Sorry for not writing sooner. I was struggling because I wanted to bring everyone good news. Last month I had an MRI for my MS and the doctor informed me that my MS has progressed and I am showing more lesions on my brain. At that point I was feeling down and defeated but then we got the best move. Ellie had a MRI Scan last week Wednesday and the way the doctor described what he saw was “it looks the same if not a little bit smaller.” He was happy and so are we. Finally we are moving in the right direction. I will take the lesions as long as Ellie is moving in the right direction.
We also were able to attend Family Brain Tumor Camp this past weekend. Unfortunately children’s brain tumor foundation pulled the funding for this weekend. They were unsure weather they were going to be able to have it this year. COSI – One-step camp funded it this year. This weekend is so important for us along with all the other families. When Ellie found out we were accepted, she was singing, jumping up and down and so excited and if you know Ellie she doesn’t show excited emotions about anything. The weekend was extremely therapeutic for us as a family. Us as parents get to do a round table discussion with Educators on IEP’s, Social Workers, Nurses, and a Brain tumor survival panel of young adults. All of these are so important for us as parents. Lots information that is so important to all of us children with Brain tumors. As we spoke with the survival board it was evident that our children have a lifetime of struggles ahead of them. What we found interesting is that the side effects that start 5 to 10 years after finishing treatment. As much as it was difficult to hear how Ellie’s life is going to be different it also gave us great hope that she can survive this. After a great weekend of meeting up with old friends from last year and meeting new friends this year, they concluded with closing ceremonies. The weekend comes to a conclusion with everyone making a circle, holding hands and singing along with the song “It’s a great day to be alive” Every time we got to the chorus we got louder and louder. And then the song “That’s what friends are for” After this many hugs and tears as we all have to say goodbye in hopes that next year we are able to attend again because these are memories that will never be forgotten.
If you are looking for a new foundation to support and donate too. Let me just say COSI gives kids hope and friendships. They offer camp to children going through cancer. A few weeks back at the Relay for Life the girl who spoke also spoke about this camp and how it changed her life. I am hopeful that COSI will hopefully receive funding for next years Brain Tumor Family Camp. I am asking that if you choose to donate to COSI please make sure to make a note for Family Brain Tumor Camp. If everyone gave $10.00 the camp would be funded and give families like ours going through such devastation this important weekend. I attached pictures from the camp this year along with a link below were you would be able to donate to One Step Camp (please make sure you note the money is for Family Brain Tumor Camp)
So in conclusion we have had several bumps in our road but we feel as if we are finally on the right path. Although our bumps are just starting at least we are not at a dead end. Thanks for everyone’s prayers and support.
A mother with a battle ahead of her.