Day +1,223

Update from Rita:

Hello Team James!

It would be hard to top our last update, but I think James might have done it, with a BIG assist from the amazing people at Make-A-Wish! Details below :)
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As a quick recap, after our last Stem Cell clinic appointment in February, we received the very happy news that James could finally stop all immunosuppressant medications with an eye toward removal of ALL meds by the end of cold/flu season.  We were thrilled with how much progress James has made since he came off steroids last summer, but cautiously optimistic as to how he (and particularly his skin GvHD) would do without the Jakafi keeping his donor immune system in check.

We are so excited to report that James has had no issues since Jakafi was removed and we are on track to be MED FREE by the beginning of summer.  James and I met with his stem cell doctors on Friday to go over our discharge plan (it feels surreal to even type out the words "discharge plan", but in the best way!).

James' blood work has looked consistently normal at our monthly follow ups and now that his GI issues are under control, the team feels comfortable with transitioning James to the survivor clinic soon.  First, the team needs to make sure that his new system is developing antibodies from the early childhood vaccines he has been receiving during our last few visits.  James received his last early childhood vaccine on Friday and at our next appointment in 4-8 weeks, the team will test his blood again.  If his bloodwork shows antibodies are present, James can come off ALL of his remaining meds (Penicillin, his inhaler, and a pill he takes for lung protection).  The only thing left for him to take will be his Gummi vitamins, which is basically an excuse to eat candy at breakfast time, an excuse of which I am a big fan!

Assuming his labs continue to look good, we will officially be discharged from Stem Cell Clinic and James will transition to Survivor Clinic.  He will be assigned an oncologist to monitor his remission and we will check in only ONCE per year!  I haven't begun to process all of the emotions I have surrounding a probable discharge from stem cell clinic. It has been such a huge part of our lives for nearly four years, it is hard to put the feelings into words.  For now, the one word that keeps coming to mind is gratitude.  How grateful we are to be in this position, how grateful we are to Lurie's and all of James' caregivers, to our families, friends, and all of you, James' Army of supporters.  Every day that we get to see James' big smile and his adorable dimples, hear his sweet voice and his awesome laugh, it is a true gift.  Thank you all, I won't ever stop saying it or be able to say it enough.

Speaking of gratitude, we are also so very grateful to the incredible people at Make-A-Wish, especially our volunteers, Tracy and Olivia, and our wish coordinator Danielle, for being able to surprise James with a trip of a lifetime to DISNEY!

We were contacted by Make a Wish back in 2019 and had selected Disney as then 3 year old James' wish.  After COVID, we weren't sure when or if we could make a trip to Disney again, but were thrilled when travel wishes were started up again in 2022.  The plans have been in the works for a long time, and we were finally able to make it official this weekend to surprise James.  We have included the video below- it was such an incredibly special moment.  We cannot wait to see the pure joy on his face when he visits the parks for the first time and experiences the special resort Make-A-Wish partners with for these trips (more on that to come in future updates).   Just the fact that James is well enough to go make this trip happen.... we are ecstatic.

While James has some awareness that he was very sick when he was younger, thankfully he does not seem to remember how sick or how often we were in the hospital.  We have explained to him a bit of what the purpose of this trip is, to bring joy to someone who has been through and overcome so much, but he likely won't be able to fully grasp its meaning until later in life.  For now, he is like any other 5 year old, counting down the days until vacation and Disney World!

We will be sure to share lots of pictures and fun memories from the trip.  Speaking of... we received and AMAZING picture frame (pic below) in the mail but not sure who it is from.  Please let us know if you sent it!

We wish everyone a Happy Easter/spring season and cannot wait to report back with confirmation of James's DISCHARGE from treatment!

Sending lots of love!!

~ Rita and Dan