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Read up on james' story

Throughout the course of this journey we have kept a day-by-day journal... from the time of diagnosis, through all the ups and downs and into the present.

Click the link below to read all of the posts from 08-2018 through 11-2019.  Once there, click UPDATES to get up to speed on James' battle.

New posts will be located on this site, as well as the old (Fundrazr) site linked below.
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Day +1,461 (4 years!)

12/6/2022

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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)! 
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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!
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Day +1,387... Glow Walk 2022!

9/23/2022

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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.

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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!!!!!

Click the image below to donate or join Team James for the walk:
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Day +1,357

8/24/2022

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Quick update on James, as well as the Cals Angels Glow Walk which is in next month!

James Update:

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.  
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I mentioned in our last post that James has started to re-grow hair - which is REALLY starting to come in (spotty/not everywhere, which is totally fine... we'll take it).  We're also seeing definite signs of both eyebrow and eyelash growth which is equally amazing.  And most importantly, James is feeling GREAT and as full of energy and positivity as ever.
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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!

Cals Angels Update:

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.

Click the image below to sign/up or donate:

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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!
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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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Day +1,314

7/12/2022

3 Comments

 
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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.

Miracle #2:

This one is a head scratcher (no pun intended) as we’re seeing what we thought was impossible.  For the past 2+ years James has had zero, and I mean zero, evidence of any hair anywhere on his entire body.  Not on his head, eyebrows, eyelashes, arms, legs… nothing.   Every day for the past two years, Rita and I have discreetly checked for any signs of hair growth, hoping and praying that X new medicine would do the trick and finally kick his hair follicles back into gear.  Nothing.

About 7 weeks ago, we noticed some very, very tiny white hairs on James’ head.  The hairs were isolated to just a few spots on the top of his head- and you could only see them if the light shown a certain way and you were very close.  While we didn’t want to get too excited, the fact that we saw anything was both confusing, exciting, and hard to comprehend.  

After we did not see any re-growth in the first 6-12 months after James' hair fell out, we consulted with a pediatric dermatologist specializing in oncology patients.  We tried every treatment under the sun with no results.  Eventually, we were told that his GvHD attacked his hair follicles so badly that the follicles were essentially scarred and had little chance of ever growing hair again.  We were told that it was a similar situation to a patient with a bad skin burn (think 3rd degree), the hair is follicle is usually permanently damaged and the patient does not see any regrowth for the duration of his lifetime.  I am passing zero judgment on that assessment as often with a medical diagnosis it’s a process of elimination to land on a certain diagnosis… so we never lost hope, but it was pretty minimal. We had accepted that James would be his beautiful bald self for the rest of his life and we focused on ways to help James cope with his alopecia as he gets older.  

Apprently, his body had other plans.  We’re very excited to share that over the past month James has continued to grow more and more hair and it’s now very evident when you look at his head (with purpose, you have to be looking for it) that he’s starting to regrow hair over almost his entire scalp.  It’s pure white, so hard to see, but overtime that may change.  No eyebrows or eyelashes, but the fact his body is kicking into gear is truly a miracle that we never expected.
 

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 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!

Can’t say it enough – but THANK YOU all for your support.  I know you’d think we’d be used to it by now, but all the 24x7x365 support over the last few years has meant to much to us not just in the beginning but through this battle of getting James to this point and helping us get him across the finish line to a normal and healthy life.  Love you all!
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Day + 1,251

5/6/2022

4 Comments

 
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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.  

James has only been on a plane twice, once as an infant and again for a charity fantasy flight to the North Pole - so this was kind of like his first flight all over again.  Of course he thought everything was super cool, including standing on his seat and staring at the person behind us 5 inches from their face, which I’m sure they appreciated.  Also if you’ve never used an airplane bathroom with a child, and you’re 6’2” and barely fit in yourself, I’d highly recommend it.  Equally as fun.  James was also amazed that the bathroom light turned on and off when you locked the bathroom door- so that was entertaining for a good 10 minutes.

Once we landed in Orlando, an amazing volunteer (Denny) greeted us at the airport with a “James McCarthy” sign to escort us to our rental car.  Again, making James feel like the star of the show.  He thought it was SO cool!
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We packed up the car and got on our way to truly the most magical place on earth (it’s not Disney, it’s this place)… Give Kids The World.

Give Kids The World is a massive 90-acre non-profit that houses critically ill (or previously critically ill in our case :-)) children on vacations.  Even though it’s not owned by Make-A-Wish, it’s virtually all wish kids.  The story of how this place started is truly inspiring - I won’t detail it out but you can read it via this link:  https://www.gktw.org/about/henri-landwirth.php
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There are endless things to do and an insane number of amazing volunteers that give up their days and nights to staff the resort and make it the most magical place on earth.  The village can house about 190 families, most in their very own villas (see a million pictures below). 
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.

