2019)

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

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

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

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

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)

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)

“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

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

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

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

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

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