Hello Team James!

We are a few days late, but we wanted to give a quick update in honor of James' 7th birthday and the upcoming GLOW WALK this weekend!

We are so excited to participate in the Glow Walk on Saturday.  The weather is looking perfect for Saturday night- if you don't have plans, please join us!!  I have included the link for registration below.  If you are having any trouble registering, please let us know and we can help.

Here is the easiest way to join Team James for the Glow Walk. To register: Go to our Team page: TEAM JAMES 2023

Not only is the event a blast, but it helps raise money for Cal's Angels, an incredible organization supporting pediatric cancer families, patients, and research.  One of the many amazing things that Cal's does is to fund vital research efforts into more effective and less toxic therapies for pediatric cancer patients.  

If you have been following James' journey since 2018, you know that part of preparation for a stem cell transplant involves administration of some of the strongest chemotherapy drugs out there.  While 100% necessary to give the transplant the best chance of working, there are many risks associated with these drugs, including what are known as "late effects".  These late effects include issues with delayed growth and development, organ and tissue malfunction, learning and memory problems, social and emotional adjustments, and higher risk of cancer later in life.  Cal's helps fund research efforts into less toxic treatments to give pediatric cancer patients even more hope of having a long, healthy, cancer-free life.  Cal's recently helped fund the Echo 550, which helped identify promising new drugs to fight bone cancers.  Please see the article below for details and how our fundraising dollars are truly making a difference:

https://www.calsangels.org/blog/echo-550--life-changing-drug-combinations-discovered

All of this is a reminder that the cancer battle doesn't necessarily end when a child reaches remission. While we absolutely celebrate every hard fought victory James has battled to get to where he is today, we know others are out there fighting cancer or its late effects and we want to do all we can to keep pediatric cancer research efforts in the forefront.

On the topic of late effects, James will have his first visit to the STAR clinic at Lurie on Monday, 9/25, to discuss his long term recovery plan.  It is hard to believe, but we have not been back at Lurie for over a YEAR! James is now part of the recovery program and only needs to be evaluated in the clinic once per year.

STAR stands for Survivors Taking Action and Responsibility and was designed to help pediatric cancer patients navigate potential late effects of treatment and help further the research regarding the pediatric cancer survivor patient group.

We aren't 100% sure what to expect during Monday's appointment, but we know it will involve a blood draw and discussion of James' physiological and psychosocial development and growth.  We very much expect the visit to be positive, but as Dan has mentioned in previous posts, there will always be a bit of fear.  More than anything, we are incredibly grateful that James made it to the STAR program and that the staff at Lurie will be monitoring him as he grows up.  

Speaking of growing up, it is hard to believe but James turned SEVEN over the weekend!!  James had a blast celebrating his birthday over the weekend with both a flag football and soccer game (see some Action shots above) and dinner at his favorite restaurant, Greek Islands.  The next day we ran out some of the kids' energy with an American Ninja Warrior themed birthday party.  Shout out to Ultimate Ninjas in Elmhurst for showing the kids an amazing time!

We'll provide another update after the STAR appointment, but for now, we wanted to thank everyone again for your support, love and donations to TEAM JAMES!  The amount of support you all have shown is inspiring and we are so very grateful.  I always say that I will never be able to say thank you enough, and it's true!  Thank you! ​

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.  

Today is a VERY (VERY) special day for us and for James.  It's hard to believe that FOUR YEARS AGO today, 12/6/2018, was the day that James received his life saving stem cell transplant - officially marking what we have coined his "re-birthday" today.  

​Of course we have to thank Spencer, James' donor, for making today possible.. without you James would not be with us today (quite literally)! 

It's hard to think about those times four years ago but we do often as it keeps us grounded on how lucky we are to be where we are at today.  As many of you are well aware, it has not been a smooth four years but James is hands down the BEST he has ever been and we truly believe his problems are in the rear view mirror.

