Sunday, February 5, 2012

Baby Vamp

Miss Mallory is getting her 4th Blood Transfusion.

Her hemoglobin was 8.2 three days ago and has remained there since then. I had to fight them to get a CBC done again. Since we are dealing with surgery and not the oncology team they wanted to run a " reticulocyte" count to see if her bone marrow was regenerating her blood cells fast enough. And it's not. If I would have dealt with the oncology doctor we could have discussed her blood counts and had this taken care of. Now we get to sit here till 7 while she gets a transfusion.

I wanted her to get one, being anemic and a baby = double trouble. She gets cranky, lethargic, and pale. This equals miserable for EVERYONE in our house. So I am glad she's getting it, I'm just not happy with how many hoops I had to jump to get it done. I realize we are not the only ones on this floor but we had to get permission from surgery, then they contacted oncology, then they got back to surgery, finally got the order in, ran the CBC, then the reticulocyte count, and then ordered blood. 5 hours later. We could have skipped a GIANT step had we not been admitted under surgery.

We will NEVER be admitted under surgery again, even if I have to be here several hours before we get admitted. We could have addressed this issue yesterday and been home earlier today.

I am hoping that we get some results early next week, I am very very fearful for Miss Mallory because she didn't respond to this treatment. We haven't been able to talk to a doctor so we don't know if this pushes her to a stage 4 or stage 4S neuroblastoma. We are fearful that the NMYC is going to come back amplified which takes her from a 90% survival rate to under 60% and she would have a much higher chance of relapse if this is the case. High amplified stage 4 Neuroblastoma has very low survival rates, high chances of relapse and are very very hard to treat. We can only pray that they were correct that she has the Non Amplified Neuroblastoma. We are also fearful of the ALK gene they are testing for, if this is the case it is a genetic marker that one of us carries. If it is the ALK type of Neuroblastoma they have a specific treatment for it, but Jillian and any other kids we might have, have an increased risk of having Neuroblastoma.

Talk about a huge heavy weight on our shoulders right now. My mind is weighing every possible outcome right now and no matter what it's going to be a tough road. I keep kissing her little bald round noggin and all I can think about is not feeling the warmth of cuddling up to her, not seeing her smile, not hearing her laugh. I know I should try to steer my head far away from these thoughts, that I shouldn't think this way, I haven't given up, I won't give up but they are still there. My heart still aches.

I am going to try to stay as positive as possible, allowing myself to have bad days and good days. This is just tough, it's unfair, its brutal, its ugly, Cancer is UGLY. Mallory's 1st year is going to consist of being in and out of the hospital. Instead of looking forward to her rolling over all the time, we get to worry about her tangling up all the cords around her, instead of looking forward to her crawling we have to worry about her pulling her broviac out of her chest, instead of looking forward to her walking we get to be worried about chasing her around with an IV pole. It's crap.

We're getting married in July, instead of looking forward to our wedding I am hoping Mallory will be done with Chemo by then, all I care about is her being better, her scans coming back clean, her being back to normal. I could care less about our wedding, we arn't going to have the time, the money, or the energy to plan anything. We most likely will not be going on a Honeymoon because we're going to be in Cancer mode still and I can't spend a week away from Mallory while she goes through this. I have to be in control of the things I can be. I don't want to designate tasks and stress over someone getting stuff done for me. I just can't deal with any of it, I can't think about it. I am very fortunate we booked the hall and church before Mallory got sick or else that would have never gotten done. I picked out my dress 2 days before Mallory was diagnosed, and Ry's Mom found the perfect dresses for Jillian and Mallory. So I have a few things done and that will just have to do. All I want that day is to walk down the aisle, marry my Best Friend, and have both of my daughters there to share in the celebration with us.

I honestly want to cancel the wedding, go to justice of the peace, get it done so I don't have ANY more stress right now. But we've already put deposits down that cannot be refunded. So it is what it is.

I am holding out SUCH hope for a Miracle, for a chemotherapy regimen that works for our princess pie. Thank you Cancer for the pile of shit you have thrown at us, it's making life unbearable some days. I'm sure this week is going to be FULL of those days too. Waiting is the worst part. Knowing that the cancer could be spreading as I write this post is nauseating.