I’m just sitting in bed cuddling with baby E. I should really go lay her down now now that she’s fully asleep and then write this entry. If I miss my chance she wakes up and thinks she just took a power nap.
Alright, she’s down.
First, I really appreciate the positive comments on my last entry. I truly hope we can see best case scenario for Bob (this is what he’s named the said tumor). Ideally, in a perfect world, it will shrink a ton with the easiest chemo, be removed and then not return. Statistically the survival rate is good and he should be okay.
Unfortunately, he falls into the more severe category that I try to never think about. Bob involves his abdominal muscle. A very large portion of it. This specific tumor loves muscle and connective tissue. It is too close to his vital organs. One of the main killers is when it cuts off blood supply and causes organ damage and failure. If it was in his back, leg, anywhere it would be better. Not here though. Here is bad.
He also has full blown FAP and not AFAP or Gardners Syndrome. Full blown FAP is worse. It often results in eventual cancer somewhere. A friend I made died of liver cancer. His uncle died of lung cancer. Stomach cancer is likely due to polyps. The only blessing about FAP was it isn’t associated with Desmoids like Gardner Syndrome or AFAP. Joke appears to be on us though… He got the Desmoid he wasn’t supposed to get.
Overall, I’m just going to stay positive. At least try to. Stay busy. Not think about it. Thinking about it is awful depressing. So, I’ll just focus on best case scenario and attempt to not worry about the disaster I predict is coming. Worst case scenario, intrusive thought me, she’s dying and breaking and ready to plan a funeral. So, we’ve got to ignore her and think about something different until we can’t.
The baby is doing great.
I can’t believe she’s 3 months old now. It flew by. Those first weeks were rough but we’re doing great now. Did you know even without giving birth you can get PPD? Yeah, me neither. But it has to do with the severe sleep deprivation. My therapist asked if I thought I could have this. What? Nah, my hormones are fine. Then she explained it. Yeah, okay, I was a walking zombie for a bit that never thought she’d sleep through the night again.
E’s been sleeping through the night for a few weeks now. Often 12 hours. It’s heavenly. She goes down between 7:30-9 and often sleeps until 8 or 9. It’s made a world of difference.
She’s an amazing baby. So happy. You make eye contact with her and she just lights up and smiles. She’s already laughing a ton and thinks life is so funny somedays. She’s got quite the personality going already. I want her to stay little but in the same breath I can’t wait to see the little human she turns into. She’s going to be fabulous.
It’s now taken me two days to write this entry. In the meantime I got into Zak’s portal today & there were updates…
The tumor is large. Already knew that. It’s on the abdominal wall in the “6 pack area”. The pictures of it are sad and make it look even bigger than I imagined. This kid isn’t going to weigh 100 pounds when that thing is removed at this rate. His liver showed some word I now can’t remember but mainly meaning blood flow isn’t right. Yeah, this likely means the tumor is affecting it. Thankfully livers can heal pretty well. This is the exact fear though. How it’s affecting the other organs.
We head back to Mayo the week of June 14th… He’s got 3 consults… Oncology, Hepatobiliary & Pancreas Surgery, Radiation Oncology. Plus, 2 MRIs that they now only want done there. Now it’s sounding like he’ll need radiation added in too.
I’m assuming we’ll have no updates until that week. So, now I’ll just be distracting myself and trying to stay busy. Some crazy dates it is.
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