Typically this time of year we host a large blood drive - and are committed to getting back to this in 2023.  We decided not to host the drive this year but would please encourage everyone to donate blood  - there are TONS of people in desperate need that are depending on you for live saving blood transfusions.  If you donate at Vitalant James' code (in Illinois) is still valid, which is ORD0009F and can be given at time of donation.  That said, donate anywhere... the most important point is doing it and not where you do it :-)

James has been living it up - most recently this past weekend with a really special trip to the "North Pole" sponsored by United Airlines and (locally) Cal's Angels.  James and other kids that are in/have been in battles against cancer and other critical illness arrived at O'Hare this past Saturday for a special Fantasy Flight to the North Pole.... the flight was about 45 minutes - with every Disney / kids character imaginable (Batman, Avengers, all the princesses, etc), Ronald McDonald, Benny The Bull, Tommy Hawk (Blackhawks mascot), elves, and of course Santa and Mrs. Claus.  It was the experience of a lifetime and Maeve got to join in the fun as well.  Some photos below, but they don't do it justice.

In any case - just wanted to get a quick update out to let you know that James is doing GREAT and we are so lucky to have him with us 4 years after his stem cell transplant.  James and I have not had a haircut in years... I have been keeping my hair buzzed to mentally support him, and me to some extent, until he could get one.  Looks like we might both be our for our first haircut in years this Friday which is pretty special :-). Love you all and thank for the insane amount of support over the YEARS!

​I will leave you with a few snapchat filtered pictures... something James recently discovered and thinks is hilarious.  He certainly has a love of life and living it to its fullest!

It's been a great week!  Friday was James' 6th birthday, Monday night was the Annual Make-A-Wish donor reception and tomorrow is the Annual Cal's Angels Glow Walk!

Birthday was great - few photos above from our family dinner at Benihana to James' trampoline park party the next day w friends.  Most importantly James is feeling and doing FANTASTIC!

Make-A-Wish... this is the first donor event they have had in 3 years due to COVID.  It's an event to celebrate.  Rita, James and I were able to attend as wish recipients and speak at the event.  James was SO PROUD to be there and loved every minute of it, as did we.  Below is a clip of the comments we were able to make to the group... many have likely seen this already since I posted it on Facebook/LinkedIn but wanted to include here as well in case you aren't on social media.

And now on to the Glow Walk.... which is TOMORROW!!  We have a massive entourage attending (50?) to support James and to support this great cause.  THANK YOU, THANK YOU, THANK YOU to all those that have donated, joined our team, and/or have helped spread the word.  

In 2021 Team James raised $12,921... in 2022 we have raised $13,503 (with a day to go, and we aren't slowing down...) setting a new team record.  

$25,000 raised by YOU ALL in the last two years - simply amazing.  This money will go 100% to supporting pediatric cancer research as well as the families with kids in a battle against pediatric cancer.  

We and all those families truly appreciate the generosity and know the joy that someone this money will bring to little ones at the hospital as Cal's volunteers make the rounds and try to find ways to brighten the day of those and their families in an impossible situation.

James is SUPER EXCITED for the walk and can't stop talking about it.  He's also really happy to have so many friends and family coming to support Team James - so thank you for making it special.  If you have not been in the past - it's an AMAZING event... boucehouses, petting zoo, every super hero you could imagine, inspiring stories, face painting, dance party/DJ, concessions are open, a great walk and substantial fireworks show.  

There is still time to join our team or donate by clicking the image below if you have not already.   Would love to have you there if you can make it - you will not regret it I promise.
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Thank you as always for all your support... LET's GLOW!!!!!

James is doing FANTASTIC since we received his discharge from cancer treatment a few months ago.  Today (8/24) was his first day of preschool and he/we could not be more excited for him.  

In our last post we mentioned we were officially discharged from Lurie's - but it turns out we still had to go back 2x since (routine stuff)... most recently this past Friday for more bloodwork and labs.  Everything checked out and we are now free and clear for a full year... just survivorship visits annually.  We will need to do some local blood work in 3-4 months as James' body is still not creating adequate antibodies from the multiple years of steroid and immunosuppressants - it could be another year+ before he makes progress there.  Until then, we keep some emergency medication on hand at home (injection) but thankfully haven't had any need for it thus far.

