is the two nights past what I declared was the millionth night in the hospital. It is also the night before Lochlan gets his 1 month bone marrow biopsy. As a reminder the results from tomorrow’s bone marrow biopsy are the most important in terms of predicting relapse and survival. We are aiming for less than 0.01% leukemia cells in his bone marrow. We are stressed and scared right now, but if the number goes above that percentage, I may never sleep again. A number above that doesn’t mean we can’t cure the cancer, but it means that the remaining leukemia cells are quite drug resistant. However, a number below that doesn’t guarantee that he will be cured, but it does predict a very good chance that cure is possible with further chemotherapy treatment. But either way, tomorrow ends the “induction” stage of Lochlan’s chemotherapy. Regardless of the percentage, every leukemia cell that remains is a major drug resistant a$$hole. That’s why the next stage is “escalation.” There will be more drugs, there may be new drugs. What exactly the escalation stage looks like, we won’t know until we get tomorrow’s results back (which will be a few days).

Other things going on with Lochlan’s failing body… Lochlan is in the hospital due to the kidney abscess that has been causing him pain. So the doctors planned on draining “the pus” from the abscess yesterday. Turns out that there wasn’t any pus in it. Or at least there was more blood than pus. What does this mean? No one seems to know. They tried culturing it to see if any bacteria grew out of the goo, but so far nothing. Usually those culturing assays take less than 24 hours, but some slow growing bacteria can take up to 72 hours. For now, the decision is to keep Lochlan in the hospital, on strong antibiotics, and hope that it clears up in the next few days. He’s still in pain, but his pee is back to a normal tint, so draining the abscess at least fixed that. For now morphine and her little friend Tylenol are masking the underlying problem so that he can move around and sleep. One other thing that has changed is that, for the first time, Lochlan’s normal cell counts have been dropping in response to his last chemo dosing. Previously his platelets and neutrophils didn’t seem to care about the chemo and continued to rise following his first dosing of chemo. This was a good sign that his bone marrow was normalizing, which allowed those cells to mature normally. By his third chemo dose, his white blood cell count was at 10K, his platelets were at 300K, and his neutrophils were at 5K, all well within normal ranges. But now we are down to ~2K white blood cells, 115K platelet, and ~600 neutrophils. All of those values are low. Chemotherapy does kill normal blood cell progenitors, so presumably this is the result of that. Why the discrepancy between how the cells responded to the first two rounds of chemo and the third are beyond my knowledge base, but my hypothesis is that the initial increase in mature cells was due more to the release of the stress of the leukemia cells on the ability of partially mature cells to fully mature. Now we’re seeing the cumulative loss of blood cell progenitors due to the chemotherapy and there are no longer many cells that are partially mature that are capable of going all the way through the maturation process. But now Lochlan once again doesn’t have much of an immune system so we have to be extra careful with his health, so it’s sort of a good thing that we are back in the hospital. It sounds like we will be here for most of this week. They even talked about us potentially being here for 2-3 weeks to treat the infection in Lochlan’s kidney. We may also have to get an expensive and non-insurance covered test to try and figure out what infection could be in his kidney (they’re still assuming that the lesion was caused by an infection). I think they’re going to do more imaging on his kidney either tomorrow or Wednesday to determine if the abscess looks like its healing, or coming back.

In non-terrible news: A lot of progress was made on the backyard playset this weekend. There are actual swings and slides now! Torren seems to love it, so it is already getting some good use. I also made a lot of progress in burning the tonne of tree branches that fell on our house this winter. To expedite the process, I have just been throwing branches in haphazardly and making huge fires in our fire pit. Is it the safest way to do it? Sure, I’ll say that it is and leave it there.

Bud and Bop at work
Working on those pull ups
First swing on the new set
A champion’s fire (it might be awhile before we finish reassembling the whole fire pit circle)

Lochlan told me tonight that he really wants his ideas to start coming back fast and leaving slow. I think this means he’s having a hard time with memory and cognition. I’m not sure if it’s the pain meds or just the chemo in general. Probably both. Although I think his statement is reflective of more cognition than he’s giving himself credit. I love this kid. He is my best friend. Whelp, it’s a big day tomorrow, I think it’s time to sleep in my super awesome recliner chair. I’m hoping for some lightning tonight. It would be amazing with the wall of windows from the 9^th floor of HDVCH.

Love

Kevin and Rebecca

https://www.gofundme.com/lochlan-the-lionhearted-has-leukemia&rcid=r01-155862232411-af9263ecdb9e4925&pc=ot_co_campmgmt_w

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Number 2? Absurd! It’s number 1! (5/25/2019)

I suppose the B-button could mean booger
Sweet logo on a letterhead from my cousin Rich
Hanging in the living room tent with mom
Grammy came for our picnic on Thursday
Family pic on Thursday

This is the 1 millionth night in the hospital (give-or-take). So as I reported in the last post, our brave hero had spent all day Tuesday and Wednesday in the hospital getting his chemo and transfusion. It took so long, because he developed a low-grade fever. The doctors let us go home Wednesday evening and said to check-in in the morning if he continued to meet the 100.3 F temperature threshold. If you’ve been following this adventure closely, I’m sure you can guess what Thursday was like. Yes, he had a fever in the morning, and yes, he had to go back to the hospital. This time they took some more samples to look for viruses and other possible infections. But they ended up letting Lochlan go home at 1:30 in the afternoon after they collected the samples instead of waiting around all day. Torren also proved how awesome of a person she is that day because when mom asked her whether she would want to go to Nanna’s house or go to the hospital with brother, Torren said “I not going to be a watcher, I going to be a helper.” As a reminder, she’s 2 (and a half). As far as I know, she didn’t get this tag line from one of her shows/movies, I think she’s just a better person than most of us.

After Lochlan, Torren and Becca got home, they did some playing outside and we ended up eating dinner on a blanket in the front yard once Grammy showed up. Once again the doctors told us to check-in the next morning (Friday) if he was still having a fever. If the fever was caused by general inflammation due to the chemo, then we would expect the fever to be gone by Friday/Saturday. Lochlan, not only had a fever all night, but his stomach pain came back. Previously we had associated this stomach pain with constipation because it mostly went away once we got him pooping. However, Lochlan was doing A LOT of pooping and it wasn’t getting any better. Sh*t. Friday the doctors were still waiting on the viral test results and the bacterial results all came back negative and Lochlan received antibiotics Tue-Thur at his previous visits, so HE WAS ALLOWED TO STAY HOME! I’m writing in caps to show the excitement that I felt then.

Torren is a great human
Not feeling awesome

Friday night was my night to snuggle Lochlan, and we did not sleep. Lochlan blames it on the lightning storm, but I’m pretty sure it was his constant complaining about stomach pain. And you guessed it, he still had a fever come Saturday morning. We ruled that my physical strength was more important for working on the playset, so Becca got to bring Locke in for more tests this morning. Locke had to get X-rays, an ultrasound, AND a CT! BUT we have an answer. Lochlan has a very large pocket of pus on the top of his right kidney. I’m guessing it has been growing there for the past couple of weeks while he was complaining about the pain on the right side of his stomach and it wasn’t noticed during the last round of X-rays and ultrasonography. But it’s now so large that it is pressing against his liver and has distorted his kidney. His pee is sort of brown so his kidney is clearly not functioning well. So, tomorrow morning Locke will get the pus drained and be put on a very strong antibiotic. Locke is in pain although the resident on duty was surprised how well he was handling it as I said he was only giving a lot of new pain faces and complaining a little. But he is allowed to start a rotation of morphine and Tylenol to help reduce that pain. He’s asleep now, but if he wakes up in pain, we’re going to hammer that back down with a bolus of burning relief. So I’m in the hospital tonight. As an aside, our room has no couch for me to sleep on so I get to sleep in a reclining chair SCORE! Becca will probably be staying here tomorrow night. And hopefully we will get out on Monday? It isn’t clear yet, but should know more tomorrow. I’m not sure how long he needs to receive the super antibiotics and I’m skeptical that we can give such bacterial kryptonite at home. But maybe Bop, Bud, and uncle Paul can finish the playset by the time we get back… wink wink nudge nudge. It sucks that Locke has this infection, but I’m glad that I have something to talk about besides poop for a change. I wonder if insurance is going to cover all of these extra tests and visits…

You have something in your eye
Bop, Bud, and Paul at work
Torren is loving the new playset
The sandbox was a popular hang out
Finally a full box of sand

Love

Kevin and Rebecca

https://www.gofundme.com/lochlan-the-lionhearted-has-leukemia&rcid=r01-155862232411-af9263ecdb9e4925&pc=ot_co_campmgmt_w

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Jammed Full of Needles (5/23/2019)

Finding some level of fun at the hospital
So bored and tired of being poked
Fun dinner Monday night
A fun and normal Monday

There’s no longer such thing as a quick trip to the doctor anymore. So all day Monday Locke was fine and in good spirits, so we figured that his chemo trip on Tuesday would be fairly straightforward and maybe only last the typical 2-3 hours that it’s supposed to last. Tuesday morning Becca arrived early to the appointment (10:30ish am) so that Locke could have one more port check. The port looked good. However, they continue to have trouble drawing blood OUT of his port, so clearly something is F’d up in the overall status of the port. Now, the idea of a port is so that the child doesn’t need to get so many needles jammed into their arms, bc that s*%t hurts and chemo and cancer both sort of slow down the whole healing process. But bc Locke’s port is failing at being a two-way port (the chemo, blood, and saline bags all go IN fine), Locke still needs to get poked not only in his chest, but also in his arms. So, that’s basically twice the number of pokes. So every time we go into the doctor, we’re torturing our child.

