​Hello Team James!  We have waited a bit to write an update as this month has included a lot of ups, downs, and unknowns.  While James had a great start to his summer, enjoying strawberry picking, swimming at Grandma Kathy's pool, sleepovers with his cousins, neighborhood play dates and fun at summer camp, July has brought some setbacks.
 
As we mentioned in our last update, we were on track to reduce James' oral steroid (prednisolone) down to a physiologic dose at our clinic appointment on 6/24.  A physiological dose is essentially what his adrenal gland would normally make if he wasn’t on steroids to do it for him.  James has been on steroids to combat his GvHD for about a year and half, and we’ve been told that it takes roughly the same amount of time (another year and a half) for his adrenal glands to kick back in, hence the need to keep him on a small dose in the meantime while his body works through that.  Additionally, we have some shots that we can give him if his body needs it quickly (won’t go into detail into how/when that would occur).  After all this time and James working so hard to get reduce his steroid dosage over the past few months we finally got him down to that dose on 6/24.  We were so excited…only one month until we could potentially move James to a less potent steroid and finally (FINALLY!) start weaning down other medications.  As I stated earlier, we have been working toward this step since early 2018 and were anxious to start tackling other issues (lack of growth being #1 on the list since these steroids have prevented him from growing since then).
 
Unfortunately, as we have experienced in the past, stem cell transplant recovery is not without highs and lows, steps forward and steps back. After the Fourth of July, James started to experience bouts of nausea and headaches, seemingly out of nowhere.  James would be able to run around and play all day, and then within minutes of being his playful, energetic self, he would begin to complain that his head hurt and start vomiting.  With no other associated fever or other symptoms, we began to suspect that James' Tacrolimus (Tacro) levels were off.  You may remember that Tacro is one of the three immunosuppressant drugs (prednisolone and Imbruvica (chemo pill) are the other two) that James has been on to help keep his new immune system in check.  We brought James to clinic on 7/13 after our doctors told us to pause Tacrolimus for 2 days to see if that would help reduce some of his symptoms.  
 
James' Tacro level was higher than expected on 7/13 and the team decided to cut his regular dose in half.  Tacro is a tough one because if it’s too low it doesn’t suppress the immune system enough and if it’s too high it’s (more) toxic to your body, hence the headaches and vomiting.  While this was happening, and possibly due to the pause in Tacrolimus dosing, James' skin GvHD began to flare and he also began to experience more vomiting, diarrhea and overall not feeling like himself.  The doctors also noticed that, while every other lab result has come back with excellent results, one of James' labs has continued to remain abnormal.  
 
The doctors explained that, since we reduced the steroid to the physiologic dose in June, James' AEC or absolute eosinophil count has started to climb.  AEC is a blood test that measures white blood cells called eosinophils.  These white blood cells become active when you have allergies, infections or other diseases.  A normal AEC is between 50-350.  To illustrate, James' AEC number on 7/2 was 840, 7/13 was 1,850 and by 7/17 it was up to 2,800.   The team became concerned that, with the temporary pause in Tacro PLUS weaning of the steroid, James' immune system was not properly checked and it allowed his underlying chronic GvHD to begin to surface.  This manifested itself in lots of tummy issues for James and his skin starting to become drier and bumpier.
 
We introduced Imbruvica a few months ago with the understanding that it would have a similar effect as the Tacro and steroids and hence could help us get off of them.  That may still be the case, but it’s hard mentally giving him this everyday if we’re still pumping all these other drugs into him on top of it and not in substitute of it.  James is too young to understand how to take the pill so we have to break it open while wearing Latex gloves and mix it into his juice cup each morning.  Although you think we’d be used to this by now with the hundreds/thousands of doses of medication James has taken over the last 24 months but this one still gets me.  Every morning I am sitting there mixing a toxic substance into my son’s Paw Patrol or Trolls juice cup with gloves on because it’s not healthy for me to touch it and then sitting there making sure he takes it all down and puts it into his body.  I probably wouldn’t have as hard of a time with it if he could take the pill and just swallow it but it just speaks to the difficulty of all this… you get used to it but it’s still never easy.
 
