Monday, April 9, 2012


Is the amount of money that sending out Mallory's tumor sample that would determine if she had the ALK mutation or not. We have THREE insurances and NONE of them will cover it. We have to sit down with the social worker and decide what to do. Although it doesn't change her course of treatment (it was SUPPOSED to be sent in February after her 2nd biopsy and NOW we are getting the insurance problems). This means a TON when it comes to Jillian, If Mally heaven forbid relapses, and any future children we might have being at risk of developing Neuroblastoma. And now we have to chose whether its worth the 3,000$. We are hoping we will be able to talk to Dr. Giselle Sholler (She is AMAZING) about this more specifically to understand and comprehend our descion and have our choice backed by one of the TOP leading Neuroblastoma and Medulablastoma Doctors.

Mally and I sat in clinic all day, waiting for CBC (which was GREAT minus hemoglobin which was 7.5). Then we waited some more for the blood to come up so she could get another transfusion. Which took 3 hours because she was receiving a LOT of blood today.

It's funny how I can tell how big she's getting by the fact that her blood no longer comes in a syringe, and she upgraded to the bio-patch. She's 16.5 lbs already! GO MALLY GO! We can thank Megace for helping her eat, she would be a SUPER twig without it. Seriously I can't get the girl to stop eating, maybe once she's done with chemo she'll actually sleep through the night (I can ONLY hope.)

The girls & I are currently staying with my parents. Ryan and I have been through a lot through these last 4.5 months and as time goes on the stress has not decreased. We are nearing the end of Mallory's chemo, but we still have years of scans, tests, and blood work left for Mallory. I have realized something that I have been dealing with that has NEVER been an issue is I have super bad anxiety when it comes to dealing with Mallory's cancer. I honestly have been exhausted taking care for her day in and day out, the difference between Ryan and I is I express my distress and he does not. Our coping mechanisms are entirely different, we both love our daughters, we love each other, and this has been just as hard on both of us. Postponing our wedding, the thought of Mallory not making it, and the devastation of what could happen finally EXPLODED. He wishes he could be in my shoes taking care of the girls, and I wish I could be in his shoes and getting a break from this. We love each other, we always have and we always will, almost 7 years together is an AMAZING feet, something that we will see soon. July 8th, 2012 we will be celebrating a kickass, fun, loving, and tough anniversary. We will have many years of dealing with Post Traumatic Stress Disorder because of Mallory's cancer, something that I will be contacting a therapist tomorrow to get the ball rolling on so that I can get on a better path to understanding, to helping myself cope better, and to allow our family to only be engulfed with all the love in the world.

For now I am staying here, we are taking a break. But Wednesday night, I am dressing all fancy shamancy and will be waiting for my handsome chariot to arrive. I think some good old fashioned dating will help us and therefor we are doing it. Then chemo weekend our Mom's are going to help with the girls on friday night so that we can spend an entire day and night together working through everything. It's a healing week. Both nights are much needed to get back on our feet. This is OUR life, this is OUR struggle, and we will prevail! WE WILL PREVAIL!

I adore Ryan, Jillian, and Mallory.
Ryan is my BEST FRIEND, big LUG, and FEF and I wouldn't be 1/2 the person I am if it wasn't for him. He makes me a better person and I can't thank him enough for that.

Jillian is my little light, she is the "oof" in goofball, she makes me laugh, she just adores her momma. And I adore her. She can cheer anyone up, on any day of the week, she will sing to you, dance in the silliest ways. She's our little whimsical child and we adore it.

Mallory is my little inspiration, she is a stubborn stubborn baby but that's why she's kicking ass and taking neuroblastoma down. So we can have many years with her stubborn little attitude and that sweet smirk that could just about convince me to buy EVERY single thing she would ever want (Ryan will have to lay the lay down with this one for sure)