So in a nutshell, life is great, James is great, everything is great!

It's that time of year again... and we need your help (yes, yet again).  I wouldn't ask if it was not critically important... Cal's is an AMAZING organization that both helps fund pediatric cancer research and assist the kids and families battling childhood cancer.  They have a huge presence and the children's hospital and can't tell you how much all their support meant to us during our time spent there.  I know gas costs an arm and a leg,  the flight you just tried to take got canceled 3x, and your favorite restaurant has no servers and we're still in an ongoing battle with a pandemic... life isn't ideal at the moment and hasn't been for awhile.  As rough as it seems, there are kids and families out there that have it much worse and REALLY need our help.  Please consider joining "Team James" via a donation or in person on 9.24.22.  You can accomplish either by clicking the Cal's logo below - and feel free to share this link out.  We had an amazing turnout raising over $12,000 last year because of your support and your willingness to spread the word.

Below is a video, from last year, of James leading the walk... and loving it.  If this doesn't inspire you to join the cause and donate I am not sure what will :-)
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James also made his way onto Cal's yard signs this year!

And last but not least - a few more photos of James since our last update...

We appreciate you all and THANK YOU, as always, for your support thru all the ups and downs (but all up's right now and hopefully forever)!
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Miracles on miracles lately!!

We are just full of good news the last few weeks and James is in the best and healthiest place he has been in years…. Since before he was sick.  It feel great to say that.
 
Miracle #1:
 
This may be “old news” for many at this point given I posted an update on Facebook in June, but never sent an update via James’ site so all may not be aware as I know not everyone uses Facebook these days.  Both Rita and I attended James’ last clinic visit, which has not happened in a long time as we usually switch off due to work schedules and COVID protocols, but we both wanted to be there for what we anticipated to be a special appointment.  At that appointment James was officially discharged from treatment after nearly 4 years.  Surreal moment for us and so happy for James.  As part of his discharge we also stopped virtually all of James’ remaining medications, effective that day. He is free and clear to go live life without monthly trips to clinic for lab draws.  We’ll migrate to a regular pediatrician and only need to return to Lurie’s once per year for a survivorship workup, labs etc.  Again, I know many are likely aware of this because of our Facebook post but wanted to share again in this update to make sure all knew the great news.

Here is a video of James "ringing the bell" that day as well as few from Navy Pier in Chicago which is where we went that afternoon to celebrate with James.

 We had been cautious to tell anyone, including James, about this – but he is now aware and others are as well due to it being more evident.  Both Rita and I have been making a huge effort to tell James that he is perfect with or without hair and try to not focus on it too much by getting him too excited.  Not sure what direction this will ultimately take, if he will lose it again, if it will be spotty… etc. so we don’t want to make a big deal out of it.  That said, we’re very excited for James because his alopecia is becoming increasingly difficult for him.  Our family is used to it, but it’s not easy seeing most people passing by do a double take when walking past James and kids unintentionally pointing out his differences (kids will be kids) and the difficulty that has and will continue to present for him.  Now there is a chance that won’t be the case for James in the future, and that is amazing.
 
All this said, the MOST IMPORTANT part of all this is James is feeling great, he has officially beat cancer, his other complications (Crohn’s, GVHD, lung disease) are showing no signs of being present and he’s on a path to a normal, long and healthy life.  Incredible to be able to say that after all this time and all the obstacles James has knocked down one after another and never looked back.
 
On an unrelated note - we received a really cool song from Give Kids The World (where James stayed for his Disney Make-A-Wish Trip)... we (Rita) sent them and https://www.songsoflove.org details about what James loves in life and they made this song for him.  He thinks it is pretty, pretty cool!  Thank you!

