So yesterday was a difficult day. We spent the day from 8:30am – 4:45pm doing tests and reviewing the 40 pages of information on the study with the doctor. As we went over these forty something pages my brain could not help but wonder and think about what the hell am I signing. There are two pages of possible side effects, some as little as Tired and Dirrhea but some as serious as Blood Clots, Heart Attack and permanent liver Damage. Any normal parent in their right mind would say hell NO she’s not going on these drugs. Unfortunately, we are not normal parents and these are not normal circumstances. We had another MRI Tuesday and once again the tumor had grown. So we are moving forward. As the doctor put it “I expect Ellie to live a very long time and I am going to do everything in my power to ensure this happens.” I have 100 percent faith in Ellie’s medical team. We have seen them from once a week to once a month over the past 5 years so they are like family. I have been told from 2nd, 3rd , and 4th Dr. Opinions all around the country that we are in the best hands we possibly could be in for the type of brain tumor Ellie has. Please keep this in mind when you think of speaking to me about treatment and where Ellie should be treated. I have Ellie’s best interest in heart and I more than anyone in this world want her to survive this.
So with this study we will be going downtown at least 2 times a month possibly more. There are side effects of low red and white blood cells which will put her at risk of being in the hospital more often then not. She will have to do monthly tests to ensure she is safe and her liver is good. This drug has been used for some time in adults this is a phase 2 study so no drug is perfectly safe but its safe enough that its worth the risk. On this study she will be taking Chemo at home once a day for two years. So yep tack another two years of Ellie’s life of taking chemotherapy. By the time she is done with this study she will be entering her Freshman year in High School. Its Crazy to think she started in 1st Grade her first full year of school and will with no doubt be doing chemo through to at least Freshman year. So yep her chidhood has officially been stolen from her. But in the same breath I’m grateful she is still here. I used to be allot more positive about our situation but after so many years its just draining. I don’t and can’t understand why. I did hold back tears yesterday as we went through the paperwork wondering if Ellie will ever get a break. I have gotten tons of texts and emails last night and this morning asking what the scoop is. I do know there are tons of people praying for her and God’s got to eventually answer one of those people’s prayers. I like to think he is just over worked and over whelmed and just hasn’t gotten to it yet. The prayers are on the bottom of a stack of papers on his desk. I think the most difficult part of all this is Ellie just wants to be a normal kid. If you know anything about Ellie she is very introverted and quiet like her dad, unlike me I’m very loud and outgoing (some people might call that obnoxious). That being said I have had tons of offers of what people can do for us. I really don’t know. Yes, this is a financial struggle and more than anything I would love to say let’s have a huge fundraiser to help us but at the same time I can’t do that to Ellie. I cannot draw more attention to her. She is finally feeling a little more comfortable in her skin and I feel like this might set her back. So we are in between a rock and a hard place. I am very grateful to the principle of Ellie’s School that offered to raise funds through a walk but unfortunately once again that would bring to much attention to Ellie. That was a very nice gesture but she just wants to be a normal kid and more than anything in this world we want to give her that. We also do not want to be a charity case either, we know there are plenty of people out there that have it so much harder then us and they struggle so much more. If that means Dave and I need to struggle, then we struggle and its worth every penny.
I will keep everyone up to date as things move along with this Chemotherapy. Sometimes no news is good news. She starts Wednesday as long as she passed all the tests from this week.
Thank you again for your love and support through this journey!