At breakfast each day a volunteer would help James get a tray and walk him around the cafeteria / restaurant to pick out wherever he wanted for breakfast.  If I wasn't supervising James, he would routinely come back with 2 - 3 full plates of food exploding off each side of his tray.  James' breakfast drink of choice was 50% sprite and 50% water from the pop machine. It was pretty much a "say yes to everything" trip and just let James do anything and everything.  James made many friends at breakfast, John and Lisa (pic below) were a few of his favorites and would even talk about them hours later, saying how nice they are and that they were "really good friends" and that he missed them.
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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.
Below is a video of James' first ever rollercoaster ride, Slinky Dog Dash.  You can gather he is 1/2 terrified and 1/2 excited... of course we immediately had to go on it again and this set the stage for a lot of other kid-friendly rollercoaster rides at the other parks.
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...
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We hope to be writing another update in June with the the fantastic news that James has been DISCHARGED from care.  Until then, we hope everyone has a great end to the school year... and will leave you with one last laugh.

This is a helmet James got at the Star Wars exhibit... found him like this in the bathroom the next day!  Saving this to show his friends when he's in high school...
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Day +1,223

4/12/2022

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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!
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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!
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We wish everyone a Happy Easter/spring season and cannot wait to report back with confirmation of James's DISCHARGE from treatment!

Sending lots of love!!

~ Rita and Dan
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Day +1,163

2/11/2022

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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.  
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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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Day +1,110

12/20/2021

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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:
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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!

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Family of 5-Year-Old Recovering From Cancer Holds Blood Drive

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.

James' story that aired 12/11/21 on the 97.1 The Drive, 100.3 SHE and 101.9 The Mix

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.  
Last December James had some concerning issues over the holidays and we are just living it up right now and so happy that this Christmas is going to be the best one we've had in the last couple of years.  So thankful for James, the miracles of modern medicine, and all the support of you all (our friends, family and strangers) and looking forward to an even better 2022.

One last shout out - if you haven't donated blood (and are able to... we know that not everyone can) - get out there and get it done.  Holiday spirit... people need you and it's the BEST way you can give back and save a life :-)
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Day + 1,092

12/2/2021

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In just a few days (12/6) it will be THREE YEARS since James' stem cell transplant - Happy 3rd re-birthday James!!  Each year since we have hosted a blood drive (the last 2 virtually due to COVID). 
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So with that said... the 2021 Blood Drive for James has officially begun!  I sent out an email about this a week or two ago, but the drive runs 12/1 - 12/31 across all 17 Vitalant locations and you can sign up and get details here:
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We are also supporting Cal's Angels as part of the drive... first off - I know many (MANY) of you donated to the Cal's Angels Glow Walk just a month or two ago.  To be clear, we certainly aren't expecting more donations from you and want to thank you for your generosity and being amazing / helping others.

Another really cool aspect of this drive is that we are able to put giant 36x24 poster boards in every single Vitalant lobby for the month of December promoting donations to Cal's.  These poster boards have James' photo and story on them so we're hoping that the thousands of folks coming into Vitalant will see this and be inclined to make a donation.  The poster boards look like this in case you are interested:
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We're hopeful to surpass the roughly 250 donors we had last year... and we have 2x the time to do it this year (the drive in 2020 was just 2 weeks long and in 2021 it's a full month).  Please spread the word as we noticed the last 2 years that many individuals came because someone in their family or a friends told them about the drive.... it's an easy way to turn 1 blood donation into 2,3,4,5... all donors also get a Free Large 1-topping Pizza and Free Pint of Ice Cream (Thanks Papa Johns and Culver's)!  Also - for any outside of the Chicago area, Vitalant is everywhere so if you go out of state just text me the location and date and I can have them manually track it.

Reminder:  If you want / are OK with your photo on the blood drive page take a picture while giving blood and either email it to contact@curiousjames.org or text it to Dan @ 630-707-1015.