We just got back from our Make-A-Wish visit to Disney… which was literally the trip of a lifetime!  This update may be a bit long, but given how long you all have been supporting James we thought it worthwhile to give you a glimpse into how special these Make-A-Wish trips are for kids.

Our trip started with a super stretch limo (aka “limbo” according to James) arriving to bring us to the airport.  As you can imagine, James thought he was the king of the world in this thing.  Despite the fact that it snowed in Chicago a few days before we left and was NOT warm out we spent almost the entire ride with the window down, blasting music and making trucks honk their horns.  

At the time we were there the village was under 25% capacity because of various COVID reasons and the village (and Make-A-Wish) just getting back into approving and planning trips again.    The best part about this place were the amazing volunteers... 100% of whom are focused on making this the most incredible experience ever for all the kids.  It was also, in some strange way, a relief for James not to be the different kid but rather different was the norm there... really good for him to see and live that to get perspective on his situation, even at just 5 years old.

James also received a star to put up in the "Castle of Miracles" - something every wish kid that visits gets to do.  It's both inspiring to see all the stars and sad.... there are over 175,000 them in the castle.

The village also had Halloween one night, Christmas another, etc... it was pretty cool that the repeat this every week for a new round of kids 24x7x365.

​The parks themselves were obviously fantastic... we were VERY spoiled as we had a fast track to the front of every line and every park we went to.  The longest line we waited in was probably 10 minutes and for many rides it was just a few minutes when everyone else was waiting an hour or two for some of these rides.  James' skin is pretty sensitive in sunlight so not being in the blazing heat (no complaints, it was great) and having more control over our day was HUGE.  In a normal trip to the parks I would imagine you'd do 4-5 rides and James got to do 3x that and some of them more than once.  

​All that was amazing (and we will never experience it again at this level) - but really it was amazing because of the amount of joy it brought this kid and feeling so special while we were there.  The memory of the time we waited (or didn't wait) will fade as the years go on but what won't is everything about this trip being special for James and him being the star of the show.  That's what made all this great.  Here's a few videos of James being goofy in the limited lines we did have to wait in, often making all the people around us laugh with his silly and warm hearted nature.

James was able to meet a ton of characters at the parks (and at Give Kids The World) which was pretty cool.  Many of them could tell he had some health challenges due to not having hair and spent way more time talking to James than usual... the really went out of their way to make it super special and memorable for James.

It truly was the trip of a lifetime and something we all will remember forever.  We are so grateful that James felt so great during the trip and could really enjoy the magic of GKTW and of Disney.  Thank you again to the amazing people at Make a Wish, GKTW, and all of you for supporting us over the last 4 years.   Please know we wouldn't have made it here without you and are so happy to be sharing good news on these updates!  Now to some photos...

Update from Rita:

Hello Team James!

It would be hard to top our last update, but I think James might have done it, with a BIG assist from the amazing people at Make-A-Wish! Details below :)
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As a quick recap, after our last Stem Cell clinic appointment in February, we received the very happy news that James could finally stop all immunosuppressant medications with an eye toward removal of ALL meds by the end of cold/flu season.  We were thrilled with how much progress James has made since he came off steroids last summer, but cautiously optimistic as to how he (and particularly his skin GvHD) would do without the Jakafi keeping his donor immune system in check.

We are so excited to report that James has had no issues since Jakafi was removed and we are on track to be MED FREE by the beginning of summer.  James and I met with his stem cell doctors on Friday to go over our discharge plan (it feels surreal to even type out the words "discharge plan", but in the best way!).

James' blood work has looked consistently normal at our monthly follow ups and now that his GI issues are under control, the team feels comfortable with transitioning James to the survivor clinic soon.  First, the team needs to make sure that his new system is developing antibodies from the early childhood vaccines he has been receiving during our last few visits.  James received his last early childhood vaccine on Friday and at our next appointment in 4-8 weeks, the team will test his blood again.  If his bloodwork shows antibodies are present, James can come off ALL of his remaining meds (Penicillin, his inhaler, and a pill he takes for lung protection).  The only thing left for him to take will be his Gummi vitamins, which is basically an excuse to eat candy at breakfast time, an excuse of which I am a big fan!

