Day +998

I am hoping to keep this update as brief as possible, but if the past is indicative of the future that’s probably unlikely as these seem to get longer and longer each time I write them.  Some good news, some bad news with James… but before we get to that I want to give a quick plug on Cal’s Angels which is a local charity that was and continues to be a life saver for us and for many other cancer families.  Cal’s is the go-to around Lurie’s Children’s hospital… keeping not only the kids spirits up with events, gifts, wishes, etc. but also the parents.  Spending weeks/months in the hospital we used our Cal’s blankets every day to rest up and they still send out care packages to not only James, but also Rita and I a few times a year which is really cool.  Not many of these groups support you post-discharge but Cal’s gets that for most families such as ours the battle isn’t over at that point (case in point, me starting this update with the words “Day 998 since transplant). 
 
In 2019 Cal’s partnered with United to send James and 100 others kids on a trip to the North Pole from O’Hare, with Santa and all his friends.  You can see James in this video at exactly the 2:00 minute mark – somewhat unrecognizable these days as he has hair and looks a bit different then from the steroids etc.  He still talks about that trip to this day.
 
United welcomes more than 100 kids for fantasy flight to North Pole | WGN-TV (wgntv.com)
 
The Cal’s glow walk, their most important fund raiser, is on 9/25 and we’re going again this year to support the cause and raise some money.  Team James, organized by James’ aunt(ie) Brooke is looking for anyone willing to throw a few bucks in and/or spread the word.  And of course if you want to join the team (virtually or with us in person) all are welcome!  Link below (great job Brooke)!  If you do donate, also check to see if your company does a matching contribution for Cal’s Angels.  Believe it or not, only 4% of the federal budget for cancer research is dedicate to childhood cancer.  Cal’s helps to fill that gap, and helps a ton of families in the process.
 
www.givegab.com/teams/team-james
 
So on to James.  We had a really good clinic visit this past Friday with James’ stem cell team.  He’s been handling his medication weans very well over the past few months and has been completely off steroids for a month or two now with no adverse effects.  The next major medication we’ve been tackling is Tacrolimus, another heavy immunosuppressant that keeps James’ immune system at bay… and not functioning properly.  Outside of short and long term side effects that are always a risk (infection being one that’s always high on the radar for anyone with a suppressed immune system), getting James off this drug is also the next step in his recovery towards tackling the next.. and the next… until we can hopefully at some point say that for the last time.  The doctors agreed to take James’ dosage down to 0.6ml (he takes this every 12 hours and has for a couple years now).  For perspective, his prior dosage was 1.2ml and the last few months it has sat around 1.8ml.  In just a few month span that’s a major downward trend and James is so close to getting off.  We left that appointment Friday with the goal of James, nearly 3 years, finally being able to kick this to the curb at his next appointment in 4 weeks!  As we’ve experienced with attempting to get James off steroids so many times these things rarely go according to plan, so we were pessimistically preparing for something to go sideways while hoping and praying it wouldn’t.
 
Which leads me to the less than ideal part of this update.  James began experiencing similar Crohn’s / GI issues recently and they started to amp up this past Saturday and then even more so on Sunday.  James went to the bathroom about a dozen times Saturday and then Sunday it increased even more.  Tack on a fever around 101-102 which got up to 103.4 Sunday night and things haven’t been great the last few days.  We re-started James on steroids today, but that should be short term fix which they call a stress dose.  He’ll be on them as long as he isn’t doing well, and then we can quickly wean them down and get him off of them again.  James is in good spirits but it really hurts him a lot to go to the bathroom, which is often, so that’s not easy and you feel for him when he’s constantly afraid to go/crying but he can’t help but have to constantly.  The sliver lining is that he shrugs it off quickly and gets back to being the James we know. Today was his first day of school… well, it was supposed to be… so we’re bummed about that for his sake and not being able to be there with the other kids.  We pulled him for the week as we try to figure this out / help him and we’ll take another shot at school hopefully next Tuesday after Labor Day.  No mention (yet) of going backwards on the Tacro medication wean, so we are hopeful we can find a way to get this under control and get back on track.
 
And now for my comments that likely won’t be popular to everyone reading this, but that’s ok.  If you aren’t vaccinated please for the sake of those around you get it done.  James and others like him will never be safe from COVID-19 or many other illnesses if we willfully allow them to persist more than they need to.  We can’t control everything, but we can get this country and the world in a much better place if everyone would start thinking more about their neighbors and less about themselves.  We already had to pull James from his original school and put him somewhere else at the last second because they couldn’t commit to a mask mandate for the kids.  I totally get that it’s not fun wearing a mask and you want to see your kids smile, but have some perspective.  If that’s the biggest stressor in your life, life is pretty good for you.  I am not trying to polarize anyone with these comments, but just ask that you put yourself in other peoples shoes before making a decision on what the right thing to do is.
 
As always, thank you for all the continued support… can’t thank everyone enough and we’ll keep you looped in in the coming days/weeks.
 
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