• Home
  • Glow Walk
  • Journal
  • James' Story
  • Wall of Support
  • Donate To James' Care
    • Fundrazr Site
  • NBC Clips
  • Thank you...
MENU

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.
CLICK HERE to read

    Sign up for email updates on james' battle

Subscribe to Newsletter

Day +538

5/27/2020

7 Comments

 
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!
Sending love to you all!  We are hopeful we will have more positive updates to share after our June clinic visit.  Thank you all again for the support!

Rita & Dan
7 Comments
Scott L Goodman
5/27/2020 08:11:56 pm

So happy James is doing so well. Glad we finally got an update! Been too long! Stay safe and congrats on the move and your growing family!

Reply
Lauren Rappold
5/27/2020 08:50:54 pm

This is AMAZING TO HEAR!! ALL OF IT! This made my quarantine knowing James is doing well AND that he’s going to be a big brother!! Thank you so much for sharing and congrats!

Reply
Mary Perona
5/28/2020 07:46:31 am

Dan & Rita & James: We are so happy to hear this news. You have been on a very long journey. You are so much stronger now. We are grateful to God for James' continued progress. We have prayed for him for a long time and will continue. Perhaps this summer we can see him at Kathy's when all this pandemic stuff is behind us.

Reply
Hector Hernandez
5/28/2020 07:50:50 am

Congratulations, both news is good, in good time

Reply
Tracy Oktela
5/28/2020 03:15:22 pm

So happy to hear that James is doing so well! And congrats on baby #2 coming!

Reply
Laura G
5/28/2020 04:51:28 pm

What tremendous news! So glad to read the update and hear what James has to say about it! LOL

Reply
Janine
5/28/2020 05:21:24 pm

Congratulations McCarthys!! James will love having a sibling! So much good news. 💕

Reply



Leave a Reply.

    Archives

    December 2022
    September 2022
    August 2022
    July 2022
    May 2022
    April 2022
    February 2022
    December 2021
    October 2021
    September 2021
    August 2021
    June 2021
    April 2021
    March 2021
    February 2021
    January 2021
    December 2020
    November 2020
    October 2020
    September 2020
    August 2020
    July 2020
    May 2020
    March 2020
    January 2020
    December 2019
    November 2019

    Author

    Dan McCarthy, dedicated father and happy husband

      Stay up to date on James' battle:

    Subscribe to Updates on James
Powered by Create your own unique website with customizable templates.
  • Home
  • Glow Walk
  • Journal
  • James' Story
  • Wall of Support
  • Donate To James' Care
    • Fundrazr Site
  • NBC Clips
  • Thank you...