So... back to the plan.  In order to combat what the team suspects in a GvHD flare, we were instructed to triple James' prednisolone dose on 7/17.  Although we were happy to do anything to relieve James' symptoms, it was a pretty rough blow to kick up the steroids again when we were so close to being off them completely.  Our hopes of moving on to the less potent steroid and beginning to wean off other medications has now been put on the back burner yet again.  As many of you know, the prolonged use of steroids, combined with all he has been through, has dramatically stunted James' growth.  Although we are so grateful that James is every bit the nearly 4-year-old he is when it comes to mental, emotional and social development, physically he is the size of a 2-year-old.  He has started to make comments like “I’m bald” and “I have no eyebrows” once in a while and is also become more aware of his size as he gets a little older.  That is all pretty rough as we don’t want his life to be any harder than it’s already been the last few years.
 
Thankfully, the increase in steroids has helped James' symptoms.  Over the past few days, he has regained his appetite and energy and (fingers crossed) has been able to keep all of his food/liquids down.  Given this change in symptoms, we were fully anticipating that the AEC number would go down when we re-tested James' labs on 7/22.  Not so.....The AEC is now 5,000.
 
Any cancer patients or cancer parents know the stomach knots that come with news that blood cell counts are "abnormal" and "trending in the wrong direction".  This kind of talk always leads me back to where we were two years ago, receiving news that James' white blood cell count was abnormally and dangerously high.  Our stem cell team has reassured us that the rest of James' lab results remain in great ranges and that they do not suspect anything else going on other than his chronic GvHD beginning to flare.  This eases some worry, but we remember how fast things can change, and not in a good way, in the oncology world.
 
For now, we are grateful that James seems to be feeling much better.  He looked so good in clinic that, despite the AEC going up, the team felt safe keeping the steroid at the current level and not increasing it again.  Our plan is to bring James back on 7/29 for repeat labs.   Once again, we will ask all of you, James' army of support, to pray with us that the AEC goes down, and that we can resume our path of medication weaning.  It is extremely hard to be patient with all of this, especially knowing how much James has already had to endure. I try to remind myself to be patient with James' recovery, he really has come so far.  You really are amazing James!  We love you so much! 
 
 

Update from Rita:

Hello friends and family!  We hope everyone is doing well and staying safe.  It has been a busy few months for our family since the last update (all the way back in March- back even before quarantine started!).  Details below. 

Over the past several weeks, we have been closely monitoring James' skin for any signs of GVHD flares.  Thankfully, his system seems to be handling the new immunosuppressant drug (Imbruvica) very well and we have not seen any red or dry patches pop up.  As Dan explained in previous updates, Imbruvica is actually a form of chemotherapy normally used in adults, so we had been worried about potential side effects.  So far, James has had a few bouts of nausea, but we have been able to keep them at a minimum.  We are so thankful James' system has taken to the Imbruvica, as this is key to getting him off oral steroids.  We still aren't seeing any signs of his hair growing back and he has lost most of what he was still hanging on to but he's young enough that he doesn't care.  It is a little difficult with everyone knowing or assuming he is is sick when we're out and about... but there isn't much of that going on with the quarantine lockdown anyways!

Speaking of steroids, we have been looking forward to our next monthly stem cell clinic so the team could evaluate James' skin and continue to taper his steroid dose.  We had our appointment today and are very happy to report that we were able to wean down the dose again... we're SO eager to get him off of them as it's been 15+ months already.  The goal is to have James completely off the higher potency oral steroid by the end of July. and move him to a different (and less strong/potent) steroid simply for maintenance.  This is exciting news for us, as the prolonged steroid use has undoubtedly contributed to James' lack of growth since August of 2018.  

To address this issue, James is now being followed by the endocrinology team at Lurie.  During our visit to Lurie this morning, we went to the endocrinology clinic so James could be weighed and his height could be measured.  The endocrinology team will be following his growth by 6 month intervals to evaluate additional steps we can take to help James catch up to other kids his age.  James also had a bone age x-ray and additional labs done and we are waiting on the results.  We're ager to get the results from the bone age test as it will give us some insight into his bone health and what we should expect going forward.  Once we have these, the endocrinology team can tell us what potential next steps might be (wait and watch, introduce Human Growth Hormone, etc.) to help him grow.

