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.
Tuesday, August 12, 2008
Long time no post!!!!
Well it's been a few weeks, as my aunt has reminded me! But Haven has been sick off and on since having chemo a couple of weeks ago. For some reason this one hit her bad that even after 2 weeks she has still been throwing up or very exhausted. So far it's been 5 days of no sickness.
She has 3 toes that are infected. So Kris has been cleaning her toes every morning and night with peroxide and trying to get the infection out. She was on Amoxicillin for 10 days but the toes are still swollen. I have to contact the doctor tomorrow. Kris bought her one of those foot baths so we used that tonight. It really relaxed her.
We're still taking the medicine for the bone thrush in her mouth - trying to keep that from traveling down her throat. It can turn in to a yeast infection which is bad stuff. Now that she has had no immune system for a few months we can tell with how easy she can get infections.
Some very very good news finally - her last MRI showed the tumor on her spine has shrunk by .2 mm. I know it's not much but it hasn't grown!!! So we can celebrate a little.
The mass on her back is muscle. Just growing funky from steroids and the doctors are still unsure how that happened. Her back hurts her quite a bit so we keep her surrounded with pillows at night and she sleeps with her dad every night.
If she's not sick then I probably have a headache. Last week was horrible. I had a headache for 5 days straight. The medicine I was prescribed is no longer on the market and so far I'm unable to get anything prescribed. So I have been living on Percocet almost every night and I sleep on the couch. Since sleeping on the couch for the past 5 days I have had no headaches. I know it's weird...but so am I. My mom gave me a contoured pillow for my neck and it seems to be working.
This last weekend we mowed the grass and pulled weeds. Haven helps by watering the flowers and telling me where I didn't mow yet. Being sick for so long I realized on Friday that I hadn't mowed the grass in over 6 weeks and the gardens hadn't even been touched! It looked like a jungle out there. Before the headaches I was religious about cutting the grass and watering flowers. So I yanked everything out...no flowers left and the grass is cut.
While pulling weeds Haven and I found a cute little Praying Mantis.
Then one of the days she got in to my purse and thought it was chapstick. I let her put it on and it was over an hour before she realized it wasn't chapstick. Kris and I had a hard time trying not to laugh!!
Haven and Elsie. She picked out a yellow Care Bear for Elsie. Yes she had to wear her bunny ears.
Then this past Saturday Haven and I were invited to Elsie's birthday party. She turned one. Her mom is one of my friends at work. We went an hour early so she wouldn't be crowded around all the kids and people. Haven had a great time and didn't want to leave. But people were starting to arrive and I wanted to get her home.
Thursday evening we will be heading to Virginia to see Grandma and Grandpa for the weekend. Haven has big plans of tea parties and baking muffins and cakes. I'm sure she will have a blast. I'm looking forward to a short break from reality!
My brother is coming home sometime in September. Not sure how long but it will be good to see him before he's sent back to Iraq. My mom heads to Korea on September 1st for 3 months. My dad has plans of me painting his house and fixing it up. Lucky me. Haven and I will pretty much be living there those 3 months I'm sure.
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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...
Havey; you tell G-Pa Honey that he can come to Ohio and paint my house. It needs it inside; that way your Mom can rest. Tell your uncle Tommy when he comes home that G-Grandma misses him very much and knows she will not be able to see him so give him a kiss for her. The picture of the flower was pretty.
ReplyDeleteAunt Candy
Haven; ask your mommy if G-Pa honey has given mommy the back ground information of her real Mom. Linda. Mommy might be able to find out something about her medical background. G-Pa Honey has a lot of papers; even info of her being in the Army. She also had cancer.
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