Gone, But Still Fighting…
There was really no question. It was the ONE thing we knew we could do that could DO something. It was hard, but we knew without any hesitation we had to. She would have wanted to keep doing something. No parent should ever have to think ahead about their own child’s mortality, but with terminal brainstem cancer, you aren’t given that option. You are forced to make decision after decision that you never want to make.
We signed papers, made arrangements, and unbeknownst to us,it was in the eleventh hour. We had agreed to donate Avery’s tumor and brain to medical research. We had to. We needed to know that her suffering, our suffering, would be making an advancement for the cure she never was able to receive herself. The cure we continue to fight for. For your child. For your grandchild.
I distinctly recall the pit in my stomach after signing away and making the decision to arrange all of this. It was a Monday evening. We submitted the papers through another DIPG family friend, who was stepping in to help us make the details secure for whenever that time would come. In our local area, there is not a DIPG research-specific facility leading studies for DIPG, the local children’s hospital has glioma studies but that was too broad for us and we wanted advancement for DIPG. It was the responsible thing to do, and in hindsight, we see it as the Lord’s prompting. What we didn’t know was the very next day, Avery would advance to heaven. One day after these responsible arrangements had taken place.
The delicate details are that these things are very time sensitive. Tumor collection has to take place quickly after. That in order for us to have made a donation, we would have had to have the paperwork in place in advance. For us, it involved someone flying to Seattle, retrieving the sample, securing it for transport back to the medical lab, and then us waiting to hear if everything went successfully. Had we not processed all the paperwork in the timeframe we felt led to do so, donation wouldn’t have been an option.
It is also important to outline the research statics. We know that not every sample is viable. We know that sometimes all these things are processed and the cells don’t grow, rendering the medical sample unusable for advancement. All this, and the possible outcome that we still couldn’t be doing something.
We consider it a great blessing, even amongst our deep pain,to have correspondence with the lead doctor of the DIPG lab that now has possession of Avery’s tumor. Make no mistake,these conversations are hard and unfathomable as parents, but with all that comes hope. Just two weeks ago we received word that Avery is still fighting! She is still moving mountains, showing her bravery. Here is in excerpt from an email exchange with the doctor:
“Thank you again for the incredibly generous gift you have given to DIPG research. Avery’s tumor culture is one of only 9 that my laboratory has been able to establish in the past 7 years. The cultures do not always grow and when they do they are invaluable for research. We will share Avery’s tumor culture with labs around the world so that it can be studied from many different perspectives.”
Did you see that? Avery’s tumor culture is“one of only nine” for the last seven years that has been established! This is why we still fight every single day. We aren’t done fighting. She is still as strong as ever. It’s why we work tirelessly to raise more research funds as a foundation so we can find the cure. It will happen.