We also got to check in our with lung doctor, Dr. Laguna, during today's visit.  In true James form, he happily demonstrated how his lungs have been functioning by sprinting up and down the clinic hallways :)  Dr. Laguna was thrilled with his energy levels and also emphasized the major milestone he has had- it has been well over one year since James needed to be hospitalized for anything associated with his respiratory system.  Dr. Laguna mentioned this as a solid example that his respiratory system can handle other illnesses (cold, flu) without needing oxygen support.  The plan moving forward will be to continue his prophylactic (preventative) lung medications for 6 months after he is weaned off steroids.  After we reach the 6 month milestone, the team will likely want to do another chest CT to look at his lungs, and if everything looks good, he should be able to come off his lung medications.    

Our doctors also gave us the green light to allow James to go back to a preschool/daycare environment in the fall.  We are really happy they feel he is healthy enough to be in a full-day school environment.  James really loves being around other kids and learning.  All in all, today's visit was very positive and we are hopeful we will get more good news and a more definitive treatment plan from Endocrinology soon.

What else has been James been up to lately?  Enjoying his new house in Lombard!  Our family bought a house in Lombard and moved in on 4/30.  As some of you know, we had been planning to move back in 2018 to be closer to our families, give James more space and have room for our family to grow.  After James got sick, we put our move on hold to focus on his recovery, so this has been a long time coming.  

It has been a hectic few months, but the timing of the move couldn't be better- the three of us in our condo during quarantine could get stifling at times to say the least!!  James is loving having space to play with his toys and to run around.  We also got so lucky and have amazing neighbors with young kids.  While we will miss the city and Southport, it is amazing to see James being able to run around with other kids in the front or back yard.  We also love exploring the walking trails and many parks that Lombard has to offer.  

Having the additional space will also come in handy this fall... we are so excited to share that Baby #2 will be joining us in September!  James is still coming around to the idea of having a little brother or sister, but we know he will be a great big brother.  We cannot wait to meet the new member of the family!

Team James -

I've gone from 0 updates in 2 months to multiple this week. James is doing OK - he started his new medication today which is essentially a chemo-like drug. I think the severity of the drug "got real" when I realized I had to wear latex gloves to handle it... brought me back to reality of what we are putting him James' body. It arrived via FedEx and we gave him the first dose this morning.... will likely know more on how he is handling it over the next week (it's a fairly serious medication so we're hopeful but nervous). We are optimistic that this will help him get better and keep moving forward so looking for the silver lining here!

However, that's not the purpose of my update today; I unfortunately have some not very good news to share. There is another concern that has been weighing on me the past week that I haven't been able to share until today. One of my best friends, Chris Danly, was just diagnosed with pancreatic cancer this past week. Chris is a lifelong friend and literally like a brother to me. We played little league baseball together, football in high school, roommates during college, stood in each others weddings and have been lifelong best friends. His family is like my family and vice versa. Chris and his wife Crissy have been incredibly strong since getting the news, as have their two kids Paxton and Palmer.

Chris goes in for surgery next Wednesday to have his gall bladder, spleen and part of his pancreas removed. He will spend the next 5-7 days in the hospital and then 4-6 weeks bedrest while he recovers. We're hoping for more answers in the week following surgery but those are the details we have at this time.

How can you help?

1 - Make a donation by clicking HERE.

They have a battle ahead and a family to care for. Anything you are able to donate would not only help eliminate the financial stress and focus on what's ahead, but also show them how many people have their back (and even those they don't know/have never met)

2 - Keep Chris and his family in your thoughts and prayers.

This isn't a short journey, nor one I would wish upon anyone, let alone a best friend. Feeling for you Chris - stay positive and strong. If anyone can beat this it's you.