So after two hours of monkeying with Locke’s port and jamming him full of needles, the doctors finally got Locke’s blood sample collected and analyzed (he needs to do this so they can determine if he needs a blood transfusion each week). Turns out that his hemoglobin was low, although not as low as it tended to be a few weeks ago, so there’s clearly some progress being made in his body to generate new red blood cells. As a reminder, hemoglobin is the protein that is in red blood cells that carries oxygen from your lungs to other tissues as well as escorts carbon dioxide from your tissues to your lungs for you to breathe out. Other results were really good. Locke’s neutrophils were at 5000 per cubic mm (3000+ is normal), his total white blood cells were at 10,000 per cubic mm (also normal), and his platelets were at about 300,000 per microliter, which is perfectly normal (150,000 to 450,000 is normal range). Because the production of red blood cells depends upon the body sensing low red blood cell numbers and Locke has been receiving regular blood transfusions, it will take a bit longer for his body to fully replenish his own red blood cells. This is also why doctors will let a patient dip fairly low in hemoglobin levels before giving a transfusion. If you continuously receive transfusions, your body won’t sense the need to make more red blood cells and then you will become dependent upon transfusions.

But after receiving chemo, Locke started getting a mild fever 99.x and it got slightly higher while receiving his blood transfusion 100.x. Because of this, the doctors decided to stop the transfusion (at like 7 pm) and try again on Wednesday. So Locke and Becca went in again on Wednesday and Locke still had a low grade fever, but they gave him the full transfusion. I switched places with Becca mid afternoon so she could take Torren to swimming, but Locke and I weren’t out of the hospital until after 5:30 pm. The doctors told us not to worry about his mild fever last night unless he started showing other symptoms of illness. However, we were told to check in if Locke still had a low grade fever in the morning. So this morning Locke still had a low grade fever (although no symptoms of illness), Becca called in, and of course they want Locke to come back in for more tests. Blood cultures were negative from two days ago, but I’m guessing they will want more blood cultures from his arm and port. They also mentioned getting his sinuses checked for viruses or hidden bacterial infections. And while it is great to be super cautious, vincristine can give a fever for 2-3 days after administration. So this could all just be due to his body’s response to the chemo. But today will likely be another day of him sitting in front of a TV, eating s&*ty junk food (why do hospitals have so much junk food!?), and potentially another overnight in the hospital depending how these tests go. I’m not sure how we’re supposed to get this kid physically rehabbed when he has to spend every F’ing day in the hospital. I am still so grateful for all of the work being done to help my son, but I also just want him to play.

We’re supposed to be building his playset in the backyard this weekend. The forecast is predicting thunderstorms. With our luck we’ll be in the hospital the whole weekend. Tired. Frustrated. Scared. Sad. Mad. Grateful. Want to break things.

Love

Kevin and Rebecca

https://www.gofundme.com/lochlan-the-lionhearted-has-leukemia&rcid=r01-155862232411-af9263ecdb9e4925&pc=ot_co_campmgmt_w

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Weekends are for Recovery (5/19/2019)

The weekend went/is going well. We got out of the hospital and there have been no major issues with pooping. Lochlan still has been having some stomach pains, but a heating pad generally seems to help. He also started requesting ginger ale for his tummy. He’s basically an old person now.

Grammy (Becca’s mom) came on Friday to sleep with Locke for a couple of nights so that Becca and I could sleep. Torren didn’t sleep through the night on Friday, but she did on Saturday night! So we definitely were able to get sleep last night. Becca and I were also able to see End Game Saturday afternoon. It was good, but I think we liked Infinity War better. Like Game of Thrones, End Game felt a bit rushed. I think they could have made these final films into a trilogy. But the end of the series was a decent end to the main storyline. It’ll be interesting to see how the side stories progress after this point.

This weekend, we also placed and started filling up the sand box with sand. We had like 6 bags of sand. We need like 25. But it was rainy and these kids were happy to get some personal sandbox time during the brief sunny interludes. Next weekend we will be assembling the sweet backyard playground. Hopefully the weather is considerably less rainy. It’s amazing how cool the standard wooden children’s playground sets are now. I am quite excited to play on it myself.

So grateful for so many things right now. Grateful to live in a time where leukemia in children isn’t a death sentence. Grateful to live in a time where healthy food is available and in ample supply. Grateful to live in a house with large and beautiful trees all around it. Grateful to work at the Van Andel Institute, where I can do cutting edge research and get treated with so much love and support for both my career and for my family. Grateful to have the internet which allows me to reach so many people. Grateful to be healthy and grateful for my wonderful family. Right now some things are super sh^&ty, but our background life is good.

Other stats: Our wonderful friends in Indianapolis were able to sell 92 T-shirts to support Lochlan! They also raised like an additional $200-300 from a bake sale and car wash. I’m so sorry that we had to move away from such wonderful people. If only they would move to Michigan too! Finished reformatting one of my grad school papers (Sex hormone interactions with galectin-3 expression in skeletal development). Will be uploading to BioRxiv and then submitting to Calcified Tissue International shortly. Also have two NASA space mouse skeletal phenotype papers that are submitted and being reviewed. Working on deleting some genes in pancreatic cancer cell lines to see how they influence glycosylation for better understanding some glycan structures as disease biomarkers. So lots of science in the pipeline.

Love

Kevin and Rebecca

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Muddier than the Kentucky Derby (5/15/2019)

Locke asked to have Dudes’ days again when he gets better. I think we can figure that out with the girls
One exercise is to eat sitting up. He handled that well
Made it about 100 yards before wanting a break
To get Locke walking, he had to do a scavenger hunt for Hot Wheels
He was much more passionate about eating his chocolate donut prior to me taking this picture

While the math to figure out what night in the hospital this is for Locke is pretty easy, I’m not going to bother doing it. This will be his second night in a row related to his constipation and third night in total due to his constipation. Vincristine really messes up the digestive system. Probably even more so when that individual is a small child who has become too weak to really be motivated to walk. It’s hard to believe that this is the same kid whose legs and butt were so thick that they hardly fit into pants that fit his waist. The same kid who ran a 10 minute mile a little over 6 months ago. Now all of those pants that were tight on him are loose. Now he complains about walking any distance over 20 yards. He can hardly step up a single stair on his own. His anxiety is so high that he not only has picked his finger nails extremely low, but tries to pick our finger nails when we hold his hand. I want my son back. Which is why we’re back in the hospital. We need his guts cleaned out. We need him to sleep. We need him to be comfortable. We need him to be able to get more drugs pumped into him without worrying about fecal impaction or other major constipation related problems. So we’re here for a second night in a row to make sure he’s healthy while we clear his guts. But it’s working. He got his chemo late this afternoon. He has taken like a thousand poops. Which is obviously very uncomfortable and upsetting to him. But we were able to skip laxatives and stool softeners tonight because he became too loose. Hopefully tomorrow we can go back to a plan that results in only 1 good BM a day and keep him at a steady state.

Other than poop, I ran into one of the pediatric oncologists who runs a lab at the Van Andel Research Institute. He doesn’t work in leukemia (Ewing’s sarcoma), but his wife does and was the first doctor we met with at the children’s hospital when Lochlan was admitted. He contacted some additional oncologists to find out more about the prognosis for acute lymphoblastic leukemia in young children with the t(4;11) translocation (which is a bad prognosis in infants and adults). Those doctors said that as long as Lochlan hits the minimal residual disease goal (less than 0.01% leukemia cells in bone marrow) by the 1 month mark, that the prognosis for survival with t(4;11) is nearly as good as “favorable” mutations, which is really really good with modern drug cocktails (>80%). However, the margin for this good prognosis is very slim. Having 0.1% leukemia cells in the bone marrow is considered high risk for relapse. After 1 week of chemo, Locke was just under 1%. That’s a great initial response, but that means we killed off the easy to kill cells. As the days tick by, we’re trying to kill off increasingly drug resistant cells. While we can’t track this number in real time or as regularly as we would like because getting a bone marrow sample involves anesthesia, we do have the measurements of circulating blood cells (CBC). Lochlan had low platelets and neutrophils when we first got here, which commonly happens due to the leukemia cells screwing up the normal function of the bone marrow where megakaryocytes (platelet producing cells) and neutrophils mature. Given that his platelets and neutrophils have been steadily climbing since he started treatment and are now at normal levels, this is a good sign that the leukemia cells are being killed off and the bone marrow is returning to normal function.

Lochlan also met with a physical therapist today. She assigned some basic physical activities for us to do with him to get him moving and regaining his strength. Lochlan completed three laps around this floor of the hospital. A lap is somewhere between 1/8 and 1/4 mile, I think. He didn’t do them consecutively and he bitched the entire time, but he did it. He hasn’t walked that far in nearly a month. It won’t be too long until we get him out doing sprints. Kidding. It will be a really long time. But we will have his backyard playground by this weekend and will hopefully be able to at least start assembling it. Also good news is that Grammy is coming to cover the Lochlan snuggle shift this weekend so that Becca and I only have to worry about Torren’s terrible sleeping schedule. However, Torren has been sleeping most of the way through the night recently, so maybe we will get lucky and get “a lot” of sleep this weekend.

Oh and Torren picked out a long john donut this morning. That’s my girl.

Goodnight and hopefully this sh(*ty sh&*less streak is over.

