And on Day 312 post stem cell transplant, we returned to Oncology. That’s a great thing!

Our Oncology nurse practitioner said all the blood counts look good and are in the normal range. Yay for that! They didn’t run the test that measures CD4, a cell marker that tells them that his body is ready to get his baby vaccines again, so Gina put in orders to do that in March.  Hopefully it’ll pass the required threshold (usually it takes about  a year post transplant).

As luck would have it, we also ran into Sam’s stem cell nurse practitioner, Karen, in the hallway and she sat down with him to see how things are going (and check out his skin — which, as you probably remember, was the site of his graft vs. host disease :).  He took a moment to ask her about sun exposure: this is an ongoing restriction that is challenging to navigate as nobody knows for 💯 certainty how much sun exposure might provoke his T cells to react and cause GvHD again.  I’m glad he continues to check his understanding about it abd get input from the experts. #adulting 


We also ran into 1 of the 2 doctors that saw him when he was first admitted, Dr. Lacayo. He recognized Sam even with all the curly hair and was happy to see him (we hadn’t seen him since last summer). 
We discussed scheduling for the next few appointments because now we have to navigate around in person school (didn’t have to do that for the last 1.5 year so it’s new for all of us). We figured out that Wednesday mornings look the best as Sam has a prep period from 9-10:50 am AND that is the day both the doctor and our NP Gina will be in clinic. So glad that that worked out. 

He’s scheduled for his 1 year post-transplant check ups including;

• echocardiogram and audiology on February 26

• bone density scan and pulmonology on February 27

• bone marrow test on March 11 

We will combine the 11th month oncology check with the bone marrow test so he only has to go in on March 11 (which is a local holiday for our school district too).

In addition to the scheduling, we asked about best practices re. His mutation and what is the “sweet spot” for keeping close track but not having too many appointments or tests. There are only 10 - 15 or so teens with his mutation nationwide so not much data but Gina said she would talk with the oncologists to see what they think. 

We are grateful to be talking mostly about mundane stuff 10 months post transplant. 💪🏼💪🏼💪🏼

Please give your immune system a big high five whenever you think of it because it fucking rocks!!

#FULeukemia

#LFGStemCells

#TeamSamStrong