Amy Bucher with her daughter, Arden. Amy writes about the impact the government shutdown is having on kids with cancer and their families. “My heart aches for any parent in that situation today,” says Amy. Photo: Flashes of Hope
In the emergency room, my husband and I feared it was appendicitis. Please, don’t let her require surgery, was my prayer for a while that day. We were immediately taken to a room in the back after triage, which indicated that the emergency staff was also concerned. Then the prodding, the palpating of Arden’s abdomen, and the repetition of our story of her symptoms began.
Arden was not feeling well and wasn’t too thrilled about her constant string of smiling visitors with stethoscopes around their necks, but she was tolerant, especially when they would bring her Beanie Babies and other surprises for being so cooperative. She got a frog, a hippo, and at least three other soft creatures during our time in the ER.
Arden cried for her first blood draw, but she recovered quickly. She refused to provide urine, so after many desperate pleas, she had to be catheterized in order for them to get the sample they needed. She was a trooper during her x-ray and ultrasounds, watching Dora the Explorer for the first time while the jelly was put on her abdomen and the wand went across it. She colored, talked, and played up a storm with me and Rick at her bedside in between tests.
When the resident came in and said to Rick and me, “We found something on the ultrasound. It looks like a tumor. We suspect that it’s neuroblastoma,” I went into shock. I listened, but her words started running into each other.
I went into shock. I listened, but her words started running into each other.
I handed Rick the crayon I was holding to write down notes about this new word (“Can you please spell it for me again?”) on the back of a “Safe Halloween Tips” handout that one of the Patient Liaison representatives had dropped off in our room, and excused myself for a moment. I planted a long kiss atop Arden’s head, saying “I’ll be right back,” as calmly as I could. I knew it was coming, and I didn’t want to lose it in front of her.
I stumbled down the hallway to find a nook. I put my hands in front of my face and let the tears come. Trying to muffle my sobs, I ended up slumped along the side of the wall.
I’m not sure how long I was there when a few nurses gently took my arm, asking me what happened. Somehow I choked out the words, “My daughter has a tumor,” before just about collapsing. They whisked me away to a “quiet” room. I can’t remember their faces; I don’t think I could really focus on anything. I know one of them was a larger woman, who embraced me tightly and let me melt into her, as I wept uncontrollably. “I’m so sorry. You’re at the right place. We will take excellent care of her here. You’re at the right place.” I’m not sure who said these words, but they helped.
If, that day or the following, the attending physician had told us that, because of a government shutdown, our daughter could not enroll in any new clinical trial, I don’t know what we would have done.
I had to gather my composure as quickly as possible, not wanting to be away from Arden for too long or to alarm her with my absence. I went back in, ready to learn more information, and Rick took the opportunity to take some time for himself. She would have a CT scan, the resident explained, and that would give us more information. Once the scan was complete, we would move up to our new home away from home for the next month.
October 11, 2007 was the longest day and night of my life. I can’t speak for Rick, but I suspect he would probably agree with me. Arden watched more videos of Dora and Sesame Street — and whatever we could find from the Child Life Department to take her mind away from where she was — than she had watched in her 2 years, 11 months, I think.
Arden was showered with attention and gifts, as well as compliments for how brave she was. Rick and I did our best to reassure her, and when she was finally asleep for the night, we huddled together in a single chair that folded out to become a bed. Neither of us slept. Both of us alternated between crying and comforting each other. We were terrified. We had no idea what the next ten months would bring.
If, that day or the following, the attending physician had told us that, because of a government shutdown, our daughter could not enroll in any new clinical trial, I don’t know what we would have done.
My heart aches for any parent in that situation today.
Please, write or call your legislators and call for an end to the shutdown.
We, the volunteers for the St. Baldrick’s Foundation, will not shut down. We keep fighting to fund the research that will lead to outcomes better than ours. But our efforts are being stymied by the current political climate.
This shutdown illustrates the critical role government funding plays in advancing research that will lead to better treatments and, hopefully, cures for all children with cancer.
Their lives, their futures, should not be threatened because their funding has been frozen, caught in the middle of the current budget battles.
Please, write or call your legislators and call for an end to the shutdown. No matter what side of the aisle they are on, critically ill children’s lives should not be threatened by legislators’ inability to compromise.
Thank you for being their voice, for trying to protect them from the harm this shutdown is already causing too many families.
Read more about how the government shutdown impacts children with cancer.
SBF
Tweets »
