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My last post mentioned that I would not be sure of whether I would be strong enough to leave St Louis initially or not. After one extra night I was quite ready to make the journey home. When I count back to June 17 and realize I was in the hospital for 69 days, it genuinely feels like an eternity has passed and that the entire experience was just a bit of a bad dream; or to paraphrase the Monty Python scene where King Arthur fights the Black Knight who is being hacked to bits: "It is only a flesh wound."

http://www.youtube.com/watch?v=2eMkth8FWno

Since my return home I have become a bit stronger each day and my appetite has started to come back. I am also walking outside. Initially, I was only able to walk in circles around our backyard, which is quite small. My mum laughed at the scene and said that it reminded her of the characters walking in the yard on the TV show Hogan's Heroes! I have now graduated to "hill training" in the front of our house where I "hike" up and down our walk to the sidewalk because it is on an incline. I did feel a bit wild and crazy yesterday and taking my life into my hands, walked on the very uneven sidewalk in front of our house down two houses and back without falling!

This past Monday Stephen and I returned to St Louis, slept over and spent all of Tuesday at Barnes. I had labs, a bone marrow aspiration, a dermatology apt (for a rash that started in hospital just a few days before I left), and an apt with my oncologist. I should also mention that over the lunch hour we visited the "makeover" room at Barnes where I discovered an upside of losing my hair is that I can now sport scarves and turbans of various colors and shapes each day.

The results from my blood work showed no change from the week prior. I was disappointed as I was hoping not only for higher blood counts (which would give me more energy) but especially higher white blood cells and neutrophils - those fabulous infection fighting cells, however, I seem to have enough of everything at the moment to keep me out of hospital. The rash was confirmed to be a result of all the drugs I had been on in hospital and as of today has started to resolve.

My oncologist revealed the next step in my treatment - a stem cell transplant. Although the bone marrow aspiration results remain pending, the fact that my leukemia was unresponsive to the first course of chemotherapy necessitates having a transplant as soon as possible to obtain the best possible outcome. My team has identified a stem-cell donor that is a perfect match for me from the National Marrow Donor Program and will submit an application to begin the process as soon as possible so I can hopefully avoid an interim chemotherapy to keep the leukemia at bay.

From what I understand at the moment, the transplant starts off with a very strong chemo to ablate my marrow cells so that the donor cells can take over. This process should take about one month in hospital at Barnes. Following the transplant, I will need to stay in St Louis close to the hospital for an undetermined length of time - perhaps 1-3 months depending on my recovery; so I will need to find a short term rental close to Barnes.

I weathered two chemos over a 69 day stay in the hospital, and these last few days here in Urbana have felt like a pleasant eternity. The thought of returning for a potentially even longer stay in St Louis seems daunting at first, however, it is my best shot at achieving a remission.

Many, many thanks to all of you who have supported me and our family through these last several months. Make no mistake, your love and support have made a tremendous difference to all of us, each and every day. Your continued support will surely make a difference in our lives during this next step of my treatment.

If you are new to this Blog, you can also check out our "Lotsa Helping Hands" site where you can sign up electronically to help our family.

https://lls.lotsahelpinghands.com/c/643312/login/?logout&language=en

Enjoy every moment,
Deborah