We hope everyone is well at home and not sick . At the hospital there are signs everywhere, and on site handwashing systems on the floors. Its a big problem here. Emily and I try not to breath until we reach the 4th floor. She has had a long day. We arrived at the hospital around 8:45am and had blood work done. We had to wait on the results of the blood counts. Trish, her teacher, stopped by and Emily had school in a conference room, while we waited on the blood counts. Emily did not have her chemo treatment today, Drs decided she is having to many problems with her legs and feet. She has pain when flexing her feet back , and is having a hard time standing, and very limited walking at this time. The Vincristine chemo can cause this, and some patients have to stop having Vincristine after their 2nd cycle of chemo. The longterm problems can be a bigger problem than not receiving the chemo. It can cause pain, and tingling of feet and legs and alot of times can be permanent. Last Thursday I spoke my concern, again, about the limited use of her legs and feet. I also said my concern in the hospital. Emily has been so long without walking movement, because she has been limited with sickness and in the hospital bed, with hookups. All the leg movement she has had were the 3 days of riding the trike in the hospital, which is not a weighted exercise like walking. Its hard to say if its the muscle weakness alone, or combination of the Vincristine. The Drs. are saying it is mostly due to the vincristine. Last Thursday in clinic I was told a physical therapist would be contacting us today, Monday, but I never heard from the Home Health Therapist. Drs. want an evaluation and treatment done with a physical therapist before they would consider Vincristine again. I will do some phone calls tomorrow. Next, Emily had to have a blood transfusion, Hemoglobin 5.2, and also needed platelets, She has to be premedicated with 2 meds before anything is given, then platelets done, then when that is finished, blood can be given slowly. We left at 5:40pm. She has been doing good today even though her counts were low. Her counts will be low for another week and hopefully will start slowly increasing.
Love, Emily and Dawn
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