Friday, May 2, 2014

A day that changed our life

On Monday March 31st all our lives were turned upside down.  Our mother, wife, sister, friend, and nana was very sick and we didn't know what was wrong and the doctors didn't know what was wrong.  We waited and waited and waited for more and more tests with still no answers.  After nearly a month of not knowing what was wrong we finally learned last week that she has a primary brain tumor called anapalasticastrocytoma.  It was heartbreaking and came as a shock.  Life has been so different for everyone these last  4 1/2 weeks but especially for our mom and nana.  I have never seen anyone as brave as my mom has been this last month.  She has endured so much pain and discomfort and has always continued to be more worried about everyone else.  

Anapalasticastrocytoma is basically a cancer of the brain.  The doctors said it is a primary brain tumor which means it started in the brain and it will stay in the brain.  It can't spread to anywhere else in her body which is good, the bad thing is though it has already started spreading in her brain. The main part of the tumor was about the size of an olive but has spread to about a 2" diameter.  When she had her biopsy the surgeon said he removed most of the main part of the tumor.  They didn't want to remove too much because they felt like that wasn't the best way to treat it.  It could create more harm than good.   With cancer they rate them from stage 1-4, moms is in stage 3.  They did 3 different tests on her biopsy and none of them showed the abnormalities of a stage 4 cancer which was good.  They did say however that she has a very rare tumor and they are going to treat it like a stage 4.  They don't know a lot about it and they don't have a lot of data on how to treat it.  In most cases with tumors studies have shown that the best form of treatment is to start off by doing radiation and chemo right from the beginning.  So starting May 7 mom will begin doing radiation and chemo.  The radiation will be everyday for the next 6 weeks and we will take her to the Huntsman South Jordan Clinic for that.  Along with the radiation she will take a pill form of chemo.  She'll do both of these for the next 6 weeks and then will continue the chemo pill after her radiation treatment for at least a year.

As far as her prognosis goes they can't really give us one.  Her tumor is so rare and people respond so differently to treatment.  They did say however that there's a 1% chance of curing her of it.  There hope with the treatment is to kill as many cancer cells as possible and shrink it as much as possible.  Many people can live many years with brain tumors if they can keep it from growing.  So were hoping that the chemo and radiation will kill most of it and she'll be able to get back to a normal life and have many more years here with us!  They said the treatment isn't too bad and she will continue to have scans every few months to see how the tumor is reacting to the treatment.  The radiation will make her tired and she will lose her hair but it should grow back and with time she will hopefully feel more and more like herself.

Right now mom is at home and slowly getting stronger everyday.  One of the main side effects of this type of tumor is seizures.  She is still suffering from small seizures and the doctors are tweaking her meds to hopefully get that under control.

We want to thank you all for the many prayers, cards, flowers, phone calls, and visits.  Mom is amazed at the amount of love and support she is receiving through all of this.  It means so much to her and to all of us.  We are very blessed with wonderful friends and family!

This blog will help us to document all of moms journey as well as keep everyone up to date on how she is doing.  We ask for your continued prayers as mom begins her battle.  We're continuing to pray for a miracle that she will be cured of this and she will have many, many more years here with her family!

2 comments:

  1. Love u Susie and my dad Ur doing a great job and will be better soon xxxx think about u all the time Bev xxx

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  2. Love you Susie. I pray for you everyday my friend:) I miss you. I know if anyone can beat this, it is you! You are a fighter!! Feel better and stronger each day:)

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