t+12

Lucas has had a hard week. He’s been battling high fevers and mucositis which causes tremendous pain. He’s on morphine every four hours which is providing some relief and IV tylenol every 4 hours to keep his fever from spiking into the 104 range, which has happened multiple times. When he was little he had febrile seizures, so even though he his 7 that memory has not faded from us and he is constantly wrapped in washcloths throughout the night.

He had had three NG tubes inserted this past week from his nose to his stomach for nutrition and meds, but unfortunately they haven’t stayed down continuously. Being the fighter he is he’s working thru the pain to try and swallow formula to avoid another tube. He has also been taking some oral meds despite the pain, they are crushing the meds and putting in applesauce. This was his decision and he’s warring on.

We are looking for Lucas Absolute Neutrophil Count (ANC) to get to 500 for several days in a row. Which should mean that his body is rebuilding the bone marrow from Dylan’s cells. Yesterday it went up some, and was accompanied by a strong rash all over his body and high temps (104) the past several days.

Dylan went home yesterday, back to Austin with Brian’s sister, Anne. Anne is amazing and has been such a support, thank you for being there for us Anne. Dylan had a job to do, we couldn’t be prouder of her, and Jack could not have been more happy to have his little sister home.

We put day 14 on the whiteboard for him as a goal to get him to this first hurdle. Lucas being so goal oriented went up to the board after a night of fever and wrote day ‘9’. He helped change his sheets with the nurse at 2:30am the other night. The nurse commented that she’s never had a patient helped change their own sheets especially with a boiling fever. Bless his heart.

We pray so strongly for Lucas he needs our prayers to power thru right now.

Prayers:
Please God we pray that his mucositis infection and pain go away so he can eat and drink.

May his fevers go down and no new infections appear.

We pray that Dylan’s cells engraft successfully with full acceptance and his counts start coming up to make him feel better.

Please Lord we pray for Lucas’s healing and him being cured of all disease.