Our past few months has been nothing short of a sad TV Drama. I have not written on this blog in sometime. I use this blog almost as therapy. Its very difficult to speak of Ellie and all she has gone through in these past 5 years. But I have realized over the past month that I need to keep everything up to date on here because if not I have to relive it all over and over as each person asks. It is so much easier to put it in the world so that everyone can read it and be up to date. So that every time I see someone they don’t ask “how’s Ellie?” So before I get to the past month, let me backtrack for those who did not know. Ellie completed her 1585th Chemo dose on April 25th, 2016. At this point we went through the end of Chemo celebration for the second time in 5 years. We told Ellie along with ourselves that this was just a break. As much as I told myself that this was a break, there was a small piece of me that was thinking that maybe this would be it. Or at least I felt we had a long break maybe even a year.
So now onto my July of hell as I like to call it. Sounds like a good name for a TV Drama don’t you think? It actually began in June. So maybe “Cancer Sucks”. In June my very healthy and active grandma on my mom’s side of the family went for a Colonoscopy and they found a large mass. If you know my grandma, you would know she could out walk and work any young person. So with that being said, I felt like she was going to have surgery, they would remove it and we would be done. Maybe some recovery time. My father had colon cancer over 12 years ago so we have been through this before. Well not that easy in our family drama, after some other tests the doctors discovered it had spread to her lungs and liver. Grandma was given 6 to 7 weeks to live. When I got the news I was in denial. No way my Grandma was going to die in 6-7 weeks she was still so healthy and had at least 10 more years of life in her. My grandma, Ellie’s Great Grandma slowly got worse over the next 6 weeks. My Mom and Sister had to attend a work convention in Little Rock, AR. So I was in charge of caring for my grandma during this time. We were caring for my moms Dog and Sisters dog as they were gone out of town. After moving furniture at my grandmas so that the hospital bed could be moved in we returned home to find that my Moms and Step-dads dog had passed. We as a family where devastated.
Next day grandmas Hospital bed arrived. She refused to sleep in it though. She slept on the couch at night. (we believe that 6 months prior she watched my grandpa deuterate in a hospital bed and she was not going to let that happen). Every time I walked in to check on my grandma I would ask “How are you grandma?” Her response would be “I’m better than you!” Then she would offer to get up and get me something to eat. This my grandma who is in pain dying from cancer. I would always ask her if she was in pain and she would say “not really.” Well the day after my mom’s dog passed I walked in and asked my grandma how she was doing and her response was “I’m ok, can you move the morphine from the garage fridge closer to me in case I need it.” At this point my jaw dropped and I thought I was going to loose it. I was on the phone with my mom at the time and my mom’s response was “oh, that’s not good.” The doctors told my mom that once my grandma needs morphine it would only be a matter of hours. My mom rushed home immediately and was home the next morning thank goodness, I could breath a little with someone to share this stress and pain with. My mom did my grandma’s hair and my grandma looked like a whole new lady smiles and everything.
I wish I could say the same for me. I felt a huge burden was lifted off my shoulders. But you all know this would not be a good TV Drama without more drama to follow. On July 1st, 2016 I received a phone call from Ellie’s Neuro Oncologist informing me that the scan she had earlier in the week showed growth of her tumor. I was in shock; I know that it was a possibility of growth but really only 2 months. That is all we got out of two years of everyday chemotherapy. How is it fair. So I ask him the question “what now?” He told me that he would contact me on Tuesday July 5th once he had a meeting with the entire brain tumor board to discuss what the next steps would be. This was the longest weekend for both Dave and I. We did our best to enjoy the 4th of July festivities, this was harder than usual because I was keeping a secret. The weight of the world was on my shoulders and I was keeping it from my family and friends. We did not want to ruin anyone else’s weekend with this sad news. So Tuesday rolls around. I went o visit my Grandma and we spent some time together in the morning. Then I left for lunch and came back. When I arrived back grandma was in the hospital bed not speaking. I knew she could hear us though because while mom and I were talking every time you know grandma would have something to say you would hear a noise out of her. Mom had to leave to do some work so I sat with grandma by myself. As I sat with grandma I received a phone call from the Ellie’s Doctor. he was calling me on his way home to give me the options the brain tumor board discussed, and why they felt some are not options at all.
So at this point he told me to we would meet in the office on July 13th with the neuro surgeon to discuss all the options and decide a plan from there. That night I left my grandmas house and said good bye. I had a feeling that Grandma was going to leave us that night and she sadly did. My heart is still breaking to this day that she is gone. I’m in denial. I know how fortunately I was to have 4 grandparents alive untill this past year where I have lost three of them. Sadly, two of them quickly to cancer. We all were devastated.
A few days after this we sat Ellie down and informed her that her tumor had grown and she would have to go back on chemotherapy. Ellie did not have the reaction I expected she nonchalantly said “Oh man more doctor’s appointments” and continued to say “ok can I go play now.” I was shocked and pleasantly surprised. If Ellie the one that has to go through this all can be ok, then I should also. Ok we are moving forward.
The 13th finally came along and as we walked into the hospital Ellie had a melt down. Not the normal kid melt down. It was a pre teen melt down. She was yelling she didn’t want to be there. We spotted her nurse in the parking garage and she wanted nothing to do with her. She wouldn’t let the neuro surgeon do his exam. She was done, and how could I blame her. I was done too. I was especially done when I saw the MRI Scan and discovered that the tumor was almost as big as it was two years prior to chemotherapy. I felt defeated at that point.
At What point in life do you throw your hands up and say I give up! Never, when its your child. It’s easy to give up when its you suffering but your child needs you and some unexplainable power comes out of a parent that makes them continue on and help their child Fight on!
That being said after meeting with the doctors for hours, signing paper work and going through the options. Here is our plan.
We are sending a tissue from Ellie’s tumor to San Francisco where they will test it for a mutated gene. If Ellie’s tumor has this mutated gene, then she will qualify for this study as long as there is a place for her in the study at this time. There are only 2 slots left so we are praying that she qualifies and that there is a place for her. If Ellie’s tumor does not have the mutated gene, then we go to plan B. She will go back onto the chemotherapy study she was on until a new study comes up. Ellie will go back in also for another brain scan in a few weeks. They want to determine how aggressively fast the tumor is growing. So right now we wait in limbo.
I think limbo is the hardest place to be!
I open my heart on this blog and I only ask of one thing from all the supporters of Ellie. When you see our family around town or at family events. Please do not let this tumor define our family. It’s exhausting talking about this tumor. It has been 5 years and there is so much more to our family and to Ellie than a tumor. I know you all are loving and supporting us and that is fine to express that but please no questions. I promise when I have answers and am ready to share I will share it with everyone on this blog. Or I might choose to speak about it.
So here we are moving forward. This tumor has taken Ellie’s Childhood away and is working on taking her pre-teen years away. As her parents we do our best to ensure she lives a normal life just like all the other kids. Please help us with this!
So until Next Episode of “As the world turns in life with cancer”