It's been 4 months since Alex left his sick, little body. Every day that passes I am one day closer to being with Alex again. Time is slowly ticking away.....
After Alex was diagnosed I knew there was no way I would survive this. He would be ok, doctors make mistakes all the time. This is NOT something that would happen to my family. It's so sad when it happens to others. They are strong enough to handle it, won't happen to me because I'm not. That was the mind-frame I had from the moment Katelin, my first baby was born. It is an instant love with my children. From the moment I found out I was pregnant, I was in love.
On April 5th we were told the cancer was growing even while on their best chemo for it. It hit me really hard. I knew the prognosis but until that moment I fully expected that there was some kind of mistake of diagnosis or we would get a miracle and Alex would be saved. I remember saying to the Doctor, so... he really is going to die? You can't save him? I'm sure he thought where the heck have you been during the last several months. I was so ANGRY and broken-hearted. I wanted to push all the computers in the office onto the floor and make everyone stop talking about it. Why couldn't they just save him! Why has the treatment for DIPG not changed for over 30 years! Why do kids with cancer get next to nothing for funding research? This shouldn't be happening he just barely turned 7. He hasn't done anything! I just couldn't believe this was happening to us. No one thinks it will happen to their family. They expected he would live for another few months. That's it! We had 3 months prepare Alex and the other children and ourselves. We never got a chance to tell Alex and I don't think it would have been necessary.Alex knew a lot more than we gave him credit for. Alex died six days later on April 11th. I knew my life without Alex would change me and would make me beyond sad. It has been even harder than I imagined. When I felt his heart beat it's last beat, I physically felt mine tear and still continue to feel it every moment of every day.
Katelin and James were immediately picked up from school and brought home. I can still hear James wailing before he was even in the house. His heart was broken. He lost his best friend, his little brother. Seeing that kind of pain from your children is awful! I wish I could take their pain away. They got to see Alex while I held him in my arms.
Four months have past. School is finally over. We get asked a lot, how are you doing? We are not good. A lot of the time I feel it is too much to bear and there is nothing anyone can do to make it better. Although one thing that helps is remembering Alex and seeing people doing things in honor of Alex. It makes us feel like people really care about him and what he had to go through. It's nice to see how he had an impact on others.
We are participating in a couple 5ks. One is for an organization called HopeKids. The walk/run is on August 3rd. They are a great support to families with a child that has a life threatening illness. They provide free activities for the families. Alex loved going to the movies they did every month at the Jordan Commons. The other one is A Cure Starts Now, they are doing a walk/run called the Muddy Cruddy on August 17th. Should be lots of fun. We are hoping to get a good size crowd in honor of Alex at this one. We will be wearing our Angels For Alex shirts or a red shirt if you don't have one and we ordered pins with Alex's picture on them. They raise money to fund research. Which is so so important with DIPG, since they receive next to nothing in funding. Something has to change. So many families are being effected. If you can donate or come for support we would be so grateful. We would LOVE to see the people who have been touched by Alex.
