Day + 1,720

Well... it’s been forever since Rita and I posted an update on James.  The reason why is that James is simply doing fantastic and we feel as confident as ever that all of James’ medical issues are in the past and he is living life just like a normal 6, soon to be 7-year-old.  We aren’t naïve the fact that some things may pop up in the future… but we feel really good about cancer being in the rear-view mirror.  Issues on our mind (but not too much) are the health of James’ bones and lungs from all the medications and some known serious side effects and repercussions that can rear their heads a few years later with all he has been through.  That said, no signs of anything at the moment so nothing at all to worry about.
 
James will go in for his “survivorship” annual check-up in about a month – blood work, some scans, etc.  We have every reason to believe James will pass this with flying colors.  His energy level is a 12 on a scale of 1-10 and now that he has been 100% medication free his body seems to be in catch up mode - James has been growing like a weed the past 6-9 months .  For years James was not even on the growth chart… he may be single digits now, but he is ON THE CHART so making moves. James loves the fact that he has a solid head of blonde hair now and talks about it often… still wears a hat any chance he can get (like his Dad) since he was so used to it being bald for 2-3 years (unlike his Dad… for now… and hopefully a while longer).  We do have a few injections at home that we are supposed to give James if he gets sick and can’t generate a normal reaction (ex starts throwing up inexplicably) due to low cortisol levels from being on steroids for years.  We’ve never had to use those and hopefully his levels check out at his survivorship visits to throw those doses in the trash.  The doctors told us it could take 2+ years for James’ body to kick back into gear and start producing a normal response on its own.
 
One lingering PTSD-type after effect of the last few years is reading a lot into “what could be” anytime James gets sick.  A recent example – a few weeks ago James inexplicably couldn’t put any weight on his left leg for ~4 days... he didn’t injure it, so it was a real mystery.  In the back of our minds we were asking ourselves if this may be related to James’ bone health – he got some x-rays and everything checked out and the leg issue resolved on it's own a few days later.  

When James lost his hair (after growing it back post-chemo and stem cell transplant) it was because he got sick and his immune system rightfully activated but then started attacking his body as a result of his GVHD (graft versus host disease)… hence anytime James gets sick with just about anything from a cold/cough, stomach ache, etc. we get nervous.  It's all good though, as far as we know James is healthy an ox... just explaining that once it’s over and we can say "we’re past all" this there is a lot that still lingers in the background somewhere and that never really goes away.
 
James turns 7 next month – unreal!  He has been such a champ through all this and is starting to gain a little more awareness around just how sick he was.  We give him bits and pieces – not hiding anything from him but explaining things in terms and ways that he will understand and also not scare him.  He’s a truly amazing kid in so many ways and we an’t wait to celebrate his birthday with him – as well as do something fun (TBD on what) after his survivorship visit.  We also get asked from time to time about Maeve, James’ 3-year-old sister, and she is very healthy and has zero issues - outside of being 3 and being overemotional and throwing toys :-) So we are now one big healthy family dealing with the same stressors as other parents – driving to sports, homework, working on our manners, and figuring out how to have enough energy to get thru the day and make each one special for the kids.
 
As you all know well enough by now – life isn’t fair for many kids, like James.  He’s very, very, very lucky and fortunate to overcome all these obstacles.  For others facing tough situations we learned early not to let the statistic or odds define anything.  Unfortunately, there are more and more kids each day getting blood cancer and other diagnoses; we of course know families whose kids aren't as fortunate as James and didn’t make it through to see the other side of this terrible disease and live out their lives – as well as others still battling many complications.  James was recently selected to be the “honored hero” for LLS's (Leukemia and Lymphoma Society) Student Visionaries of the Year campaign.  Last year they raised over $1 million dollars and it’s just kicking off (soon) for this year.  We will be engaged in some speaking engagements and James will be the face of the campaign including a lot of social media and marketing material.  We are super excited to squeeze some more good and positivity out of this situation and can’t wait to get moving on all ways we can help LLS.

And then the other passion – one where we could use some support is Cal's Angels.  We would LOVE to have anyone that can make it join “Team James” for the Cal’s Angels Glow Walk on 9.23.2023 at Northwest Medical Field in Geneva (home of the Cougars baseball team).  If you can't make it we will gladly take donations as well :-). Shameless plug and I know everyone is asking for $$ for everything these days - I promise you this is a good and worthwhile cause.  Last year we raised about $13k and we are admittedly slow to get moving this year as the walk is in 31 days!  If you’re willing and able to join us in person please do – it’s so much fun and also very inspiring.  If you’re unable to, ZERO PRESSURE AT ALL (honestly) but any donations help and they go to a GREAT cause.  This $$ goes straight to pediatric cancer research… only 4% of cancer research funding is focused on kids so this $$ is desperately needed.  

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CLICK THE IMAGE BELOW TO JOIN TEAM JAMES OR DONATE TO OUR TEAM:

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 We’ll keep everyone in the loop on our progress as well as the results from James’ survivorship visit.  Thank you as always for all the support and apologies again it took us so long between updates!