This was the last day of busulfan and fludarabine
102 fever, controlled with tylenol, still waiting on what the blood cultures show (most likely just getting a fever from the chemo)
Mouth sores everywhere 😦
No food for 3 days, Started TPN
REST DAY. Thank. Goodness. Kevin had his energy back!! Daddy is here ❤ We upped his pain medicine drip.
Day one of Cytoxen.
Today was by far the worst day. 102 fever. Lots of screaming, lots of scary moments. Kevin was so out of body/out of character today, it was scary! Watching him scream and wiggle around, not being able to help him, hurt my heart. He stayed up until 4 am just screaming bloody murder. We went up on the pain meds…again. but nothing seems to be helping him. The way he is acting is just so weird, it’s hard to explain. The doctors did mention that the second time around is always harder.
Cytoxen day two.
A lot of non stop screaming in pain again. He did get a little relief from a drug called Ativan. Basically he’s getting so worked up that he’s hurting himself. Since he’s already non-verbal as it is, we really can’t tell for sure what’s hurting. He rubs his head and eyes a lot, so we assume he’s dizzy and has a headache. He is for sure trying to poop, and I think most of his pain is coming from that. The thing about his mouth sores (called Mucositis) is that it can affect the entire GI tract. So we can only assume that he had these ulcers/sores all over his intestines….so just as painful as it is for him to drink or eat, it’s the same when it comes out. And there really isnt anything to be done about that, except manage his pain the best we can. Whenever he’s awake, he’s screaming. We feel absolutely defeated today.
Cytoxen day 3! Happy 4th of July! Today we have finally gotten a break from Kevin being in pain and screaming. They started a new pain medicine and continued with that Ativan for anxiety, so today he is completely comfortable and happy for the most part. He will get a blood transfusion today (no suprise there). Hopefully we will get a chance to see fire works from the window
Rest day! Kevins pain was so well managed today, he seems to have some energy back, thank goodness!
Transplant day!!! This day seriously could not have happened soon enough. It’s so overwhelming to really think about it. Watching those bone marrow cells go into his little line made me think of how BIG it really is. Those cells are literally a new LIFE for my son. It gives us hope on what the future could hold. Dont get me wrong.. we still have a long road ahead of us (i.e. it gets worse, way worse, before it gets better), but today, today, we rejoice!
Pretty easy day! Nothing crazy aside from these pesty mouth sores and runny poops. I ended up coming down with a cold/flu (some sort of sickness), so I’m not up at the hospital.
These. Freaking. Mouth. Sores. I feel so bad for Kevin! During his mouth care yesterday and today, he had a mouth sore break open and had pretty uncontrollable bleeding 😦 Its normal, but the doctors said he might need some platelets soon here. I think he also had some blood cultures done because he was running a fever and had very high blood pressure.