Prayer Warriors for Carter & Preston

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Prayer Warriors for Carter & Preston

Carter and Preston's Journey with CGD (Chronic Granulomatous Disease) Preston's story:

Prestons's journey began in 2011 when he was 15 months old.

He had 2 swollen lymph nodes on each side of his neck. A few fevers here and there but nothing else out of the ordinary. After several rounds of different antibiotics, the swelling just wasn't going away, and they were severely inflamed. We ended up being referred to the childrens hospital in Wilmington, NC. They took him in for surgery and put drains in both sides of his neck for 2 weeks. Once the drains came out, he had weekly appointments to have the incisions cauterised. Eventually Nick and I had to start doing them at home. Not fun at all. Fast forward a year and the swelling was back. This time we were living back in Missouri. He went in to have the lymph nodes completely removed. He has had zero issues since then. Once Carter got his diagnosis, Preston was also tested for CGD. They both had the genetic disease. Preston will begin his BMT journey after school is out for the summer. Fingers crossed his goes smoothly and we only have to be in St. Louis for 3 months this time. ��

Carter's story:

Carter's journey began in December 2019. It started out with pneumonia and was treated with a round of antibiotics. He was fine until the end of June 2020 when the pneumonia was back and we would later learn that it never really went away. He was having constant fevers and basically round-the-clock Tylenol/ibuprofen rotation. Finally, we had had enough and decided to take him to the local hospital. He was treated for pneumonia for 2 days then sent home.

4th of July weekend he was still running a fever and just wasn't himself so we packed our bags and headed to MU Women and Children's in Columbia. He went through rounds and rounds of antibiotics and a lung biopsy during his 10-day stay but still, the diagnosis was pneumonia and we were sent home. August 2020 he had spiked a fever of 105 and this time we packed our bags and headed to St. Louis Children's Hospital where after a week and a half he was diagnosed with Chronic Granulomatous Disease (CGD). We learned that yes he did have pneumonia but because he doesn't have the cells to fight infections, those "fighter cells" had grouped together creating a lipoblastoma in his left lung. He had the lower lobe removed during that stay and would eventually have the entire lung removed in October 2020. After that, he would be on Actimmune injections 3x a week as well as antibiotic and antifungal prophylactic. The decision was made to do a bone marrow transplant as this is the only cure for the disease, and in December 2020 we found out that both boys had a 10/10 match. March 31st Carter had the transplant and his numbers were improving day by day. he was Released on April 19, 2021, and we made our way to the Ronald Mcdonald Apartments. At the beginning of May, labs showed that his numbers were dropping and the transplant was failing. We learned that pre covid, the cells were never preserved prior to transplant and were brought in fresh. The doctors decided to go with another approach with different chemo conditioning and fresh cells. Thankfully the original donor was willing to donate again! On June 1st, Carter started outpatient conditioning and was admitted on June 7th for additional chemo. Transplant was on June 15th and he was discharged on July 1st where we headed back to the Ronald Mcdonald apartment. His numbers were much better compared to the last post transplant numbers. Each week it was a roller coaster ride for lab results. Some numbers were improving while others were lower but we later understood that it was completely normal. Carter was finally able to return home on September 24th shortly after having his broviac removed. Since coming home, Carter has been getting back to his old goofy self. He is slowly getting weaned off meds and moving in the right direction. Mid October we took a family vacation to Colorado Springs and he did great considering the altitude change and having one lung. Both boys spent most of their free time riding bikes and making friends at the campground. Carter is truly a walking miracle.

14/05/2025

The book has finally went live on Amazon!!

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02/05/2025

It's here!! The link has the available platforms that are live and will be updated as more are added!!

The Strongest Boys I Know by Brooke Schmidt

29/04/2025

The book is coming!!!!

21/02/2025

It's been a while since I've posted an update on the boys!!

Carter - He's doing great. He continues to see hem/onc once a year for blood work and the pulminologist. The doctor says his PFT's if they were to be put side by side with someone with 2 lungs, you wouldn't even know he has only has one!! The chemo did not stunt his growth whatsoever as he is now 5ft and still skinny as a rail. The kid eats all day long.....lol

Preston - He is also doing great. He's getting his strength back. He's getting blood work every 6 months now with hem/onc and his numbers just keep improving. He's growing like a w**d as he's far surpassed his mama in height. He shot up to 5'8" overnight it feels like.

Both boys show fully engrafted. I thank the heavens and all of you for the continued prayers.

Life has been busy lately in a good way and I wouldn't trade it for the world. 4 years ago we thought our world was ending. God and all of our guardian angels pulled us out of the trenches and we put everything in his hands.

23/01/2025

Happy Birthday to Preston. #15

28/12/2023

It was a wonderful Christmas knowing there are no transplants coming up for these 2 boys!

Please keep Tuff in your prayers!

07/12/2023

This is Carter and Preston's younger cousin. You all prayed for a cure for Carter and Preston. Could you please pray a special prayer for Lil Tuff and his family?

Good morning everyone,

Let me start off by saying that this post is very much out of my comfort zone. I love to share pictures and memories of our lives, but I don't like to share our personal issues on social media. The only reason I am sharing this is because my son deserves all the prayers he can get.

This is not a post asking for handouts or pity, but strictly for BIG BIG prayers. For those of you that don't know, a few months ago Tuff was diagnosed with a genetic disorder called CGD- Chronic Granulomatous Disease. This disease makes it hard for anyone to live a halfway normal life. Luckily, in 2023 there is a cure for children with CGD. That cure is a bone marrow transplant/ stem cell replacement.

This process has and will include numerous blood draws, numerous tests, finding a 10/10 donor match, chemo, and the transplant/replacement.

I've always heard that when you pray, you need to pray specifically. If everyone can please pray that Tuff doesn't endure any pain during this process, that the doctors find a 10/10 donor, that the doctors do their best work with Tuff, and that Tuff has a perfect engraftment. Prayer comes more from the heart than from the lips, and it would mean the world to our family if everyone could send their heartfelt prayers for Tuff. 🩷

I am trying to sum this up the best I can, and if there is anyone with questions, please feel free to pm me.

If you feel it in your heart to donate or see if you are able to donate, not only to Tuff but so many other children or even adults, please sign up at BeTheMatch.com

Thank you. 🩷

Be The Match is a global leader in bone marrow transplantation and connects patients with their donor match for a life-saving marrow or blood stem cell transplant.

21/11/2023

We are settling back in at home. Preston has a checkup tomorrow and will hopefully be cutting back on some meds 🤞 His face swelling has really gone down and he has a lot of little hairs coming back!! Wishing everyone a blessed Thanksgiving 🦃

10/11/2023

Update: So Preston didn't get his line out last week like we hoped but that's ok because it's coming out today!!! Afterwards we head home!!! We are beyond excited and ready to get back to our normal life. Took 3 loads on the luggage cart to load up the Jeep and thankfully everything fit lol. Thank you to everyone's thought & prayers throughout this journey, we couldn't have done it without them!!!

01/11/2023

Word on the street is Preston is getting his broviac out tomorrow!! Then 1 more week left and we get to go home. We snuck home last weekend for some mental clarity which did wonders. We are counting down the DAYS!!!

01/11/2023

Prayer Warriors for Carter & Preston Carter came to visit me at work tonight!!! HAPPY HALLOWEEN 🎃

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