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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Saturday, July 20, 2013

What A Week

Emily receiving Avastin on Thursday
Its been an extremely hot and muggy week here in VA.  But we are happy to be home.  There is no place like home.

On Thursday Emily continued onto Round 7 of the Avastin/Irinotecan/Temodor.  It was day 1 and she received the Avastin by IV. On day 4, which will be Sunday she will start the two oral Chemos at home. The last round they upped her dose on the one of the orals because of her weight increase. Counts were checked and platelets dropped from 34 over the weekend to 27. Dr Gowda likes Emily to have her platelets at 30 for this trial so she received 3 units of platelets.

While also at the clinic, I talked to Dr Gowda about a few things...just a few things that we have been worried about. MDS (pre-leukemia)... We have been worried about this mainly because there have been a few kids with NB who also were diagnosed with a secondary cancer. We know from the stats that it can happen, but they talk that it normally happens later in life.  There have been a few of these kids that it has happened maybe in only a few years from NB diagnosis. OMG.  So, i asked what he thought Emily's probability of being diagnosed with a secondary cancer were? He said the probability was high. I asked what out of the treatment she had made her probability higher? He said pretty much anything that she has had but that MIBG Radiation Therapy was one of the highest. Of course I remember when she had this treatment we remember them telling us that it could cause a secondary cancer.  I asked why? Dr Gowda said it is from the extremely high dose isotope that radiates though their bone marrow. Not really what I wanted to hear, but it's the reality, its just the reality of what our children may have to deal with. Just like he brought up fertility, that many of the drugs she has taken, she will not be able to have children, and that it can also mess up their premenstrual cycles and such. While many of these children not only have to deal with the cancer itself, the immediate side effects of the chemo, but also the long term effect of the chemo. Some of the long term side effects can happen later in life, all that we are aware of.  It's just the reality of it!

Emily's oral chemotherapys are delivered by mail order through CuraScript. Both of the oral Chemos were supposed to be here today, so I called to find out they had a back order on the temodor. I was very upset that we didn't receive a call to let us know, so they are working on transferring the script from CuraScript to a pharmacy here if they can get all of it that we need.  Just got word that it should be ready tomorrow, just waiting to hear the verification from the pharmacy.

This past week there have been several children that have passed from NB, it breaks our hearts. It not only breaks our hearts, but it really puts the fear in you, and makes you fear what each day could possibly bring.  This week literally has been one of those weeks, we just don't understand why there isn't a cure for these kids.  They deserve it.  They really do.  While we never say it, but we always fear that Emily will not make it to her next birthday. We question ourselves, will she be here next year, will she be here to celebrate? We know that things can change within a day or a month, or 6 months. But it's the reality. While we hope and dream for that miracle of all of her disease one day being gone, I think our fear will always be "worried", "anxiety" of why she has pain somewhere in her body, "fear" and being "scared"!

Please think about these kids, and hug your kids extra tight tonight and make sure you tell them how much you love them.
Talia Castellano: http://www.caringbridge.org/visit/taliacastellano

Make sure you hug and kiss your kids and tell them how much you love them. Will keep you updated on how Emily is doing with the chemo this week. 

1 comment:

  1. Covering Emily in prayer not only for the cancer to be gone but for no adverse side effects from the chemo.

    Praying and praying,