Wednesday, November 21, 2012

Shelley + Jason = Lots of Words!

This is Shelley's post:

So, as Jason posted last night Amie was not admitted for her third round of chemo yesterday.  Her ANC (absolute neutrophil count), part of her white blood count, the part that helps to fight infection, was too low for them to have her start chemo.  Her platelets were also low, so we stayed for a blood transfusion before we came back home (the low platelets alone and the need for the blood transfusion would not have caused them to delay chemo.)  

Amie was in good spirits and has been for the last few days, so the news that her counts were low really caught us off guard.  Someone asked me what this means in the big scheme of things and the way it has been explained to us is that the longer Amie’s body has to recover from the previous round of chemo the longer the cancerous cells also have to recover and grow.

There was other news yesterday that we got that makes the delay feel even harder.  About 2 weeks ago, we were carboned a letter from our insurance company saying that they were denying the pre-approval for the tandem stem cell rescue.  This is the treatment that Amie’s doctors have laid out for us from the beginning. This was recommended based on a study that had just closed at U of M, where that the last three rounds of chemo be mega doses and that for her body be able to survive them that she would be given her own stem cells back in a transplant/rescue.  


I was able to talk with Dr. Mahar yesterday for a while about the denial.  He said that he’d spoken with the insurance company for about 2 hours during 3 conversations and that although they were very knowledgeable about the study at U of M and others going on they did not consider it to have proven results since none of the studies have yet been published.  Dr. Mahar consulted with the team who is doing the current research and although their data has not been yet published and the statistics were still being worked out, the results are that the 3 rounds of treatment were “a shade of grey” different in recovery.  He said it was definitely less that 10% of an improvement and much more likely 2-3%.   The insurance company was willing to approved one round of the stem cell rescue, which has been a course of treatment that has been done for some time now.  (As a total side note I asked about the costs of the rescue procedure and he put it in the $50,000- $100,000 for each round.)

These two pieces are what made yesterday so hard for me.  Jason commented on this once before when talking about being discharged from the hospital.  We have so little control over anything in our lives right now (at least the big stuff) and when the things I think are going to happen don’t, it’s really hard to wrap my brain around accepting them and moving along.  

The new treatment plan at this point is that we will continue with 6 rounds of chemo, the first 5 being the same and then the final one being the massive dose of chemo and the stem cell rescue.  There will be one of the three chemo drugs that will change (to a less effective drug) at some point along the way when it causes a significant loss of hearing for Amie.  We are told that it is unlikely that she will lose hearing necessary for speech during round three, but that is a possibility.  They will continue to test her hearing after each round of chemo.  They have told us that it is “common” that children’s hearing is impacted enough to require hearing aids due to chemo and that if she requires radiation in the future that the impact would also be compounded by that.  


Jason's contributions start here:
There's more that we can share, but its not time for that.


My parents came out to see the kids today, and they played with them while we went out to eat.  

Do you know how hard it is to have a conversation about anything else other than cancer or the kids themselves?

Anyway, Anya went with them tonight and will spend Thanksgiving with my parents and my sister for Friday.  We'll grab her on Saturday morning, and Amelie will have our undivided attention for a few days.  Anya will get the fun and excitement of the Strzalkowski/Garza clan.

We're going to re-charge, re-fill and re-whatever and see how much we can fill our bucket over the break, and see what we can have put together by Monday when we go back in to hopefully start Round 3 on Monday.

Onwards and upwards, right?