Day +714

Update from Rita:

Hello Team James!

At the time of Dan's last update, James had just come home from the hospital and we had FINALLY gotten off prednisone (the oral steroid James has been taking since March of 2019).  We are so thrilled to report that James has tolerated the transition off prednisone to hydrocortisone very well.  We have not noticed any skin GvHD flares.  His appetite has returned and he is back to his baseline weight (right around 29 pounds).

Speaking of James' weight,  we had a marathon day of doctor's appointments on Monday, and the first appointment was with James' endocrinologist to discuss the plan for his growth.  Thankfully, James has grown a little bit since he was last measured by endocrinology in May of 2019.  In fact, James' growth rate is on par with other 4 year olds.  It is just that his growth was paused for so long and now he has to try and catch up.  You might remember that back in May, James' doctor ordered a bone age x-ray of James' left hand and the results showed that his bone age was that of a 2 year 2 month old. when his actual age was 3 years and 9 months.  Since James did grow a little bit and he is now off prednisone (which is known to stunt growth), the hope is that James will really start to grow on his own without any other interventions.  This would be the best case scenario, as interventions could include Human Growth Hormone, many more tests, more blood draws, etc...  We really want to reduce the number of specialists that James is required to see to give him as close to a "regular" early childhood as possible.

After endocrinology, James and I headed  over to Lurie to check in with stem cell, physical therapy and dermatology.   James is considered to be in remission from his JMML and that means he will be evaluated by physical therapy as part of his survivor treatment plan. PT will check in on a yearly basis to assess his strength and range of motion.  So much has happened in the past 2 years that it is sometimes hard even for me to remember that PT was once one of the many specialists that James was required to see.   I try not to dwell too much on the extreme hardships James  has had to endure, but it is also amazing to consider all the hurdles he has overcome.  This little guy was once required to have therapy to help him gain strength to walk, step up and down, climb and get around like the average 2 year old would.  He once had orthotics in his shoes to help stabilize his ankles, and now he runs faster and longer than ever before!  The physical therapist was very happy with how well James is doing physically, especially considering his recent hospitalization.  She tested the range of motion in his feet and hands, and gave me the happy news that she did not see any deficits.

Following the PT evaluation, the dermatologist came in to take a look at James' scalp and discuss options to stimulate his hair growth.  As Dan has alluded to before, no one can really tell us whether James' hair loss is permanent and no one can know for sure what exactly caused the hair to fall out.  We know that James battling the flu earlier this year caused his skin GvHD to flare, but the dermatologist suspects that one of the strong chemotherapy medications James  was exposed to ( Busulfan) may also have played a part in killing his hair follicles.  Either way, the first line of treatment is something you have all probably heard of, Rogaine.  We ordered some over the counter and are going to start to apply it to James' scalp daily.  The dermatologist recommends trying this for 6-9 months and warned that Rogaine has been shown to be effective in only 1/3 of patients, so there is not much else to do but wait, hope and pray.  The plan is for us to return in 6 months to see if any progress has been made, and also discuss the introduction of Latisse to stimulate James' eyelashes and eyebrow growth.  

Apart from the cosmetic concerns of having no hair, James' alopecia has other uncomfortable side effects.  He is constantly rubbing his eyes because he has no eyelashes to provide his eyes with extra protection.  He is also extremely sensitive to water getting in his eyes because it probably feels a lot different than it would for you or me.  His eyes are also frequently dry, even more so in the winter months, and anyone with young kids knows that trying to put eye drops in to relieve dry eyes in kids is no easy task.  Dan and I were both involved in trying to get James to let us put eye drops in, and let's just say James won out in the end.   He is one strong willed kid!!

The stem cell team reviewed James' labs and most have recovered back to normal ranges after his hospitalization which is a good thing.  James' AEC level is still in the abnormally high range (3000) so the team thinks he is still having some skin Gvhd, but is just monitoring the AEC for now.  

James was very happy to learn that we do not have to go back to the doctor again for 3 more weeks. While he is usually such a good sport about going to the doctor, the older he gets, the more he remembers and with that comes fear of things that happen at the doctor, like being poked with a needle.  James is really upset about "all the pokes" and of course we don't blame him.  Unfortunately, this is something that not even Airheads or jellybeans can distract him from.  He always handles it like a champ, but it is another example of the after effects of JMML that James will have to endure, likely for life.  Regular blood draws, doctors examining him and comparing him to "normal" kids... it will be a lot.  I say this not to be a downer, but as a reminder of what James, and all cancer survivors endure.

On that note, what can we do to help James and other cancer patients?  We can donate blood!  If you haven't yet, please consider signing up to donate blood using the link below.  Blood donations always fall during this time of year, and even more so this year due to Covid.  Rest assured that blood donation is safe.  If you are healthy and able, please consider donating.

https://www.curiousjames.org/blood-drive-2020.html#/

I want to end with a genuine THANK YOU to everyone who reads these updates, keeps James and our family in their thoughts and prayers, participates in the blood drives and who has supported us these last few years.  Two years ago, on the Saturday after Thanksgiving,  James was taking a nap in our apartment, and I was beginning to pack and get organized for our hospital admission the following Monday.  In that quiet hour, I was trying to choose books and small toys to bring with us and found myself sobbing on the floor, overwhelmed by the enormity of the battle we were facing.  In two days, we were going to check our little boy into the hospital and subject him to the harshest chemotherapy drugs and the brutal stem cell transplant process, all with no definite discharge date in sight.  We had no idea if James, or if we, would survive it physically or emotionally.  

I remember that moment vividly. I know that every year around Thanksgiving, I will remember how scared I was and how grateful I am that James is still with us and of how many people helped us get to another Thanksgiving... this year marks #2 since stem cell transplant on 12/6/18.  Thank you all so much!  We are always grateful for you.  We wish everyone a Happy Thanksgiving and hope everyone has a great holiday, even in these very strange Covid times.