Most of us are worried about getting our kids to eat their broccoli, go to bed at a certain time, or getting them to sleep in their own bed. For my friend Molly, her son wanting to sleep next to his daddy is a desire she's more than willing to humor, considering everything he's gone through.
Molly's son is a cancer survivor. A 4-year-old cancer survivor. She shared the story of her son, David, with me so I can share it with you.
In Molly's own words:
My 4-year-old son is refusing to go to bed. He had a busy day today, with his oncology follow-up and accompanying appointments in radiology with a victory cheese sandwich squeezed in there. You see, my 4-year-old is a cancer survivor. We were given this ridiculous news at the end of June 2008. David was diagnosed with bilateral Wilms Tumor at 10 months old. More ridiculous, in retrospect, was being comforted by medical personnel saying that if your child has cancer, at least it is Wilms Tumor and not something worse.
A common treatment path for Wilms Tumor involves four to six months of chemotherapy, either before or after surgery to remove the tumor. Some patients get radiation: Cut. Poison. Burn. In David's case, they removed two pounds of tumor from his 22-pound baby body. That took out the whole left kidney. There was also more on the right kidney that couldn't be gotten easily.
We went for chemo every Thursday over the summer. David didn't seem too affected by it. Scans of the area (CT scans, ultrasounds, and/or X-rays) were to be done after six weeks. Those were questionable. Still, we pressed on.
After four to six months of once a week clinic visits, occasional hospitalization to check out fevers (a fever of 99.4 or higher under the arm means an automatic express trip to the ER) became two years of inpatient stays, three to five days every three weeks. That's because the cancer was supposed to go away, but it came back where the kidney used to be. Thus, stronger poison. Then we had to deal with the arrival of a new baby. I found out he was coming around the same time I learned about the new chemo regimen.
Jesse was born healthy on July 5, 2009, only one day past his EDD, while David was also being admitted for a high fever. Due to asinine hospital practices, Jesse was readmitted for jaundice. This was actually not a big problem, because it meant that my husband and my mother were in one place to care for David, Jesse, and postpartum me. All of this was taking place during the big swine flu scare and the hospital frowned upon having non-patient babies up on the inpatient floors, but with the amount of time David spent there, there was no avoiding it -- not even the amazing amount of help from my mother or countless others could make up for that.
But then, they decided that no children were allowed anywhere in the hospital unless they were patients. So much for family-friendly treatment! There's nothing like being made to feel by everyone, including your own family, that your baby is a giant unwelcome mistake. At this point we did what we had been considering for a little while: gave up everything, sold the house, left the jobs, left my husband's family, and moved in with my parents. I should also mention that my husband was employed by one of the best school districts in the state. They sought to penalize him for missing too much work.
We made the move over Thanksgiving, and my husband returned to the house to finish work and get the house ready for sale. December 7, 2009 was when they saw a lesion on David's liver. We thought for sure that we would lose him. He was already on a strong regimen and the cancer was still coming back? We scheduled another surgery. Of all miracles, the lesion turned out to be ... nothing. Just a collection of adhesions from radiation and previous operations.
On April 1, 2010, we were told that David had had enough chemotherapy because his remaining kidney was being compromised. He has since been fine in that department. We also learned that another of the chemo agents, Carboplatin, had damaged his hearing enough that he required hearing aids. David is cancer-free and has been so for 20 months. And, given the choice, he would always sleep right next to Daddy.
Thank you for sharing your story, Molly. I'm so glad David's cancer-free!
Have you or anyone you know dealt with cancer in children?
Image via Molly May