This is the ninth of thirty-one installments of Donna’s Cancer Story, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month. Each post will cover one month of Donna’s thirty-one months of treatment.
I’ve never run a marathon, but I have seen a daughter through a stem cell transplant. So there’s that. After the decision was made to transplant Donna’s own stem cells back into her body after a mega-dose of chemo, we tried to prepare for the unknown. That’s a hard thing to do. We met with the docs, we asked to be connected with another family that had been through the same with a young child. We tried to focus on the 85-95% of children that survive their stem cell transplants.
A week or so before the scheduled date of admission to Children’s Memorial to begin the chemo, we had a sit down with the stem cell doc assigned to Donna. While we waited in the meeting room, we couldn’t help but notice the Xeroxed flyer for a little girl’s memorial service tacked to the bulletin board behind us. It was purple.
The doc was very informative, though cool. His manner was very different from our oncologist we had grown to love and rely on. He talked stats and numbers and had a list of risks and side effects. He calmly told us that the treatment would make Donna infertile. That she would require hormone replacement therapy (HRT) starting in adolescence to develop along with her peers. Puberty would not come naturally. Donna would also require growth stimulants as the toxins would stunt her natural development. Our girl who had always been petite and delicate would remain so. She went into her transplant at 28 months and 24 pounds.
This doc was tough, all business, minimal eye contact. That kind of bedside manner is hard to take when you’re a parent, but you have to respect what this man does for a living. One in ten of his patients die and they are all children. It took a while, but in the end, Donna melted him. He began to gift her books and she returned the favor with drawings or paintings. Relationships are everything, even in cancer.
We wouldn’t be admitted until late in a December evening, so on Donna’s last day at home we worked to create some holiday cheer for the girl. In the morning we visited the Christmas trees at the Museum of Science and Industry. We came home for a final nap in her own crib, woke up for dinner and got the call about 6pm that Donna’s room was ready. It was snowing and beautiful. A heavy, gentle snow. We drove slowly along residential streets to look at the holiday lights. There was no rush to get to the hospital we would call home for the next month. Donna was happy. We were anxious.
One of the many things that made us anxious was finances and medical expenses. Our insurance company had denied Donna’s stem cell treatment as “experimental.” The financial director at the hospital remarked that the denial letter was one of the “tightest” she had ever seen. We consulted an attorney, but had no energy for that kind of fight. With help from the financial office, we applied for Public Aid. Say what you will about Governor Blagojevich, and there is a lot to say, but he had championed legislation in Illinois called All Kids that made it a legal requirement for all children to be covered under insurance. That meant that because a for-profit insurance company had denied Donna’s medically recommended treatment, the State of Illinois assumed the financial burden for her stem cell transplant. To the tune of $600,000.00. From the bottom of our weary hearts, THANK YOU, taxpayers of Illinois. Were Donna to be diagnosed today, this option would no longer be available to us, as families that fall above a certain income level are now disqualified; that $600,000.00 expense would fall to us.
Over the next seven days, Donna received more chemo than seemed humanly possible. The poison had names like etoposide, VP-16, thiotepa. Thiotepa is an especially melodic string of syllables, isn’t it? Thiotepa is a bitch. While it is being administered over a series of four days, the strength of its toxins are so potent that Donna was required to take four baths a day. At 8am, 2pm, 8pm, and at a ghastly 2am, Donna was carried to the tub to rinse and clease the residue that was excreted from her skin.
On Donna’s chest is her port, with the beloved tubie flung over her shoulder. The arm has the PICC line that was installed specifically for the transplant, allowing another means into and out of Donna’s body. Toxins in, blood out. The blood is how progress is measured (through the presence or absence of white blood cells) and infections are identified. Soon after this photo was taken, an NG tube would be placed. Sixteen inches of tubing running from her nose, down the esophagus, directly into the stomach. This was how nutrition was maintained during the transplant. So many tubes . . .
After chemo was administered and a day of “rest,” Donna was moved to an isolation room. This is where we would spend the remainder of Donna’s stem cell transplant. The room is small, but private, so that is a bonus. The photo below is a good shot of Donna’s small room, which had its own ventilation system and a small adjoining ante room, where visitors needed to scrub and gown every time they entered or exited. When one child leaves and before another arrives for their transplant, the rooms are scrubbed floor to ceiling and the furniture is scrubbed with toothbrushes. One errant, industrious germ is enough to kill a kid that lacks an immune system. There are eight of these rooms at Children’s Memorial and they are almost always full.
Donna’s room was decorated with “bubbles” from friends and family that had been requested on her caringbridge page. Before we moved in, the Child Life staff had asked what licensed characters Donna liked. The staff would then decorate the room before we arrived to make a cheerful home for Donna while she healed. The thought of dozens of Doras or Caillous staring back at me for weeks was too much to handle, so I asked readers and supporters to send along their well wishes in a “bubble” to decorate the room. They were beautiful and kept us company during some dark days. Those bubbles now decorate the walls of our playroom.
If you look closely, you’ll also see two pictures of Wonder Woman on Donna’s bed. They were given to us by friends and were taped to Donna’s bed at each admission. A reminder to all that Donna was a superhero, powerful, and not to be underestimated. As I was packing for the transplant stay, I pulled out the Wonder Woman cards and Donna grabbed the one at her head where Wonder Woman is holding open the jaws of a dinosaur. Donna looked at it and said, “She’s going to fight that beast away, but right now it’s scary.” Amen, Donna.