As a reminder, if you want to order one of the Lochlan t-shirts the deadline is THIS Friday (hopefully this link works, I’m not super interweb literate):

And if you want to donate to Lochlan’s medical fund you can donate here:

https://www.gofundme.com/lochlan-the-lionhearted-has-leukemia&rcid=r01-155796928896-b8e1c963f41e4a98&pc=ot_co_campmgmt_w

Love

Kevin and Rebecca

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The Sttiest Stless Day (5/14/2019)

So we thought we were getting a handle on this whole constipation problem that Locke has been having by adding milk of magnesia on top of his lactulose (stool softener) and other laxative: Miralax. While he did have a much better sleep on Sunday night. The tummy ache came back on Monday. Then he hardly slept again Monday night (which was my night to snuggle him! Hooray…). Although the stomach ache was definitely keeping him up Monday night, he was a little less upset about that and more interested in talking to me all night about all of the foods he wanted to eat the next day (Tuesday). He wanted to start the day with mac n’ cheese of course. Then he wanted to have a hot dog. With ketchup (we spoke for several minutes about how ketchup was so good on hot dogs and why it was a critical ingredient). Also on a bun (we would have to go buy buns of course). AND relish (we could buy more relish while we were picking up hot dog buns). Then after he ate that hot dog, he wanted to eat his leftover tuna fish sandwich from Jimmy Johns. I don’t know how long we carried on about what he was going to eat, but it seemed like hours. And for those of you who have had a conversation with Lochlan, know that he likes to repeat himself over, and over, and over again. But I was much happier discussing what foods he was passionate about than Friday or Saturday night when he was up in pain all night. It’s much less stressful to be trying to sleep and having a silly conversation about his dexamethasone driven cravings, than spend the whole night with him whimpering.

But despite all of our best efforts at clearing out his super clogged pipes, we failed come his weekly checkup (although we have been making it about 3 days between check-ups due to this damn constipation) and chemo dosing (vincristine + daunorubicin). Lochlan was SO constipated when they checked him by X-ray today, that they wouldn’t give him his next dose of chemo (vincristine, as I’ve mentioned before, is the main reason he is having extreme constipation). They also checked him back into the hospital again so that they could work on pooping and hopefully get the chemo into him tomorrow. We don’t want to go too many days past the 1-week mark because then you run the risk of allowing some more drug resistant cancer cells to start proliferating. So if you think about it, at peak drug concentration, there is so much drug that even a drug resistant cell would have trouble clearing the drug and preventing it from working. However, as you get closer to the 1-week mark, the amount of drug in your system has been steeply declining due to your body’s natural ability to break down the drug. So while cells that are sensitive to the drug might still die from the drug dose, the drug resistant cells can now handle the amount of drug present. New mutations can potentially arise during DNA replication in cell proliferation, and one of these new mutations could give greater drug resistance. This cell might then not be killed off during the next dosing of the chemotherapeutic, even when the drug concentration is the highest. So we need to either kill or prevent all of the cancer cells from proliferating. I have no idea if that makes sense to any non-biologists reading this. Please ask questions. Part of why I want to write these is to share knowledge with people who might not understand everything that goes on during cancer. And I don’t spend a whole lot of time trying to explain complex scientific processes to non-scientists. So this is now my main medium for developing my ability to communicate. It would also probably help if I edited these posts before sharing them. But right now, I am a scientist with a full time job, a need for exercise to maintain sanity, a wife and one healthy kid who need me to be attentive and present with them, and a kid with cancer. If this whole blogging thing works out, then maybe in posts during the less intense chemo periods of Lochlan’s treatment, I’ll spend more time writing and revising these posts. But there’s too much action and not enough time to do everything.

When I stopped in the hospital to visit with Locke and Becca, Locke had recently been given another dose of milk of magnesia. He had 3 small and loose BMs while I was there. I stayed with Locke while Becca ran home to pack an overnight bag for herself. Right as Becca was getting back to Locke’s room, the nurse returned with an enema kit. I was like “whelp! Got to go pick up our daughter!” and in reality I was getting close to running a little late by the time Becca got back, because I needed to pick up Torren from Nanna’s and get back to our house so I could talk to one of the guys from the restoration company who is going to fix the parts of our house that were damaged by this winter’s crazy ice storm. A winter ice storm that did like $11K of damage to our brand-new house and a kid with cancer. It has been quite the year so far. I’ll pass on whatever disaster awaits us in the second half of the year. Or maybe the year will balance itself out with great things in the second half.

But there were a couple of good things from today’s visit to the hospital. 1. Locke’s port looked a lot more healed. 2. Locke’s platelets AND neutrophils are at low-normal levels! There are now enough neutrophils to help protect Locke if a potentially disease causing bacteria managed to slip into his blood. The good neutrophil count is also why the doctors thought Locke could receive an enema (low risk of damaging the rectal tissue, which would allow bacteria to enter the blood). So he is still in the process of removing the clog, but it seems like enough progress will be made by tomorrow to get his chemo. Tonight, Becca will keep him company and he asked me to bring in donuts tomorrow morning when I visit. He likes the plain, frosted, chocolate donuts and hasn’t gotten into any of the delicious cream or custard filled kinds yet. He has had their gooey goodness, so I don’t know what his deal is in regards to donuts. Becca wants a bear claw. Torren will go with me to pick them out, so I’m sure she will pick something with a ton of whipped frosting on top. I think all donuts have dairy in them, and my own guts won’t do dairy, so I will have to pass :*(

Tonight while I was eating dinner (and Torren was doing her usual run around and do anything but sit and eat dinner) I realized that she was looking at a picture of a family on a children’s craft book and there were tears running down her cheeks. I asked her what she was sad about and whether she was sad about brother, etc. she awkwardly dodged every question like you might expect from a moody teenager. So I felt so sad because I am pretty sure that she was crying because of her brother being sick and/or everyone being busy and at the hospital all of the time. She also took a huge and loose poop in her diaper, so it might also be related to that. But it was more tearful and awkwardly avoidant than any poop I’ve ever seen her take. She’s a hide-in-the-corner and turn bright red in the face kind of pooper. I held her and talked to her a bit more about what’s going on with brother and how we’re all sorry that we have to be at the hospital all of the time and that we all need to work really hard to help brother get healthy and back to normal again. She snuggled in close and when I asked if she understood and she said “yes.” So maybe I’ll have to remember to do more discussing and explaining with her on a regular basis. Torren seems unusually smart (which every parent says about their kids), so she might actually have a pretty good, but general idea about most of the things I discuss with her. Tonight she again asked to meditate (I’m liking this nightly ritual that she’s establishing) so we did that, read some books, and I passed out hard for about an hour while trying to sing her songs. Thankfully, she eventually gave up and fell asleep herself.

But it’s 10:15, all is quiet, and I am exhausted. Goodnight everyone. I’ll update again as soon as I can. Also, Dr. Bones is still missing and searches aren’t turning him up in the hospital. I’m not sure I’ve ever described Dr. Bones on here, but he is our Halloween decoration, turned elf-on-the-shelf, turned year long house mascot that likes popping up in weird places and travels everywhere with the children (particularly if they’re sick). I forgot to bring him home during our last visit to the hospital. Apparently nurses and cleaning people are really good at getting lost toys returned to the families who left them. I am suspecting that a well intentioned, but wildly misguided, individual saw our creepy skeleton overlooking the bed in a children’s cancer ward, and thought it was maybe a touch bad omen feeling and tossed it. Currently grandpa Bud has a similar looking skeleton coming in the mail. It’s hard to tell from pictures how close in detail the skeleton is. One other issue is that Torren had previously bitten off several of Dr. Bones’ fingers. I don’t remember which ones. If the new skeleton is a convincing Dr. Bones replacement, I might suggest to the kids that Dr. Bones spent a few nights at the hospital to get his fingers repaired. Seems reasonable. Thanks again everyone for everything. If any of you can figure out a way to sleep for us, that is what we need the most of right now.

Love

Kevin and Rebecca

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A Constipated Mother’s Day (5/12/2019)

Sorry for the delayed update, but it has been a Sh$&ty weekend. Or lack of Sh&%ting weekend may be more fitting. So thankfully our overnight stay at the children’s hospital on Thursday night was just a single overnight stay. Locke’s port looked healthy, although the wound was closing slower than expected. The wound was cleaned and reinforced using steristrips. Then Locke’s blood work on his slightly lowered sodium level showed that sodium levels were back to normal. So we were finally cleared to leave around 3pm. So I packed us all up as fast as I could and we went home again! But our house mascot, Dr. Bones didn’t!! Still trying to figure out if he made it into a lost and found.

However the big bummer of the weekend was that Lochlan had massive constipation. He hardly slept Friday OR Saturday night because of the pain in the tummy and needing a warmed up heating pad. He had stool softeners, a laxative, and high fiber food, but nothing would come out. Sunday morning, we checked in with the hospital and they told us to try milk of magnesia, wait a few hours, then call back if things didn’t get better. Well I gave him the milk of magnesia and he calmed down within like 20 minutes and slept for several hours. He still didn’t poop when he woke up, so I gave him some more scoops of poop pudding and a constipation massage, then finally several hours later, we had a BM! Here’s hoping we all get some sleep tonight. As for me, it is back to work tomorrow… Going to feel weird I expect. But time to hang out with Becca! Kids are both asleep for now!

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Return to the Hospital (5/9/2019)

What night in the hospital is this? 12^th? This is the 12^th night in the hospital. I think that our lives have slipped into some sort of overly dynamic equilibrium. Or maybe we’re just confused about where the equilibrium point is? I mean, our kid has cancer. While finding out that his bone marrow biopsy was great, is that a high? Can you have a high when your kid. Has. Cancer? I mean, certainly there are still lower lows. Finding out about Locke’s translocation was a lower low. Today was not quite as low as that low, but still a lower low relative to the surrounding low. Well first with the good news (which most of you saw yesterday).