​Showing support early is critical so please do what you can if you're able to help

Thanks all,

Dan, James, Rita and the McCarthy Family

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Team James –

This is BY FAR the longest stretch (almost 2 months) that I have gone without writing an update. I recently realized that many have been in the dark on James’ status so my apologies for the extreme delay on getting this out to the group. We’ve had some ups and downs and every time I was ready to write an update there seemed to be details we were waiting on that caused me to delay… and so goes the cycle over and over again.

We’ll start with the good:
Back in January we were able to take James to Blue Harbor Resort in Wisconsin as part of his wish from Cal’s Angel’s. It was truly amazing as James got to spend the weekend with his cousins, aunts, uncles, and grandma’s and live it up for a few days. James is still a little guy because of the medications he is on… about the size of a typical 18-24 month old so he was banned from most of the waterslides but he took it in stride. We were able to sneak him on one or two he wasn’t supposed to be on and break a few rules… gotta start the "rule bending” early in life! PS in the video below James is saying "Thank you Cal's Angel's"

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James was also lucky enough to go to Disney On Ice with his Uncle Ryan and cousin Frank... I think his face hurt from how much he was smiling for 2 straight hours.  They literally hit every one of his favorite characters one after another... Mary Poppins, Mickey Mouse, Lion King, Frozen, Moana, Toy Story... they hit a home run.  This kid is pretty lucky to be living the high life recently with all these great life experiences and we can't thank Uncle Ryan and Tia Ruth enough for taking him.

We thought we were in the clear a few days later but he came down with the flu (I think from me, which made it that much worse) and was running a 102+ temp... so back to the ER. Surprisingly they let us bring James home and monitor him. It took him about 2 weeks to beat the flu but unfortunately that's not where the story ends. As many of you know James has been battling chronic GVHD - originally in his lungs and most recently with his skin. With James' body going into action to fend off the flu his immune system activated, flaring up his GVHD.... GVHD is essentially his immune system attacking his body. The result has been an increased severity of his symptoms that we are having a difficult time getting under control.  As a result James developed a pretty severe rash over his entire body and we have been back at Lurie's every week for the past few weeks.  We more than tripled his steroid dose this past Friday and also increased his tacro (another immunosuppressant). Over the weekend we noticed that James is starting to lose his hair as well; it is thinning out and when you brush his head with your hand or a comb you see it in your palm.  James was back at Lurie's Monday and they are concerned about the escalation of his GVHD and that he isn't seeing much improvement with the med changes (yet).  The doctors also explained that his hair loss is the GVHD attacking his hair follicles, which could potentially be permanent if it gets severe enough. Sigh.

Our plan right now is to add a new drug called Ibrutinib. We're waiting on insurance approvals since it is typically used in adults and not children (and costs a lot of $$ which I am sure delays approvals further) but we may be able to start him on it this week if all goes according to plan.  We're less than thrilled to be adding a 3rd immunosuppressant on top of his current meds... I put a photo of his current daily meds below so you can see what he has to deal with. He takes all of this on his own one after another - pretty amazing for a 3 year old. This new med has some pretty scary side effects (increased chance of cancer, tumors, kidney and liver issues, etc)... one even says it could lead to "a very bad brain problem".... it goes on to explain what that means but that's an interesting way to start a sentence. All that said, James has been on a million drugs with major side effect possibilities so it we aren't reading too much into it, but the more of these you stack up in his body for year(s) the more stressful it gets. We're really hoping this works and quickly as the alternative/next step would be to put a permanent PICC line (IV) in James' arm for another medication that would require us to be at Lurie's two days a week for infusions. The PICC line comes with a whole host of other quality of life issues, especially for a 3 year old, so we aren't even thinking about going there mentally right now.

On a positive note James' skin looks a little better today and I don't think it's optimistic thinking on my end so hoping that continues overnight. He has not been able to sleep because of the itching so looking for a good nights rest tonight. He's happier than even despite all this so that's a blessing in disguise... resilient little guy. Was hoping 15 months after transplant we'd be past talk of more meds and IVs but it's never a straight path despite how much you want it to be.

Keep James in your thoughts but all in all we're doing pretty well... just need a good week and we'll be moving back in the right direction. I also promise not to take a 2 month hiatus from updates again!

