Tonight Ryleigh celebrated being back at the apartment. We made a parfait for her…as her mouth has sores in it and she needs gentle foods to eat as her mouth is hurting. We are not sure if the Crohn’s is getting worse or if this is chemo related. Either way, we are enjoying being in a more home like setting!
Ryleigh was discharged today after her very successful stem cell collection. She needed 5 million cells per ml?? and she produced 12.6 million….whoo hoo, that’s my girl. Extra cells will be stored for up to 10 years just in case she needs them again. I think it is absolutely amazing that these are cells that come from here. I learned last night that these cells have protein receptors that allow them to find their way back to the bone marrow to then transform into the cells that are needed after her transplant. I in awe of the science and the innovation that involves this whole process. I am so curious about it all…I feel bad sometimes for her team as I am always asking questions. Ryleigh just wants to get things done and gets tired of me always asking about what is happening.
She has to go back to the hospital tomorrow for some blood work as her hemoglobin is low and they are going to check tomorrow. If needed she will have a blood transfusion to help get things started. We are also going to get some dates and times for the next stage of this process. Ryleigh is going to spend the next 10 days or so resting and having tests and procedures done to get ready for Stage 2.
We got home around 3 and I was very tired. My last night with Ryleigh was a bit challenging as she was trying to sleep with this catheter sticking up from her neck…it was awkward and uncomfortable for her. So I stayed up most of the night helping her with staying comfortable. Worth it…and I just came back and had a sleep when I got home. Chloe was very happy to have us back and I appreciate her positive energy when we return from the hospital.
I also connected with a social worker who is going to help me manage some of the everyday life issues. She was very helpful and helped me deal with some of the problems I have been having with fair pharmacare and the family residence program. She is advocating for me and organizing things…jobs I was more than willing to give away. She is also available to help us through this challenging time….I am so grateful for this service. The tension in my muscles has relaxed a bit thanks to her meeting with me today.
Found this cartoon….thought it connected well with what we are going through!
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