Today was day 1 of 3 straight days of chemo. Kris is taking 2 days by himself so we can start splitting the shifts. He will be taking her again tomorrow and I will be there Thursday.
She did well today. She even did her port without the numbing lotion. The nurse said she wants to video tape Haven so they can show it to the other kids so they can see how it's ok to have your port accessed.
She will keep it accessed all week so they don't have to keep poking the needle in. She's lost another pound - so we are down to 58 now. The doctors can't believe she is losing weight. Most children on steroids gain about 20 lbs (says doctor) but Kris is extremely strict on watching everything she eats and everything he and I buy. We do have to get her up to walk more. Her medicine drains her of energy and she refuses to walk.
Kris met with all 3 of her doctors today. I got the updates via text.
They are not worried about the 2 days of sickness last week as long as it's not a constant everyday thing. The spot on her back is still there but it is the same size. They are still not concerned about it. He spoke with Dr. Paz about her tumor and pretty much got what I got last week. We were told it was completely removed and nothing showed on the MRI right after surgery but it's slow growing. As long as it doesn't start growing fast we're going to leave it alone while we're doing the chemo over the next year. We still have a very hot foot and a very cold foot and lots of attitude.
She's doing fine tonight (well she's talking a lot in her sleep but that's normal). She was very exhausted when I got home at 6pm. She went to bed around 8pm. The doctors are amazed with Haven. She's fighting this pretty strong and considering how much medication they put in her they are surprised that she's not sicker.
We still have the eye issue. I spoke to the doctors last week. They will not move forward with fixing that until the chemo is over. Most likely they will do surgery on the eye and tighten the muscles (so says the doctor). She still has 20/20 in both eyes which again they were amazed with.
Tomorrow she will be out the door by 7am and in chemo by 9am.
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Misty; thank you for the update. Haven has your genes forsure you would never let anything stop you or bother you; you were always a fighter. BOY DO I REMEMBER THAT:)
ReplyDeleteTell Haven G-Grandma loves her and I do to. I go to bed thinking about her and get up thinking about her.
she is a MIRACLE! You and Kris take care. Candy