"Tough Guy"

Yesterday was a long day (as all Atlanta clinic days are) but Connor did amazing for us once again! Even MORE amazing is that his mood has been dreadful from the early dose of steroids this week, given without his pre-meds to help even out the side-effects like rages, but he still managed to be cooperative at clinic for the Cytoxan.

His regular nurse Rebecca wasn't there-but he handled the new faces well...We needed a urine sample prior to chemo being given, and he had me and Sam cracking up in the bathroom. Eventually we succeeded in getting the little cup filled-our big boy sat on the potty and when I saw my chance, I took it and got what was needed. He looked at me like, "WHY are you doing this Mama?" :) For a little guy who JUST started sitting on the potty, we were so proud this didn't make him never want to go again, lol.

He detached himself from his nausea medicine-thank goodness it wasn't the needle in his port that got pulled out-just the connecting tube. Got that fixed up and we were on our way. He played, walked around, and ate lunch-all while the Cytoxan was being pumped into his little body. I hate that he is going thru this again, but I am happy to report his eyes are already much better-if not completely better! The steroids had already settled things down quite a bit, but they aren't holding him over long enough between doses...we still don't know how many, if any, more doses of this type of low-does chemo he may need...but we will be keeping a close eye on how his movements are doing.

His doctor does want to proceed with repeating the other chemotherapy treatment (Rituximab, the one that targets B-Cells) very soon. He said it needs to be at least a month apart from this chemo, so probably this summer sometime. So far now, we just watch and wait.

I woke up to Connor throwing up beside me at 6 am this morning, poor thing was doing so well until then. The nausea medicine does such a good job, but I sorta expected him to get sick at some point. The first two days are always the hardest on him.

Day by day his mood is improving, we hope to have a happy, healthy Connor back soon. This has been particularly hard on the other kids-seeing him doing poorly, and then watching him rage on the steroids, then the traveling and them staying off the night before so we could leave very early, and seeing Connor so sick. I am always amazed by their deep love for their baby brother-I honestly think any one of them would do anything to take away some of his suffering if they could.

Tonight I took Connor to my mothers house (Ryan and Stacy ended up staying over) and I noticed he was looking at her refrigerator and pointing and getting all excited. Then I saw what was making him so happy-a tiny magnet with the logo from his hospital in Atlanta on it! (a boy and girl holding hands in red and blue t-shirts and under it says "Childrens Healthcare of Atlanta")

It broke my heart-most kids get excited over seeing their favorite character or a McDonald's-but Connor is so used to going to the hospital, it made his day that he recognized HIS hospital...he has really grown up there and seeing him do that just made me sad for him that this is his "normal"

Please keep Connor in your prayers, especially for his upcoming CT scan on the 14th of April. Praying always for him to stay NED (no evidence of disease) and for the effects of the chemo to have the leat possible side effects, while doing what it is supposed to do-keep his immune system from attacking his innocent brain.

Love,
Debbie