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

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

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

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

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

Love

Kevin and Rebecca

• 

•