Long post. Sorry 🫣

Jonah was admitted late Sunday evening for fevers that were breaking through acetaminophen. Monday morning, Dr Read was the attending on for inpatient (which we always love when he is, because he knows us so well), and he came to us with a plan. We had already been brainstorming, and some close friends had recommended something called drug fever as the culprit. The theory was that the cefepime (antibiotic that is commonly used and Jonah has been on for fevers since his cellulitis incident back in late March) was a triggering drug for Jonah - an allergy of sorts. Drug fever is complex, unpredictable, and very uncommon. Dr Read doesn’t disagree that it could be the cause, but also thinks that Jonah’s unregulated immune system is to blame, need definitively drug fever. But, the plan was: 
- Try this med called tocilizumab which is an antibody that helps block interleuken-6 receptors, which in short, should help bring cytokine production *down* (Jonah’s has been sky high, and climbing).
- Add cefepime to Jonah’s allergy list

Jonah started the Tocilizumab Monday around noon, and has been FEVER FREE since 🎉

Jonah was DISCHARGED Tuesday afternoon!! 🎉

The Tocilizumab is uncommon, and there’s no standard protocol, other than Jonah needs to be monitored while receiving it, so it’s not something he can continue while at home. If Jonah goes in for fevers again, he still needs to go through the 48hr admission for sepsis work up/blood cultures, but would get another dose of Toci to hopefully help. The half life of Toci is 3 days to 3 weeks, so it’s unpredictable in how long it will work, and the serum lab test to measure how much is left in his system takes days to get back. I’ve asked if we can do another infusion of Toci at Jonah’s next outpatient appointment this Friday to be ahead of fevers returning, and Dr Read is consulting with pharmacy in the meantime.

Planning out our last week and a half with Dr Read:
- Outpatient this Friday
- Hopefully scheduling for another bone marrow aspirate on Monday, then central line replacement on Friday, before BMT admission on Sunday 6/9

 During our discharge conversation, Dr Read also solemnly told me his last day at TCH is ironically 6/9. In our conversation, he said he’s been working hard to wrap up all existing patients he has, has stopped taking new patients a while ago, and wanted to see all of his existing patients through the end of transplant, but Jonah’s course has been so complicated with delays, and he’s sorry he won’t be here to see things through. His family is moving back to Michigan. We’re sad, I expressed that, and I offered to keep in touch informally and he agreed. I later told Vince that Dr Read has been like the annoying older brother who sometimes knows better than me (😂🤪). We will miss him dearly, and it’s honestly terrifying to be starting to build a relationship with a new primary doctor. We’re getting transferred to Dr Yassine, who we’ve met, and like, but it just isn’t the same.  Another bump, and gosh I don’t think this whole process could get more complicated, but God only knows. I’m nervous to need to trust another provider who doesn’t know us as well. We’ll have an outpatient appointment next week with Dr Read and Dr Yassine together next week, so hoping to use that time to build rapport. 

Please keep it in prayer that this Toci drug keeps Jonah’s fevers gone, to gift us with some family home time before BMT next Sunday. And that our transfer of care to Dr Yassine is smooth. 

Just a reminder, if you’d like to help, we’d appreciate any help with home tasks to help us get unpacked in our house before BMT (when Vince and I won’t see each other again, as is for all admissions, and unpacking gets harder). Unpacking is already hard because we’re truly to prioritize family time so much with Jonah when he’s home (which has been so little in the past 6 weeks).

Helpful items could be:

• Putting our garage shelving together (easy, metal pieces that fit together)
• Getting clothes hung
• Installing anchors to our taller furniture
• Touch up painting
• Bringing items from our house to donate
• Helping to go through/get rid of kids clothes and toys
• Putting together our trampoline and geodome
• Mowing our lawn
• Helping with the kids while Vince or I work on these items

Katie: 8609082578
Vince: 2108492522

Thank you in advance. 💚

https://my.lotsahelpinghands.com/community/kellerfamily/calendar/kr5Ngd2fSwGhSq-q6jo9Lw/task/zaWHVsP6QoGfkbNyg7m6zg/view

https://my.lotsahelpinghands.com/request/kellerfamily

(photos from the chapel at TCH. I told Jonah he could add prayers to the prayer tree (prayers are prayed over by the chaplains regularly), and Jonah didn’t hesitate in prayers he wanted to say - for his brother Leo in heaven, and for his bone marrow donor. ❤️)