Daniel is NED-- he is fine! And we can now wait 6 months for his next chest xray. He will continue with the ultrasounds, urine and bloodwork every 3 months but he gets a reprieve from the chest xrays—now only twice a year.
He is doing so well--- playing soccer, laughing, getting in trouble for hitting his sister and clogging the toilet with his “can I flush this?” experiments. He is loving and full of light and life. “I love your face, mama,” he tells me and cups his palm under my chin. We carry the epi pen and work so hard every day to keep him safe from nuts and sesame and sometimes his little life seems so fragile. Then I see him playing soccer for the first time last weekend—racing down the field, kicking the ball, throwing elbows at a kid trying to take the ball from him—and all the parents on the sidelines laugh because he is so small compared to the other kids, and has been so sick, and here he is blasting down the soccer field and I’m full of tears and he’s just amazing.
But, I have to tell you that many kids who should have been were not on soccer fields or playgrounds last weekend. The Jimmy Fund was packed today--- standing room only. I do not say this with any exaggeration. There were no seats left.
Steve and I stood as Daniel played with the dinosaurs at our feet. Three other mothers sat behind him on the steps beneath the fish tanks with their kids, who were clearly cancer patients--- tired and bald, pale. To my right was the doorway that leads to the infusion room. This door is never closed and I feel a superstitious pull to never, never look in there. But today a little girl drew my attention. I will not intrude upon her privacy and describe her here. But I will say that from where I stood, I could see two rows of beds—10 of them. All full. And behind them more beds. Rows of beds.
And in each bed, a child. With a port or PICC line or other implanted IV attached to tubes infusing chemotherapy into their bodies. Infusions and blood transfusions can take hours. There are TVs above each bed with DVD players. Sponge Bob and High School Musical, Thomas the Train. There is a lot of crying. And laughing. And eating. Sleeping. Vomiting. Parents singing. Parents reading books aloud. Some kids do school work leaning on the brown wheeled tables that fit over the bed. Some parents lie in bed with their child.
I don’t know how I ever did it--- got up and walked through that doorway to the Jimmy Fund infusion room. Put my kid—our little guy-- in one of those beds, and watched as nurses injected chemo into his port, then read stories, watched DVDs, and sang songs as all of the other drugs to control the side effects of the chemo dripped in to his body. I had no choice. There was no option. But the getting up and walking through that doorway-- I don’t know how I did it.
Steve or I would lie in bed with Daniel. We would pull the curtain around us—not so much for privacy but for seclusion--- like a blinder to close ourselves off from seeing too much, hearing too much, knowing too much. Sometimes your own child’s pain, your own pain as the parent, is so overwhelming, it is all you can allow yourself to see.
But that is like trying to look at one wave in an ocean.
Because the other beds are full--- not just of children but of dreams-- to play soccer, or to dance, go to the prom, buy a new Webkin or just turn 5. And I know that across the glass bridge at Children’s Hospital on the fifth floor more children are receiving their chemotherapy in-patient. For days or weeks—they are living at the hospital while chemo drugs drip into their veins.
And these drugs cause such pain. And they don't always work: cancer is the number one cause of death by disease for children in our country--- pediatric cancer is cured only 75% of the time. Had Daniel's diagnosis been just slightly different, he would have received radiation, which would have slowed his growth and increased his odds of a second cancer later in life. Had he been just a single stage more advanced, he would have received Doxyrubicin, a drug that causes permanent heart damage in one of four children who receive it.
Children and adults with cancer need better cures.
For every parent bringing their child through the doorway into that infusion room and for every child in those rows of beds, or across the glass bridge, or across the country, we are walking for that cure. For every day those beds are full. And for every family we’ve come to know who have faced or are facing the battle. We are walking.
Please support our walk. No amount is too small.
The SuperDans Team PageThank you.
