Perspective is a wonderful thing. The way I relay our story sets the tone for the conversations that are had about our family outside of these walls. Our situation is sad and that simply goes without saying so lets do that…lets not say it. I don’t want the tone at our friends dinner table to be “oh poor little Riley” I want…”can you believe how amazingly strong Riley is?”…not “SO sad she’s going through getting chemo” but “GO Riley, kick chemo’s ass” That is important to me…I want as much postive spin as possible, it’s how I’m getting through it, it’s how I am enjoying the days I have Riley as opposed to being brought down by our surroundings. I have made up little goofy games to go along with the beeping monitors that make Miss Riley grin from ear to ear and have embraced the fact that I have about 100 full time “nannies” in the form of registered nurses and doctors. It ain’t all bad 😉
We are on day 8 of Riley’s chemotherapy conditioning…tomorrow is the final day, rest on Tuesday and transplant Wednesday. Riley made it through the first 2 days of ATG with no reactions which is a bit uncommon (but good), she still has 2 days to go but so far she is managing beautifully. Yesterday she was a bit more restless than usual but after looking at her CBC counts her hemoglobin levels were dropping and that plays a big part in her wariness. They have been drawing so much blood to monitor the chemotherapy levels in her system that it’s made her a bit anemic and so they ordered for another blood transfusion. The next 2 weeks are when she will really begin to feel the effects of the chemo as her cell counts start to drop, they will continue to medicate and keep her as comfortable as possible.
My conditioning started on Friday evening. I’ve now had 4 out of the 8 Neupogen injections and my goodness those things sure do know how to make a girl uncomfortable. G-CSF (Neupogen) is a man made version of a certain natural substance found in the body. It works by stimulating the bone marrow to increase white blood cell production. It is a very strange sensation, a weird pain. Basically…every bone in my body is aching and throbbing, it’s instense. It’s official, my 3 month old is tougher than me. I am able to take Tylenol however it doesn’t help a whole lot. Luckily last night I had the ninja nurse so I was able to get some sleep. Yes, I referred to a nurse as a ninja…he is amazing, I am the lightest sleeper in the world and he manages to glide in and out of the room without making a peep…it’s a true talent. Let me give an an example…he was able to give Riley a blood transfusion last night without EITHER of us waking up…told you…NINJA.
We’re 2 hours in to her chemo for the day and so far she’s been sleeping soundly which is impressive because the first 2 hours they take her vitals every 15 minutes. So far it’s been a lazy Sunday…hoping that continues!
Thank you all for following, for caring and for continuing to provide enormous amounts of support. xoxo
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