Lochlan’s bone marrow results showed less than 1% leukemia cells after 1 week of chemotherapy! That’s a good response. The first question most people want to know is, what percentage did Lochlan start out with? I actually don’t know the exact percentage. What I do know is that the minimum percentage of leukemia cells for diagnosing ALL is 20% so he had at least 20% to start out with… The next question is, how many cells are left? So 1% leukemia cells = Total number of leukemia cells divided by the total number of bone marrow cells times 100%. So if you had 100 total bone marrow cells, then 20% would be 20 leukemia cells and 80 normal bone marrow cells (20/(20+80))x100% = 20%. Decreasing this number to 1% could be due to just decreasing the number of leukemia cells, while keeping bone marrow cells constant so about 0.8 leukemia cells and 80 normal cells (with rounding errors, I don’t have a pen to work out the math and I’m not committing the time to the algebra right now and most people reading this aren’t going to be super anal about it). OR in a highly unlikely scenario, you could increase normal cells without changing the number of leukemia cells and have 20 leukemia cells and 1,980 normal cells. The third scenario is that you decrease BOTH the number of leukemia cells AND the number of total bone marrow cells where the numbers could really be anything. Due to the non-specific nature of vincristine and daunorubicin (they murder proliferative cells), my bet is that both the normal and the leukemia cells were hit, leading to major losses in TOTAL (not %) leukemia cells in the bone marrow, more than is reflected in the 20 to 1% change. Our goal is not 0% leukemia cells as this could be 0.00000001% and still be detected as 0%, but our goal is 0 total leukemia cells. A single drug resistant, POS (that’s Piece Of Sh$%) leukemia cell could restart the whole cancer expansion in the future. That’s not acceptable. But since it’s very difficult to ascertain total numbers, percentages is what we will work with. But I think the technology is good enough to reliably detect something like 1 leukemia cells in a million total cells. That’s not perfect, but it’s considered good enough. So we’re getting closer and the results suggest that the vast majority of the cells aren’t drug resistant. As an aside, the total mass of bone marrow in the human body is about 4% of the total mass of a person. So Lochlan, weighing about 37 lbs now (16.8 kg) has about 1.5 lbs of bone marrow. So using some super dirty and not accurate math, there was like 0.3 lbs of cancer cells at diagnosis and now there’s like 0.015 lbs of cancer cells left to kill.

The other additional good news is that Lochlan had a really fun day of playing yesterday. We played all day. We probably should have made him have a nap, but it had been so long since he was able to just play, that we didn’t even think about it. We even forgot that Torren had swimming class. It was a good day.

Then this morning Lochlan woke up (7:30 am) with a stomach ache on his lower right side. Usually a poop pain is the lower left side. The lower right side carries the risk of being appendicitis, so it was more concerning. Just in case it was gas or a poop, I gave him a heating pad and let him rest on the couch after we woke up. He didn’t seem warm to me when I got him up, but the pain continued and he had a low grade fever around 9 am. We called the hospital to get advice and they told us to remove the heat pad and take another temperature after an hour. However, after about 40 minutes a nurse called and said that the oncologist on call suggested that Lochlan come into the ER if he still was experiencing pain. He was, so we brought him in at around 10:30 am. At about 11 am, they took an X-ray and saw that he had a bunch of poop in his system, but also a slight enlargement of his liver (which happens with chemo and leukemia). So around 11:30 we also had an ultrasound to get a better measurement of his liver and spleen and blood flow through them. Then we were left alone in our ER room until 3 fucadslkfnaslntING PM! With no additional information. Then the ER doc came in and was like “yeah we’ve been exchanging calls with a nephrologist (pee and kidney doctor) for the past few hours sorry, we are going to be checking Lochlan into the hospital because his sodium levels were a few points lower than when was checked out. His liver values are all fine and the liver enlargement is pretty minor so no worries there” So at this point, neither of our kids has eaten or had anything to drink. I entered the ER after spilling a pop on myself while driving, which was then dry but sticky. And we were just super cranky because leaving the parents of a child cancer patient in the dark for hours is the stupidest sh*$ in the world. Oh yeah, and THEY DID NOTHING TO TREAT HIS CONSTIPATION, NOT EVEN GIVE HIM HIS NORMAL STOOL SOFTENER OR LAXATIVE. So annoyed with the HDVCH ER right now. Plus, my money is on that the low sodium levels have something to do with him being on IV saline for 1.5 weeks and living on a diet of sausage, pancakes, pizza, tuna fish sandwiches, and nachos, then switching to no IV and a healthy diet had a lot to do with it. BUT when setting Lochlan up to take blood samples from his chest port, it turned out that his port was not healing as fast as it should. So now Locke and I are here, in the hospital overnight. He gets his port checked out tomorrow and then the surgeon will decide what to do. So I have no idea. They could remove it, they could adjust something, they could leave it, no idea. Either way, we are here for at least all of Friday and I am going to guess all of Saturday. Hopefully not all of Sunday. I just want my kid to play and be happy. I hope that this port can heal and everything will be fine. I’m tired. Time to “sleep.”

Love

Kevin and Rebecca.

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The First Night Back Home (5/7/2019)

This is the 1^st night NOT in the hospital!!!! We all slept through the night without too much interruption from nurses and Lochlan did not have a fever. This suggests that either the original sinus infection is cleared or that the oral antibiotics are suppressing it as effectively as the IV antibiotics. I’m pretty sure that the original infection is cleared, but the doctors want to keep him on absolutely horrible tasting antibiotics for at least another week. But the lack of a fever was the only qualification we needed in order to go home today.

While in the hospital today, we didn’t really do much of anything except wait for the doctor to give us the green light to leave. Becca and I took turns bringing our things to the car (we had A LOT of stuff that we had gathered in our room over the past 1.5 weeks). Locke pooped again, so that has been every day since he started! Once a day is our goal throughout treatment. Unfortunately that means stool softeners and laxatives, which keeps the number of oral medications fairly high. Another random dietary issue we also need to take into account is that Lochlan craves tuna sandwiches. Unfortunately, a 4 yo shouldn’t have a lot of tuna sandwiches due to the accumulation of mercury. So that’s going to be a craving that we cannot always fulfill. Although mercury can be toxic to immune cells, so maybe some would be toxic to the leukemia cells? It doesn’t look like there are enough studies suggesting either direction (pro vs anti leukemia cells) or related specifically to B-cell ALL in children for me to be convinced about a potential effect. But there are publications looking at omega-3 fatty acids and suggesting that those are good for some of the side effects of chemotherapy and could maybe kill ALL cells. So some tuna stays.

Lochlan was in a pretty good mood today once a nurse told him that he was definitely going home. It was the first time he actually talked to a nurse beyond more than answering a yes/no question (which he only answered after being prodded). The nursing staff at the Helen DeVos Children’s Hospital was super patient and wonderful throughout our visit. Some were better than others at being stealthy during nighttime health checks, but all were kind and helpful. The hospital in general is awesome. They had an expansive selection of toys that kids could borrow in their rooms (we had a Wii and additional Magic Tracks) and we even got $32 in cafeteria vouchers every other day. Because of the awesome meal train through our friends and co-workers, we didn’t have to depend upon the $32 to feed us for every meal, so we were able to splurge on better food options like sushi. All of Lochlan’s food was free and of high quality as well.

We managed to get out of the hospital by around 1:30 and headed home to open some care packages and celebrate. Grammy and Bop did a great job taking care of our house. They even fixed our fence and built a large sandbox for the kids. Nanna and Bud are buying the kids a playground, so our yard is going to be pretty awesome. Which is good because Locke is going to have a very crappy immune system for a long time so won’t be able to go to public playgrounds. Due to the dumb shits who have been conned into believing that vaccines cause autism (the guy who published the first paper MADE UP THE DATA), it’s also likely that Grand Rapids is going to get a measles outbreak in the near future. That would kill Locke. So if your kid doesn’t have a measles vaccine… please keep your child miles away from mine. Better yet, vaccinate your kids. And tell your kid I’m sorry that you’re ambivalent about killing babies and kids with cancer. The one thing that has made me angry throughout this process is the anti-vaccine parents and having to FEAR a measles outbreak KILLING Lochlan. Everything else has just made me scared and sad. Cancer is a freak horrible genetic accident. Measles should be entirely avoidable.

But right now, I am happy. I am home with Lochlan, Torren, Becca, our cats Freyja and Orion and our fish Minnie, Goo-Gah, and Nee-Nah. I have trees, grass, and fresh air. I’ll take the rest of the week to help Becca establish a good routine with the kids and head to work next week. We’ve won the first battle. We don’t have the bone marrow biopsy results back yet, but his spinal fluid is still clear. I’m hoping that the biopsy has great results, but either way the war continues. But we’re fighting. Every day we are fighting.

Love

Kevin and Rebecca

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The Final Night at the Hospital (5/6/2019)

This is the 11^th (and likely final) night in the hospital. As anticipated by Locke’s obsession with cheese pizza last night, this morning was a bit of a train wreck once Locke found out that he wasn’t allowed to eat until after his procedures (spinal tap, chemo, and bone marrow biopsy). So we spent the first 4 hours of our day trying to comfort Lochlan as he cried about how cheese pizza would make him all better. After the first hour he also began to include tuna fish sandwiches and nachos. Lochlan has never really craved any food item (other than chocolate milk), so this was definitely the dexamethasone talking.

