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.

Featured

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

Featured

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

Featured

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

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

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

Featured

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

Featured

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

Featured

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

Featured

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

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