Wednesday, April 25, 2012

We are HOME!

Mally is finally unhooked from the IV pole, we drove home and she is playing contently in her exersaucer right now.

Today was a good day, Mally is feeling better. Although now I have Jillian that is sick, most likely she has RSV as well after talking to the doctors. So we are on house arrest and we have to closely watch both girls to make sure neither start having trouble breathing.

I met an AMAZINGLY beautiful woman today. Her name is Jillian and her husband works with Ryan here and there. She is a Stage 4 Neuroblastoma survivor, it was so empowering to hear her story and meet her Mom. I still have a zillion more questions for these wonderful women but to just meet them gives us hope that Mallory will make it through this.

It's hard to relate to our family if you have not been here yourself, remission is the term used to say the cancer is being "quiet", it could or could not come back. So remission is a GREAT word, it is not a word that brings peace, it does not bring reassurance, and we will worry for the rest of our lives about our dear daughter.

There are risks involved with intense chemotherapy, long lasting side effects. These we will have to worry about for the rest of her life. Something that we will be getting more information on in the next coming weeks.

A few of the things we've gone over is that Mallory will remain on Bactrium for 6 months after treatment to prevent Pneumocystis Pneumonia which she's been on since the start of treatment.

The will continuously monitor her Catecholamines and Leukocyte  numbers while in remission. They keep a close eye on the Catecholamines to make sure the cancer is not relapsing, once this number starts increasing it can show that the adrenals are excreting the hormone found in Neuroblastoma. We have to be very cautious about what we feed her 3 days before this test because certain foods can change these numbers and we don't want a bump where there shouldn't be. They will also do bloodwork to check to make sure her ANC and Leukocyte numbers. There is a chance from all of the chemotherapy she has received that she can develop a secondary cancer (AML Leukemia) which they will watch for very closely.

She will also have scans every 2-3 months to make sure her tumor is not growing since they are unable to re sect it. And make sure that it stays in remission.

We will have more information in the coming weeks, please keep us in your thoughts and prayers because even though she will hopefully be in remission it is still a long long road ahead of us.

We were supposed to start couples counseling this week Friday but I was just not feeling comfortable enough with who they set me up with. So next weeks challenge is to find someone that I am. For now Ryan and I are doing well, working on things slowly, and hopefully after the bulk of the stress is off of us we can continue and work towards a healthier relationship for not only us but for the girls as well.

RSV & Floor #6

We found out yesterday that poor Miss Mallory has RSV to top off crappy blood counts.

She isn't wheezing anymore thankfully, and they moved us to floor #6 because of all the kids on #9 (HMOC floor) have compromised immune systems and they didn't want her to give it to any of them.

So here we are waiting, waiting, waiting and more waiting. I had to cancel all my appointments for the week, because who knows how long we'll be here. The crazy life of an oncology Mom. I have only found 1 positive to being in the hospital and that's naps, LOTS and LOTS of naps. Something that is rare in our house since miss Jillian is stubborn.