Well I have spent the last 3 days in Calgary and need to let you kind friends and family know about the Jarman's. It has already been said, but it is such a roller coaster. Overall we are making it through not just one day at a time but even hour by hour. Scarlett will be smiling and talking a bit and within an hour she may be crying softly to herself, throwing up or just showing signs of frutration. I can't imagine what her little mind is thinking.
I spent a lot of time with Isabelle, and Daylene has taken her to Brody's kindergarten a few times which she loves and it keeps her busy. I talked Bobbi and Lance into going out 'together' for a few hours Friday afternoon while I stayed with Scarlett and Daylene had Izzy at the zoo.
Chemo - this drug kills cancer cells but does not discern between them and normal cells. The goal is to kill all cells in the first month of treatment. This is phase 1. She will hopefully be in 99% remission in 30 days. But we have a lot of cells so there is still cancer left. This stage is very hard on her. Then they back off, do some testing and lessen the dosage. They say that a 2 1/2 year program should make her 100% free, where the cancer will not return. She has ALL, the most common kind, a good diagnosis.
Summary of Scarlett:
- heavy doses of chemotherapy with various, expected side effects (moodiness, pain, sickness)
- decrease of appetite (the reverse is supposed to happen) We are waiting for the increase.
- feeding tube at night but not in the day as they want her to eat (tube coming out of nose and taped to side of cheek -fun!?!?!)
- not wanting to walk or put weight on her legs -they have done tests and don't feel that anything else is wrong - doctors check her often - they kind of think that she did have pain in her legs, which started the whole thing, and is afraid to try. She feels pretty sick everywhere else so is maybe afraid to try her legs. They are hoping this will come but it will probably be a gradual thing. Hopefully even just watching Isabelle in the playroom will start her off.
- IV to keep her fluids up
- not having any other infections show up in testing
- she is a candidate to be low or medium low risk but they will not know that until after the 30 days of Chemo(phase 1) and then after testing (bone marrow and blood) - so about the end of November they will know her level by how she has responded to the treatment. Those results will tell them what to do next and what the 2nd phase will be and how long it will last. (how much medication, how many visits to the hospital, etc.) The 3rd phase is the lower maintenance level. That is all we know. More details on each phase as time and testing goes on.
To sum it up- when Scarlett is feeling a bit better or distracted, she is cute, funny and sweet as can be. When she is feeling sick, our hearts are breaking. Her good moments are scattered a bit throughout the day but far outnumbered, as of now, by the heartbreaking moments. This first month is a marathon!!
Bobbi and Lance are just immersed in it. Watching and waiting all day and all night. They take little time to think or talk of other things. This is all consuming. They express an overwhelming gratitude for all of the well wishes they get and for the ones they don't even hear about. They know that so many of you really care, pray for and love them. They are trying to take care of Isabelle and to support each other.
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