The procedures took place at 11 am and everything went mostly on time and we were back to the room by 12:15ish I think. One of the doctors came by and confirmed that we could leave tomorrow afternoon as long as Lochlan doesn’t spike a fever during this switch over to oral antibiotics. So far so good on that front. However, the new oral antibiotic tastes like bubblegum mixed with battery acid and is a fairly large volume (7mL). Lochlan was tough through the first two times, but the third dose was pretty rough. We will need to figure out a better way to mask the flavor of that medicine. It won’t be for forever, just for another week or something. It will also help that we will be in control of when we give him his meds. Due to schedule switches and routines, they wouldn’t give Locke his bedtime meds until after 8pm. Even without chemo, Lochlan is pretty sound asleep by 7:30 most nights. So I’m not horribly surprised that the third dose at 8:30pm was a battle.

For those interested in Lochlan’s cravings today. Rest assured that they were all satisfied. At lunch he ate both a personal sized cheese pizza AND a tuna salad sandwich. Then for dinner I got him some chicken nachos from Qdoba AND he ate some pasta with meat sauce that was one of our meal train dinners. We will probably need to work on restricting his eating a bit now because he has been eating until his stomach literally feels full from the outside. It’s hard here because we are in one room, so there is food all around us at all times so he’s constantly looking at it. At home this should be easier.

Emotion wise, I think today was a little harder because we know that they’re collecting samples to assess how well the chemotherapy worked during the first week. Studies suggest that the earlier a kid goes into complete remission, the better the outcome. So the best case scenario at this point would be that almost all of the cancer cells are gone or at least are at such low levels it’s difficult to detect them in his blood and bone marrow. That wouldn’t mean all of the cancer is gone, so we would have to continue to hit him hard with chemo (especially due to the particular mutation that is driving his cancer) to hopefully kill off all of the cells and then hope that there aren’t residual cells that have drug resistance. Every cancer cell needs to die. He doesn’t need to be at complete remission after the first week, but we definitely want to see that result by the end of the first month. We should have test results back either tomorrow or Wednesday. So now we just painfully wait. But at least starting tomorrow evening, we will be doing that waiting as a complete family, at home.

Grammy sent a picture today showing that a few care packages have arrived at our house. Lochlan is super excited to get home and open them. As he was drifting off to sleep, he said that he is going to dream about diving into a giant package of presents at home. Given that this kid used to only talk about dreaming about “playing with his cars” or “playing with transformers” etc., this is a major creative step forward.

Well time to enjoy my last night on this luxurious couch. I hope everyone rests well tonight and hopefully there’s only good news over the next couple of days.

Love

Kevin and Rebecca

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The Cravings (5/5/2019)

This. Is. The. 10^th. Night. In. the. Hospital… The night of the dawn of the day of the appetite. We woke up at about 7:30 am and Lochlan had a craving for sandwiches. But like earlier in the week, the hospital room service doesn’t serve sandwiches for breakfast. So I went on a quest to find a sandwich in one of the numerous hospital cafeterias. Obviously no one was serving up a fresh sandwich, but luckily one of the cafeterias had premade sandwiches. Doubly lucky was that one of the sandwich options was chicken because Lochlan cannot eat sandwich meat until he has a functioning immune system (Sometimes sandwich meat companies like to spray listeria contaminated saline all over their meat to keep it extra fresh). But the trip was also a good excuse to get some better coffee and fresh squeezed orange juice. Slightly better coffee at least. I mean, there’s no barista in the cafeteria to suffer my chronic indecisive umms because I cannot make up my mind what I want or remember what grande means. That’s half the fun of getting good coffee.

After breakfast, mom headed home to spend the morning with Torren. While they were gone, Locke took a really long nap and I did a buttload of meditation. Meditation has changed my life. Other than the love and support we’ve been receiving from friends and family, it’s the one thing keeping me together. Maybe one day I’ll dedicate an update to it. If you don’t do it, you might want to consider starting. When I was done, I closed my eyes to think on the recliner. I heard a noise at the door and thought another nurse was going to come in and start asking questions or something so I pretended to be asleep. Turns out it was actually Aunt Rachel coming to say bye on her way back to Ohio. She left a note to say goodbye to Locke, which is how I found out.

Shortly after Rachel must have left, one of the team doctors came in. She said she was concerned about letting Locke go home before we could be sure that he’d be fine on oral antibiotics after taking him off IV. So she tacked one more day onto our stay. Now we are going home Tuesday. At least until they change their minds again. The good news is that Locke really hates the taste of the new oral antibiotic. Win! But he’s a champ and managed to suffer through it for us.

Once the doctor left, Lochlan asked for some cheese pizza, broccoli, oranges, and a cookie. So I put the order in and we played some Mario Party on the Wii. Lochlan was fanatical about the cheese pizza. So much so, that even after he finished his personal pizza, he spent the rest of the day spontaneously mentioning how much he loved cheese pizza and how he wanted cheese pizza for morning dinner (which I’m assuming is breakfast). Like for 5 hours straight. But he was in a really good mood the rest of the day, so I’m all for whatever he wants to obsess about. He’s going to be pretty disappointed when he can’t get pizza for breakfast and even if he could, he’s not allowed because he has to be sedated for his chemo, spinal, and bone marrow biopsy in the morning. But he can have it for a late lunch.

This afternoon was some of the happiest I’ve seen Locke in over a month. So that’s a really good thing. He’s still incredibly anxious to get home, so thankfully there’s only a couple more days until then. He also pooped TWICE today. So great work with those poop prayers. Maybe take the day off so he can save his energy for next week. Thank you again for everything. We couldn’t do this without you.

Love

Kevin and Rebecca

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Prayers for Poop (5/4/2019)

This is the 9^th night in the hospital. I think this update will be brief compared to some of the previous updates. This is because 1.) I am crazy tired bc I slept at home last night and our kitten Freyja spent the whole night attacking the blinds on our window and 2.) I spent the first half of the day at home which was primarily eating breakfast, doing a sticker book with Torren, and lifting weights. The real action apparently happened over here, where Locke woke up at 4 am and decided he wanted pizza (dexamethasone brain). Luckily, we didn’t finish his pizza from the night before so Becca was able to fulfill his request rather easily. I also gather that Locke finally took a poop this morning. Vincristine apparently causes serious constipation, so the doctors have been getting worried because Locke hasn’t pooped in several days despite taking a stool softener and laxative. He’s due for more vincristine on Monday, so there was an imperative to get the doody done ASAP. It was funny because one of the doctors came in after I got there and said that Locke’s poop was the talk of rounds that morning. Apparently Grammy asked for some poop prayers on FB, so I guess God must take these types of prayers super seriously.

Locke was once again happy to see his sister this afternoon and Torren was happy to bring some spark to this generally low energy party. The child life specialists told Locke that they could bring him markers and he could color on the door’s window. Becca and Torren colored on the window, but Locke was not interested. But Becca did an awesome Pokemon drawing that Locke requested.

When the doctor stopped in to talk about Locke’s bowels, she also told us that because Locke’s blood cell counts were looking so good (neutrophils and platelets continue to elevate despite the chemo), that it was likely that we would get to leave Monday night. I’m skeptical and think it will probably be Tuesday because I’d think for Monday they’d have to get him into the procedure room like super early in the morning. Based upon this past Monday, I give that a really low probability of happening. But look what happened in the Kentucky Derby today, so maybe I’m being overly skeptical. But either way, this beats what we were anticipating based upon discussions at the beginning of the week after Locke’s cytogenetic screen. I was thinking more like 5 more days or something. Hopefully everything goes smoother than Locke’s poops and we get this kid home. I’m pretty sure that if Locke were to have a Make-a-Wish, it would just be to go home.

Okay, it’s time for sleep. Thank you for all of the love. We love you.

Kevin and Rebecca

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Dad’s Night Home (5/3/2019)

It is the 8^th night in the hospital. At least it is the 8^th night for Lochlan. I came home after dinner in order to put Torren to bed, then lift some heavy weights and play with Torren in the morning before heading back to the hospital. Torren has clearly missed me and was very sweet to me when I got home. It’s easy to get so caught up in grief, that you forget about the other beautiful things in your life. So I think it was good for both of us that I spent a night with her at home.

Lochlan started the day with a huge breakfast of sausage, scrambled eggs, pancakes, and a banana (dexamethasone is a hell of an appetite stimulant). Lochlan was hilariously eating the breakfast sausage and while moaning said “they made this really good.” Becca went home for a few hours to check out some garage sales with Torren and Locke and I went right back to sleep after breakfast. We woke up to discover that Bop and Grammy were in the room and Nanna showed up shortly after. Locke did not want to wake up. Locke was also back in depressed mode. There were presents for him, but he didn’t want to open any, he just wanted more band aids (his weird coping mechanism) and to sleep. During this time, the doctor came in and he was set up with his newest drug: L-asparaginase. This drug had to be given through his IV for 2.5 hours and he had to have heart and blood pressure monitoring throughout the administration, so this obviously didn’t help his mood.

