We checked into CHLA on Sunday night to start Kennedys immune therapy. Kennedy was excited to see everyone and made herself right at home. Sitting at the nurses station, running up and down the halls, and of course finding the sticker box. We have not been inpatient since April when Kennedy was in BMT but that did not phase her it was like she never left. She received a blood transfusion she was at 9.7 and needs to be at 10 for treatment. Monday was the first day of receiving the immune therapy drug Chimerick and it was a rough day. When the Chimerick is administered it attaches to the nervous system and helps tell her new immune system to fight the nueroblastoma cells. This treatment is very painful and uncomfortable. Its almost as if she has the flu but 100 times worse. She is hooked up to a morphine drip because of the pain and will stay on the drip for the next couple of days. The transfusion runs for 10 hours a day over the next 4 days. She is also getting Benadryl around the clock to help prevent any allergic reaction; rash,hives or coughing from broncular spasms or closed airway. Yesterday was a rough day she spent most of the day crying and very upset and uncomfortable, she was not her normal self and it was hard to watch. She would want to be held but then change her mind and want to sit in her stroller or her bed. The only way I seem to be able to calm her down was walking the halls and pushing her in the stroller. The only problem with that is she had to be hooked to the monitor to watch her heart rate and breathing so she could only be unhooked for a few mins at a time. So we decided to take the monitor with us and attached it to her pole and we walked the halls a lot! We increased her dose of morphine twice to make her as comfortable as possible and it seemed to help. Once the transfusion was over Kennedy did better and was able to relax and sleep and by morning was back to happy and smiling Kennedy. This morning we hit a bump in the road when Kennedys liver enzymes shot through the roof she went from 74 to 690!! So it through the doctors for a loop and had to come up with a new plan. It took a while to figure it out cause its very rare for this to happen. But with much deliberation the oncology team decided to give her a break a and see of her numbers would come down on their own, which they did but not as much as they had hoped. So it was decided to move forward and continue with the transfusion and keep a close eye on her liver. We will have to take everything day by day to see how she does. We started the 2nd transfusion and she is resting comfortably so hopefully we will not have a day like yesterday and she can sleep through it. Its going to be a rough couple of days but I know that the doctors and nurses are keeping a close eye and will do everything possible to keep Kennedy comfortable. IAM KENNEDY HEAR ME ROAR
Posted on: Tue, 22 Jul 2014 22:33:02 +0000
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