It takes time…


Waiting for Ryleigh’s white blood cells and neutrophils start showing in her blood counts is really like watching a pot boil. We know it will happen – it just seems to be taking so long. To help see what is happening each day we chart on her big calendar.

Keeping track of Ryleigh's Counts
Keeping track of Ryleigh’s Counts

Her hemoglobin has stayed at mid 80’s for three days now so no need for another transfusion of red blood cells. Her platelets are dropping but that is okay. Still 0 for white blood cells and neutrophils – once we see some sort of count then we know that her bone marrow is starting to use her stem cells to generate again.
I have to say I am a bit antsy to get those counts up. I am getting a bit run down as I am not getting much sleep and am taking care of two teens in two different places. Lots of shuttling back and forth and keeping up with all of the responsibilities. Not getting great sleep has been hard on me too. But, I know that it is not going to be forever so I make the best to try and take small breaks, rest when I can, and be as efficient as possible with my limited time.
Ryleigh is on a schedule similar to an infant…makes sense since she is a teenager AND her cells are in infant form waiting to grow and develop. She spends most of her day/night sleeping and when she wakes up she has an incredible appetite. This is without the help of steroids which used to artificially make her hungry. She basically eats two meals a day. One being a brunch and the other supper. Lately she is eating pancakes and omelette for brunch. Pyrogies, pasta, or meatballs/mashed potatoes for supper. Because she has no immune system at the moment – her body is allowing her to eat without pain or other consequences. Her immune system is not attacking her digestive system. It is a change for all of us to see her eat like a typical kid.
Ryleigh has been so tired that she has not wanted to visit or socialize even with Chloe. A couple of nights ago a transformer blew in the neighborhood of the apartment. Chloe called me and wanted me to pick her up as she said she was scared — in fact she was fine but she was concerned that she could not charge her phone! So, I went to pick her up and she came for a surprise visit. It was exactly what the two of them needed. Ryleigh was so happy to spend time with her sister. We were all glad to hang out together. It was fun to be silly, laugh, and have the girls make fun of me! Just like old times!

Mom, you cannot take her home! She is staying here FOREVER!!! I am not letting go!
Mom, you cannot take her home! She is staying here FOREVER!!! I am not letting her go!

3 thoughts on “It takes time…

  1. You are doing something few have the ability to go through, you are all really in a league of your own. I am amazed by all of your resiliency…total perspective.
    Love you!

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