Team James - 

I know many of you have been wondering how James is doing and I am thrilled to say that things are going very well.  We are back home as of Wednesday afternoon and James is on the mend.  His energy is coming back day by day and he has a few pounds to regain but other than that things are great after our 5 day stay at Lurie.  All signs are looking this this was 100% Rotavirus and it just hit James really hard because of his challenged immune system.  This is tremendous news for a number of reasons.  First and foremost, nothing more serious was causing the issues James was experiencing.  The brain MRI came back with zero issues and looking great.  Second, there is an explanation for why James was not feeling well.  In this journey there are often unknowns and for those of you that have had to deal with medical issues personally our in your family/circle of friends you know that the unknowns can sometimes be harder to deal with that bad news.  And last but certainly not least, James' GVHD did not rear it's head as his immune system activated to fight off the virus.  This is really critical and a very positive outcome... the last few times James has been sick his GVHD has flared up and caused all kinds of other issues (case in point, killing his hair follicles and attacking his skin).  None of that happened this time.  James' immune system was able to slowly fight off the virus without attacking the rest of his body at the same time.  Granted it's not "normal" to spend nearly a week in the hospital on IVs with Rotavirus, but the that out of the fold and everything else has been very positive.  

Also - thank you to everyone that has signed up for the blood drive in December.  We're ~50 enrollments so a good start.  Last year we hit 253 and there is no reason we can't beat that number this year with all your support.  THANK YOU!

- James, Dan, Rita and Baby Maeve

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All - I am writing to give a brief update on James' MRI as I know many of you have asked how things are going and if we had any results yet.  James was supposed to get this done Monday but it kept getting pushed back due to over-scheduling, etc.  James didn't sleep much last night (translation -> not at all) but fortunately it wasn't due to pain he was just restless.  His steroids are about 3x normal and he took a pretty solid nap in the late afternoon so I wasn't surprised.  I served as his waterboy all night and carried him to and from the bathroom about every hour or two.  King James at his best.  I give this context because I finally flagged our nurse down and asked if we could do his MRI at 4 am this morning.  We were both up anyways and I figured we could beat the crowd and get it over with.

James did amazing... he was a little confused at first when he was getting strapped to the board and put into the machine but got through the entire thing without crying, screaming, or even showing any remote signs of being afraid.  I was very impressed considering he just turned for and an MRI is a little daunting when you can't understand what they heck is going on around you as a little kid.  We got the results this afternoon and everything looks totally normal.  This was a huge relief for us as you can imagine.

We're still stuck here on fluids and some other IV meds but James has been on the up and up.  We're hoping for a great night tonight and a bit more sleep...  and possible discharge tomorrow.  If that doesn't happen, then likely Thursday (but my money is on tomorrow).  James will be moving to a new steroid once we are out of here and off his prednisolone which is also news to our ears.  We've been working towards this for 18 months.  Although he isn't off steroids, getting off prednisolone and onto a less potent one is a very positive step.  We're hoping to handles this with flying colors and we can eventually get him off steroids all together before the end of 2020 (gotta shoot high :-))

Thanks everyone for all the support and thoughts - and also for the great turnout thus far on sign up for the blood drive!  We really appreciate everyone taking the time to sign up to donate - it means a lot of us and I am sure it will to James one day when he is old enough to understand and appreciate all the support he's had throughout this journey.

October has been an up and down month... each time I have been ready to write an update something else changes (either for better or for worse) and I've delayed writing an update for a few days each time as a result.  Unfortunately right now is one of the "for worse times" as we are back in the hospital and admitted back at Lurie's.  I'll get into details on that in a moment.

Rewind to the last few weeks.  James has been having headaches followed by vomiting throughout October which has landed us back at the hospital a few times in the last 3 weeks.  These headaches have come out of nowhere with immediate onset - basically a 180 from feeling great to feeling really, really crappy.  Turns out that each time it has been medication related.  One of the medicines James' takes to suppress his immune system, Tacrolimus, requires a delicate balance to keep in therapeutic range.  Too low and it doesn't do it's job and James graft-versus-host-disease flares up causing skin and other issues.  Too high and it's highly toxic - which is what was occurring each time.  The only way to balance out his dosage is through blood draws (labs) to check his levels, which has to be done at the hospital.  It's kind of a guessing game and hence the need to come back on a regular basis to re-check his labs.  James calls drawing labs "getting poked" and is not a big fan but always handles it like a champ and is super brave.  The hospital uses a butterfly needle to access his veins and it's not a permanent IV that is put in.  They draw 4-5 vials of blood (he has a lot of labs drawn every time because of all his meds, hence a decent amount of blood needs to be drawn) then its done and the needle is out.

