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Day +460

3/10/2020

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"

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 also had a great time at St. Baldricks supporting other kids and their families in their battle against childhood cancer. Thank you again to Rainn and Abbey for being so brave and shaving your heads in support of James - you guys rock!

Now the "less than great" news:

Earlier this month James came down with a stomach bug that hit him really hard... we ended up in the ER and the doctors needed to get James on some IV fluids and admitted to the hospital to give him a little help. It took the staff 4 tries and over an hour to get the IV places because his veins are so small, so that was stressful for James (and us). It was also a bit difficult after roughly a full year to be back on the 17th floor of Lurie's, even if only for a night. The in-patient medical staff hadn't seen James in a long time so they were thrilled to see him and how far he has come. Fortunately we were discharged the next day and able to head back home.

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 + 401

1/12/2020

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It’s hard to believe that on this weekend one year ago we were discharged from Lurie’s after James’ stem cell transplant. I went back and read that update this morning… you forget about what James was going through at that time and what questions were still up in the air that are answered today. A few that jumped out at me where:

1 - Our thankfulness of making it out of the hospital, together, as a family
2 - The gratefulness for James’ donor, who we now know is a great guy, Spencer, from Kansas City (Go Chiefs!)
3 - James had low energy at the time and was very up and down… not much strength and stamina. How the times have changed!
4 - Our worries about two potential complications post-transplant: (1) GVHD and (2) Relapse. We would have preferred neither, but #1 is much better than #2 any day of the week. James will keep battling and beat GVHD over time.
5 - That we wouldn’t forget about all the support we were given from all of you and so many and that we would find a way to pay it forward. We still have a ways to go here, but this is always on our minds.
6 - We were basically in “home isolation” until Day +100, had clinic visits every other day back at Lurie’s.
7 - That James came home with an IV and all the stress that was involved in not infecting his central line and properly administering his meds, day and night.
8 - That two weeks later we would be back in the hospital with breathing issues for re-admission, and it wouldn’t be the last time.

All-in-all, we feel great to be here 1-year later and able to write about some forgotten memories and most importantly making new ones with James every day.

Speaking of the future - we had James’ monthly clinic visit this past Friday. Our last clinic visit was before Thanksgiving- this has been the longest break from clinic/the hospital since diagnosis nearly a year and a half ago, so we feel very grateful for the break!

The visit was a bit longer visit than usual as they ran more tests given the 1 year post-transplant milestone. The team did a heart echo and an ultrasound which are not invasive and we aren’t expecting to see anything out of the ordinary here; we will know the results of this sometime next week. The medical team also drew additional blood to do a chimerism test. If you recall, this is the test done to see what percentage of James’ cells are donor versus his own. We have no reason to suspect anything out of the ordinary, but it’s really important that these results come back at >98% donor, which is the highest probability/best result possible. Anything less would be really bad news, but no reason to think that will be the case. We’ve had roughly 4 of these over the past year and the results have always come back at >98%, so let’s keep that trend alive.

The team also wants to do a another CT scan of James’ lungs, which is a bit frustrating. They just did this less than 90 days ago and it requires him to go under anesthesia for the procedure. They want to keep a really close eye on James’ GVHD, especially in his lungs where you need an inside look versus his skin where we can easily identify the symptoms and issues. We are not so much frustrated that they want to do the CT, just that we have to do it again so soon. The doctors know what is best, but we’re also afraid they they are going to say that nothing has changed given the short timeframe and then ask to do it again on a short timeline. This may seem hard to relate to, but when your son is on so (so) many meds and put through regular blood draws, occasional invasive procedures, exams constantly, etc. there is part of you that tends to push back a bit. The entire process is traumatic for a little kid- they are restricted from eating and drinking at all until the procedure is over. Also, as James says- it’s always “more waiting, more waiting” as you wait for the various doctors to check in and clear James for the procedure. We are, of course, understanding and grateful for the thoroughness of the medical team, but it is a long, hard day for a kid who has had more hard days than any kid ever should.

It’s’ easy to say why would’t you want to do everything possible to keep an eye on the GVHD and we do. There just needs to be balance with that and doing anything that could put James at any level of risk. For those that have been through something similar you can probably relate, but I know this is an argument or logic that may not land well on everyone if you don’t have perspective (which I hope you don’t.. that means you haven’t had to deal with issues such as this).

The doctors also agreed, as planned, to reduce James’ steroid down from 1.0 mL to 0.8 mL twice a day. We started this on Saturday and are really hoping that James handles it well over the coming week and that his skin GVHD doesn’t flare up. He also has lost some weight since his last visit 5 weeks ago, which was surprising to Rita and I. James eats well, and his favorite foods are pizza and bacon… so figure that one out. That said, the doctors told us that with all of James’ trauma his body may require more calories than others because it has to exhaust them to a higher extend repairing his body, which makes sense.

We’ll share the results of the echo, chimerism and the plan for the CT once we know more details. Until then we’re going to keep living it up… James is doing great and has more energy than the rest of our household combined which is a far cry from where we were a year ago at discharge. Gotta love and feel grateful about that!

And… for Spencer (and Diana) - Go Chiefs!

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Day +388

12/29/2019

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

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

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

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

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

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

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

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

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

Love you all and Happy New Year!

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Day + 370

12/11/2019

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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!!

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Day +362

12/2/2019

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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!

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Day + 355

11/26/2019

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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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Day + 353

11/24/2019

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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!

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