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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.

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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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Picture
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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    Dan McCarthy, dedicated father and happy husband

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