Day +388

It’s been quite awhile since we’ve written an update. In all honesty, all of us have just been trying to enjoy the holidays and all the moments we missed last year. It’s hard to believe we spent the entire month of December and a good portion of January in the hospital just 12 months ago.

Christmas for us in 2018 was sitting in isolation for the 5th straight week in James’ room and New Years I don’t even remember (not that it’s that memorable of a holiday to begin with). I mentioned to my brother this week that on our December ComEd (power) bill the statement said our consumption was up 89% as compared to last year which made me realize that we didn’t spend a single day at home in December 2018 and go the thinking about how great the past month has been. It’s nice to have to have a reminder about those times and that some of the sad memories are fading with time.

James has been doing great... his skin GVHD is really non-existent and we’re anxious for our next clinic visit in about a week to reduce his steroids back down again. He’s currently at 1.0mL twice a day and we’re anticipating him going down to 0.8 mL twice a day. A few months ago we were at this same point and hoping to go down to 0.8mL so we’re on pins and needles a bit around how he will respond with a lower dose. The last time we attempted this he developed skin GVHD within days... hoping we can get through it this time and keep moving forward. James has now been on both steroids and an immunosuppressant called Tacrolimus for a full year which isn't ideal. Anytime I hear of random healthy people passing away of things like the flu or pneumonia it hits home that James is very susceptible to these given his suppressed immune system. There’s always a caption that diseases such as this are only dangerous in the elderly and those with suppressed immune systems.. it sucks to be lumped into the risk group :-)

Rita and I know patience is needed but also really, really want to get him off these meds. It is difficult knowing that despite how great he feels and looks there is plenty of risk outside of our control the could hit him in an instant. I’m not trying to sound pessimistic, but just laying out some of the constant stress that is always there when dealing with the challenges James is still facing. We’re so thankful that the hurdles are all “maybes” or “what-ifs” and not actual situations he's up against. Right now it’s more of the mental battle as James continues on his road to recovery and not physical battles he's fighting. It’s also difficult that James has not really grown in 2 years (and considering he is 3 that’s 2/3 of his life)! I am not concerned about his height, but I am about his bone density and what that could mean for him over the coming years. That said, being mentally strong and positive is what got us this far so we need to keep that up.

It was quite the whirlwind at James’ re-birthday celebration... I just wanted to say thanks again to everyone that came from near and far to be there. It was difficult to find time to speak with everyone that attended, which was a good problem to have because it means we had a huge showing for the party and more importantly the blood drive. That said, if we didn’t get to catch up much Rita and I just wanted to reiterate our thanks for all your support and how much we appreciated you being there to celebrate with us.

For anyone unable to make the blood drive (or was turned away due to low iron, medication, illness, etc) you can still donate. Just find a local Vitalant center via the link below and reference James’ group code 581 and they will credit it to the drive. There are 125 locations all across the country, not just in Illinois.

https://www.vitalant.org/Our-Organization/Locations.aspx

We will absolutely be doing this drive again in 2020 and are targeting 12/5 and 12/6, so mark your calendars!

James’ next clinic is in 8 days. We will be sure to provide an update them once we know more about next steps on weaning James’ meds and the go forward plan.

Love you all and Happy New Year!