Kyle and Elizabeth were very involved in Elaina’s treatment and care plan. The doctors and nurses praised them for it. The parents knew the ins and outs of her care plan from day one. The medicines, the schedules, the risks, the timelines.
Chemo round 1 was difficult for Elaina, and the parents as well. Concluding round 1, the bone marrow biopsy results showed that there was no Leukemia or minimal residual disease apparent, and a bone marrow transplant would not be needed. 3 more rounds to go and this is all just a bad memory. Kyle and Elizabeth were apprehensive about taking Elaina home in between rounds, as they felt it would be cruel to poor Elaina who had already been through so much. Still, they followed the suggestions of the doctors and took her home.
Elaina did surprisingly well coming back for the rounds. Very few tantrums about being there, and she seemed to be warming up to all the doctors and nurses that were part of her care team. And they all made a point to come and see her, even if they weren’t scheduled to. She was the joy of the 7th floor at Golisano Children’s hospital. By the end of round 3, it was routine for Kyle, Elizabeth, and Elaina. They had managed a house, 5 kids, work schedules, extra-curricular schedules, and the hospital. It wasn’t easy, but it was imperative and they did what they had to do.
The beginning of round 4 (the last round of treatments) came with some unfortunate news. Elaina had not escaped the Leukemia. The chemo treatments had been doing its job keeping it out of her blood and bone marrow. But the Leukemia had been hiding in her skin. Elaina needed a more intense chemotherapy, radiation, and a bone marrow transplant.
The bone marrow transplant went well, with little-to-no complications or issues. She showed signs of early engraftment and continued to impress the care team with how well her body took to the donor’s cells. She came home on December 6th looking and feeling great. But on December 21st, Kyle and Elizabeth received the call that the transplant had not worked. The donor’s cells were working just as they should, but the cancer was just too strong and persistent.
After trying to manipulate the immune system by altering medicine doses, and beginning trial medications to keep the cancer at bay, Elaina started to take a turn for the worse. Kyle and Elizabeth were forced to make the decision to keep her home and keep her as comfortable as possible.
On February 7th 2017, at 7:52pm, Elaina passed away on the couch at home, in Mommy’s arms and holding Daddy’s hand.