I know...I'm sorry I've been slacked on this but it's not like I'm slacking in the Dr. Mom area!!! We are finally done with the medicine for the toes. As for the infection - it is finally cleared up! As of September 8 we will be 5 months into her chemo treatments and a year of steroids!!! I really hope by March we will be able to remove the port but I hear it will be at least 6 months after that before they will let us do that - just in case.
Haven is doing pretty well now. We have not been sick for a few days and the potty stuff is getting much better. She always has a week after that's pretty bad. Also with chemo everything seems to dry out. Her hair is so brittle and dry - I don't even wash out the conditioner anymore. I would love to see it get greasy!!! It just stays so dry. Her nails are very dry and brittle as well. As if the toe infection wasn't bad enough - her big toe on the hot foot is now split!! We get rid of the infection and the toe nail has split about 3/4 of the way down. She was bandaged up pretty well tonight.
I will be updating the site more. I have a few pictures and video to put on here. My brother comes home on Tuesday from Iraq for 12 days. Next weekend, as long as Haven feels well, my dad and I are going to take her, Tommy, Katie, and Stryder to Gettysburg for the day. My dad says Tommy wants to go but I think he wants to go! Should be a lot of fun. I'm really excited about my bro coming in. Also trying to figure out a way to get my cousin Erin over here for a few days.
Enough rambling....here is my princess:
This was Labor Day dinner at Grandpa B Honey's. I took her shopping to get a new dress for the holiday. She has been so into dresses lately. She had to have this because it's Haven Pink. She just wanted to get dressed up to hang out with Grandpa. Grandma wasn't there - she left for Korea early in the morning!!
OH...and then Thursday evening she received this beautiful gown (dress if you're talking to Haven) from Sister Terry Jones in Utah. She sent Haven a huge panda bear stuffed animal too. She has been sleeping with it since. I could barely get this off her to wash it - I had to buy her two more gowns at Walmart today so I could get her out of this one. She loves that it has Haven pink. Everything has to have Haven pink.
Haven has asked and asked for months now if she could have purple hair. I have had the spray to do it for a while but was worried with the chemo and never wanted to do it. But now I just want her to have as much fun as she can. So I sprayed her hair on Saturday. That night we took Gpa B Honey to Cracker Barrel. He was shocked to see her hair. While eating dinner she whispers to me (she sat next to Gpa). "Mom, I talked to a boy and he didn't say anything about my hair". She was really upset about this. So I tried to tell her how boys don't usually notice hair...just not a high priority. She was not happy. So we started giving people hints about her hair color and they started asking her about it. She had the biggest smile on her face!
While at Cracker Barrel Haven of course found lots she just had to have at the store. Uuuugggg....what do I do? :) Well, I bought her some snow (which she is making here) and Gpa bought her a rock growing garden. See the tank in the back. It was a beautiful day after the hurricane made it's way through so we just hung outside all day long. Now I have cups of snow and growing crystal rocks!!
Well....Kris rented Boom Blox for Haven and she has played it more than any other game out there. Not to mention she gets me addicted to it. Thought I'd put a little bit of video of her up here.
Last but never least: THANK YOU to everyone sending Haven stuff - STILL!!!!
Miss Dawn and the girls from Riverside Johns Hopkins have NEVER missed a week EVER this whole time. It's just amazing. They send her a package every week with a card. It's been 5 months...I'm just amazed.
Shirley Anderson sends Haven a package about every month....she's never met my angel.
Gpa and Gma in Utah have been paying for Lauren to be with Haven two days a week. Haven absolutely loves her. However, Haven was told by her dad that Lauren could only come one a day a week now because it costs a lot of money. The first time ever, Haven freaked out and started crying and was really really upset. She loves Lauren more than anything. After discussing, I told Kris we have to keep her two days a week and we have to figure out how. So we're going to try to lower expenses elsewhere to keep Haven seeing her friend 2 days a week.
Gma and Gpa Virginia have been sending Haven $100 gift cards to Walmart every month. This is awesome because I stock up on her diapers and her special requested cleaning supplies.
Aberdeen Bible Church has brought her many gifts and last week they brought her a huge bag with diapers, hand sanitizer, cleaning stuff, stickers, Walmart card (she got Aristocats movie), a check from a member of the church and cash. THANK YOU!!
Haven is working on handmade thank you cards. Lauren and her work on them together during the day.
I really want to thank everyone for thinking of my beautiful girl!!!!!
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.
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Haven; do you know that you have a G-Gma in Ohio; I think she has been sending you some clothes and books but I cannot tell her if you reveived them. I cannot tell her if clothes fit or what size to buy. I like your pictures and happy you are feeling better; G-Gma is not feeling well at all and concerned about being alone this winter send her a card. I hope you have fun with Uncle Tommy in Gettysburg not sure why cousin Erin should be there we need her here and her school needs her.Candy
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