Lots of changes and not the best news..

So I wrote this part of the blog Entry on March 20th the Day after we found out.

About 11am on March 19th I got a phone call I thought I would never get.  Dr. Goldman Ellie’s lead Nuerologist Oncologist left me a message saying “This is Dr. Goldman, give me a call when you get a chance.  I want to discuss Ellie’s MRI with you.”   You want to talk about your heart dropping down into your stomach.  I was so grateful to have my friend in the car with me at this moment.  So I quickly call him back.  In 3 years I have never gotten a phone call personally from Dr. Goldman.  Most of the time it is Sandy his nurse practitioner.  So I knew it could not be good.  So Dr. Goldman picks up and tells me “I have to call you back in 5 minutes.  Not Stew 5 minutes (which means 20 min) but 5 minutes.”  It ended up being about 10 minutes before he was able to call me back.  It was an incredibly long 10 minutes.  My friend Wendy and I were in the process of driving to Sam’s Club to purchase all the food for the school fun fair.  So by the time he called me back we were already inside picking up food.  I guess every time I am Sams club and I pass the Soda aisle I will have the heart dropping stomach-hurting moment come into my head when Dr. Goldman told me that Ellie’s tumor had grown and the Chemotherapy had not worked. 

Now what I need all of you to understand is I have stayed off of this blog because we have been enjoying Ellie and all her accomplishments.  She is one of the most amazing kids.  We signed her up for Lemont Hornet Cheerleading and she was amazing.  When we signed her up I did not expect her to compete.  But she did and they won 1st place at every competition.  I was exciting and amazing to watch her and all she had accomplished.  Ellie has been competing in taekwondo tournaments and doing better every time.  She started 4th Grade in August.  Yes 4th grade so hard to believe she began this journey in 1st grade.  How much she has grown into a young lady.  Even the other day I was talking to my family telling them about something Ellie was going to do and Ellie spoke up and said “ Um did you consult me on this?”  Cracks me up how much of a voice she has gotten since Chemotherapy has stopped.  Even last week we got her report card back for this semester and she earned Strait A’s.  She is only behind her class in Reading and Math and this is missing tons of time in the past of school.  Every day this child amazes me with all she has accomplished after having 3 brain surgeries, 3 years of chemotherapy, and tons of obsticals. 

This news from doctor Goldman came as such a very hard blow.  How am I suppose to tell her its time to going back to being sick and sitting in hospitals for endless hours.  As Doctor Goldman was explaining all the information the only thing I heard was Charlie browns mom “whe wha whe” for a minute.  Then it was time to figure out what the next steps were.  Doctor Goldman then went on to explain our options.  Option 1:  Send out a sample of the resected brain tumor from the past surgeries and see if Ellie has a mutated gene, which would qualify her a trial Chemotherapy, which is her best chance.  But is in Phase 2 of a trial but has shown some good results so far.  I believe it would be swallowing pills every day, twice a day and going to the hospital once a week. Option 2:  Every other week going down to children’s for full day infusions of a chemotherapy.  And if neither one of those work our final option is Radiation.  This is a last resort because Radiation can cause severe brain damage and many issues with Ellie’s learning etc.

So we are started with Option one.  Now many of you might ask why am I putting this out here three weeks after finding out about the growth in Ellie’s tumor.  First we have a few weeks before we even find out if Ellie qualifies for the Chemotherapy Trial going on.  Also if you know Ellie you would know she dwells and gets her self-worked up on things such as shots, hospitals, and doctors way before we even are doing any of this.  But the main reason is my parents decided months ago to give Ellie her true Make-A-Wish.  When Ellie was 6 she wanted to go on a cruise with her cousins and this was her wish.  Sadly at the time her cousins could not go on the cruise because my sisters baby was too young.  Make a wish did take Ellie and our family on a Dream works cruises.  And I have to say it was amazing.  But Ellie was sick from Chemotherapy and she was sad her cousins could not come.  So when Ellie was released from doing Chemo my parents thought this would be a perfect time to take her on the same cruise with her cousins.  So we are leaving for spring break in two weeks and Ellie is getting her wish.  We just want her to enjoy the cruise and have an amazing time of her life with no worries.  So Dave and I decided that we would keep it to ourselves.  Not even family knows, we do not want anyone saying something to Ellie.  This was her time to enjoy life and not dwell on what is to come.  She deserves this awesome vacation with no worries, energy and tons of fun. 

So here we are about to embark on another Journey.  A Journey that I am sure will have its ups and downs.  By the time I post this I am hoping to have the results from Dr. Goldman weather Ellie does qualify for the study.  Once again I am sorry I have not shared my journey over the past months but we were enjoying life and pretending there was no such thing as a tumor.  I guess its back to reality.  This is my baby’s life.

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