The 10 day wait…

Everyone keeps asking, so I thought I’d do a little update on Aleixa. She is at home and doing REALLY well, surprisingly! She underwent a major surgery and acts like she had a mole removed. Shes such a little fighter!!! She is full of smiles and her outlook on life makes me wish I could kiss this all away. How can someone so sweet deserve this life…

Alexia’s scar spans from the bottom of her butt cheek (where it meets her leg) all the way up her lower back. Its about 4 inches long, and since she is only 22 inches long it is pretty significant!!!! One quarter of her body was cut open to perform this surgery. That is absolutely mind blowing!!!

The biggest advice I can give to anyone is to trust your instincts. Oncology did not think there were any issues because her cancer markers were coming down, but this lump did not seem right to me. It just kept changing and getting bigger. They kept telling me her AFP is coming down and we didn’t need to worry or stress.  This goes to show that blood-work alone does not catch these kinds of things. Its funny…. I asked a few months after her first surgery if they do another MRI and check on anything. They said no, as blood-work would indicate if anything was wrong. I couldn’t understand why you would not take a look after a surgery to see what it looks like. Is this not logical?! Is this the same protocol for adults who have cancer?? Why would you not take a peek so you have a go-forward point…?? All I know is that I’m advocating for MRI check-ups going forward.

So now we wait… 10 business days to be exact. 5 down, 5 more to go…??!! Honestly how can something so important take so long to come back. You’d think it could be dissected and have results within a day or two. Its ABSOLUTELY grueling!!!!! This wait has been way harder then the surgery itself. You see, if Alexia’s pathology comes back with any malignant components again she will have to undergo Chemotherapy. Well… truthfully, she may have to do it anyways as this is time number two.

Alexia was essentially born with cancer, and even though she had extensive tissue and bone removed at 1 day old, there were either cells left in there, or her body is re-creating those cells again. Why?! We don’t know. The good news is that is it local – as in, its in/around the same place as it was before, but a re-occurance is never a good thing.

I can only hope and pray and feel positive, but I’m anxious and scared. Scared for what my little girl has coming her way. What a way to start your life… 2 surgeries in and she us only 6 months old. She has already spent half her life at the Children’s hospital going from appointment to appointment. Is this what the rest of her life looks like? It just doesn’t seem fair…

I don’t know whats worse? Subjecting her to a surgery every 6 months for god knows how long or administering chemo….??!!!!!

All I know is that I sit here anxious. Knots in my stomach, jumping every time my phone rings…