Finally, after almost two weeks, we have a diagnosis. Abby officially has Sclerosing Rhabdomyosarcoma. This is a very rare variant of Rhabdo and was only identified ten years ago. There are very few cases that have ever been identified. The good news is that we started the correct chemo for rhabdo, so we got a jump start on things by starting before we got the official pathology report.
Abby was able to be extubated today. She did not like the sedation and enjoyed scaring the nurses. At one point, she got up on all fours when they turned their back. Another time, she sat almost straight up in bed. These were both with the ventilator in and when she was supposed to be completely sedated. She is eating - popsicle, ice cream, macaroni, banana, and applesauce.
In other big news, Abby has started talking a little! After two weeks of nothing, this is great. She told me "I want more eat." She also told me "Hold you.", which she always says when she wants up. I missed her saying banana, milk, water, and medicine. I hope we only see improvements from here on out.
On the run
10 years ago
10 comments:
Yay for a diagnosis. That is great. I am glad that she has started to talk some. WE are praying very HARD for you guys! and if you need anything at all let us know i am in little rock all the time!
This is start! The right diagnosis,the right medications,Abby sounds as if she is more alert and wants to eat. We will continue our prayers for all of you!
Sounds like a good day! You finally get a diagnosis! Wonderful that Abby is talking and eating. We keep praying for more and more good news!!
Great update! Still praying...
So glad we have a diagnosis. So glad she is talking and wanting to eat. Tell her to be good to the nurses. :-) I looked up her diagnosis - wow! she is one rare cookie!! Please know she is always in our thoughts and prayers as are you and Leonard. Mother Teresa hear our prayers!
Now we know why getting a diagnosis was taking so long. I looked at some articles and saw one was authored by practitioners at the Arkansas Children's Hospital - reassuring to see. Happy she is enjoying eating and is talking! Maybe she could use a squirt gun for those nurses. You remain in my thoughts and prayers.
YAY!!! Glad to hear she is eating better AND talking!! Wonderful news and im looking forward to more good news daily. We know that GOD is in control! Still praying!
I am so glad you have found out the diagnosis and that the treatments she has been taking are the ones she needs.I know you both were so happy to hear her voice. She is a very strong little girl and I know that she will pull through this. If I can every do anything for you just let me know. Keeping you always in my prayers. Stephanie
Glad to hear you all finally have a diagnosis. Holding all of you close to my heart and sending lots of love and ((hugs))! Good reports from today on, okay? :o)
Thank GOD you are on the right track......no matter how difficult the journey will be, you are covered with prayer!!!!!
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