Assuming his labs continue to look good, we will officially be discharged from Stem Cell Clinic and James will transition to Survivor Clinic.  He will be assigned an oncologist to monitor his remission and we will check in only ONCE per year!  I haven't begun to process all of the emotions I have surrounding a probable discharge from stem cell clinic. It has been such a huge part of our lives for nearly four years, it is hard to put the feelings into words.  For now, the one word that keeps coming to mind is gratitude.  How grateful we are to be in this position, how grateful we are to Lurie's and all of James' caregivers, to our families, friends, and all of you, James' Army of supporters.  Every day that we get to see James' big smile and his adorable dimples, hear his sweet voice and his awesome laugh, it is a true gift.  Thank you all, I won't ever stop saying it or be able to say it enough.

Speaking of gratitude, we are also so very grateful to the incredible people at Make-A-Wish, especially our volunteers, Tracy and Olivia, and our wish coordinator Danielle, for being able to surprise James with a trip of a lifetime to DISNEY!

We were contacted by Make a Wish back in 2019 and had selected Disney as then 3 year old James' wish.  After COVID, we weren't sure when or if we could make a trip to Disney again, but were thrilled when travel wishes were started up again in 2022.  The plans have been in the works for a long time, and we were finally able to make it official this weekend to surprise James.  We have included the video below- it was such an incredibly special moment.  We cannot wait to see the pure joy on his face when he visits the parks for the first time and experiences the special resort Make-A-Wish partners with for these trips (more on that to come in future updates).   Just the fact that James is well enough to go make this trip happen.... we are ecstatic.

While James has some awareness that he was very sick when he was younger, thankfully he does not seem to remember how sick or how often we were in the hospital.  We have explained to him a bit of what the purpose of this trip is, to bring joy to someone who has been through and overcome so much, but he likely won't be able to fully grasp its meaning until later in life.  For now, he is like any other 5 year old, counting down the days until vacation and Disney World!

We will be sure to share lots of pictures and fun memories from the trip.  Speaking of... we received and AMAZING picture frame (pic below) in the mail but not sure who it is from.  Please let us know if you sent it!

Today is a GREAT day!  I've been waiting, admittedly too long, to write this update because we knew James had a clinic visit scheduled for today, 2/11... and wanted to get some details from that visit before writing this.

We have been working so hard for over 3 years to wean James off of medications - with complications, as you know from reading these updates, we've gone through long periods of adding, subtracting, adjusting, but never making the progress we have been hoping for.  Well today we finally feel like there is some end in sight for James to be medication free and closer to a normal state of life.  Like all of our clinic visits, they start with labs (blood draws) and there's quite a few vials with all the tests the run... 5 or 6.  As you can imagine, James isn't a fan and is becoming increasingly vocal about this as he gets older.  James' labs from this morning looked very good and as such we're making some major reductions to his medications.  James will be stopping 3 medications as of tonight - Jakafi, Acyclovir, and Fluconazole.  More importantly, after years of being on immunosuppressants we can officially say goodbye as Jakafi was the last of them.  

Rita took James to clinic today and when she texted me about the medication reductions it brought tears to my eyes - which isn't common if you know me - knowing how far we've come and the progress James has made, especially over the last year.  James is down to one single oral med, one pill and an inhaler.  That's a far cry from the below image - let alone when James had a port, IVs and other non-oral meds.  

All that said - there is even better news from today's visit.  If James handles this well (as we expect him to) the plan is to go off the remaining medication once cold/flu season is over, meaning James could be 100% medication free by May or June.  Additionally, the team mentioned that with James being medication free he would be officially discharged from Lurie's and only need to come back for an annual survivorship visit.  I was speechless - none of this was anywhere on my radar and this has simply been part of James' life... for a longer period of time than before he was sick.  Just so happy for James... and really hopeful that he will be able to put some part of this illness behind him for good.  And many of you have read these updates for years - we won't stop them - but wanted to say thanks for all the support along the way.  It has not been easy, but it's been much easier because of you all.  Much more than you know... the support has meant so much to us.

