I knew nothing about cancer before Ashtyn’s diagnosis. I mean nothing. After two months I am no where near an expert on leukemia. The only things I know are from whatI’veseen and learned from staff around me. I don’t research or read books, web pages, articles, or literature of any kind about cancer. I don’t want to. I choose not to. Ashtyn is unique and she will go through cancer how God intends, not how statistics have shown. So I learn as I go. With that said, I will inform you the best I can as to what makes Ashtyn unique and what she is facing.
There are two main types of leukemia in children, the common acute lymphoblastic leukemia (A.L.L.) and the more rare acute myeloid leukemia (A.M.L.). It is well known that Ashtyn does not have A.L.L or A.M.L. Her cancer cells are unique and their appearance has baffled oncologists across the world. Her diagnosis is “undifferentiated leukemia.”
My very limited understanding of A.L.L is that the patient receives chemotherapy at home, as long as they don’t have a fever. At the end of each month a bone marrow aspirate is done to determine if the individual has gone into remission (no signs or symptoms of leukemia). Once in remission they are put on “maintenance” chemotherapy for a long time to prevent any remaining leukemia cells from growing. There are more details in the middle relating to treatment, side effects, blood counts, etc, but that’s a summary.
My limited understanding of A.M.L treatment is the patient stays in the hospital for 10 days during intense chemo and 20 days recovering. After 30 days the individual goes home for a few weeks preparing for another 30 days of treatment. If remission occurs, four rounds are done and the patient is then cancer free. If the A.M.L seems high risk then a bone marrow transplant is done once in remission, decreasing the likelihood of the cancer coming back.
Ashtyn’s first round of chemo in February was based on the chemo protocol for A.M.L.. After the A.M.L round, Ashtyn went home. However four days later it was discovered that the chemotherapy used had not been effective on Ashtyn’s cancer. They immediately had her come back to the hospital to start A.L.L treatment with a few intensifications. Why was Ashtyn not allowed to go home during A.L.L treatment when typically patients are allowed to? The doctors felt Ashtyn was at high risk of getting extremely sick quickly and would need to be in the hospital so staff could respond immediately. That proved to be true on March 22nd. After two weeks of A.L.L chemotherapy drugs, a bone marrow aspirate was done on Friday to determine how her cells responded. The results come back today. If the treatment seemed to kill many of her cancer cells, Ashtyn will stay in the hospital to continue the course for a few more weeks. If the treatment did not work I asked the doctor if Ashtyn can go home for Easter before they start another round using new chemotherapy drugs on Monday. The doctor was very hesitant about letting her go home. The concern is not that she will get sick from being outside the hospital. The fear is that she will suddenly get sick and need hospital staff to treat her immediately. I understand completely. However I also understand her emotional need to go home and get a break from the hospital. Ashtyn will never be able to go home for a long period of time during her cancer course. I need to take the rare opportunities that arise and get her home for a few days from time to time. The doctors recognized if she starts a new course Monday, it would be another month before there would be a window for her to go home. The agreement was that if on Saturday morning it is determined that the A.L.L chemotherapy did not work, Ashtyn could go home Saturday and return Monday morning.
Of course the prayer is that Ashtyn’s cells have responded to the chemo requiring her to stay in the hospital. If the chemo did not work, we will be grateful for the chance she gets to go home and have full faith and hope that the next round will contain the chemotherapy drugs that her cells will respond to. The ultimate goal is to discover what chemotherapy drugs work, get her into remission, and do a bone marrow transplant which will decrease the likelihood of the cancer coming back. She must be in remission to increase the chances of a successful transplant.
Cancer is an awful disease. However there is so much good surrounding cancer. There is a spirit that is partnered with cancer that is unlike anything I have ever experienced. The tender hearts and concern, the care and compassion, the thoughts and service, and the loving emotions attached to cancer is astonishing. Last week Ashtyn opened a box donated by strangers in L.A. California who started “Ashtyn’s Army in LA” onFacebook The box was full of items to bring sunshine to her day. Yesterday she opened a box containing a bald American Girl Doll and accessories donated by a group of more loving strangers. Today a girl from her youth group brought up a basket full of BYU items donated by both neighbors and strangers. In addition to strangers pulling together, friends from years past have shown incredible care and generosity.
More proof of the good surrounding cancer: Ashtyn got a visit today in the hospital from Landon Cooper and two men from his team. Landon founded miles2give.org. He is running 3,000 miles, through a 150-day endurance feat, that will raise over $100,000 for Sarcoma Cancer research. He started in Ocean Beach, California on February 14th and is running across the country to Washington DC by July 4th. The moment they walked into Ashtyn’s room hugs were exchanged as if we were close friends. We had never met, however we share the bond of cancer. They interacted with Ashtyn as if they knew and loved her as family. The positive spirit brought by these men was quite uplifting. They have dedicated their lives to raising money for cancer research, inspiring others, and uplifting those who are affected. As they left Landon said, “She is the hero.”