So what’s so special about this drug compared to the others? First, if you look at the last letters of a drug, it can give you some super basic information about the type of drug. If it ends in -ase, it is a protein that has an enzymatic function (enzymes DO things, like take one type of molecule and break off a piece of it or add something to it). Other common endings you might see in cancer: -ib, these are small molecule inhibitors of enzymes, most commonly kinases that are hyperactive in cancers (e.g., erlotinib an EGFR inhibitor); -mab, these are antibodies (e.g., Trastuzumab a HER2 inhibiting antibody); So L-asparaginase is a protein that was originally discovered in bacteria (commonly produced from e.coli the main poop bacteria that always finds its way into lettuce) and is an enzyme that breaks down the amino acid asparagine to produce another amino acid aspartic acid. All human proteins are made from 20 standard amino acids in a particular combination, depending upon the sequence dictated by that protein’s gene. Usually a protein contains nearly all of the different types of amino acids. So if a particular amino acid is completely unavailable, then there’s going to be massive problems in synthesizing proteins, and cells are going to start dying. In human biology 9 of the 20 amino acids are considered “essential” which means our cells cannot make these amino acids from scratch and have to obtain them from our diet: histidine, isoleucine, leucine, lysine, methionine, phenylalanine, threonine, tryptophan, and valine. The remaining 11 amino acids are considered “non-essential” because some or all of the cells within our body can make them from other molecules in our bodies: alanine, arginine, asparagine, aspartic acid, cysteine, glutamic acid, glutamine, glycine, proline, serine, and tyrosine. So if L-asparaginase breaks down asparagine to aspartic acid, both of which are non-essential amino acids, couldn’t the leukemia cells just make more asparagine? That’s the catch. MOST cells in the body can convert aspartic acid back to asparagine. However, because blood cells (including leukemias) are used to being exposed to high levels of asparagine in the blood stream from our diet, they do not need to express the enzyme necessary to make asparagine. So L-asparaginase is really effective at starving leukemia cells of asparagine, while the vast majority of cells throughout the rest of the body could care less because they’ll just continue making their own. This drug has a special modification to it that greatly extends the amount of time it stays in circulation (weeks) so it doesn’t need to be given frequently and can continue to starve the cancer cells until they die a miserable death. However, the biggest risk with this drug is that our immune systems are keen on detecting and building a resistance to foreign proteins. So there is always the chance that Locke’s body will begin to recognize the enzyme as foreign and produce antibodies to destroy it. So it is currently only scheduled to be given once.

Becca and Torren showed up around when the L-asparaginase was finished being given. Upon seeing his sister again, Lochlan went from depressed and wanting to sleep, to smiling, chatting, and opening presents. It was like a totally different kid. After she went back home with Grammy, he became a bit more lethargic and cuddlier, but he smiled and made a few jokes and seemed so much happier. I need to get this kid home to his sister. We still don’t have a return date, but it will be after Monday. He’s getting hit HARD on Monday (vincristine, daunorubicin, methotrexate, and dexamethasone) so I think they want to monitor him for a few days for blood transfusions, etc. So hopefully we have a week or less left in the hospital. For good news, his neutrophils were at 500! Neutrophils and platelets have been steadily climbing despite the chemo (although I expect everything to plummet next Tuesday/Wednesday). Total WBCs are realllllly low as expected and a couple days ago his circulating leukemia cells were around 2%. So getting super low.

Well it’s super late, I need to go to bed in my own bed (which is now our cats’ bed). Once again, thank you everyone for everything. Everything is helpful, even simple kind words of support. Our friends from Indianapolis also designed and have put together a special Lochlan T-shirt drive. The shirts are super awesome, I can’t wait to get mine. There’s a picture in this update. The website is here: https://www.customink.com/fundraising/lochlan-the-lion-hearted. Keep the lion themed items coming! The lion is his spirit animal! Lion-hearted is his Viking name!

Love

Kevin and Rebecca

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The End of the First Week (5/2/2019)

It is the 7^th night in the hospital. It’s hard to believe that tomorrow marks a week from when we checked into the hospital. The crazy thing is that I’ve been in a hospital for a whole week and I still have a cough. That’s my attempt at a joke following the devastating post I made yesterday. I thought it was funny when I told it to Becca, but I think there’s a good chance it isn’t carrying a lot of comedic weight in this medium. But seriously, the germs that the kids picked up that started this whole fiasco were crazy potent. And the air in this hospital is so dry. Because we came in with germs, we’re not allowed to get our own water or leave this room much (Locke isn’t allowed to leave except for medical procedures) because we are considered a threat to the safety of the other kids. I totally get it, but it’s just another layer of suckiness to this experience. They told us we won’t ever be cleared to walk around the hall.

Nothing really new to report regarding Lochlan’s diagnosis/prognosis. I’d say that the day was not as terrible as most of the other days. Lochlan was still sad and wanted to leave, but there were no breakdowns. Lochlan was still resistant to taking his oral medications, but no worse than normal and sometimes slightly better. Lochlan was super tired because the drugs are wiping him out so he was very cuddly all day. He had to get a blood transfusion because his hemoglobin levels dropped today (hemoglobin is the molecule that transports oxygen from your lung to the rest of your body and transports carbon dioxide from your body to your lungs so you can exhale and increase global warming. Sorry I don’t mean to make light of climate change, but cynical humor helps me cope. But seriously, if we could get all politicians to stop yammering about nothing all the time, might we make some improvements to the climate? Food for thought…)

I think I mentioned previously that Lochlan has been wanting to go to Grammy’s house so that he can play with the light up cars that she has (Magic track). The hospital actually had some magic track, which kept Lochlan entertained yesterday, but he was upset because they didn’t actually have the light up cars. Well mom pulled through today and got him his own set. We set it up to go under and around his bed and I set up all of his other toys as race spectators. I’d say he had legitimate fun for at least an hour. That was a win.

Also realizing that we have ourselves been on bed rest for the past week, Becca and I took some time to get some exercise. It felt good to just drown myself in some Wardruna and sweat for 30-40 minutes. I think we will do a better job of self-care over the next week.

Thank you all again for the love, support, care packages, food, and just everything. It has been so much help in so many ways. Lochlan has loved all of his presents. Tomorrow we get our first meal from the food train, so I’m pretty excited for that. Lochlan starts a new drug tomorrow (L-asparaginase) which carries a low risk of allergic response. I’ll go more into what this drug is for and what it does tomorrow. For now I need to assemble my luxurious couch bed and then meditate. Thank you again and we love you.

Kevin and Rebecca

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The Worst of the Bad News thus Far (5/1/2019)

This is the 6^th night in the hospital. Let’s start with the good stuff. Lochlan slept until 8:30 am! AND he wasn’t snoring, so that congestion seems to be completely gone. Great job antibiotics. He will, however, be staying on antibiotics for the foreseeable future because he has almost no functional immune system. I wonder if they can give a healthy fecal transplant once he’s healthy. Probably not, but someone must be doing research related to that. Also good news is that Lochlan’s platelets and neutrophils have been climbing since we started chemotherapy on Monday. For reference Lochlan had ~65,000 platelets per cubic millimeter before starting chemo (healthy is > 150,000) and is now at 115,000 per cubic millimeter. For neutrophils (the cells essential for fighting bacterial infections, which are some of the most lethal infections to the immune compromised patient) Lochlan had 0 per cubic millimeter for the first four days we were here. That count was up to 30 yesterday and 100 today. Healthy is >1,000 per cubic millimeter, so we’re not even remotely close. The reason why his platelets and various immune cells are so low is because the cancerous cells have essentially taken up the entire bone marrow and the bone marrow is where the immune cells originate. So once the cancer cells are being killed, there’s more space for the normal cells to grow. Our doctor described chemotherapy as sort of being like Round-Up, cancer cells are the weeds, and normal bone marrow cells are the flowers or grass. So seeing these numbers start to climb right away suggests that there were still some normal cells still in the bone marrow that had a little breathing room to begin functioning a little more properly. They also did a CBC and the immature cells are no longer detectable in his circulation. Which is also a good sign that things are heading in the right direction.

Also good news is that Lochlan went another day without having a fever and he ate really well for breakfast and dinner. That had to feel good. He was however still really tired and clearly depressed for most of the day. But he was really wanting to play with these particular cars that he usually plays with at Grammy’s house and the HDCH had them! Well at least had the right track, they didn’t have the light up cars like Grammy has. BUT it did get him out of bed and distracted enough to play with a child life helper while mom and dad went to get coffee and walk around to discuss what the plan was for the next few days. We both have spent most of the past 5 days in bed or in a chair and need to start thinking about getting exercise to boost our spirits.

Lochlan and I also got to have a dudes’ day for the second half of the day/night. Many of you are familiar with these events from when Lochlan was an infant and we got to spend a whole day together every week. This usually involved me spoiling him and taking pictures of it and posting it on FB. We haven’t had many of them since I obtained my PhD because Becca was staying at home with our now two kids. So it was good to hang out, watch a movie, play video games, and eat pizza (well he ate pizza, I ate sandwich meat and a luna bar since I can’t eat dairy).

Today was also the first real day that I ventured out of Lochlan’s room on my own. I went to pick up a stuffed lion that a friend of mine (Erin Williams) got for Lochlan. I met her at work (which is across the street and connected by bridges), which also meant that I ran into several of you. I realized I wasn’t handling this as well as I had hoped once I started talking about what was going on…

So what’s going on… we got the cytogenetics back today… So what cytogenetics is, is an analysis of the gross chromosomal abnormalities in the cancer cells. It’s used to tell if there are too many or too few of particular chromosomes (you should have two and only two of every chromosome other than the X and Y chromosomes where males should have 1 X and 1 Y and females should have 2 X) and whether any of the chromosomes broke and maybe fused to other chromosomes. While most cancers are known to gain or lose whole chromosomes or selectively delete or gain certain chromosome sections, leukemias frequently have chromosomes that break and then are fused to other chromosomes in a process known as translocation. Like Frankenstein, but less cool and more scary. The following is super generalized: The loss or gain of particular parts of chromosomes in tumor cells will give them a proliferative advantage due to loss of genes that inhibit proliferation or the gain of additional copies of genes that promote proliferation. The mixing and matching of chromosome sections in translocation events, however, often lead to different genes being fused together into something new, with a major effect being large changes in gene expression that support increased proliferation and/or prevent cell death. While the translocation events are likely random, the fusions that frequently result in a particular type of leukemia tend to be recurrent (only translocations that provide a growth advantage and lead to leukemia are going to be observed and documented). This means that many patients with leukemias will have similar translocations between different chromosomes. This information can then be combined with information regarding how well a patient with a given translocation responds to therapy and survives. So some translocations carry good prognoses for example: t(12;21). But some translocations carry not-so-good prognoses, for example: t(4;11)… Lochlan has t(4;11)… So Lochlan has a leukemia that is driven by a translocation that makes it more difficult to cure.