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Day +370... also known as Day + 1 year and 5 days.  That feels really good.

Rita and I would like to start by again thanking everyone that showed up this weekend for the blood drive/bone marrow registry and/or James' party.  I know there were some that could not attend due to illness or other reasons so thanks for the efforts, it meant the world to us!

The drives were very busy and many of you waited a significant amount of time to donate... I know that was a lot to ask, so thank you.  Many travelled from near and far... it was truly amazing.  From co-workers, friends, family that went way above and beyond to fly or drive here... and to James' donor, Spencer, his wife Diana and mom Pam... THANK YOU, the weekend would not have been the same without each and every one of you.  

It was surreal to meet Spencer and spend some time with him and his family.  They are all kind, generous, and so warm.  We feel so lucky to call them part of our new extended family! Couldn't think of a better match for our loving little guy James, and we can't wait to get out to Kansas City and meet the rest of the family sometime soon.

Our goal for the blood drive this weekend was getting to at least 250 units of blood... and we hit 251!  Since every unit of blood can help save up to 3 lives, these donations will help up to 753 people in desperate situations.  There were also many that came and waited in line but could not donate for various reasons... THANK YOU... although we couldn't take your blood it's the effort that counts :-). You showed up in support and we'll never forget that.  And to St. Andrew and St. Alphonsus, along w/ Vitalant, for the months work organizing the drives and dealing w/ me :-)
 
I spoke with Vitalant this evening and they agreed the drive was a huge success and that they rarely, if ever, see numbers like this for a first-time drive. It typically takes years of doing a recurring blood drive to get this type of turnout.  This makes me even more excited to do this annually and celebrate each year James knocks down in this ongoing battle.  Two years post-transplant is officially considered remission, so there will be a lot of celebrate in 2020.  We will target 12/5/2020 and 12/6/2020 for the drive so mark your calendars now.

We also registered roughly 50 new people on the bone marrow registry.  Spencer mentioned to us that this is how he signed up on the registry years ago... so one of these 50 could be the next to get called this year, next year, or in 10 years to save another life just like James.  If you are still not registered on the registry PLEASE sign up... it's extremely easy and you can use the link here:   

Click Here: bone marrow Sign Up 

Tis the season to share this as well when at family parties etc. for the holidays.  Every person added to the registry matters… there are people out there dying every day waiting for a miracle which likes exists but just isn't registered.  

Last but absolutely not least a huge shoutout to the D'Agostinos (Scott and Sara) for their generosity this past weekend, Shawn @ Hyatt for making Spencer & Diana's visit to Chicago special, our families (and especially my brother Ryan) for organizing a great weekend for them, our mom's for sacrificing their retirement and watching James this past year, Santa, Wrigleyville Engine Co.78, ... and everyone for all their continued support.

I also pasted links to all the media that was done to support the event here, from NBC to WBBM Radio, the Daily Herald newspaper, Lurie's, etc.  Additionally, I posted a video from WGN from the Fantasy Flight James went on Saturday and you an see him in the video w/ Ronald McDonald.  He had the time of his life, so thanks to Cal's Angels for making this happen!
 
You can see these videos here:  http://www.curiousjames.org/james-story.html#/

We will be posting pictures from the Re-Birthday party soon.  Thank you all again - we will never be able to say it enough.   Happy Holidays/Merry Christmas!!

We’re 5 days out from the blood drive and are really picking up steam on enrollments (THANK YOU)! A huge shout out to D’Agostino’s for putting box toppers on 5,000 pizzas over the course of the past month, as well as multiple local businesses for hanging flyers and posters in their windows out of the kindness of their hearts.

In case you missed it, we were also able to get James’ story on NBC to promote the drive (thank you Pat Danly for making the connection!) and to Lauren Petty @ NBC for all her work on the segment. You can view the clips here:

http://www.curiousjames.org/nbc-clips.html#/

These efforts have absolutely helped us close the gap on enrollments... although we still have a good amount space available and need to fill that up so if you haven’t signed up please do so today at:

http://www.curiousjames.org/blood-drive.html

I’ll be at the drive all day Saturday 12/7, so if you’re coming then.. see you there! Rita and James will not be at the drive on Saturday due to a once in a lifetime opportunity James was selected for via a charity called Cal’s Angels. I’ve mentioned Cal’s in the past.. it’s a great NFP organization that helped us and many other families on our floor at Luries. James will be going on a “fantasy flight” which is essentially a real flight out of O’Hare which takes off and cruises for a bit before landing back at O’Hare which is decorated and setup as The North Pole.

