(Melody in isolation)
I was determined to put my college education to the ultimate use and keep Melody out of the hospital as much as possible. There were still several periods of hospitalization. The first was the two weeks when she was first diagnosed. She needed multiple blood transfusions and the initial chemotherapy. With some help from various family and friends, she was almost never alone there or in the clinic. She certainly never spent the night there by herself.
(Melody and her grandparents)
Her brothers and sisters took turns coming along to the necessary lengthy appointments and stints in isolation. They brought their study materials, books, and games to fill the hours. I was even able to stay with her in the procedure rooms when the doctors accessed her spinal fluid or took bone marrow samples. She was obviously comforted by and grateful for all of this.
We spent nearly two years parenting in these circumstances. Heidi, at 17 years of age, had graduated from high school at home and entered a vocational school full time. So, Ben, nearly 16 at the beginning of things, maturely accepted extra responsibility. We continued with teaching Ben, Melody, Beth, Jesse, Natalie, and Carlie at home, which allowed for much needed flexibility, as well as decreasing Melody’s sense of confinement. Somehow the healthy ones were still able to play soccer and participate in music festivals. Melody pursued her music by playing the badly out of tune piano on the adult oncology floor where she was usually placed. It cheered many other patients. When home, she could attend open air events, such as soccer games. She would also go on easy walks with the family around the local lake. And, the doctors okayed her spending as much time as possible with animals and bugs. They knew that it takes more than prescriptions and extra blood to help a child who has a serious illness.
One complication of her condition was peculiarly related to animals, though. It began with her developing itchy bumps all over, many of which became small blisters. Since a cancer patient always goes to the oncologist first, that is what we did. He was mystified and reasonably chose to send her to a dermatologist. The dermatologist couldn’t figure anything out in spite of biopsies and cultures. Melody’s siblings also developed just a few spots, so we all thought it might just be a virus. Then the break in the case came. Her two younger sisters returned from spending a few days with their grandparents. While they had been gone, the “ailment” had disappeared. Upon arriving home, symptoms showed up again. That lead the dermatologist to recommend the veterinarian… for the cats. It turned out that the cats had microscopic mites that occasionally bite people. Melody’s compromised immune system caused her to have a more severe reaction.
The final solution was revealed two days before Thanksgiving Day. First, we treated all fur-bearing pets with insecticide. Easier said than done. Then, we bug-bombed the house, put an isolation mask on Melody, and went to the movies! It was the middle of the Wednesday before Thanksgiving, so most other people were traveling or otherwise preparing. The theatre was almost empty. We spent the holiday washing load after load of bedding and clothing. I managed to eek out a meatloaf for dinner, only realizing belatedly that I might have at least formed it into the shape of a turkey. The most difficult part of the affair was that Melody was to be restricted from animals for a while. She understood, but it was sad.
Within a couple of weeks she was back to the usual with animals, especially her cat, Yahtzee. She had had him since he was born because his mama belonged to us. At full grown age, he still snuggled awkwardly, but happily, into his baby basket and slept for hours by her side. He was, however, to be a source of great sorrow and insight for her while she was ill.
Yahtzee developed an encroaching paralysis that began at his hind legs. We first noticed his walking and jumping were odd. When it progressed to the point that he couldn’t control his urinary system, the decision was made to “put him down.” It is not wise to risk that sort of contamination for an immunosuppressed child. We were not supposed to take Melody into the veterinary office, but the veterinarian accommodated Melody’s situation. Someone came out to the car to administer the injection to Yahtzee and the beloved kitty died peacefully in her arms.
Strangely, not long before this, Melody began having some sporadic episodes of lack of muscle control. One day she suddenly began to walk like she was inebriated. Not only did this happen a few times, but she had occasions when she lost the ability to speak. Her lips just wouldn’t respond. She was never distressed emotionally or in pain and was frequently amused by it. Of course, it was of much more concern to her father and I! Some impressive worldwide research and evaluation by the doctors discovered the problem. Melody’s body was one of the extremely rare ones that did not process a primary chemotherapy drug by the normal metabolic pathway. This resulted in her having unusual waste products circulating in her blood. These interfered with the nerves sending signals to her muscles. All she had to do was take a certain cough medicine every day and it was prevented.
(to be continued) part 3