David, the dum-dum cancer, and a CEBPA mutation

 Hi Friends,

We are still waiting for David to be admitted to the hospital. He will be treated on the hematology floor of the U of A hospital, so we have to wait for a bed to open up (someone is discharged, or otherwise). It is hard to wait because, even though the prognosis statistics are good, they are good for folks who are treated. They are not good for people who are not. Yesterday we followed up with his doctor and the clinic to ensure that we've not been missed/didn't miss an update.

When we followed up, we did get some news. They have been working through the genetic sequencing of David's leukemia and uncovered that he has a specific CEBPA mutation. In leukemia there are more positive mutations than others (just like the X-men, some are Eye-Scream, some are Jean Grey) and we are relieved to hear that the doctor was quite pleased that it was a CEBPA mutation. Some facts about the CEBPA mutation:

• 70% of patients go into complete remission (not just remission after the induction phase of chemo - which we had the 80% remission rate before)
• Patients with a CEBPA mutation are very responsive to consolidation treatment (which is the second, out-patient, chemotherapy that comes after the initial chemotherapy) which puts patients into remission
• CEBPA is a relatively rare mutation, about 5% of the population here
• Often patients with the CEBPA mutation do not need a stem cell transplant to go into remission (which soothes the concerns around stem cell transplants as they come with their own bucket of risks and challenges)
• there may be a familial element for CEBPA, so we are going to ask the doctor about that (for our children's knowledge)

If you are feeling academically inclined, there are some good review papers on CEBPA (which David understands more than me). Overall, the CEBPA mutation was a positive detail and means that we will likely be working down the left side of our previous chart, rather than the right (i.e. the risk of relapse is lower).

David still continues to get blood work 3 times a week and while it's no longer trending down, the Doctor said it wasn't at a critical range. So while waiting is no fun, it's not currently compromising David's immediate health. He is very tired (likely from the anemia of having his blood out of wack) and a bit nauseous but those are his only symptoms right now. It's a lot like being 40 weeks pregnant - uncomfortable, but not a problem until you're 42+ weeks pregnant. His team is committed to getting him in as soon as they can.

In the meantime, David is off work (since he still is very immunocompromised and so checks his temperature for signs of fever regularly) and we have everyone under one roof. Ellie is back from South Korea and is getting over her jet-lag. Sloan is back from Aunty/Uncle/Cousin fun and happy to have his creature comforts. I am back at work but working from home so we can head to the hospital at a moment's notice. I enjoyed reading the the AML stories on the LLS.org website, as these stories of hope really helped me feel grateful and less alone.

Things to pray for this week:

• A bed opens up for David soon (and ideally not requiring someone's passing for it to open up)
• His bloodwork stays stable
• The CEBPA mutation does not have a familial impact

Thank you for all the love and support. We are feeling the care of our village every day and appreciate it more than we can convey.💜💜💜

p.s. I am still undecided on the oxford comma in the title of this post.