Ashtyn has been home for almost five weeks and it has been wonderful. I can’t complain. It has been quite uneventful. What does she do all day? Normally, she doesn’t do much. She sleeps in, eats lunch, and relaxes in bed. In the evening she’ll usually sit on the couch and watch a few episodes of Chopped. Sometimes she will walk up and down the stairs for exercise, play the piano, hang out with her siblings playing Rock Band, and make funny jokes with her pre-teen attitude. Sunday she went to my moms for our Mother’s Day BBQ. She is living a mellow life.
Friday we went to the hospital for her normal check up. On our way there we picked up two small pork salads at Costa Vida. Once settled in the clinic room, we opened our salads and began eating lunch but soon lost our appetites. Within a few minutes the doctor and bone marrow transplant coordinator walked in. Greetings were exchanged. I was then handed the pre-transplant schedule and plans were discussed on what to expect in the next couple of weeks.
Friday May 17th: 11:30 a.m. Chandler gets his lab work done with a medical history and physical examination. He’ll also meet with a child life representative and have a conference with the bone marrow transplant doctor. Ashtyn will go to clinic for labs and chemo.
Monday May 20th: 9 a.m. Ashtyn will have a four hour neuropsychological evaluation followed by a pulmonary function test.
Tuesday May 21st: 8:30 a.m. Ashtyn and I will go to Huntsman Cancer Institute for a radiation consult and planning session.
Thursday the 23rd: 10 a.m. Ashtyn has a chest, abdomen, and pelvis CT scan scheduled. Afterwards she will have a heart Echo and EKG done, followed by a hearing test.
Friday the 24th: A bone marrow aspirate and biopsy will be done as well as a lumbar puncture with chemo.
Tuesday May 28th: 9 a.m.- 3 p.m. We will be educated every 30 minutes by different health care teams including physical therapy, nursing, dietary, pulmonary, social work, child life, and finance. We will also have a family conference with the bone marrow transplant doctors.
Wednesday May 29th- June 1st: Ashtyn will have radiation twice a day for four days. She will be admitted into the hospital around that time.
Chandler will donate his bone marrow around June 5th, the same day Ashtyn will receive it. Ashtyn is expected to be in the hospital about two months as her body accepts Chandler’s bone marrow and successfully produces a functional, cancer free immune system.
They also mentioned that surgery will be scheduled before the transplant for Ashtyn to get a new broviac central line. Because the current central line has recently been infected, they want to pull it out and place a new one to not risk going into a transplant with any type of infection or inflammation.
All that information was presented in about five minutes. Ashtyn began to cry with the disappointment and fear of the pain that is associated with a new central line placement. She no longer could eat her lunch. Simultaneously I was filled with emotions as I faced the reality that the transplant was at our doorstep. By the look on my face the doctor knew exactly what I was thinking. “It’s feeling real now that you have the schedule.” It was as if I am facing the monster of all monsters, the Goliath of medical procedures. I couldn’t help but feel nervous. There are negative things that could be dwelt upon, however the positives must be in the forefront. Ashtyn is greatly blessed to be clear of cancer enabling her the chance to have a bone marrow transplant so soon, or at all. Having Chandler as a matched sibling donor brings comfort. The faith and strength of Ashtyn’s Army has been and will continue to be an incredible blessing. Ashtyn has an excellent team of doctors and nurses caring for her and coordinating the transplant. Most importantly, we have the faith that God is watching over her. Nothing is better than that.