This has been an incredible past week/weekend of all different emotions. I first off want to thank the hundreds of people that helped, supported, showed up and just really made the first Annual #elliestrong Fundraiser Incredible successful FUN night. We raised allot of money for the Sladek Family and other Families Battling Cancer. I had some serious MS issues the day of due to being over heated, over worked, and over stressed but I made it through with the help of several people. So, if you saw me Fall or if you saw me stumble, no I was not Drunk just my MS issues. People don’t typically see me this way as I do my best to hide my MS and when I’m having a bad day, I stay in. Unfortunately, I had no chose but to push through because this event was happening, and I could not stop or pause the momentum. I am very blessed to have a very understanding and supportive husband and family that helps me through my difficult MS days and times.
2 Days before the event I received a phone call from a father that is going through a very similar hell I went through when Ellie was diagnosed. As he told me the story of how his son was diagnosed with a brain tumor in November my heart dropped. So many similarities brought the feelings I had 9 years ago. It was a very difficult but yet rewarding conversation because I felt useful with the information and my experience and felt I could give him some advice that helped me through the 9 years. Sometimes people say silly things about God not giving me more than I can handle etc. Well god has for sure surpassed giving me too much to handle but I truly believe everything happens for a reason. Loosing Ellie after a long 8 years of battling, although it hurts like hell every day and I miss her, her experience with the brain tumor has opened doors of friendships, has given me the opportunity to help others and has just inspired, truly inspired. She was put on this Earth for her short 14 years to make a difference and make sure I continue to make a difference in her name.
So, after the event I am still recouping but it is 1010% worth it. It will take a few days to a week to get back to 100% but I am getting there every day and I hide it really well. Sometimes too well that people that are not extremely close to me just don’t understand. It really is hard to understand until you live in the shoes of someone with MS. My family understands more than most but. That being said, what was interesting when my mom had her Knee Replacement, she said she finally understood and how hard it is that her legs are just not working correctly.
Now that the event is over my focus has shifted my dad is getting married in 10 days and I need to get stuff taken care of for this. But my main focus is the Medical Bills from Miami. It has almost been a full year and I am still fighting. Yesterday I feel like I finally got through to someone that will at least put a little effort in after a year of trying. So, let me explain, my emotions go from Sadness to pure ANGER, to guilt. So, when we were airlifted to Miami, we along with the doctors really kept feeling Ellie was going to be able to get on a plane the first couple of days we felt she was going to bounce back. Then we were told she had to be put on a medical air transport that she would not be able to take a normal plane home. Well insurance didn’t cover that so we did not go ahead and do it not only that they would not approve it without payment etc. Well as the 24 days in the ICU went on Ellie got progressively worse and she required a very different medical air transport. Still Insurance wouldn’t cover it. I will never forget the moment that the Doctor head of the transport team came in to tell us he got travel insurance to approve it. Within 4 hours we were flying home. I wanted to just get home, I was mentally, and physically exhausted Ellie was in an induced coma. And I just wanted to get her started on Radiation as soon as possible. Once they started radiation in Miami, she would have to be transported daily to another facility to get radiation and we would not be able to leave Miami for 6 weeks. I just wanted to be home. Those 4 hours flew as the medical team put together her medications and went through every scenario that could happen in flight. They sent a Doctor on top of the medical air transport team with us to Chicago (This is not a normal procedure it was because Ellie was that critical). She had to fly at sea level she could not be tipped in any direction as they were boarding her onto the planes everything was a huge process because she was in such critical condition. I had to sign that if she died in transport, I wave all rights because I understood this is what was called a HERO flight. But at the same time, I was taking a one-time chance as if she had to start radiation in Miami, we would be taking a chance every day for 6 weeks. Well here is where I get extremely upset, Angry, and guilt comes in. Yesterday it all came pouring out on the phone and my passion and anger came a little out in my meeting last night. A couple of months later I received the $40,000 Air transport bill. Ok I get I wanted Ellie to come home no matter what but what makes me furious and what I am struggling with is that If I knew that I would have had to pay the $40,000 to get her home I would of done it day 2 and in my head guilt sets in because who knows if she could of survived. Granted the doctors are telling me nothing would have saved her, but I also go through that my family would have had a chance to say goodbye and see her. So, although I have several bills this one just needs to go away because it carries so much weight with it. So much pain, so much guilt, so much what if, and why the hell.
Writing this brings tears to my eyes just thinking about it because I am so Angry. After almost a year of getting the run around from the billing company I finally researched and called the transport team directly. The man, that answered the phone (after once again going through the story) said I can make no promises, but I will look into it and at least find out why insurance isn’t approving it. Well that’s one step closer but If I have to explain this whole scenario one more time to a new person I might just loose it.
For now, I just keep moving forward and hope this gets resolved so it can just be off my mind and I can put it in the past.
Just a little information people keep asking me:
The #elliestrong forever foundation is not setup to help us as a family financially, yes it helps emotionally as we are able to help other families battling cancer. We have a board of directors and committee and as a whole we decide where and how the money is going to be used to help other families. We created this foundation to help us heal as we help other families dealing with cancer and the struggles that come with it. I know Ellie is looking down and so proud as she was such a kindhearted giving person. I just wanted to clarify that the money raised for the foundation does not and will never go to assist our family we created it to give back and help other families.
** Also please support our Sponsors from the Elliestrong forever fundraiser I included the banner. I cannot wait to get the photos from the event so I can share the amazing fun night everyone had.
A mother with a battle ahead of her.