Sam’s had a good week. He met with 3 of his teachers and is practicing adulting like a champ.

His clinic day got moved to Thursdays now since Dr. Bertaina’s schedule changed (no longer Mondays) so in we went on 8/17.  He got another mitogen test, which is the one that matches his developing immune system up against 8 common antigens.  It’s a peripheral blood test, not a bone marrow test, so that’s good (he still has his port in his chest so they draw an extra vial of blood for the mitogen test. I think he gets 8 or so vials drawn per week but am not 100%.  It *may* be more — they check weekly for complete blood counts, immunoglobulin, metabolic panel, and a number of viruses and fungi: aspergillus, cytomegalovirus, herpes, epstein-Barr).

The mitogen test is the test that his immune system must pass to get back to school and a more normal life. Dr. Bertaina’s lab is doing the test now and so the results come back in 10-12 days instead of 3 weeks. Yay!

His last mitogen test was in late July and he was still tapering off prednisone at that point. So we are hopeful that now that he’s off prednisone, the numbers will be higher.  He still has some GvHD (graft vs. host disease) on his stomach and chest, which presents as a rash, but it’s under control with the topical steroid creams: tacrolimus and lidex (no oral steroids) and Dr. Bertaina said (for the first time aloud to me at least) that she’s happy with this level of GvHD because it also provides the possibility of “Graft vs. Leukemia” effect (I’m not sure if the doctors know when and how this effect kicks in — need to ask about how they track this, what evidence they see that it exists (I’ve heard about it before and I know it exists, just don’t know how they know it’s active).  And since Sam had a tricky mutation, we’ll take all the “surveillance” we can get!).  And the GvHD doesn’t bother him. It’s a bit tedious in that he has to apply 2 creams twice a day, and it’s a bit messy, but other than that there’s no bother (itchiness etc).

He’s down to a couple of oral medicines now too: valcyclovir and voriconizole. These provide protection against common fungal (voriconizole) and viral (valcyclovir) infections.  And he still gets his monthly pentamidine (he got that on 8/14) which protects his lungs.

He had some fun this week too celebrating our friend Max’s end of treatment for Burkitt’s lymphoma. Let’s go!!!  Max’s treatment protocol involves a shorter period of time, but is very intense as all of his medicines have to be administered in the hospital. So yesterday, Sam and his BFF Alec, stopped by LPCH to celebrate with Max and his family.  They also visited our new friend T who is up from Clovis and recovering from a stem cell transplant (had leukemia and went through 2.5 years of treatment and then relapsed 😞). T is 9 years old and since they have to be within 30 mins of the hospital for the first 100 days post transplant, they have an AirBnB in Palo Alto. So Sam and Alec brought some board games and they played Parcheesi. Sam reported that T is big on blockades so it was a spicy game 😂. 

We are very grateful for these relationships — they have given Sam so much joy and outlets to talk about his experiences with people who understand and to give back to the childhood cancer community. He’s made a huge difference in their lives too and we treasure the time they can spend together.

Speaking of childhood cancer — did you know that September is Childhood Cancer Awareness Month?  Think about if there is something you can do:

• maybe learn more about childhood cancer (I recently learned more about Ewing’s sarcoma in honor of my new friend L and her daughter K who is a young adult who has been fighting it for 5 years)
• or how the treatments haven’t changed much in 40 years (can you imagine if your computer hadn’t changed in 40 years??  Or your phone?? Or your car??? 🤔)
• or wear gold, which is the ribbon color for childhood cancer
• or give blood or platelets
• or learn about childhood cancer survivorship
• or participate in the Great Cycle Challenge  that my friend Lisa is running (Lisa’s young adult son is a leukemia survivor and stem cell transplant warrior who lives near us. Lisa has provided so much great counsel and kindness). 

Go Gold for Childhood Cancer Awareness!

#FULeukemia
#LFGStemCells
#GoGold
#TeamSamStrong