In the post “Opposition Is Not a Bad Thing” I wrote, “In life and in cancer I have learned to ‘just go with it.’ I have to plan for the future and then roll with the punches as they come, adjust plans, adapt to the unexpected, embrace change, and face head on whatever life brings. It’s all good. Or eventually it will be.” In the more recent post, “On the door step” I wrote out the upcoming schedule leading to Ashtyn’s bone marrow transplant. With her unexpected gallbladder surgery the schedule has been changed. No biggie. We’ll just go with it.
NEW UPCOMING SCHEDULE:
Tuesday May 28th: With the idea that Ashtyn’s bone marrow will start producing white blood cells, she will have a bone marrow aspirate and biopsy, making sure there are still no detectable cancer cells. It is absolutely imperative that there is no evidence of cancer. We all have abnormal cells in our marrow, however Ashtyn needs less than .01% abnormal cells.
Friday May 31st: The results will be back.
Saturday June 1st: The Primary Children’s Hospital KSL yearly telethon will be held at the hospital from 7 p.m.- 10 p.m. If Ashtyn feels up to going, she will. Either way KSL will broadcast a story about Ashtyn. While playing the Phillip Phillips song “Home” (which Ashtyn picked) there will be a slideshow of photos of her shown and a couple minute recording of Ashtyn telling her story.
June 4th, 5th, 6th, and 7th: Ashtyn will go to the Huntsman Cancer Institute twice a day for a low dose of full body radiation, killing any remaining cancer cells as well as Ashtyn’s bone marrow.
June 8th and 9th: She will be given a high dose of chemotherapy in the hospital where she will remain for nearly two months. The chemo will aid in completely destroying Ashtyn’s bone marrow and immune system.
Tuesday June 11th: The bone marrow transplant will take place. Chandler’s stem cells will be infused into Ashtyn’s blood stream where they will then find their way to her bone marrow, and hopefully within 28 days engraft themselves by producing their own blood cells.
A bone marrow transplant is a very complex procedure that takes the body a year to fully recover. I will soon write a post dedicated to answering all the questions of what a bone marrow transplant is.
Currently Ashtyn is in the hospital recovering from her gallbladder surgery. Efforts are being made to get her to feel well enough to go home. Her surgical pain needs to get under control without using IV narcotics. We hope her stomach becomes less nauseated allowing her to handle the continuous nasogastric tube feeding without throwing up. Overall, we want her to feel relatively well. Currently she isn’t in a hurry to go home because she feels so crummy. This morning she said, “I don’t mind if I have to stay in the hospital until the bone marrow transplant.” That’s not the goal and hopefully she will feel well enough to go home soon. Her recovery is being prolonged due to the fact that she has close to no white blood cells to help in the healing process. From the last round of chemotherapy her blood counts have not recovered yet. It is suspected that her bone marrow should start producing cells in the next several days.
Today was post op day 3. My observation was that, instead of feeling better each day, she was feeling worse. Yesterday she was able to walk in the halls. Today any time she moved, nausea flooded over her. Walking to the restroom was enough to make her fight to not throw up so walking the halls was out of the question. There was one time that her willpower wasn’t enough. She panicked thinking she would throw up her NG tube. Luckily the NG tube stayed in her stomach as she threw up in a plastic blue bag. By 7:30 p.m. Ashtyn was the most miserable she had been all day. The surgical pain seemed out of control even with morphine and oxycodone. Even with the medication zofran, her stomach was failing at handling the food she so desperately needs. I wrote a quick Facebook message, “Ashtyn is having a very difficult time keeping food in her stomach. She feels so sick. The determination is strong in her eyes but she needs some prayers. We couldn’t do this without you. Thank you.”
Lab work was done to see if she had pancreatitis. Results came back showing her pancreas was fine. It was only a couple hours after I posted the Facebook message that I saw a difference in Ashtyn. Her pain was gone. She said, “I’m the most comfortable I’ve been all day.” Her stomach was calm. Since she was getting up to go to the restroom I asked if she would be willing to walk to the nurses desk and back. She complied. I walked behind her as she pushed her IV pole down the hall, past the nurses desk, down another hall, turned around, walked back the way she had come, past her room to another window, turned around, and walked back to her room. She worked up a sweat walking farther and faster than I would have ever encouraged. Once in bed she looked at Facebook and smiled at the 33 comments and 110 “likes” that accompanied the previous request for prayers. She knew those prayers were answered. At 10 p.m. she played Fish with her favorite tech and told the nurse that the infusion rate of her NG food could be increased because her stomach felt fine. Unbelievable, yet totally believable. Prayers are answered. Tender mercies are real.