For several days following Doris' discharge from the bone marrow transplant unit, all of us loaf around the house and recuperate from our 90 day marathon, the first 30 days representing Doris' relapse and the induction therapy to obtain a second remission. The relapse kicks off a hospital stay, followed by twice a week visits to the pediatric oncology clinic for chemotherapy. It wears her down. The prednisone (a steriod) she's given makes her cheeks puffy and moody.

The next 30 days go by much quicker: a one week vacation to Orlando, Florida courtesy of Make-A-Wish Foundation. Following this, Doris has appointments almost every day, most are for pre-transplant tests, and for good measure, 6 consecutive days of cranial radiation. She also has surgery to install an indwelling Hickman catheter. Following this surgery we learn that the surgeon punctured her right lung during the procedure with a needle causing a pneumothorax; her right lung partially deflated. It heals on its own after about a week.

Back in fighting form, Doris proceeds directly to the final 30 days of the marathon--the actual bone marrow transplant.

BMT patients are in a delicate condition following discharge. Doris is required to return every other day to clinic for blood and other diagnostic tests, and infusions of electrolytes or blood products, such as platelets. We are cautioned not to let Doris out of the house and to be careful about spreading germs. The entire family must remain vigilant with frequent hand washing.

Doris is cautioned about the foods she eats because anything heavy or spicy can cause nausea, vomiting, and diarrhea. Doris eats pizza with no problems--the transplant doctor hears about this, looks at the ceiling and exclaims, "Oh my God!" He admonishes Doris not to eat pizza or any spicy foods. His words are wisdom, Doris learns, when she eats ravioli and barfs forthwith, having both nausea and diarrhea for the rest of the day.

She has good and bad days. On good days, Doris is her old self with lots of energy. We reign her in at times because she wants to do things that put her at risk. For example, she talks to a friend on the telephone and gets herself invited to spend the night or she wants a friend to come over and spend the night. She wants to go to an outlet store to get a pair of jeans she sees on sale in the newspaper; she wants to watch the latest movie at the theater; she wants to eat pizza.

It is winter and the weather is not good for Doris to go outside. She spends a lot of time either sleeping or watching TV. After several weeks of lassitude, Michelle and I become concerned that she's not getting enough exercise. I prod her to go for a walk around the subdivision with me. She finally relents to my prodding and we go out for a walk.

We walk around the subdivision once, which is about a mile. I notice that Doris is in much better shape than I'd thought.

"Wanna go around again?" I ask.

"No, I'm bored," she replies, looking ahead.

"Tired?"

"Race?" She flashes a grin, then takes off running ahead of me. Still running, she looks back, giggling, as I run to catch up.

She runs out of steam after a minute or so. But not bad considering she is less than eight weeks out from the transplant. We resume walking back to the house. I have underestimated my daughter's strength once again.

Another time I underestimate Doris' strength is when it snows--not a common occurrence in Northern Virginia. Doris has only been out of the hospital a couple of weeks. Michelle lets her go outside with the other kids and sled down a nearby hill.

"Are you sure Doris should be going outside?"

Michelle replies, "No I'm not sure. I'm not sure if she'll ever get to play in the snow again either. This may be the last opportunity she has and I'm not going to keep her from having fun."

I go outside to shovel the walk. I see Doris approaching from the street. All bundled up, she trudges through the snow up to the house and, out of breath, says to me, "Dad, get Heidi, she's running down the street following the other kids. I can't catch her."

"Okay," I say. "Here." I hand Doris the snow shovel and take off after Heidi. When I return to the house with Heidi, the entire walk is cleared of snow. I find Doris inside, sprawled out on the sofa watching TV.

Michelle always takes Doris with her to the grocery store or to Walmart. They go late at night to avoid crowds. Doris wears her face mask into each store.

We go to Richmond to an ice skating rink. Doris skates for several hours and wears a hole in her face mask. A few days later at clinic when the doctor asks Doris if she had a good weekend, she says, "Yes."

The Doctor asks slyly, "What did you do this weekend, Doris?

Doris says, "I went ice skating." Of course this earns another admonishment from the doctor. Doris calls him Dr. No because he always says, "No, you can't do this" and "No, you can't do that." We learn to our surprise that the disposable face masks that Doris uses are only good for about 15 minutes.

Looking back, the nine weeks or so--the post BMT discharge period--was a sublime time for us. Doris was home and was feeling pretty good. Although isolated much of the time at home, she was on-line a lot, chatting with friends from all over the country. As Doris' hair began to grow again, we rubbed her head every night at the dinner table, wondering what color it was going to be or if it was going to be curly or straight.

We never found out.

It was Friday evening and I had just arrived from work. When I came in the door, Doris said, "Dad, go upstairs and talk to mom."

Seeing the expression on Doris' face, I immediately prompted, "What is it?"

She replied, "Just go see mom."

I demanded again to know "what?" Doris said, "They found some suspicious looking cells under the microscope today at clinic."

And so it began. After approximately two months of twice a week clinic visits, Doris' white count had suddenly elevated 9,000 from 3,000 only a few days before. Still in the normal range. The sudden jump elicited suspicion and another sample was drawn and studied under the microscope. One or two of the cells on the slide looked un-normal. "Come back Monday," said the doctor. "If it is a relapse it will present itself."

It left us with a weekend to worry about a second relapse. We had friends from Mississippi visiting, which kept us from sulking, although it didn't keep our minds off what we were fearing. On Sunday, Doris said, "I'm not feeling right."

On Monday, March 1, 1999 we went to clinic and waited for the lab results. The results came back as we feared. Doris had relapsed. Her white count was 47,000. We were devastated. Doris kept a straight face until Tonya King, a Child Life Specialist, came into the treatment room and hugged her. I walked in and both were crying. I sat down and dropped my head.

Dr. Dunn came in to talk with us. The tiny room was crowded. Michelle and I on each side of Doris who was sitting on the exam table. Clem, the social worker and Ken, the pastor stood behind Dr. Dunn who was seated on a chair in front of Doris.

"Doris, I don't need to tell you that this is extremely bad news. The transplant was the big gun therapy-wise. Relapsing so soon following transplant leaves no good options."

Dr. Dunn saw that I had a stack of papers from a weekend of searching on the Internet. "I see you have some papers there, what did you find?"

I told her about the Donor Leukocyte Infusions. She said, "Well, that is an option but I think it is only feasible right now to use chemo to get a remission."

"There is this other phase I protocol that uses a monoclonal antibody, B43-PAP with standard induction chemo."

She nodded and said, "There is no magic bullet."

Her recommendation was to administer high dose Ara-C which will make Doris neutropenic for about a month. We agree on this approach and Doris is admitted to begin hydration in preparation for the Ara-C.

A bone marrow aspiration done later shows 67 percent blasts. One of the new oncologists to join the peds/hemonc team at MCV is Dr. Neil Grossman. He says he will check into the phase I protocol I'd mentioned. "I have a friend at Children's in DC. I'll give her a call and find the latest scoop on the B43-PAP."