So this is shitty news. However, I don’t have a number about how shitty. Science is great at population stuff, but provides very little information for a given individual. What’s even more difficult calculation wise, is that this translocation is fairly rare for someone his age (something like 2% of ALLs for kids between 1 and 10). So there’s not a TON of information regarding prognosis in his age group. It’s common in infants with ALL (~50%) where it confers a poor prognosis, it’s uncommon in adults (~10%) where it also confers a poor prognosis. But in these populations, it usually presents with other bad features like high white blood cell counts and spine involvement, which Lochlan doesn’t have.

So the current plan is to hit this fucker as hard as we can up front. The doctors are doubling Lochlan’s dosage of dexamethasone and adding daunorubicin, a topoisomerase II inhibitor. Topoisomerases cause breaks in DNA in order to relieve tension in the DNA during replication. Daunorubicin binds DNA, then allows topoisomerase II to break the DNA, but prevents the repair of the DNA. The cell will sense major DNA damage and trigger cell death. The goal is to go into complete remission within the month.

However, this also means extra side effects. We can now expect significant reductions in his normal white blood cells as well as hair loss. If Lochlan survives this, he will also have to be monitored for the rest of his life for signs of heart damage, as this can be a late presenting side effect of daunorubicin. It also means that we will be staying in the hospital past next week Monday as had been originally planned. This sucks. We’ll get through it one day at a time, but it’s significantly more difficult emotionally and scary now.

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The Sadness Settles in (4/30/2019)

This is the 5^th night at the hospital. Last night was a pretty good sleep for everyone, I think. Becca started out on the pull out couch with me until ~3am when Lochlan woke up and asked her to snuggle him. Then I woke up about 5:45, Becca shortly after, and Lochlan slept in until like 7:30! There were no medicines or vitals that needed to be taken in the middle of the night, so Lochlan got some pretty solid sleep for a change.

This morning I tried explaining what leukemia was via a short video that was made for kids that I found on the internet. It… didn’t go well… He got pretty upset and started yelling and crying that he wanted to go home. We want him to trust us and understand what’s going on so he doesn’t simply make up stories about his parents and doctors torturing him. We eventually got him to settle down by watching Pokemon. I also offered him a packet of teddy grahams or goldfish crackers. I said he could have them both and he was pretty excited. That was very different. He polished off all of the goldfish crackers (one of his favorites) and about half of the teddy grahams. I think it was a combination of the medicines working and him feeling better and the dexamethasone which also stimulates appetite. A lot actually. Which is good in this situation. Bad if you’re an adult who takes it for rheumatoid arthritis.

While Locke was eating the crackers, we asked what he wanted us to order him for breakfast. Obviously, breakfast should be grilled cheese, tomato soup, and green beans, but the hospital kitchen didn’t agree with his request. So we called another food delivery service: Grammy. Grammy rounded up Bop, Aunt Rachel, and Torren and delivered his food promptly. Naturally, he ate a few spoonfuls of tomato soup and refused to eat the rest. But he did end up eating considerably more throughout the day including 2.5 pints of chocolate milk, a couple chicken nuggets, a dozen or so green beans, some peanut M&Ms, and popcorn. Nanna was also able to visit in the afternoon, but unfortunately Lochlan had just sunk into a more emotional point of the day. We were able to get a Wii set up for our room, so Lochlan is able to play a little Mario Kart (although he’s upset that this version doesn’t have everything unlocked like ours does at home). Hopefully that picks up his mood a little so he’s a little more chipper for Nanna tomorrow.

Today was a pretty hard emotional day for Lochlan. Besides the poor response to the description of leukemia, there were several additional episodes where he broke down and wanted to go home and wanted to get away from the mean doctors. I tried to point out the areas where his health has improved such as 1) he didn’t have a fever today! 2) he ate food so his mouth must be hurting less and 3) when he wasn’t upset, he was in a relatively good mood. And I tried explaining how that’s thanks to the doctors and the medicines that he is taking. Hopefully some of that got through to him. But he did get to see Torren today and that clearly meant a lot to him. It’s shocking how much our kids love each other. I’m so used to seeing siblings argue, but my kids rarely argue. They’re more like best friends and it really brings a lot of love to our hearts to see them together. My biggest fear when Lochlan got diagnosed with cancer was that we would lose him and Torren would grow up and not remember how much he loved her. But thankfully we haven’t heard of anything except positive indicators. That makes this process a lot easier in terms of taking everything a day at a time. But we are still waiting on the cytogenetics. I’m really hoping that since these cancer cells hadn’t made it to the cerebral spinal fluid, the testes, and actually weren’t even found in his blood (all they could find were the displaced normal bone marrow precursor cells), that these cancer cells are highly proliferative, but not highly aggressive. But we shall see how the chemotherapy pans out.

Thank you again for all of the love, support, and donations. I contacted my Ameriprise agent today to start working out a plan for how to best invest this money for Lochlan. I’m still hoping that this will be good enough for the next 3 years at least, but I have no idea how much everything is going to cost by the time the chemo ends. Hopefully there’s enough here to get us beyond that 3 year mark so if any additional health issues arrive, that we are prepared for those costs.

Love

Kevin and Rebecca

Killing the Infection (4/29/2019)

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This is the 4^th night at the hospital. Sleep went better last night, at least for Lochlan and myself. Becca is the only person who fits with Lochlan in his hospital bed and unfortunately it isn’t the best situation for her already troubled back. Due to the major events of today, she also had to skip her physical therapy appointment. For Lochlan, I think he slept better because I think the antibiotics have been working: his appetite is up (although he wasn’t allowed to eat bc he had to undergo anesthesia in the afternoon), his congestion is down, and he was even able to make a few jokes and laugh a bit. He has, however, still maintained a fever, but this may be primarily due to the cancer at this point.

The first good news we received was that his past two blood cultures came back negative for bacteria, so they were able to schedule the installation of his chest port. If he had evidence of bacteria in his blood, they wouldn’t have been able to install a port because the bacteria would have stuck to it and been more difficult to clear. If they weren’t able to install a port, he would have had to get a less permanent type of tubing inserted into his hand in order to dose him with his chemotherapy. That would’ve carried a higher risk for several things, particularly increasing his risk of burns from the chemotherapy.

So following a relaxing morning, Lochlan had his spinal tap to check for cancer cells in his CSF (which is a place leukemia cells like to hide and are protected from standard chemotherapy), first dose of CSF chemotherapy (cytarabine) and installation of his port. He was very scared going into surgery, but after the two hour procedure and a heavy nap, he was in a fairly good mood in the evening. The standard of care for leukemia in children involves an initial dose of cytarabine (a fake version of the nucleoside cytosine which rapidly proliferating cells will accidentally incorporate into their DNA and screw them up) into the CSF even if no cancer cells are detected at the time of the spinal tap. He will also receive weekly injections of methotrexate (a compound that inhibits folate production, which ultimately screws up a cancer cell’s ability to make another nucleoside base for making DNA, thymidine) even if they don’t find cancer cells in his CSF. It’s better safe than sorry. But the SECOND bit of good news we received was that the first analysis of Lochlan’s CSF showed NO CANCER CELLS. They were going to concentrate the CSF to analyze all of the cells to see if they could find anything, but we haven’t heard the results from that yet. They also checked his testes (another chemotherapy protected area for leukemia cells to hang out in males) and those were also clear. So this is all a great place to start.

Lochlan started vincristine today, which was given through his new port into his blood. Vincristine is a compound originally derived from periwinkle. This drug screws up a proliferating cell’s ability to separate its chromosomes during cell division, thereby leading to cell death. Lochlan will receive this drug weekly. Lochlan also started dexamethasone today. Dexamethasone is an oral corticosteroid that functions as an anti-inflammatory and immunosuppressive agent. For the latter reason it does a fantastic job at suppressing the proliferation of cancerous immune cells in leukemia. Interesting tidbit is that I used CRISPR-Cas9 to try and help someone generate a mouse model with a mutant version of the glucocorticoid receptor (the receptor that dexamethasone functions through). However, this mutation had similar effects as a full deletion of the glucocorticoid receptor gene, which is perinatal lethal. So unfortunately we weren’t able to study the functional effects of the mutation in animals (it had interesting effects in cells in tissue culture and would’ve allowed us to better understand the importance of dimerization of the receptor during signaling). But obviously this molecular pathway is pretty important in biology. Lochlan will have to take this drug every day for the next month. The drug tastes horrible, but Locke took it ground up in chocolate ice cream without any issue! Lochlan was also fantastic with his other oral medications this evening. He also drank over half a pint of chocolate milk. So I’m feeling like today was a pretty good win overall. I’m hoping that tomorrow we can get some real food into him. And maybe brush his teeth. But the sores in his mouth are pretty bad, so I’ll settle for food. I had a few baby teeth rot and fall out when I was a kid and dentists are always telling me I have very healthy adult teeth.

Thanks again for all of the love and support! We are so grateful and so humbled by this experience. We are so happy to see how much people love Lochlan and our family. I was able to ask someone today about how much of a bill we might be looking at. I still haven’t gotten a great figure for what the next 3 years might look like after insurance, but apparently our 10 day-or-so stay is going to be something ridiculous like $100K before insurance. Thank god for the Van Andel Research Institute. They are the BEST. So happy to be back. I upped the fundraising goal to $15K after having a brief panic attack regarding the $100K figure. I have no idea how much we will need for Lochlan. We are grateful for everything and anything we don’t use in the near term, we are going to put into a savings account for his long term health bills. So thank you, thank you, thank you!