Sunday 12/8 I’ll primarily be at James’ Party at D’Agostinos but plan to stop by the drive, hopefully with James and Rita as well, for a bit. That will be TBD.

For those attending James’ party on Sunday 12/8 I wanted to get a quick note out that no presents or gifts are necessary. I wasn’t sure if we made this clear in the past so wanted to re-confirm with everyone on this update so we’re all on the same page :-). This event is to celebrate James, and all of you that have supported us along the way... James IS the gift! The best (and only!) gift you can give is a blood donation if you’re willing and able.

James has been doing great... the amount of energy he has is truly incredible. He LOVES to run and it’s reassuring that we constantly see him doing this for hours on end without any breathing issues knowing that his lungs aren’t perfect largely due to all his time on the breathing machine. We went up to Lake Geneva, WI for a night this past weekend with friends for a Christmas boat ride, breakfast with Santa and some indoor swimming. As you can imagine James was in heaven.. it’ll probably take him 2-3 days to recover from all the non-stop playing.

This past Friday Rita and I were able to connect with James’ donor, and his amazing wife, for about a half hour. We are so excited to meet them this coming weekend and can’t effectively put into words how grateful we are for what they have done to help James and our family. They seem like great people, which is no surprise given what James’ donor selflessly did to help us save him.

I’ll likely send another update prior to the drive and party, but wanted to say thank you to the many, many friends and family involved in promoting the drive and helping us make an impact in the community for those truly in need. We cannot wait to celebrate with everyone this weekend!

Update on two really FANTASTIC pieces of news that have come to fruition in the last 48 hours

1 - Tune into the NBC Nightly News in Chicago tonight at 6:00 PM... Rita, James and I will be on promoting the blood drive!  So excited (and THANK YOU to Pat Danly for making this happen!  You rock)!

2 - We finally received the contact information for James' donor yesterday!  I won't share a ton of detail since this is all fresh, but we are SO EXCITED to meet him and his wife in person at James' Party.  He lives in Kansas City and seems like a really great guy... I am biased here since he saved our son's life :-)  I am now a Chiefs, Royals, and anything else Kansas City fan for life.  Brought a tear to my eye yesterday and made me look back at how truly lucky we are.  More to come... but VERY EXCITING DAY!

And... SIGN UP FOR THE BLOOD DRIVE!

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Before I get into an update on James - we still have roughly 70 spots available for the Blood Drive on 12/7 (Saturday) @ St Andrew and 50 on 12/8 (Sunday) @ St. Alphonsus.  Every single person that signs up make a difference. Two here and two there will help us get to capacity, so please sign up or share this with anyone in the Chicago area!  

I setup an easy to use website to enroll in the blood drive here (it takes less than a minute):  

http://www.curiousjames.org/blood-drive.html#/

James is doing great, minus the elevated meds that he is still on to combat his cGVHD.  He is starting to get "puffy" again from the steroids... so we're really hoping to get those down at our next clinic visit, even if just a bit.  The steroids have turned him into a bit of a maniac again, so we're up against that at night/during the night lately.  

Since my last post James' has been living life up - we went to the Bears Game together, saw Paw Patrol Live, explored the Museum of Science and Industry, Frozen 2... it's been a solid stretch and he is one lucky kid.

​Lately Rita and I have been discussing how we can help James continue to learn and develop at home since he is not permitted to go to daycare, etc.  We loves playing with other kids and ends up more than his fair share of TV due to his situation.  Finding some more structure in his day is a top priority right now - he's a super smart kid, so we want to keep it that way and help him learn and develop.  Open to any suggestions if you have them!

Hope to see you at James' Party 12/8!