2 weeks ago Freya was at Dr. Wohl's office getting a strange looking bruise checked out. Later that night she was admitted to the Children’s Hospital of Colorado for leukemia diagnosis and treatment.
1) Diagnosis. Freya's diagnosis is AML, which stands for acute myeloid leukemia.
2) Treatment. This form of cancer progresses quickly. The medical team has been working aggressively since Freya was admitted, they ran tests and collected blood and biopsies throughout the first week and inserted a central line in her chest with which to administer the chemotherapy drugs. While they were operating to insert the central line, they also did a lumbar puncture (spinal tap) to collect a sample of spinal fluid to determine that there are no cancer cells in the spinal fluid. (Luckily the spinal fluid analysis results were negative for cancer)
The treatment plan for AML is very intense and aggressive. The overall road map here is as follows:
- Five cycles of treatment. Each cycle consists of the following:
- 10 days of chemotherapy consisting of three powerful chemotherapy drugs, during which her white blood cells will be wiped out (along with her immune system), followed by
- several weeks of recovery, during which she will be closely monitored and treated for any side effects of the chemo drugs
- 5 days of "break" during which she can leave the hospital but only if her blood counts are high enough to demonstrate her immune system being back up.
- Overall this will be about 6 months, all in the hospital except for those 5-day breaks. Cami believes (and the rest of us agree) that the risks are too high to try to go back home to Sheridan during these breaks so she will be getting an apartment near the hospital in Denver.
3) How is Freya doing? Pardon my French but Freya is a total badass. It's been a roller coaster for sure, and she is now trying to get used to the new hardware in her chest, (and feeding tube in her nose) plus taking the meds without vomiting has been a challenge. There have been a few moments of elevated temperature and she is dealing with lingering pain from the spinal tap and the general malaise of having her blood counts out of whack. She has had one transfusion of blood. She has been sleeping a lot since Friday. When I left her and Cami mid-day Sunday she was starting to perk up a little. I think it will be real touch and go until she gets into some sort of routine. As of this evening (9/30) latest update from Cami is that her appetite was back up and she was going to get her some mac n cheese. That was good news after the rough weekend! There are good counseling and social work resources at the hospital that will help. And speaking of Freya, Cami is a total badass too.
4) What now? Well, Cami, being the total badass mama that she is, is resolute in her commitment to stay by Freya's side until this awful awful thing is gone. That means staying either with her in the hospital or in an apartment nearby. She will need to either quit her job or take some sort of leave of absence. John and Judy (Granddad and Momo) will take Oswin and Alaric back to Sheridan with them and they will split time between Cami's house and John and Judy's house most likely.
- Practical advice: for those of you on this list who have fought this beast up close and personal in the past, we would love "in the trenches" sorts of advice.
We can't thank you enough for your support and we have immense gratitude for this amazing family and community of ours. The funds will be used toward her care.