The boys (18 mnts, 3, and 5) are scheduled for their cancer screening. Short version of why they're going ... their dad has genetic colon cancer. It increases their chances of getting cancer everywhere by 20% (on average). It's higher and lower in some areas. Colon cancer for example, is guaranteed if they have the mutation. They have a 50% of having the mutation. We'll be getting them tested for the mutation during that first appointment. Until they have the results though, they all have to be treated like they're carriers.
So first up on the list is .... http://en.wikipedia.org/wiki/Hepatoblastoma
It's a nasty little cancer that has about a 30% chance of being fatal. No matter what anyone says to me about it, I'm pissed off. If they're nice, i get angry. If they're supportive.. i get really angry. I am so angry in general that we have to fight to keep them here ... again. (See profile .. oldest was stillborn, 3 successful ic/cerclage pregnancies,etc.).
All of that is on top of SO getting treatment for the colon cancer himself along with all of these random cancers he's being tested for every few months from here on out.
It's overwhelming and it feels like life has been completely turned upside down. The sad part of all of this is that the feeling is familiar. In fact, I remember feeling this exact way every 1.5 to 2 years or so going back to 2007.
Seriously... what was the point of all of the bedrest and everything else to get them here full term so they wouldn't spend months in the NICU only to be diagnosed with this stuff and now they'll be lab rats forever. <Insert frustrated scream here.>
I'm so sorry. I was tested for the BRCA1 and BRCA2 mutations not long ago due to genetic breast cancer in my family. I remember feeling exactly the way you feel. I was about to start TTC. Then wondering, why would I even want to have babies that I could pass this to? I understand your frustrations.
Quoting Asher and Haddie's Mommy:" I'm so sorry. I was tested for the BRCA1 and BRCA2 mutations not long ago due to genetic breast cancer ... [snip!] ... to start TTC. Then wondering, why would I even want to have babies that I could pass this to? I understand your frustrations. "
This mutation (the apc mutation.. forget full name.. but the condition is called FAP) affects everything. I mean i have boys so i don't have to worry about their reproductive stuff so much, but if I had girls, they have an increased chance for everything (breast, ovarian, possibly uterine but I can't remember). It's actually a tumor disorder. the mutation caused their bodies to grow tumors in random places. It's primarily in the colon, but it's not limited to that. Some places it's not a big deal, some places it's a really big deal. My boys with the mutation will be having a colonoscopy at 11.
SO's brother has cancer. They aren't sure about his sister. Between the 3 of them there are 8 kids in the family. My 3, BIL has 2, and SIL has 3. We know the mutation came from one of SO's parents, but we don't know which one. It's practically a guarantee though that one of them will have stage 3 or 4 colon cancer once they go for testing. It's a huge mess. SO's dad is already pretty sick, but SO's mom has a bigger history of cancer on her side of the family. It's anybody's guess at this point which one of them was the carrier.
There are a whole list of issues that go along with treatment for DH and that by itself will make things difficult. But somehow thinking about the kids possibly having their colons removed at 20 is heartbreaking.
Quoting Summerfrost:" This mutation (the apc mutation.. forget full name.. but the condition is called FAP) affects everything. ... [snip!] ... will make things difficult. But somehow thinking about the kids possibly having their colons removed at 20 is heartbreaking. "
:( I'm so sorry you're going through all that. It's not fair and you have every right to be angry. Go punch something, get it out, be vocal about it (not in front of the kids, of course). Start a blog or something. I'm not going to tell you to stay positive, because that's not where you're at right now, and that's totally understandable. At some point, though, you will be. PM me if you ever need to talk, mama.