Fast forward to this past week and James was feeling really crappy again for the third time in 2 weeks.  Vomiting, sharp stomach pains, etc.  We assumed it was his Tacro level yet again and got him into clinic the next day to check his labs/numbers.  It is standard procedure with any immunocompromised kid feeling sick to check for literally everything under the sun each time (viruses, infections, and so on) and James came back with a positive for Rotavirus.  This is a pretty common virus in kids and it's pretty rough to get through for a regular, healthy kid.  James has actually had it before (during transplant) and it was not fun.  Most kids are vaccinated for Rotavirus at a few months old... James was when he was born but those vaccines were wiped out with his stem cell transplant.  Unfortunately he has not been able to be revaccinated since for this or really anything for that matter because of all the immunosuppressants he is on to control his GVHD.  This has hit James really hard.  Ultimately James was sent home and we were told to monitor him closely... he took a pretty rough turn with a 103.9 fever and no sleep for 2 straight nights along with lots of vomiting etc.  He was exhausted to the point where he couldn't stand or hold his head up much so we got him to the ER and his vitals were not in a great place.  His heart rate was 190+, his respirator rate was about 3x normal, and he was severely dehydrated with about 6-7% bodyweight loss since we were there just 24ish hours earlier.  The doctors worked pretty quickly to get an IV in for fluids, which is always a challenge for James.  He has very small veins and the dehydration makes them almost non-existent.  Getting an IV placed is much harder than the butterfly needles I mentioned earlier and almost always takes a few tries across both arms, which is what happened per usual this time around.

James' vitals are significantly improved and back into a normal range.  James' heart rate around 110 and his oxygenation is near perfect.  Cognitively he has been a bit slower to recover - he has not been as attentive.. not making a lot of eye contact... slower to respond etc.  Rita and I have obviously been concerned about this, especially with how dehydrated James was Friday night.  The doctors would like to do an MRI on his brain to check and make sure everything looks good.  This was supposed to be today, but given it's pushing 5 PM and we've been through this many times I can confidentially say it will be tomorrow at this point.  James just turned 4 so sitting still through an MRI is a tall task.  The last few times he has had to go under anesthesia for this and we're hoping to avoid that this time around if possible but it will be up to James if he's able to handle it or not without being put under.  Those machines are pretty loud and frightening for some adults so I totally understand why it's near impossible to get a kid to sit motionless in there for an extended period of time.

As today as gone on James does seem more alert than he did this morning, so we're optimistic the MRI will be find and this is all residual effect of the Rotavirus.  Because James doesn't have a great way to fight anything due to all his suppressing meds and a lack of ability to mount an internal defense on his own due to being on steroids for a year and half viruses such as this are a much larger challenge for him that it would be for a healthy four year old.

James' is getting sick of the 24x7 IVs, beeping and being bedridden but taking it in stride as much as possible. He is not happy to be here, which is what we want to see as it means he's eager to get better and get out of here.

We'll make sure to update everyone in the next 24-48 hours with more details.  In the meantime, I also wanted to take this moment to please ask everyone to sign up for James' Blood Drive (Click HERE to sign up!).  As many of you know, we held a blood drive in 2019 and had over 250 blood donations in the two day drive (THANK YOU) as well as many sign ups for Be The Match.  Without many, many blood transfusions James would not be with us today.  Times are tough right now for everyone... COVID, jobs, homeschooling, not being able to see your families, you name it... we all have struggles.  This is a free way to give back and no matter how bad life seems for you right now, it's worse for someone else and you can help make it a little better for them.  Blood donations are way down and already challenging in December to begin with.  The drive will be for two full weeks in December... 12/5 though 12/20 and you can visit any Vitalant center you want in either Chicago or Pittsburgh.  Why this week in December?  December 6th is the two year anniversary of James' "re-birth" and stem cell transplant.  There are many people in need, probably more than ever, of blood product at a time when donations are on the decline.  One ask is that if you intend to sign up please do it now rather than waiting so we can plan accordingly and have a good read on resources needed.  AKA don't wait to sign up, do it today... we and others need you.  Please share the sign up site with any many people as possible.  5-10 sign ups a day over the next 60 days = 300-600 donations.  Every single person counts and the only way we can get to those numbers is with your help sharing the message.

Lastly - thanks for all the support.  Appreciate everything more than you know.