Well from the last round of chemo Haven was super sick for 2 weeks straight. Throwing up and fevers....severe infections in three of her toes and a very bad bone thrush. This week chemo was no better.
After 3 weeks she still has infections in 3 of her toes. We bought the foot bath, took the Amoxicillin, and cleaned every night with peroxide. Still about every other day she would have green puss coming out from her toe nails. Normally a hangnail wouldn't bother anyone...but someone without an immune system it's a major issue.
Both of her big toes have been swollen beyond belief. I bought her new open toed shoes (which I am not a fan of at all) so they wouldn't squish down on her toes. I bought her some new cute socks but after a day of wearing them she was in so much pain we've gone back to bare feet.
She now has new medicine for the infections and this medicine must really be bad. We have a hard time getting her to keep it down. She almost throws up every time she takes it - and that's 3 times a day. It's a powder we have to mix with applesauce. Well that made her not want to eat applesauce again. So we tried pudding....nope - didn't work. Now she and her dad have come up with a crazy mix for the medicine:
This is a little better...she gets the chills really bad when taking it and the gag reflex kicks in. So I have Crystal Light ready to wash it down and then another snack. There is also a cream we have to put on all 3 toes and then we bandage them up for the night.
The past 2 nights since chemo have been really bad. I know she will wake me up at 2am to potty and then again at 3am soaking wet from breaking a fever. The past 2 nights she has been completely soaked and her hair dripping as if from the shower. I get her changed, change the sheets and pillow and dry her off. Then that can usually get her sleeping until about 5:30am when she wakes me again.
We were able to clear up the blisters with her medicine. That was one good thing that has happened.
She has still not grown any - still only 39 inches - same as last November. But they said she will not grow until we are done with chemo.
Her sleep walking has started up again and I sometimes catch her running through the halls and bedrooms. She has no idea where she is and is just spaced out.
We're doing as best as we can with her and she gets a lot of special treatment....Lauren is here twice a week and that is the biggest treat for her. She absolutely loves her friend coming over and gets all dressed up when she sees her.
I have a few pictures to post tomorrow. Love to all - M
Friday, August 29, 2008
Tuesday, August 12, 2008
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.