Have I made it clear how grateful I am for each one of you for taking the time to read this blog? Have I made it clear how much I appreciate the support you give me and Ashtyn by simply staying updated and informed? We are bonded with a common love and concern for Ashtyn. I would hug each of you as if you were family because I feel we are connected and going through this journey together. Thank you. (If you have any questions that you want answered in the blog, please text me 801-633-4969.)
I got a phone call from Ashtyn’s oncologist. The oncologists and bone marrow transplant doctors came up with a plan they believe will be best for Ashtyn. They want her to do one month of chemo at home with the idea that she will then do a bone marrow transplant the second week of June. If she currently has no evidence of cancer, why does she have to do another month of chemo or even a transplant at all? They are certain that if all treatments were stopped the chances the cancer would come back is 100%. The goal of an additional month of chemo is to kill any undetectable, residual cancer cells that may be present. They want to do all they can to destroy any possible cancer cells which increases the success of a transplant. Since the cancer appears to be gone from the last month of chemo, she is allowed to do the next round of chemo at home. The plan is for her to go to the hospital today, Friday the 26th, to receive IV chemotherapy. After about three hours in the clinic, Ashtyn will go home with a detailed schedule of what chemo she will take each day during the next 28 days. Home Health will be very involved in providing supplies, chemo, and instructions on how it is to be administered. She will have both IV and oral chemo with varying side effects, however nothing will be as intense as when she was in the hospital. Each Friday I will take her to the hospital for a check up. She will also get lumbar punctures with administration of chemo into her spinal fluid. After the 28 days of chemo at home, they will allow her body and white blood cells to recover over two weeks. She will then be admitted into the hospital for close to two months for the bone marrow transplant. For now, unless Ashtyn gets sick, she will be home for a total of eight weeks. She has never been able to do chemo at home. It’s a path we have never experienced. I’m excited to see how it all turns out.
We’ve been told “for it must needs be, that there is an opposition in all things.” Opposition is not a bad thing, it’s awesome! It means you can learn and grow during difficult times and then more fully appreciate and enjoy the easy times. Ashtyn has experienced a lot of opposition. She has cried and laughed. She’s felt pain and comfort. She’s felt sorrow and joy. She’s felt fear and peace. She has missed out on a lot and has had amazing opportunities. She has been away from friends and has met incredible people. When we were alone in a small hospital room, we felt a great amount of support from the outside world. When there was nothing the human hand could do, angels filled her room. In February she didn’t have an appetite and couldn’t eat anything. In March and April she had a great appetite. After spending 2 1/2 months in the hospital, she now gets to spend eight weeks at home. I will never shun opposition. When times are difficult, joy and peace will follow. I’ll take the “bad” opposition to enjoy the “good” opposition any day.
In life and in cancer I have learned to “just go with it.” However you want to describe life, whether “a roller-coaster,” “the long and winding road,” “the journey,” “the climb,”… it’s never a predictable course, and that’s ok. 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. At least it seems that way, doesn’t it? Whenever the unexpected happens, it seems after pushing through, everything works out. So I’ve learned I need to just go with the flow with faith that “things work out, it isn’t as bad as you sometimes think it is. It all works out, don’t worry.”
It seems the entire cancer experience so far has been full of surprises. Nothing expected has happened. Obviously the diagnosis was a shock. The rare form of leukemia was a punch. We had to adjust plans while staying in the hospital for 39 days with many complications. March 10th Ashtyn was able to go home for, what we were told, two weeks. We adapted to the unexpected when we had to return to the hospital after four days. We went with the flow when told her second hospital stay would be a few days which ended up being 27 days. Ashtyn is now home. Originally we were told she would be home for two weeks. Yesterday we found out that as long as she doesn’t get sick, Ashtyn will be able to stay home for eight weeks. We will embrace the change and continue being flexible with whatever surprises may come our way.