It is difficult trying to get a routine back in our day. Each day has been different and unpredictable. Jorja is on summer vacation and there is no school schedule to base things around. One thing is for sure, we have a constant new lingo or vocabulary we use in our home. Here are some of our new words: Neuroblastoma, neuroblast, Heparin, 10 units, hematocrit, CBC, hemoglobin, neulasta, absolute neutrophil count (ANC), platelets, oncology, carboplatin, etoposide, cyclophosphamide, doxorubicin, cancer kid, and mid-line.
So far, putting the meds in Raylee's juice is working. You have to coax her to drink it all, but I would rather have this struggle then the fight she puts up to take meds. Now when Raylee is asked if she needs medicine or is hurting, (she always says no because she knows if she says yes she has medicine) she has the idea she gets to choose. Not sure if this is the best approach.
We definately had a better day today compared to Monday....thanks for all the positive thoughts and energy, prayers and love from ya' all--we sure love you!
Introducing Raylee and Jorja.....sisters! Raylee is our cancer baby and Jorja is her sister's keeper.
Any approach for medication giving works if you're the parents dealing with a child. Children do have a pretty high pain tolerance. Im sure you know her well enough to tell what she might be feeling. The pictures you've posted show what a cutie she is. She looks like her little mind is going a mile a minute. Love Ken & Terrie
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