Day + 401

It’s hard to believe that on this weekend one year ago we were discharged from Lurie’s after James’ stem cell transplant.  I went back and read that update this morning… you forget about what James was going through at that time and what questions were still up in the air that are answered today.  A few that jumped out at me where:

1 - Our thankfulness of making it out of the hospital, together, as a family
2 - The gratefulness for James’ donor, who we now know is a great guy, Spencer, from Kansas City (Go Chiefs!)
3 - James had low energy at the time and was very up and down… not much strength and stamina.  How the times have changed!
4 - Our worries about two potential complications post-transplant:  (1) GVHD and (2) Relapse.  We would have preferred neither, but #1 is much better than #2 any day of the week.  James will keep battling and beat GVHD over time.
5 - That we wouldn’t forget about all the support we were given from all of you and so many and that we would find a way to pay it forward.  We still have a ways to go here, but this is always on our minds.
​6 - We were basically in “home isolation” until Day +100, had clinic visits every other day back at Lurie’s.
7 - That James came home with an IV and all the stress that was involved in not infecting his central line and properly administering his meds, day and night.
8 - That two weeks later we would be back in the hospital with breathing issues for re-admission, and it wouldn’t be the last time.

All-in-all, we feel great to be here 1-year later and able to write about some forgotten memories and most importantly making new ones with James every day.

Speaking of the future - we had James’ monthly clinic visit this past Friday. Our last clinic visit was before Thanksgiving- this has been the longest break from clinic/the hospital since diagnosis nearly a year and a half ago, so we feel very grateful for the break!   

The visit was a bit longer visit than usual as they ran more tests given the 1 year post-transplant milestone. The team did a heart echo and an ultrasound which are not invasive  and we aren’t expecting to see anything out of the ordinary here; we will know the results of this sometime next week.  The medical team also drew additional blood to do a chimerism test.  If you recall, this is the test done to see what percentage of James’ cells are donor versus his own.  We have no reason to suspect anything out of the ordinary, but it’s really important that these results come back at >98% donor, which is the highest probability/best result possible.  Anything less would be really bad news, but no reason to think that will be the case.  We’ve had roughly 4 of these over the past year and the results have always come back at >98%, so let’s keep that trend alive.

The team also wants to do a another CT scan of James’ lungs, which is a bit frustrating.  They just did this less than 90 days ago and it requires him to go under anesthesia for the procedure.  They want to keep a really close eye on James’ GVHD, especially in his lungs where you need an inside look versus his skin where we can easily identify the symptoms and issues. We are not so much frustrated that they want to do the CT, just that we have to do it again so soon.  The doctors know what is best, but we’re also afraid they they are going to say that nothing has changed given the short timeframe and then ask to do it again on a short timeline.  This may seem hard to relate to, but when your son is on so (so) many meds and put through regular blood draws, occasional invasive procedures, exams constantly, etc. there is part of you that tends to push back a bit.  The entire process is traumatic for a little kid- they are restricted from eating and drinking at all until the procedure is over.  Also, as James says- it’s always “more waiting, more waiting” as you wait for the various doctors to check in and clear James for the procedure.  We are, of course, understanding and grateful for the thoroughness of the medical team, but it is a long, hard day for a kid who has had more hard days than any kid ever should.

It’s’ easy to say why would’t you want to do everything possible to keep an eye on the GVHD and we do.  There just needs to be balance with that and doing anything that could put James at any level of risk.  For those that have been through something similar you can probably relate, but I know this is an argument or logic that may not land well on everyone if you don’t have perspective (which I hope you don’t.. that means you haven’t had to deal with issues such as this).

​The doctors also agreed, as planned, to reduce James’ steroid down from 1.0 mL to 0.8 mL twice a day.  We started this on Saturday and are really hoping that James handles it well over the coming week and that his skin GVHD doesn’t flare up.  He also has lost some weight since his last visit 5 weeks ago, which was surprising to Rita and I.  James eats well, and his favorite foods are pizza and bacon… so figure that one out.  That said, the doctors told us that with all of James’ trauma his body may require more calories than others because it has to exhaust them to a higher extend repairing his body, which makes sense.

We’ll share the results of the echo, chimerism and the plan for the CT once we know more details.  Until then we’re going to keep living it up… James is doing great and has more energy than the rest of our household combined which is a far cry from where we were a year ago at discharge.  Gotta love and feel grateful about that!

And… for Spencer (and Diana) -  Go Chiefs!