Day +1,314

7/12/2022

Miracles on miracles lately!!

We are just full of good news the last few weeks and James is in the best and healthiest place he has been in years…. Since before he was sick. It feel great to say that.

Miracle #1:

This may be “old news” for many at this point given I posted an update on Facebook in June, but never sent an update via James’ site so all may not be aware as I know not everyone uses Facebook these days. Both Rita and I attended James’ last clinic visit, which has not happened in a long time as we usually switch off due to work schedules and COVID protocols, but we both wanted to be there for what we anticipated to be a special appointment. At that appointment James was officially discharged from treatment after nearly 4 years. Surreal moment for us and so happy for James. As part of his discharge we also stopped virtually all of James’ remaining medications, effective that day. He is free and clear to go live life without monthly trips to clinic for lab draws. We’ll migrate to a regular pediatrician and only need to return to Lurie’s once per year for a survivorship workup, labs etc. Again, I know many are likely aware of this because of our Facebook post but wanted to share again in this update to make sure all knew the great news.

Here is a video of James "ringing the bell" that day as well as few from Navy Pier in Chicago which is where we went that afternoon to celebrate with James.

Miracle #2:

This one is a head scratcher (no pun intended) as we’re seeing what we thought was impossible.  For the past 2+ years James has had zero, and I mean zero, evidence of any hair anywhere on his entire body.  Not on his head, eyebrows, eyelashes, arms, legs… nothing.   Every day for the past two years, Rita and I have discreetly checked for any signs of hair growth, hoping and praying that X new medicine would do the trick and finally kick his hair follicles back into gear. Nothing.

About 7 weeks ago, we noticed some very, very tiny white hairs on James’ head. The hairs were isolated to just a few spots on the top of his head- and you could only see them if the light shown a certain way and you were very close.  While we didn’t want to get too excited, the fact that we saw anything was both confusing, exciting, and hard to comprehend.

After we did not see any re-growth in the first 6-12 months after James' hair fell out, we consulted with a pediatric dermatologist specializing in oncology patients. We tried every treatment under the sun with no results. Eventually, we were told that his GvHD attacked his hair follicles so badly that the follicles were essentially scarred and had little chance of ever growing hair again. We were told that it was a similar situation to a patient with a bad skin burn (think 3rd degree), the hair is follicle is usually permanently damaged and the patient does not see any regrowth for the duration of his lifetime. I am passing zero judgment on that assessment as often with a medical diagnosis it’s a process of elimination to land on a certain diagnosis… so we never lost hope, but it was pretty minimal. We had accepted that James would be his beautiful bald self for the rest of his life and we focused on ways to help James cope with his alopecia as he gets older.

Apprently, his body had other plans. We’re very excited to share that over the past month James has continued to grow more and more hair and it’s now very evident when you look at his head (with purpose, you have to be looking for it) that he’s starting to regrow hair over almost his entire scalp.  It’s pure white, so hard to see, but overtime that may change.  No eyebrows or eyelashes, but the fact his body is kicking into gear is truly a miracle that we never expected.

We had been cautious to tell anyone, including James, about this – but he is now aware and others are as well due to it being more evident. Both Rita and I have been making a huge effort to tell James that he is perfect with or without hair and try to not focus on it too much by getting him too excited. Not sure what direction this will ultimately take, if he will lose it again, if it will be spotty… etc. so we don’t want to make a big deal out of it. That said, we’re very excited for James because his alopecia is becoming increasingly difficult for him. Our family is used to it, but it’s not easy seeing most people passing by do a double take when walking past James and kids unintentionally pointing out his differences (kids will be kids) and the difficulty that has and will continue to present for him. Now there is a chance that won’t be the case for James in the future, and that is amazing.

All this said, the MOST IMPORTANT part of all this is James is feeling great, he has officially beat cancer, his other complications (Crohn’s, GVHD, lung disease) are showing no signs of being present and he’s on a path to a normal, long and healthy life. Incredible to be able to say that after all this time and all the obstacles James has knocked down one after another and never looked back.

On an unrelated note - we received a really cool song from Give Kids The World (where James stayed for his Disney Make-A-Wish Trip)... we (Rita) sent them and https://www.songsoflove.org details about what James loves in life and they made this song for him. He thinks it is pretty, pretty cool! Thank you!

Can’t say it enough – but THANK YOU all for your support. I know you’d think we’d be used to it by now, but all the 24x7x365 support over the last few years has meant to much to us not just in the beginning but through this battle of getting James to this point and helping us get him across the finish line to a normal and healthy life. Love you all!