This is as weird for me as it is for you, but a few weeks ago I was diagnosed with Acute Myeloid Leukemia. You are probably frantically googling AML right now, so I’ll give you a crash course:
- I have pediatric AML, which is awesome. Outcomes are better and more consistent. This is where you ask for my percent chance of living so I’ll just tell you it’s generally 80%.
- Learn all about pediatric AML here! http://www.cancer.gov/types/leukemia/patient/child-aml-treatment-pdq
- If you got to the end of the last link, you probably realized there are different subtypes of AML. This is where I got a little less lucky. I have a very rare, high-risk subtype of AML called Philadelphia positive AML. This basically means there was a crossover between chromosomes 22 and 9 on literally one stupid bone marrow cell which led to the creation of a new gene which facilitated the creation of tons of blast cells (cancer cells) in my blood. High-risk basically means I need a bone marrow transplant. My siblings were both tested today and we will find out next week if either is a match. If not, we will move on to the registry (I will keep you posted on how to register if we get here!). There is not a lot of literature about Philadelphia positive AML, but here is an article since you are going to look anyway: http://www.sciencedirect.com/science/article/pii/S165838761400079X. Take this with a HUGE grain of salt because it includes adult AML, which has worse outcomes, and patients who were treated without tyrosine kinase inhibitors (which I am on).
- An average course of treatment takes 6-8 months. I’ll probably be somewhat longer because of the pesky bone marrow transplant.
Okay so now that we got that out of the way, I’ll tell you a little about the past few weeks. I was in South Africa! Everything was fine! Except I was super, super tired all of the time and could not catch my breath for some crazy reason. I spent three months in Cape Town and never summited any of Table Mountain’s three peaks. I was confused and embarrassed that I was suddenly so out of shape? Anyway, South Africa was good. I did tons of cool stuff and learned a lot. On the flight back, I had a 102 fever and cold/flu symptoms. I went straight to urgent care when I got back to the states on June 12th. I tested negative for strep and mono and was sent home. The following Thursday, I went back to my doctor, who ran a full blood panel. She found 129,000 white blood cells/mL. For reference, a normal person has 5-10,000. She sent me straight to Oakland Children’s Hospital, where I was officially diagnosed and immediately admitted. I have been a patient (prisoner) here ever since.
It’s been a crazy few weeks. I finished my first round of chemo (chemo really sucks. I guess cancer sucks more) and watched my white blood cell count fall from 129,000 to 800. I’m now in “count recovery,” which means I am stuck here in the hospital (since I have practically no immune system) until my blood cells start growing back (about 3ish weeks). Most likely (if all goes according to plan), I will go through one more round of chemo and count recovery then start prepping for a bone marrow transplant.
Right now, life is really boring! This is the first time I feel super grateful for that. I am in a little lull between rounds of chemo and hoping that I will escape any potential infections and be mostly bored until the next round. I have also developed a paint by numbers addiction, which I feel slightly sad about because even when I finish it’s not like it’s a real accomplishment. I am looking for hobby recommendations and totally ready for my artistic phase (I am hoping it hits me any second).
Anyway, I’m sure some of you have questions, so feel free to contact me. I am sometimes a slow responder lately, but I will get back to you. So far so good, let’s all hope my bone marrow keeps it up.