Day +752 - Blood Drive Success & James Back in the Hospital

Hello all - 

First off, THANK YOU for the amazing support and making James' Blood drive a huge success this year.  We had a total of 219 blood donations and many Be The Match signups for the National Bone Marrow Registry.  Although we came up a bit short of last year's 253 donations, the showing this year was incredible with all the obstacles (mainly COVID) in the way.  There were also a TON of first time donors which makes it all that much sweeter knowing the impact you all are making that wouldn't have otherwise happened.

A quick update on James... it's been a bit of a tough week as we've been at the hospital 5 of the last 7 days... and that trend will continue tomorrow since we're currently admitted on the 17th floor.  We had a scheduled clinic visit at Lurie's on Monday 12/21 as a follow up to our appointment two weeks ago.  Earlier in December James' AEC and white blood cell count were both very high and as a result we've been coming on a more regular basis to keep tabs on what may be occurring.  The visit wasn't anything out of the ordinary, but over the next 48 hours James started with some major digestive issues, going to the bathroom 20+ times a day and running intermittent fevers with occasional headaches.  If you recall about a month ago (ball parking the date.. it all kind of blends together) James was re-admitted for about a week with a virus that hit him pretty hard.  We were concerned about his hydration after that experience and didn't want to wait too long and allow him to get behind, which can be dangerous for anyone but especially for someone that is immunocompromised with some underlying health issues.  We brought James in early on Wednesday 12/23 and the doctors placed an IV and ran some fluids to a lot of labs.  We collectively decided to leave James' IV in his arm and head home for the night.  James was a champ about it and didn't complain all night as he knew that leaving the IV in would mean he didn't need to get it replaced the next day which is quite the process.  James' veins are very tiny, and especially so when he is dehydrated.  For context, earlier that week it took over an hour and 5 tried to get a simple blood draw done (which is a smaller needle than an IV catheter) so anything we can do to avoid having re-place IVS to additional needles is a plus.

On 12/24 we returned to clinic for more labs and more fluids and headed home by lunchtime.  James' constant bathroom issues persisted on Christmas Eve and Christmas Day with a fever coming and going... by Christmas night we were considering brining him down to the ER but after talking to the doctors a few times on the phone we decided to wait it out overnight.  James was improving slightly but took a bit of a tailspin on the Saturday the 26th.  Although there are closer hospitals to us our goal is always to get to Lurie's as his needs are fairly specialized with his medical history so I raced him downtown to the ER.  When we arrived his heart rate was pretty elevated and they had the room filled with medical staff immediately which is never a great sign.  That said, we stayed very calm as this wasn't our first rodeo and knew that James was in OK shape despite the urgency from past experience.  The team placed an IV and got fluids going... eventually admitting us around 10pm to the 17th floor.  We've run quite a few tests to figure out what is going on and the running hypothesis at the moment is either an infection or a virus yet again.  On the virus front, everything has come back negative outside of some cultures that just take a long time (day/days) to get a read on.  James had an x-ray earlier today and will have an EKG and heart echo tomorrow.  The EKG and echo are things we needed to do soon anyways as there are certain routine checks such as this with all the medications James is on / his prior cancer diagnosis.  The good news is these are not invasive so they should be a breeze tomorrow.

The team drew an insane amount of labs a few hours ago to check everything under the sun so we're hoping we get some direction on the likely cause soon.  That said, sometimes no one really knows and we're OK with that as well if he just starts to feel better.  He's been remarkably patient with everyone and when he isn't feeling crappy has been singing and being a happy four year old.

Although you can't understand him, this is James being a good and saying "Hey guys, I'm doing alright"

We'll be in touch again soon - but again, thank you for all the support on the blood drive and for being there for us constantly.  Looking forward to getting James back home we at least feel fortunate that he was able to be home Christmas morning to open his presents and have some fun before this took a turn south.  In true James fashion when we told him we had to be admitted and stay the night he didn't complain at all... the only thing he said, which was immediate, was that Maeve would miss us and be sad we weren't home.  He's such a sweet and strong kid - hoping he gets some relief soon and we can get back to a normal-ish life at home.  

- Dan, Rita, James and Baby Maeve