Not to be a downer, but the unfair loss of his hair, and potential issues with his growth will never go away and we think about it everyday. More than once a day. It is becoming a bigger stressor in James' life, so that part will always remain.   But for James to be well, not on medication, not sick anymore... can't think of anything better.

In other good news, James received 3 more of his early childhood vaccines today.  Poor kid's leg is pretty sore but we are so excited he is getting more protection and his immune system is getting stronger everyday!

Last but not least - we never thanked everyone for the blood drive and that's long over due.  We greatly appreciate everyone that donated - in December there was (and continues to be) a huge need for blood right now.  I am also aware that the sign up process isn't the smoothest and that the free pizza and ice cream coupons were at times non-existent at the locations as promised.  I know you didn't donate for those reasons, but apologies for any confusion... I'd rather have a somewhat broken process and get the blood donation in that not hold the drive.  So THANK YOU as I know it was a commitment!  And - thank you for the donations to Cal's Angels as well... REALLY APPRECIATE IT!

Time for a beer, glass of wine.. or something else to celebrate.  One of the most positive steps forward I can think of in recent memory.  Go James - we love your fun loving attitude, how great of a big brother you are to Maeve, and how you've handled all this in stride over the years... we're so proud of you!

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We've been busy the last week or so trying to hit the PR trail and get as many people as possible to donate to the blood drive before things really slow down next week with the holidays.  

First off - THANK YOU to the many folks that have already donated - WE APPRECIATE IT MORE THAN YOU KNOW!  

​As a reminder, the blood drive runs through 12/31 and you can click below to get to the sign up page:

Now on to the media blitz :-)   I was able to grab some time with NBC Chicago last week and they ran a segment on the blood drive + some commentary on Cal's Angels.  Click the NBC logo below to view the segment... thank you NBC and Lauren Petty!

Additionally, I was able to do an extended interview with 3 of Chicago's major radio stations that they aired a little over a week ago.  Thank you to Rachel @ the Sherman & Tingle show for making this happen.

Thus far drive numbers are down quite a bit from both 2019 and 2020... so we're really hoping to see a surge in the final 10 days to bring it home.  This year has been especially tough with blood donations, and this month there is no exception with everyone distracted due to the holidays.  We run the drive in December for 2 reasons:  (1) there are huge needs in December due to the lower than normal turnouts... blood doesn't keep long in terms of shelf live, so a continued and constant supply is essential; (2) to celebrate James' "re-birthday" which is December 6th of each year.  So happy that we've made it 3 years and very proud of James to see the great kid he has turned into (or should I say maintained because he was pretty great before as well.. but I am admittedly very biased).

On the health front, James continues to make progress.  James had a clinic visit on 12/10 which consisted of his usual labs, a heart Echo, and EKG, an ultrasound of his lungs, and a boat load of vaccines (7).  James received his usual vaccinations as a baby/kid but those were all wiped out with his stem cell transplant and he has been unprotected and unable to get them due to his compromised immune system + all the medications he's been on.  This is round 1 of all those standard vaccines, so we'll have more to do, but really grateful that he is finally in a place where we can do this and reduce the risk of some other random illness wreaking havoc.  In summary - things are looking up with no new issues or concerns!  

As a result of the positive clinic visit we moved down on some of James' medications... completely stopping 2 and reducing a few more by 20-50%.  No timelines are ever really given on when James may be medication free but doing simple math on the weaning schedules we're hopeful and optimistic that by mid-next year James could be off most, if not all, of his medication.  Of course that's us as parents talking (not the doctors) and any hiccup could set plans back as we've experienced many times in the past.  That said, right now things are looking up and we keep making progress which is absolutely fantastic.