Bartek Soja

Home
Bartek Soja

Fighting CGD (Chronic Granulomatous Disease) through the Stem Cell Transplant

21/04/2022

We’re at our annual check up today. In 5 days he’ll be 4yrs after Stem Cell Transplant. Where did the time go?… Every time we’re in a hospital it seems like it was yesterday though. Bunch of appointments today, bone density, pulmonary testing, blood work, stem cell team, immunology, so far so good (knock on wood) some of these tests results will be in a few days🤞

💚💜💚💜💚💜💚💜💚💜💚💜💚💜💚💜💚

Dzisiaj roczna wizyta kontrolna na hematologi w klinice przeszczepow. Za 5 dni minie 4 lata od przeczepu, a wydaje sie jakby to bylo wczoraj. Wiekszosc wynikow bedzie dopiero za kilka dni ale ogolnie, odpukac “chlop zdrowy jak ryba”😉

02/12/2021

It’s been a while since we posted here…He is doing great but…This time of the year always brings bitter-sweet memories. It’s been 4 yrs since our “roller coaster” started in mid December of 2017. We spent almost 2, the most miserable months in the hospital and we started getting him ready for transplant.
He is cured from CGD today and his GI Dr, in the next several weeks, will wean him off the last pill he takes, that maintained his bowel…”Good Bye” Flagyl - fingers crossed 🤞… He will only be on his growth hormone meds.

$Uugghhh...Back to practices and this time we have a fracture🙄...He is not a happy camper, he’ll be off from playing base...$

18/05/2021

Uugghhh...Back to practices and this time we have a fracture🙄...He is not a happy camper, he’ll be off from playing baseball for a while 😔

27/04/2021

This kid should have VIP entrance to all medical facilities 🤦‍♀️ He injured his hand last night at baseball game, we suspected tendonitis or tore muscle but X-rays are not conclusive and looks like he may have a fracture 🤦‍♀️ Going home with splint and needs to follow with ortho.

27/04/2021

It’s been 3 YEARS already and it seems like yesterday.
💚💚Life begins at day 0 !!!💚💚
Happy 3rd re-Birthday to our hero!!!

16/04/2021

Annual visit at “Star Survival Clinic”. We’re almost 3 yrs post Stem Cell Transplant. Actually tomorrow the 16th will be 3yrs we started our journey and he got a first dose of chemo.... Today’s appointment went well. Some of the labs came back and they look great, still waiting for Chimerism and T-cells, but these will take a few days to come back.

💜💚💜💚💜💚💜💚💜💚💜💚💜💚💜💚

Jesteśmy prawie 3 lata po przeszczepie dokładnie jutro 16-go, 3 lata temu Bartek dostał pierwszą chemię. Dzisiaj nasze roczne badania generalnie wszystko wygląda dobrze podstawowe badania krwi w normie na resztę czekamy.

02/04/2021

It’s been quite a while since we’ve last posted. He’s been doing really well. Today is our almost 1 yr mark (10 months exactly) since we’ve started growth hormone therapy. He grew 13.3 cm which means he went from 5% to 33% tile on a growth chart within 10 months of having daily shots. Amazing 🤩 more labs and x-rays today to check his bone platelets. Fingers crossed he has more time to grow 🤞
The biggest growth-his feet 7.5 last June 11.5 now 🤦‍♀️😂 every 2 months “mom I need new shoes “ 😉😂

30/06/2020

Finally after long battle with insurance company we got him aproved for Growth Hormone injections. We actually started the Genotropin 2 weeks ago. These are daily subconscious shots 💉, “piece of cake as he says”🤦‍♀️😂 and he does them to himself, no more mama’s help needed 😳😩😂. We’ve got a growth wall chart, He is a little over 5’1” (157cm) his goal is to reach that big number 6 on it! That way he would be 6’ or a little over 180 cm.

22/05/2020

The recent labs are back and he DID FAILED The STIM test, which is what we’re hoping for. The growth hormone stimulation test measures the ability of the body to produce GH. The test is performed by administering the amino acid arginine in a vein to raise hGH levels. The normal level for children is 10-50 ng/ml his highest peak was 7.5 ng/ml. Fingers crossed Insurance will aprove his GH shots this time, it still will be a little tricky because he did had a growth spurt since January but it’s because he just went into the puberty. One more test today, head MRI to make sure his pituitary gland is OK since it’s the one responsible for producing GH.
And sure we need and ultrasound to find his veins 🤦‍♀️ nothing new 😉

💚💚💚💚💚💚💚💚💚💚💚💚💚💚💚💚💚

Mamy juz wyniki ostatnich testów. Bartek nie przeszedł testu stymulacyjnego, co oznacza ze jego organizm nie produkuje hormonu wzrostu w wystarczajacej ilości. Prawidłowy poziom to 10-50 ng/ml. My osiagnelismy max 7.5 ng/ml. Czekamy na odpowiedz z ubezpieczenia. Dzisiaj MRI głowy, sprawdzamy jeszcze przysadkę mózgowa która to właśnie jest odpowiedzialna za produkcje HW.

14/05/2020

We have a little “marathon” with Lurie’s this week. All the rescheduled appointments from March and April were moved to May 🙄
We’re here today for the “Stimulation Test”. The test will measure his growth hormone levels. He jumped on weight from being on 5% tile almost his whole life (before the transplant) to 50% which is be good if it goes along the height growth. Unfortunately his growth jump is only from 4% to 13% tile. 2 months ago insurance denied the growth hormone injections because he is producing the growth hormone even though it’s a minimum level. That’s why we’re doing the stimulation test and for the first time ever we want this test TO FAIL. Otherwise if he passes it on a minimum level again insurance will deny the injections again and with the amount his body is producing on its own he will not have much of a growth spurts anymore and being 14 his bones will probably be open for another 2-3 years only. Keep your fonger crossed he FAILS the test!!!

💚💚💚💚💚💚💚💚💚💚💚💚💚💚💚💚💚

Dzisiaj kolejna runda. Test stymulacyjny
badajacy poziom hormonu wzrostu.
Niestety pomimo ze mamy wzrost jesli chodzi o wage nie idzie on w parze z przyrostem wzrostu. W pierwszym podejsciu ubezpieczenie na podstwie pierwszych badan, nie pokrylo nam zastrzykow hormonalnych poniewaz jego organizm produkuje sladowe ilosci hormonu wzrostu. Dzisiejsze badanie ma wykazac ze ilosc hormonu jest nie wystarczajaca do prawidlowedo przyrostu wzrostu. Wiec po raz pierwszy chcemy aby test wyszedl „negatywny” aby go po prostu „nie przeszedl”. Czas dziala tu niestety na nasza niekorzysc, Bartek majac 14 lat bedzie mial „otwarte kosci” jedynie przez nastepne 2-3 lata a pzry tej ilosci hormonu wzrostu co produkuje jego organizm, mozemy liczyc na zaledwie pare centymetrow w gore...

Address

Website

http://www.cgdsociety.org/whatiscgd#typesofcgd

Alerts

Be the first to know and let us send you an email when Bartek Soja posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Want your practice to be the top-listed Clinic?

Country:

City:

21/04/2022

02/12/2021

18/05/2021

27/04/2021

27/04/2021

16/04/2021

02/04/2021

30/06/2020

22/05/2020

14/05/2020

Address

Website

Alerts

Shortcuts

Share