I’m sitting here on my couch (surprise, surprise) waiting for this storm that’s been threatening all day to finally come and get down to business. It seems like it has a plan and then changes its mind. It’s been screwing with me all day. Funny how the weather is totally in sync with my current situation. AAAAARRRRRRGGGGGH!
NEWS FLASH: We’ve been disinvited to Cincinnati. We didn’t fully break up, they just simply told us that it wasn’t going to work out at this time. So, it’s more like they deactivated their facebook account to take a break rather than coldly “unfriending” us. Here’s why: Ben doesn’t have enough stem-cells collected to serve as a “rescue” after he gets a high dose of radiation in Cincinnati. We knew this and I even stated this fact at our meeting with the doctors nearly two weeks ago. I didn’t think there were enough left over from the stem-cell harvest he had when Madeline was born. Most of them were used for his transplant and then another bag was used after a chemo in NYC three years ago. Those procedures used all but one tiny little bag of precious stem-cells.
So, the option was to harvest some more stem-cells and THEN get the MIBG therapy in Cincinnati. That would have pushed our trip to Cincinnati back to at least mid-July because harvesting stem-cells is a multi-step process. But wait. The plan changes yet again. After further consultation between Denver and Cincinnati, they’ve decided the following: surgery to install a mediport, complete a bone marrow biopsy to make sure there’s no disease in his bone marrow, AND take that stupid tumor out of Ben here in Denver. This will most likely happen tomorrow or Friday.
Then, (probably) chemo will start on Monday. Chemo. He’s going to lose his hair. Again. I don’t know why I take that so hard, but I always do. They’ll send that stupid tumor off to a lab where they’ll try to figure out the proteins, and if there’s a current chemotherapy out there that might be helpful. In the meantime, he’ll hopefully be able to go to Camp Wapiyapi. He might be a little sick, but hopefully not to the point of making camp completely miserable.
Seeing how they’ll be taking out the tumor in the next couple of days, this leaves the Cincinnati team with nothing to follow. They won’t be able to see if the MIBG therapy helped him or not, so Ben will no longer be eligible for that particular study. Here are my thoughts on that: Get the freaking cancer out of him RIGHT NOW! One of the things that was bothering me was the fact that the tumor was in there doing who knows what. If we get it out tomorrow or the next day, I will breathe a big sigh of relief. I am disappointed that this therapy isn’t going to work to his advantage now, and I’m terribly disappointed that his birthday party (that we were all looking forward to) is not going to happen. Maybe we can all make a trip to OH later in the summer? One can hope.
After the first round of chemo, he’ll have a break and then another round (for two total). Then they’ll harvest some stem-cells to use if MIBG therapy ever becomes an option again. I’d rather have backup than nothing at all. All of these procedures will happen in Denver.
So, the plan has changed. I’m sure if we wait a little while longer it’ll change again. Cancer plays like that. It’s a storm that just looms over you and always catches you off guard. You know the threat is there. Sometimes it lets you get out your umbrella. But usually it doesn’t.
Side note: I just found salsa in my hair.
All our love and good vibes, sweet family/ And yes- come this summer so we can celebrate Ben being well again. ❤
Do whatever is necessary for Ben. We will be here sending prayers and cheering him on! Let us know anything you guys need. ((Hugs))
I hope that all your storms pass and are followed by a sunny day.
How could you tell the salsa from the beautiful hair that sits on top of your head? 🙂 Sorry that the plans have changed, but I agree with you. Get that cancer out!! love and prayers.
Salsa in the hair will spice up the red of your hair giving it a “flaming glow” just from the heat of the peppers!!
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