Well I am headed to Washington DC Sunday morning with my sister, Melanie, to speak up for the kids in Utah with cancer and to lobby congress for much needed funding for childhood cancer research. Since the day the director of advocacy for CureSearch contacted me to ask me to be Utah's Team Leader, I have been thinking about what this opportunity will bring. I have given a great deal of thought about what this position means. I want to share with you some of our experiences as I think about all the kids who desperately need a cure.
At the Childhood Cancer Christmas Foundation party, I had the opportunity to meet some new families and reconnect with some cancer families I already knew. If you were following us last year you might remember a couple we met who had lost TWO boys to cancer. She so completely randomly sat at our table again, and I was so happy to see her! Her story absolutely broke my heart last year. I must say she looked a great deal better than she had the previous year, and she told me her family had been able to have some great times this year. Not without sorrow, I am certain about that, but a little bit of good feels wonderful, I imagine, after going through something like that. I still think about the loss her family endured. Both of her precious boys had Down Syndrome, as innocent and sweet as you can imagine. Both of them had their lives stolen by cancer.
Another couple that sat by us have a daughter with a brain tumor. She has had one since she was a toddler, and has had so many brain surgeries I couldn't keep track. Shunts that haven't worked, and had to be redone, surgery to remove the tumor, they have truly been through hell with cancer. I just sat there in jaw dropping disbelief listening to their story. The first night we met the parents only, so I knew her whole story before I met her. She has had to go to the east coast to find someone who will operate on her to try and save her life from this beast of a disease that is attacking her. I can't say I blame them, everyone here is telling them there is nothing they can do. The surgery would be too dangerous and probably would not be successful in eliminating the cancer. WHAT?? This is my child, there can't be nothing?! So they found someone willing to do the surgery, and have been traveling back and forth to the east coast. The surgery is done, she survived it, now they are waiting to see if the cancer will come back. She is 10 years old. Her whole life has been fighting cancer. When I was able to meet her the next night, I could see what this stupid disease has stolen from her. She couldn't hear well, she needed help to walk, and she couldn't make eye contact with me. I introduced myself to her as I tried to keep a handle on my emotions, and her mom told her what I was saying loudly into her ear. Jade was with me and this little girl just looked at Jade and reached out and grabbed her hand and held on to it. Jade didn't even flinch, she just sat there holding the hand of this sweet girl who may not be alive the next time I see her family.
Then, we went to sit with Santa Clause, and when it was our turn, one of the directors of the organization came up and asked if someone could get in front of the line. She said he was terminal and was so tired he needed to go home, but he wanted to see Santa first. Obviously we said of course. How I kept from out and out bawling, I have no idea, but this boy was so thin that all I could see were his bones. His whole family was there and helped him up to see Santa to take a picture. He was smiling, in the moment of joy that he was experiencing in his dark, dark world. I knew he didn't have much longer to live just by looking at him. I don't even know if he is alive right now.