Monday followed a pattern that Ashtyn and I have become very used to. It was unpleasant and tough, then enjoyable and fabulous. It started out at noon when we went to Primary Children’s Hospital for a check up, final transplant teaching, and paperwork. By 1 pm we had not been seen by the transplant team. I informed the nurse that we needed to be at the Huntsman Cancer Hospital at 2 p.m. for measurements. At 1:30 we finally met with the transplant doctor to start the paperwork and transplant discussion. By the time we got to Huntsman, we were 20 minutes late and because of that were pushed to a 4:30 p.m. appointment. They were kind to get Ashtyn a room where she slept while waiting.
A few days earlier, Ashtyn went to Huntsman where measurements were done for her upcoming radiation treatments. From the measurements they made lead lung protectors. Ashtyn is getting total body radiation except for her lungs, and the lead protects her lungs from damage due to the radiation. The goal for the Monday appointment was to align the lead lung protectors directly and perfectly over Ashtyn’s lungs. Her skin would then be marked so that, with each radiation treatment, they would know where to place the lead. Ashtyn was to stand on a platform, perfectly still, back straight, with a saddle between her legs for “support”, holding onto handles at the side of her body. The process: The lead plates were positioned in front of her lungs. Everyone would leave the room, an Xray was done, and we would go back into the room. Ashtyn leg’s were blue from poor blood perfusion so I would rub and move her legs around as she stayed strapped to her standing position. After about five minutes the Xray would come back showing that the plates were not perfectly positioned. The lead would then be adjusted, everyone would leave the room, an Xray done, and we would go back into the room. This process went on for 1 1/2 hours when normally it takes 30 minutes. Ashtyn stood with true strength during a very difficult task. At one point I could see the misery in her eyes. “Ashtyn, if you want to cry, you can.” She responded, “I will cry when this is over.”
By 6 p.m., after countless Xrays and lead repositioning, they were still unsuccessful. The concern was that the next morning Ashtyn was to come in for her first radiation treatment and the lead needed to line up perfectly by then. However, Ashtyn had been enduring the procedure long enough and she had a BBQ that was just starting. Ashtyn left the hospital feeling that the day was a waste and she was very worn out.
We arrived 30 minutes late to her pre transplant BBQ. It didn’t matter. The greeting from friends, family, neighbors, and strangers was enough to help us forget our day. Ashtyn sat in the middle of the grass on her chair, and spent 2 1/2 hours surrounded by a lot of love. How do I express in words my appreciation to those who took time out of their evening to come to the party and show such love and support? How do I express my gratitude to all those who were unable to come but care so deeply for Ashtyn and keep her close in their hearts? We know this would be a much more difficult experience if we didn’t have all the thoughts, love, care, and prayers that we get from you.
Tuesday was the first day of Ashtyn’s total body radiation treatment. We arrived at 7:30 a.m.. The first task was to succeed in getting the lead lung protectors positioned properly, which had been such a struggle. Ashtyn stood straight and still as she had done the day before. The lead plates were lined up in front of her chest, an Xray was done, and we were thrilled when it showed that the lead matched up perfectly with her lungs. First try! Tender mercy. She then turned around to line up the lead to the back side of her lungs. It took only two tries to make it perfect. The radiology techs were very pleased that it went much smoother than the previous day. It was then time for Ashtyn to get her first radiation treatment. It is difficult to explain the fatigue that comes from all Ashtyn has to go through. To stand still for 20 minutes is very difficult and feeling even the slightest of nausea makes it that much harder. I left the room leaving her alone watching “Finding Nemo”, strapped in a standing postion for 15 minutes as her entire front body received radiation. I silently prayed that God would help her. When the 15 minutes were up, we were able to go back in the room as she took a break to prepare for another 15 minutes of radiation to her back side. “How was it Ashtyn? Are you ok?” I asked. She responded, “It wasn’t as bad as I thought it would be. I felt angels helping me. I could have stood for longer.”
Moroni 7:29 “Have miracles ceased? Behold I say unto you, Nay; neither have angels ceased to minister unto the children of men.”
It is now T-minus 5 days until Ashtyn’s bone marrow transplant. She is on her third of four days of total body radiation, the purpose of which is to kill her bone marrow. Each morning she goes to Huntsman Cancer Hospital at 8 a.m., dresses in a gown, is strapped to the contraption for front body radiation for 20 minutes. She is then turned around and stands for another 20 minutes to do her back side. Afterwards I drive her home where she sleeps and relaxes in bed. At 4 pm we head up for another radiation treatment, two hours later we drive back home, and she rests in bed the remainder of the night. Nausea is a common side effect people get with radiation. To help, I give her anti-nausea medications before heading to the hospital and also throughout the day. Other than being very tired and nauseated off and on, she has tolerated radiation well. She is the bravest girl I know.
*Please pray that she will continue tolerating radiation with minimal side effects.
*Please pray for a safe bone marrow transplant.