Day +1054

First off - THANK YOU to so many people for your generosity and donating to the CAL'S ANGELS GLOW WALK.  It was a huge success with Team James taking the top fundraising spot... $12,671 in donations from Team James - all to going to a good (and much needed) place to help research and find a cure for childhood cancer.  This also meant James got to lead the walk for the entire event, which you can tell by the video below meant a lot to him (and us)!

 On the health front - we also had a longer clinic visit this past Friday... outside of his normal labs and monthly checkup with the stem cell team James also had a CT scan of his lungs + an appointment with his pulmonologist.  To refresh your memory, James was diagnosed with lung disease (broad / general term) a while back and put on some preventative treatments due to some concerns in the lower portion of his right lung.  These consisted of a percussive vest and nebulizer 2x a day which James has not been a fan of.  He's also on a number of medications to treat potential infections etc that could occur, which is always a concern.  For the CT James had to have an IV in for a few hours and he was a champ with having it in all afternoon.  Attached is a photo of us going down the elevator from his labs down to the CT.  He's looking like such a big kid these days!  

Great news on the CT - James' lung looks MUCH better and, while not fully resolved/normal, the doctor said he looks "great" and they are very encouraged by the progress.  No more vest, no more nebulizer!  The stem cell team also made a slight decrease to his last remaining immunosuppressant, Jakafi.  We're using the Jafaki to combat everything from this lung disease, Crohn's, and his GVHD collectively so the fact that we're now going down on this is very good news.  We're making more progress on his medications after knocking off a few big ones this year already and I'm hopeful there is a chance we could be off or near all his medications in about a year at this pace.  This is HUGE because it may mean we can finally re-start James' early childhood vaccines... he got some of these before he got sick but the stem cell transplant wiped them out and he has been unable to get them due the immunosuppressants.  Right now James is out in the world without any protection from chicken pox, measles, rubella, etc.

On the less than great news front, James also had a follow up with dermatology a few weeks ago and they essentially told us that his hair isn't coming back.  While not surprising, we've been clinging to some small sliver of hope with the Jakafi and other treatments we've been trying.  In a nutshell when James' GVHD really broke out over a year ago it attacked his hair follicles and in simple terms scarred his skin making this irreversible.  Think of it as if you were burned over your entire body and that hair would never grow back (not a great analogy but you get the point).  It has been harder recently because James is starting to get teased more often and we've had some recent instances where he has been down about it.  It really sucks knowing this is going to be a problem for him for the rest of his life - but if it was between him having hair and being on 20 medications with lung and other issues or James making all the progress he's making and no hair I'd take no hair 100 out of 100 times.  I also try to think back to the times 3 years ago when this started and how lucky we are to even be where we are today... there are many worse things in life and many larger battles that he came out victorious on.  That said, it's still not hard to be upset that it has to be this way even despite all that.

Additionally - and I hate to even bring it up after we just asked everyone to donate to the GLOW WALK - but we will be doing a 3rd annual blood drive in December, so mark your calendars.  Details are still being finalized but it will either be a multi-week virtual drive or potentially an in-person drive, likely 12/11 and 12/12, in Chicago.  If the in-person does happen we will still have a virtual component for those that don't want to/can't trek down to the city.

So to wrap it up - great progress, great update on his health, and we're feeling really good about what 2022 will have in store.  We just need to keep it going and minimize the setbacks.  Thank you as always for the love and support - you all rock!

Dan, Rita, James (aka "The Flash") and Maeve (aka "Wonder Woman")