Haven's usual Oncologist, Dr. Paz-Priel, came in to see her today. I had a feeling he might show up and then I told Kris that I thought I saw him in the hallway.
He came in to talk to us about the Hepatitis B and what we would do if it came back positive. We passed back and forth a few jokes about how he just likes to make sure we're worried enough. He said a few more grey hairs wouldn't hurt! :)
He looked Haven over and checked her breathing. Everything looks great. He told us that the lab is not usually open to run these tests on a Saturday - which we were worried about. But they were able to call in a favor and the lab person came in to make sure we knew asap.
About 45 minutes later he came back in to the room with our Inpatient Oncologist, Dr. Farah, and said ALL TESTS ARE NEGATIVE!!!! Yeah! So we are good to go with Hi CY.
Haven should begin Hi CY within the next 2 - 3 hours. Our other Oncologist, Dr. Chen, will be checking in on her tomorrow. Haven will be required to go potty exactly every 2 hours after the initial receipt of the Hi CY. Even at night - the nurse will come in to wake her up every 2 hours to make her go to the bathroom. We can not leave the Hi CY in her bladded any longer than that or we will have major complications.
Also with the Hi Cy we are required to put this paper in to her diaper to check the amount in the urine.
We are extremely excited she does not have Hepatitis B. I'm really nervous now about the future blood transfusions she will have while on this treatment. But I really have no choice - I can't deny the transfusions.
Haven is finally sleeping. She did not sleep at all last night. She had the fevers off and on and was just very anxious to not be in her bed. So I am very happy she is finally out of it.
Learning sustainability for our family and taking care of kids. Becoming a chicken mom in 2020! Our oldest- Haven, 17, was diagnosed with Neuroblastoma Cancer and ROHHAD Syndrome at age 3. We continue to battle these today.
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ROHHAD in Ireland
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So thankful blood tests came back negative!! Wishing you strength through the next part of her treatment. She is such a beautiful child and hopefully she won't be as sick as they told you.
ReplyDeleteI am so glad there is no Hep B. I am praying things go as well as to be expected. Keep fighting Haven! You are a warrior!
ReplyDeleteI am SO GAD to hear she does not have Hepatits B. Thank God!!!
ReplyDeleteMy thoughts are with you all as you begin this new chapter (hopefully named CURE)
Vanessa
glad to her tests came back negative....
ReplyDeletepraying for your little girl...