Brian and I spent a weekend we will never forget in Philadelphia. This wasn't a vacation. However, for both of us, it was a significant trip we will never forget. Just a little while ago we were invited to participate in a conference organized by Children's Brain Tumor Tissue Consortium, Swifty Foundation, and Children's Hospital of Philadelphia. We were recommended by one of Heather's doctors, Dr. Rishi Lula. Swifty Foundation organized this discussion group. 30 families in all were invited, 14 families showed up. We all are a part of a club that no one should ever have to be a part of. We lost our children to a brain tumor and donated the tumor/tissue to research. Each of us had our story and a reason why we did it. We once again found out why our stories are so important, not only for our friends and family, but to researchers and others who we pray never have to truly understand this. Everyone agreed that they donated to find a cure. It is a desperate plea from the depths of our souls that no other child suffers brain cancer. We also agree that we never want another parent to go through this tragic loss.
The Swifty Foundation, CBTTC, and DR. Angela J. Waanders are trying to cover all the bases in what has to be the most difficult situations. We have an incredible need to research to cure this cancer, but this can only happen through tissue donation. How does a Physician best approach a family? During this time when our children are dying, we have very little attention span. Most of us have not slept in a very long time. Our hearts are broken and the staff that has cared for our children, well, they are broken as well. In order to stop this cycle donations have to happen. Yet, the staff is left with a daunting task. They are trusted with approaching families when they feel that they have given and fought harder than they have in their whole lives and yet, are loosing their child. How is a family approached when all seems lost? Then to ask the family to give part of the child when the child is gone seems heartless. I would like to say that it is not heartless. Sincerely, it is about giving a future to our children as well as giving a future to other families. It's NOT AT ALL ABOUT GIVING UP. The donation is allowing us to continue to fight and defeat this beast. We spoke of many topics that Brian and I both will be posting about over the months to come. Both of us feel that this is a good place to begin this part of this story.
Brian took the lead here. I was not able to take my focus off the care of Heather. Sincerely, every fiber of my being was pleading before the Lord every healing story, every healing scripture. I am the care giver and that is all I was willing to do. Heather is His, she is absolutely a child of God. Although I would not let go, I knew that Brian was right. If the only way God would heal her was to take her home, then the body she left behind should be used to make miracles happen for others. We determined to donate her brain and spinal cord. Not just the tumor itself. At that time we did not understand the significance of that decision, yet it has been 3 years since Heather has gone home and we have learned much. The total brain and spinal cord give more information than the tumor can alone. The details for that is another blog.
I'm not sure I can explain what we went through and do that time true justice. Our experience was kind of like being in the eye of the hurricane where everything is calm. The calm being doctor visit, chemo, radiation, overnight stays, extremely good days, followed by extremely bad days. The calm was "Tour De Life" Bike ride days, P90X days, Mom holding Heather in bed days. The days when Heather wanted to go to a church concert without Mom (and did). We had Disney days, scary Platelet days, Wednesday Night Youth at 4:12, Nebraska Days, and those glorious sleepover days. These memories all happened in the "Eye of The Hurricane", still knowing that the hurricane was closing in.
When the hurricane hits it wants to destroy everything in its path. Yet, somehow not everything is destroyed. The families we were with, most of them were DIPG families, but not all. The families were were with, these 14 families, we got hit the hardest in this hurricane. Our kids died. All of us want our children back. Unfortunately, we won't see that here. We want to fight for your children and we want to hit back with everything we have, and thats what we did. We took that anger, grief, fight and FAITH and focused it like a laser guided missile. We took everything and are now on the offense. Unfortunately, we know that hurricane is coming back. It may not be our children, we are fighting for yours. We want to stop all brain tumors from happening. We find to find the source of these and the brain tumors that are found, we sincerely want to stop ALL BRAIN TUMORS. Our weapon is RESEARCH. Our ammunition is OUR KIDS Tumors. It's everything we have.
What the Swifty Foundation and these doctors realized is they need the input from the families who went through this. That is how we got invited. This is what The H Life is a part of. This is where our fight is. There are plans in action. Things that Brian and I could have never dreamed of, yet, we still are apart.
We want to share what Swifty has planned and the launch of the website and so much more. Those things are for later. For now, I want to talk about the tour of the research facility. Yes they actually let us in. The incredibly smart, dedicated, scientists gave us a tour of the research facility at CHOPS. These amazing scientists took the time on a Saturday night at 5pm to give us a tour. Not just any tour, they explained and answered our questions that are pretty intense. I am so very grateful for that.
We got to see live DIPG and ATRT cells in the lab. These are cancer cells. We have seen the enemy. Brian asked, "So do you think you find the cure?" Answer, "Yes" I swear it was confident as if i asked him if he wanted popcorn. "Yes" We can see that they are as determined as we are. Parents asked questions like, "Are you ok with parents of children who have passed coming to see the cells like this? How does it make you feel?" I am not sure I would have had the ability to ask that but the Scientist response was so very sincere. "This gives me more fight, I can't talk about it to much, I will loose composure. I want to fight harder." He is a good guy. This man is absolutely amazing.
What does the facility look like? Well, there is something called a Repository. The "repository" is a very large freezer -21 degrees where the samples of DNA to tissues of disease is stored. For those of you who went to the library before the computer I have a Brianism for you, "Picture the card catalog on steroids in a freezer with a robot getting the location of the book for you. There is a potential for 2 million books.....It has taken them 10 years to fill it up 25%"
When you have surgery to remove a tumor, donate that tumor to research. We learned that the tumor changes and morphs during its lifetime. The medication that is required at the very beginning is not at all the medication that is required after radiation or regrowth.
Pretty neat stuff. I know this is quite a bit to sink in. We will share more in time to come.