Hi to all......I'm extremely tired even though I was asleep by 9:30pm last night.
Haven had a pretty rough day on Friday with chemo. She did not handle it very well and had an even rougher time at home that evening. Haven usually doesn't feel well about 2 days after chemo so it was very odd for her to have such a bad day. Her nurses were concerned as they had never seen her like that either.
I will give a better update tomorrow. We tried to spend a bit of time with my brother today. He just arrived home from 15 months in Iraq. So we have been trying to enjoy the day. Aunt Katie and baby Stryder are visiting as well.
I will give more updates tomorrow and maybe even take a picture or two!
Love to all
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.
Saturday, March 21, 2009
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ROHHAD in Ireland
I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child&...
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Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
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I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child&...
Mist try to get some rest if you can; I know it is hard; if you can no long function what will Haven do. Happy to hear you are seeing your brother. It is just a bad time with all the things going with Haven. How is your Dad? I told him he was working too much.
ReplyDeleteGram is always thinking about Haven; she still has back pain but manages with her pain medication. I am taking her Sunday to hear some blue grass music; she is not fond of that music at least she will be getting out.
The family tree is giving me fits; I still cannot find anything on Gram's grandmother on her father's side. I have been working for three days and nothing; she did not have a maiden last name that I can find. I added some things to your name. Click on your dad's profile when your name come's up to your left click on that; information will come up that I could remember. I also did Dusty now that was very odd to do because of North Carolina.
quick prayer for you and Haven... Lord, give Misty and Haven your peace and allow them to rest in Your care. Enlighten the doctors and nurses who help care for Haven and use them to touch this precious girl and help give her healing that comes directly from you. Thank you for your love and provision... Amen!
ReplyDeleteHi Vanessa
ReplyDeleteThank you so much....as you know - your family is always in our thoughts.
Always -
Misty