Kicking CGD With Tucker

09/23/2024

This past Saturday, Sept 21 was World Bone Marrow Donor Day!

I haven't posted here in forever -- once again I remind you that no news is good news and we are very thankful for not needing to share any new significant health updates. Tucker is doing fabulous.

Bone marrow donors are heroes. And this little guy gave his bone marrow for his little brother at age 4.
The bone marrow registry is in constant need of donors.

Are you between the ages of 18 and 35? You could save someone's life!
And I'm pretty sure donating marrow, if you're a match, is much easier than it was for Eli at age 4.
Check out blood.ca for more information and eligibility! You just might save someone's life.

12/03/2023

10/24/2023

For some reason I had Oct 26 in my head as transplant day 0. But in this year of trying to remember so many details while also trying to forget the sad parts had me a little mixed up.

TODAY IS 1 YEAR POST TRANSPLANT ✨️

What a triumphant milestone 😀

Celebrate with us and eat a little treat or do a little dance.
We are tearing it up at the RMH this week for his next round of checks, speech therapy, blood donation and the zoo!

Feeling just as excited as we are? Comment with an excited selfie so the kids can see all of the fabulous people we've had in our corner as we've moved through this heavy medical year.

Christopher Hill and I thank everyone who has sent donations, prayers, encouraging words and positivity. This is OUR village of support! And we couldn't do it without you all.

10/19/2023

This day last year, Tucker had pulled his central line and damaged it on the inside.
This made the chemo meds pool into all kinds of odd spots. Just look at the swelling!
In order to deem his line officially in need of repair, he was sent for an X-ray with contrast.
While an X-ray with contrast is usually no big deal, and it was clearly able to show us that there was multiple cracks in his line, he hadn't been exposed to contrast media before and because we were moving quickly, they didn't do a scratch test or anything to check for allergic reactivity first.
Sure enough, minutes after returning to his room after the X-ray, he started with rigors (shakes) and began to breathe very wheezy.
THIS IS WHY THERE ARE CALL BELLS IN HOSPITAL ROOMS
The nurse was called, who called many many friends along with her. Tucker's doctor happened to be on the ward at the perfect time too and jumped into action.
2 doses of epinephrine later, oxygen and some asthma medication and he came back to being OK again - anaphylaxis reaction to the contrast media.

And oddly enough, his allergy testing since then is clear. He didn't show any reaction to the contrast media. Is it perhaps that his new cells mean he's no longer allergic? Is it maybe the fact he's no longer under stress of chemo?
All I know is that God was present that day, when everything fell into place and all the right help was readily available.

These pictures are after the whole event settled again and he was given some ice for the swelling. Thankfully, he will never remember the fear that came along with that and I will never forget the allergy (lol).

10/15/2023

This day last year started the big admission.
Eli and Oakley said goodbye to Tucker who they were only able to see through the glass window on the door for 30 days to follow (other than day 0 which was the only exception).
There's also a shot here of the bed that the parent who stayed with Tucker slept on. Which thankfully, we switched every second night until the last week. Definitely not a comfortable bed lol

10/13/2023

One year ago today, Tucker had his central line and PICC line placed.

These allowed him to receive medications, chemo and eventually his brothers cells without needing to poke an IV in every time.

10/04/2023

Today is the first day post transplant that Tucker is not required to take his meds! He's officially weaned from all medications.
What a milestone 🙂
Tucker will be going for his one year post transplant checkup later in October. I'll make a better update about everything else then.

08/10/2023

Treat yourself TODAY and the blizzard proceeds go to our local children's hospital.

For those of us in NWO, they go to the Children's Hospital at HSC Winnipeg.

Tucker has spent about 40+ nights at the Children's Hospital in Winnipeg, so this is near and dear to my heart.
The truth is, you never really know if you're kids may be in need of medical care until they do. Invest in the health of our children ♡ and treat yourself while you do it 🙂

08/01/2023

CLEFT REPAIR TOMORROW

Tucker has done fabulous in the CGD/BMT front! And now we shift gears to cleft palate repair.

Keep us in your prayers as we travel to the city, as he goes in for his 2.5 hr surgery to repair his cleft, clip his tongue tie and maybe also place ET tubes in his ears.
And pray for a speedy and uneventful recovery filled with comfort.

Send also, all the energizing vibes as we deal with interrupted sleep and a cranky guy (at least for the first few days).

🦷😀👅👂💚

05/10/2023

You know exactly why this day means so much to us!
Sharing just in case you want to capitalize on each a treat for yourself and extra donations to RMHC!

Today is ! A portion of proceeds from ALL McDonald's Canada purchases ALL day will help RMHC and families from your community!

05/05/2023

Happy Friday!
Here's a joyous update since it's been a little while.

Today is day +203 (where has the time gone!?)

The first picture in this pair is a picture I took of Tucker the morning we were admitting him to the hospital, the following day was the beginning of chemo and conditioning.
The second picture in this pair was taken yesterday in the same highchair, same RMH kitchen.

I had a conversation with a person at the Cancercare clinic who was contemplating BMT for her daughter. She mentioned how despite all of the chaos these kids go through, all of the medical interventions and challenges that press on to these kids, they still continue to grow and thrive and learn to he the silliest little people! SO true!

Thankfully, from a scientific/medical point of view, Tucker's numbers are sitting right where they're intended to be. His white blood cells, neutrophils and even his hemoglobins and platelets are all within normal ranges. His chimerism (the test that shows donor vs host cells - ideally mostly Eli's donor cells) is holding steady at 89%
89% may seem a bit low, however, the breakdown in the paperwork shows that specifically in reference to neutrophils he's got 97% donor cells (the part Tucker didn't have "in working condition" on his own).
The reason it's brought down is because the lymphocytes responsible for viral infection fighting are about 50/50 donor - host (still manageable because Tucker has working lymphocytes prior to transplant). This is OK as long as Tucker and Eli's cells continue to play nice together.

OK, now with all that gibberish, I'll add some more pictures in the comments of life over the last couple months.