Feeling blue

The last few days have been a major swirl of emotions. In some ways Jenson seems better and in other ways worse. I've been taking it hard the past few days as we're nearing a couple of defining biopsy dates which will determine whether we need to continue chemo or not. The first is a biopsy of his scalp this Friday and a scope/biopsy of his GI tract October 11. I'm really trying to find peace, joy, and hope right now but it's not easy.

Jenson seems better in some ways. He's not vomitting and many of his rashes have gone away. He's walking, talking, and so cute and fun!

But the reality of his disease and medical issues are still present and heavy. Right now Jenson has really flakey chunks on his head which he's pretty much had since he got the diagnosis... it sort of looks like the worst case of cradle cap you've ever seen and it may be just that. But over the past month a new development has emerged with these scabs that started showing up on both sides of his head and then moved to the top of his head. They are also accompanied by petechiae dots. The pediatric dermatologist decided a few weeks ago she wants to biopsy his head to find out if it's LCH (his disease) or if it's some other rare skin disorder.

Originally we were going to do the head biopsy with the next scope/biopsy of his GI tract (since he'll be under anethesia), but the pediatric dermatologist had a good thought that if they do it before in her office and it is LCH then we may not need to do the scope/biopsy of his GI tract and take the risk of putting him under since he would definitely need to continue with chemo.

That biopsy is this Friday, and we'll get the results back hopefully within a week.

Jenson's last scheduled chemo appointment (pending the biopsy results) was this afternoon. It's definitely a less than ideal time as it's in the middle of when he normally naps, but we scheduled it so we could see our regular doctor. Let's just say it wasn't the smoothest of appointments. Our oncologist made me mad too with a comment "my girl had really bad cradle cap too... should I have biopsied her head?". I said "No. But she doesn't have LCH does she???". Like taking a biopsy of his head is my idea or something because I'm a paranoid parent. Rude. Yes, I'm angry right now in case you can't tell.

Jenson is also low on hemoglobin (red blood cell) counts. It could be due to low iron or it could just be the chemo.

I'm sad. I just want my little boy to be better. I want to be optimistic about the upcoming biopsies, but my heart tells me they are not going to be the results I'm hoping for or we wouldn't have all these random other things popping up. I sincerely hope I'm wrong.

I'm also learning the time right before biopsies and after are very emotional because you're hoping for the best (that you can stop chemo) but also needing to prepare yourself for the worse as when the results aren't positive it is completely devasting.

We could use prayers for strength right now, as it's also weighing heavy on Doug. Thanks.

Kristin