Today is day 6 of the 28 day home chemotherapy course and everything is going great. Friday, April 26th was day one. We went to the hospital at noon. After she was examined and her broviac central line dressing change was done, she sat in a chair while the IV chemotherapy drugs Ara-C and Cyclophosphamide were given. She also got her monthly IV dose of Pentamidine, which is used as a prophylactic antimicrobial medication given to prevent Pneumocystis pneumonia caused by having a depressed immune system. We were then handed the schedule of the chemotherapy she would be getting over the next 28 days. The three days following clinic she received Ara-C at home. Each night for two weeks she takes one oral chemo drug called 6MP. This coming weekend she will again get Ara-C for four days straight. On Friday when she goes in for a checkup, she will also have a lumbar puncture with chemo injected into her spinal fluid. After two weeks, Ashtyn will then only have chemo on Fridays at clinic. She will get a chemotherapy called PEG on the 3rd Friday and Vincristine on the 3rd and 4th Friday. On May 24th she’ll get a bone marrow aspirate to confirm the cancer is still gone and progress towards the bone marrow transplant. The research that has been done to come up with cancer regimens is astonishing.
Ashtyn is looking amazing, is super funny, and has a brain and heart full of energy and spunk. She is always talking with excitement about things she wants to do and places she wants to go. “I want to go to Lagoon.” “Let’s go to the Zoo and see the monkeys.” “A hike would be cool.” “We need to go to Hawaii.” “I am excited to have my huge cancer free party with a bounce house, guacamole, and snow cones.” “Later I need to get my scuba certification and go to Bonaire.” “I would like to go to Disneyland for a day and go to the Hollywood Walk of Fame and see Hugh Jackman’s star.” “I would like to go to St. George with you this weekend.” “After I am done with cancer we should have a huge, gigantic shopping spree for clothes, accessories, and awesome stuff.” Several nights ago as I was driving her to a friend’s house she said, “Mom! Let’s just blow this joint and drive to Las Vegas right now! We aren’t getting any younger, and you’re getting up there. We could go to the Coca-Cola store and drink the tray of different Cokes and go to a show!!!” She has such great ideas and enthusiasm, but “my brain wants to do stuff but my body doesn’t.”
On Sunday she walked to church which is five houses away. She listened to Chandler give a talk, stayed for a total of 30 minutes, and was ready to go home. On the way home she needed to rest a few times to catch her breath. Ashtyn stays in my bed most of the day. It’s a blessing my bedroom is on the main level of the house, not too far away from all the family action. There’s a lot of sunlight in the room and a door that leads out to the back deck. She can listen to the kids jump on the trampoline and enjoy the beautiful spring weather even from bed. Friday was by far the busiest day she has had so far. After four hours at the hospital in clinic, we went to Bonsai, a Japanese steak house restaurant, which she had been looking forward to. Afterwards she went to a friend’s house until 10:45 p.m. Once home she still had energy to stay up until 1 a.m. The rest of the week she has been relaxing at home. Yesterday at 5 p.m. her Aunt Kristi came over to visit. Ashtyn was in my bed. Kristi asked, “What did you do today?” With her sense of humor intact Ashtyn said, “Well, I moved to the couch and back.” Kristi responded, “Well that was a productive day.” Carol wrote on a facebook comment for Ashtyn, “Just chill – make lists of all the things your brain wants to do & soon enough your body will feel like doing it!”
Each morning I wake up wondering how she is going to feel that day. So far she has continued to do very well. It has been a joy seeing her with health and strength that allows her true personality to shine. Though she is often in bed, she is so animated and fun to be around. Thank you for your continual prayers.