Love

Kevin and Rebecca

Pushing through the Pandemic 11-9-2020

It is now well into fall and we are also well into our new school routine. Torren is loving her new Farm Pre-school. While I thought this behavior would come much later in development, she has fully grasped the answer to “What did you do in school today?” and “What was your favorite activity that you did in school today?” To both questions, the answer is “I dunno, everything was fun!” Thankfully however, we live in a day and age where teachers have easy access to parents, so we get to see pictures and get the rundown on teaching plans and what our daughter has actually been up to in preschool. Based upon what we have seen and heard, everything is going quite well for her. Lochlan has been 100% online. He seems to love the online games and other activities that he does for school and despite having only met his teacher (in person; they have short Zoom-style meetings every day) for like a few minutes for state testing, he loves his teacher. The teacher got thrown into the online curriculum by the school at the last minute, but she seems to have gotten most of the bugs worked out and I think she’s doing a fairly good job. My best measurement of the success of his online teaching is in the progress Lochlan has made in regards to counting and reading. He’s doing great and is really proud of himself for being able to count to 100 and sound out some pretty basic words. I don’t think I learned much, if any, reading in Kindergarten, so I’m impressed. It’s looking like Lochlan doesn’t have the attentional issues that I have, nor Becca’s dysgraphia, so that’s at least a couple less hurdles for him to overcome. Torren might have my ADD. But she’s 4, so she might also have a case of the 4’s.

Health-wise, Lochlan’s treatments are going well. We continue to have the occasional issue with his blood cell counts coming back a little low and having to adjust his meds. Hopefully his leukemia cells were as sensitive to these drugs and they all died a year ago. I hope that someday we develop some insane technology that can accurately detect single cancer cells so we can avoid overtreating patients that had complete responses to therapy instead of playing years of this guessing game. Such a technology would take several major advances in cancer detection. Maybe like an implantable device that detects abnormal cells in the body throughout the patient’s life and automatically delivers a therapy if it detects something. That would be useful for all of us. Our immune cells do this surveillance constantly, but they obviously make errors and then cancers grow, plus they don’t tell our conscious selves what they’re encountering. Maybe we could set up a little transmitter in all of our immune cells that gives us a signal when the cell finds something abnormal and provides additional diagnostic information.

In regards to coronavirus, to the best of our knowledge, we have not been exposed to the virus yet. Somehow, despite our minimal contact with the outside world, we HAVE still managed to get two rounds of COVID19-negative colds. This makes me suspect that it’s really only a matter of time. I wouldn’t expect us to have personal access to a vaccine until mid 2021 (as we aren’t frontline workers), so fingers crossed that when we get it, it’s mild for all of us. Lochlan’s normal colds haven’t been that much worse than our own symptoms, but who knows with this new virus.

Work-wise, I ended up going a direction that I had previously never considered. When I first found out that I was losing my position in Brian’s lab, I figured that I would simply switch to a different lab and continue to do research. But the openings were all well outside of my technical skill set and there wasn’t much flexibility in the budgets of labs where I could easily transition. So I started looking outside academia. I ended up finding a great opportunity to work with some former colleagues from VAI and one of my oldest friends at their startup biotech company: BAMF Health. This company has a few goals, including increasing the access to (positron emission tomography) PET imaging and targeted radionuclide therapy (TRT) by building radiopharmacies. Radiopharmacies build radioactive molecules that can be used for PET imaging to identify the locations of tumors or other abnormalities that accumulate the radioactive molecules. Then there’s TRT, which is basically switching the radioactive atom that is used for the imaging, with one that is much more powerful to deliver radiation directly to cancer cells that take up the radioactive molecule. TRT is quite new and clinical trials are showing pretty awesome results. I would need to make a fairly substantial blog post to cover how cool this technology is. But essentially, this technique allows 1) by using the same molecule to image and treat tumors, while only switching out the radiation dose, you can target the tumors that you see on the PET image, 2) The radiation from the molecule can also reach small micrometastases that you cannot see on PET imaging so you can also target the tumors you cannot see as long as they bind the molecule, and 3) Traditional external beam radiation has to travel through normal tissue to reach the tumor and can therefore harm normal tissues, but these molecules that accumulate in tumors have <1mm of potential radiation damage, which greatly minimizes damage to the normal/healthy tissue. Additionally, BAMF Health is designing artificial intelligence platforms to better guide clinical treatment of patients. So what’s my role? My job is to serve as a scientific advisor to help guide the rational design of clinical trials. So basically, I need to learn the biology behind everything from various cancers, to neurological pathologies, and how they’ve been treated so that I can identify promising molecules being developed for PET imaging and/or TRT, but also to identify currently approved drugs that might make the radiation therapy work even better. So I will have to learn everything, tell everyone what they should know, and help them better tell other people what they know, which will lead to better treatment options for patients and lives saved. This is basically my dream job. I started a week ago and I’m pretty stoked about the future of my career and this company.

But anyway, 2021 is looking much more promising than it was when I made my last post.

Sincerely,

Kevin, on behalf of the Maupin family

Corn-mazing at Heidi's — Corn-mazing at Heidi’s

Lochlan lost his second tooth on Torren's birthday — Corn-mazing at Heidi’s

This is the song that never ends… (10/21/2019)

Well, it has been awhile… That has been mostly a good thing, but also means you’ve all missed out on the actual good things since my last post (Torren’s birthday and Great Wolf Lodge are a couple of things). It’s too much for me to really catch up on and I’m overwhelmed with life as it is, so I will just ask for your forgiveness. Many of you are friends with me on Facebook or Instagram, so you’re probably not all out of the loop. We left off with about a month left of Interim Maintenance. The stage that was supposed to be a recovery for Lochlan’s normal cells to recover a little, while still dosing him with pretty strong chemotherapeutics (methotrexate, 6MP, and vincristine). It also gave us a break on having to give him a lot of oral antibiotics at home, which are always a pain in the ass to give him. He does not like oral meds of any kind. Sometimes he gets himself so worked up about them, that he throws up all over me. It is… not my favorite…The 6MP was oral, but it was pretty easy to coat it in some ice cream and he never seemed to notice. It’s very hard to disguise a liquid antibiotic bc they taste like crap and make everything they get mixed with taste like crap, so it’s pointless to try and sneak them into him. But while the therapy was less taxing, the trips to the hospital were always more taxing bc we would need to stay for 3-4 days while he was receiving the methotrexate, to make sure that he peed it all out while on high flow IV drip, bc it can be pretty toxic to the kidney/bladder. That treatment ended ~3 weeks ago and last week Tuesday we began the next round of intensive chemotherapy.

So last Tuesday, Lochlan received a spinal tap with methotrexate (old), IV vincristine (old), IV doxorubicin (new), asparaginase (old) and high dose daily oral dexamethasone (hasn’t had steroids since he first started chemo in May). While doxorubicin is “new” the mechanism of action, is pretty much the same as for daunorubicin, which he took during his first month of chemotherapy. It works by binding DNA, then inhibiting the action of a protein known as topoisomerase II. Topoisomerase II is involved in relieving tension in DNA that occurs when genes are transcribed. I guess think if you took a piece of thread, tied both ends in place, then tried to pull apart the threads in the middle. You’d notice that on either end of the opening that you made, the string would have gotten all bunched up and tighter. That can happen to DNA when the two strands are pulled apart to read the gene. To relieve that tension, topoisomerase II cuts both strands of the DNA, which allows the super tight region to spin back and relieve the tension, then it seals the DNA strands back together again. But if daunorubicin or doxorubicin is around, that prevents topoisomerase II from stitching the DNA back together. This happens throughout the genome at multiple genes and causes the cell to freak out and die. Ironically, the current model for Lochlan’s particular translocation t(4;11) is that this mutation is caused by exposure to topoisomerase II inhibitors in utero. There’s a known topoisomerase II binding site near the common break point and when this mutation happens in adults, there’s a strong correlation to exposure to topoisomerase II inhibitors. Examples of potential environmental exposures that could inhibit topoisomerase II include pesticides and even bioflavonoids (commonly found in citrus fruits, although these would need to be consumed in high doses, so don’t throw out your oranges bc you’re pregnant). I don’t know how many doses Lochlan will get of doxorubicin, but I imagine it won’t be super frequent due to the known cardiotoxicity.

Unfortunately, while we were in the hospital, some of the nurses weren’t very sneaky with hiding his 6MP in ice cream, so he has caught on to this trick to get him to take pills. So we’ve had a major battle with getting him to take his dexamethasone. Steroids also make people cranky, so it has been a very trying week. It can take 30-60 minutes of trying to get him to take his scoop of ice cream with pills in it, where it used to be instant. Thankfully, the treatment is one week on, one week off. So next week we will get a break. Also unfortunate is that Lochlan has gone back to losing his mind when getting his port accessed. All together Lochlan, Becca, and I are feeling pretty beat up after this past week. Tomorrow Lochlan and Becca go back in for more treatment. I think it’s just vincristine tomorrow, but the doctors haven’t been as clear with this stage of the treatment and Becca is also getting overwhelmed. To help, I am going to head over to the hospital for when Lochlan gets accessed so that she doesn’t have to sit through his screaming again.

Sorry for the delay in sharing, but I’m guessing with this new awful stage in his treatment, I’ll have more to share. For now, here are some recent pictures from corn mazes and pumpkin picking.

Love

Kevin and Becca