Glory Bee Designs

UPDATE 6.17.25
🙏🏼 🙏🏼 🙏🏼 🕊️ ☀️
Please pray for Landon’s Kidneys and gut. His kidneys shut down last time they had to give him meds to keep the virus under control and his gut has ulcers all the way up and down.
We are waiting on a few labs (if Jeff’s t-cells can help is one) but we need to move forward treating a Landon with the same meds that landed him in the ICU for this adenovirus that resurfaced due to low immune system. They said if the virus gets out of control, it will be catastrophic for Landon. Worse than the side effects we have been dealing with from treating it. We aren’t sure how much his kidneys will be damaged because they took a major hit with the last two treatments.
He is still on dialysis…but it won’t filter that med 😕 but it can help with fluid intake and output.

If Jeff’s cells react to the Adenovirus, they will be collected next week but a week is too long to wait without treatment to help Landon fight this.

Landon may also have TA-TMA. A transplant complication that is treatable but we can’t treat it until after the treatment for this virus.

Landon still isn’t mentally with us. No I live you’s, no kisses, so far sleeping for the 3rd day but he needs it. He is having trouble keeping his airway clear so we are managing by manual suction. He is coughing well so that’s a plus.

Landons liver is looking a little better on ultrasound but the labs are still climbing. Balancing liver recovery with all this is delicate balance. Bilirubin is still climbing along with a few other liver labs but a lot has happened over the past few days that would stress it.

He has bruises from the EEG (brain monitor) which he didn’t get the first time but, his platelets have been low because of everything so he gets injured more easily.

I am scared. Trying to be strong. Praying God will hear our prayers and get Landon through this. 🙏🏼 We have had little wins here and there.

❤️‍🩹Discharge from his G-tube is less bloody so is his stomach pump.
❤️‍🩹Chest x rays have Looks es better each day.
His stomach isn’t as tight.
❤️‍🩹The drain in his abdomen is putting less fluid off which means his liver is handling fluid a little better.
❤️‍🩹Landon is still peeing on dialysis which is a good sign the kidneys are still working. However, not good in the sense this viral med will get to the kidneys because of that so, his kidneys will be effected by this med.
❤️‍🩹Landon is moving his tongue a little more and helping us suction.
❤️‍🩹Landons vitals overall are good.
❤️‍🩹Landon hasn’t had any additional bacterial or fungal infections despite his extremely low immune system and so many things in his body.

I read a great book a while ago about these sisters who went through the Holocaust and the one sister said to thank God for everything, even the fleas. Turns out, the fleas were actually saving them from the wrath of the German soldiers and they were able to read their Bible without them knowing and keep hope and faith alive in the darkest of times.
So, we will thank God for the “fleas”. All glory to God. He knows the plan and we are helpless.

It’s just going to be a day to day battle.
Thank you for praying 🙏🏼 and spiritually fighting with us.
Lord have mercy, Christ have mercy, Lord have mercy.

I know I have not updated in a while. Our boy is fighting so hard. The bone marrow transplant has been brutal. He got diagnosed with a liver complication called VOD and we are now on week 6 in the hospital. He is finally starting to come out of it I think. St. Carlo, Ora Pro Nobis. Our Lady of Lourdes, Ora pro Nobis. Lord, heal my boy and let this be the end to 8 years of suffering. Please let this be his cure 🙏🏼 AMEN. Please share and pray for my sweet boy.