Emily's Journey through Stage IV High Risk Neuroblastoma. Please check back often as we will update as often as we can.

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Friday, September 16, 2011

Day +1 Stem Cell #2

Day +1  is over.  This treatment that Emily has to endure has been very long and we are only half way through it.  Seeing the pain that she has had to endure, is a pain that no child should never have to endure, ever. Emily was admitted last Wednesday, September 7th after having been away from the hospital for about 4 weeks from Stem Cell #1.  During that time off, we spent a lot of time together as a family enjoyed each other and even had a consultation for Proton Radiation.  Our doctors indicated that Hampton University does Proton Radiation ( they were new and did them for adults and would soon be adding children into the mix) so we went there for a consultation to get more information.  So we met with Dr. Allen Thornton and Doug and I left lost and confused because he said he saw something in one of the scans.   I won't go into that, but it wasn't nothing that we didn't know about it.  However we did learn that proton radiation was much better than conventional radiation...

How is proton radiation different from traditional photon radiation?

In traditional radiation therapy, X-ray beams are typically used to treat cancer. The X-ray beams go through the cancerous tissue (tumor) destroying both healthy and cancerous areas along the path of the beam. Proton beams enter the body and deposit most of their energy at the target – the site of the tumor. Radiation oncology physicians are able to focus the energy of the proton beam within a tumor, minimizing damage to nearby healthy tissues and vital organs.
Proton is definitly better because it doesn't hit other vital organs that could later cause different types of cancer. Proton's beam hits only the spot that it is directed at. and doesn't go through the other side of the body the way that conventional does.  For Doug and I this is very important because we want what is best for Emily because we want the least radiation and only where it needed at.  Specifically so in the 4 spots, the iliac and her femur.     After the consultation we spoke to our ONC and he made some calls to Boston and MD Anderson.  Proton Radiation is only available in 5 states, Hampton Univeristy which is in VA is not toddler ready and when they would be ready, we didn't want Emily to be the first toddler that they work on.  They need more experience and we felt that Boston and MD Anderson were definitly more experienced, however we felt comfortable with any of the 5 states and VCU was just trying to see where they could get us in.  So scans have been sent off to MD Anderson and Mass General and they will be reviewing them next week and we will go from there.  There is no doubt Proton is the way that we are going for Emily.
The day Emily received her stem cells, the Radiation Onc came from conventional radiation and spoke to us and we were able to ask questions. The woman ( I can't remember her name, but know she was a radiation onc) she felt that for Emily and where her spots where on her legs and how little her legs were, the proton wold be better for her.   So to get that nonest opinion from the conventional radiation onc it really helped.  
So far Emily is doing ok.  She has gotten sick a couple of times, however her tummy being upset and hurting has been what has been bothering her the most.  Two days her counts have been at .1 and so far we haven't seen any spots in her mouth, I am not sure if she has any mucositis in her espophagus, we are thinking with the upset stomach that she possibily does.   Today she did run a fever and they had to do cultures, so we will see if that was anything or just the nature of the beast of the low counts would be my guess.   Tonight she also had to get magnesium and phosophorus since they were both low. 
Emily is an amazing girl and she is so strong, I can't believe she takes all this and goes through this like she does, and still has a smile on her face. She may be in pain, but she still smiles.
I'm exhausted, so Im heading to bed.  Tomorrow is Day +2 and we are cointinuing to hope for an easy day.   Love and kiss your kids. I miss my girls Brianna and Jessie and missing my husband.  We are in the come and go mode now.  Hugs and kisses.  Night.

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