In terms of how James is doing - overall things have been going REALLY well!  There are really just two things on mild/minimal concern recently:
  • James keeps getting these skin rashes on his legs but they don't seem to bother him too much.  We're thinking that it's likely his GVHD acting up and have our next visit at the hospital on 12/10 so we'll get the scoop then.  They aren't too concerning right now, its more the concern of anything escalating - but we'll worry about that if it happens and I feel its unlikely.
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  • After further review of his last CT scan on his lungs the doctors now want to go in and get another look.  Previously they told us things looked "great"... but on further review, the team wants to evaluate a hemangioma that was present on the scan.  Hemangiomas are generally benign vascular masses that go away on their own, so the team wants to take a closer look so they can keep an eye on it over time.  His team originally wanted James to be put under for an MRI in the coming weeks/month.  However, we've come up with a new plan to do an ultrasound (much easier and no anesthesia involved) as step 1 and take it from there.  At this point, nothing to worry about.
 James is LOVING pre-school and getting so smart these days... it's fun to see him grow up and be the happy kid that he is today despite all this crap.  We're also excited that James was allowed to get the COVID vaccine, of which he just got his 2nd shot this week.  Once the CDC approves additional shots for immunocompromised kids 5-12 years old James will need one more due to his immunosuppressants etc... so we'll do that when able.

We are really looking forward to celebrating Christmas with a much healthier James this year and a much more active baby sister Maeve!  We wish you all a wonderful holiday season.  Thank you all for your love and support!!

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Day +1054

10/25/2021

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First off - THANK YOU to so many people for your generosity and donating to the CAL'S ANGELS GLOW WALK.  It was a huge success with Team James taking the top fundraising spot... $12,671 in donations from Team James - all to going to a good (and much needed) place to help research and find a cure for childhood cancer.  This also meant James got to lead the walk for the entire event, which you can tell by the video below meant a lot to him (and us)!
 On the health front - we also had a longer clinic visit this past Friday... outside of his normal labs and monthly checkup with the stem cell team James also had a CT scan of his lungs + an appointment with his pulmonologist.  To refresh your memory, James was diagnosed with lung disease (broad / general term) a while back and put on some preventative treatments due to some concerns in the lower portion of his right lung.  These consisted of a percussive vest and nebulizer 2x a day which James has not been a fan of.  He's also on a number of medications to treat potential infections etc that could occur, which is always a concern.  For the CT James had to have an IV in for a few hours and he was a champ with having it in all afternoon.  Attached is a photo of us going down the elevator from his labs down to the CT.  He's looking like such a big kid these days!  
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Great news on the CT - James' lung looks MUCH better and, while not fully resolved/normal, the doctor said he looks "great" and they are very encouraged by the progress.  No more vest, no more nebulizer!  The stem cell team also made a slight decrease to his last remaining immunosuppressant, Jakafi.  We're using the Jafaki to combat everything from this lung disease, Crohn's, and his GVHD collectively so the fact that we're now going down on this is very good news.  We're making more progress on his medications after knocking off a few big ones this year already and I'm hopeful there is a chance we could be off or near all his medications in about a year at this pace.  This is HUGE because it may mean we can finally re-start James' early childhood vaccines... he got some of these before he got sick but the stem cell transplant wiped them out and he has been unable to get them due the immunosuppressants.  Right now James is out in the world without any protection from chicken pox, measles, rubella, etc.

On the less than great news front, James also had a follow up with dermatology a few weeks ago and they essentially told us that his hair isn't coming back.  While not surprising, we've been clinging to some small sliver of hope with the Jakafi and other treatments we've been trying.  In a nutshell when James' GVHD really broke out over a year ago it attacked his hair follicles and in simple terms scarred his skin making this irreversible.  Think of it as if you were burned over your entire body and that hair would never grow back (not a great analogy but you get the point).  It has been harder recently because James is starting to get teased more often and we've had some recent instances where he has been down about it.  It really sucks knowing this is going to be a problem for him for the rest of his life - but if it was between him having hair and being on 20 medications with lung and other issues or James making all the progress he's making and no hair I'd take no hair 100 out of 100 times.  I also try to think back to the times 3 years ago when this started and how lucky we are to even be where we are today... there are many worse things in life and many larger battles that he came out victorious on.  That said, it's still not hard to be upset that it has to be this way even despite all that.

Additionally - and I hate to even bring it up after we just asked everyone to donate to the GLOW WALK - but we will be doing a 3rd annual blood drive in December, so mark your calendars.  Details are still being finalized but it will either be a multi-week virtual drive or potentially an in-person drive, likely 12/11 and 12/12, in Chicago.  If the in-person does happen we will still have a virtual component for those that don't want to/can't trek down to the city.

So to wrap it up - great progress, great update on his health, and we're feeling really good about what 2022 will have in store.  We just need to keep it going and minimize the setbacks.  Thank you as always for the love and support - you all rock!

Dan, Rita, James (aka "The Flash") and Maeve (aka "Wonder Woman")
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    Dan McCarthy, dedicated father and happy husband

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