Sunday, 19 August 2012

Day 63

Millie is doing wonderfully. She is feeling so much better (she's dancing around the family room right now). She has been making it whole days without stomach pain and she didn't need any transfusions last week. They went down on her IV fluid intake and there is talk of taking her completely off IV if she ups her drinking. If that happens there is no more need for her broviac and it can come out!!!!!

I honestly haven't seen Millie without a tube sticking out of her chest since she was 4, she is almost 7. She will be covered in scars, but tube free and it's going to be a beautiful sight. Now all I have to do is get her just as excited with thoughts of swimming and taking a bath. Those are two good motivators!

Her hair is coming in, so are her eyebrows, and lashes. Her lashes are so dark I have had few people ask me if she's wearing eyeliner. We are all just so use to seeing her hairless I think it will take some getting use to. 

Millie is suppose to get 4 doses of a chemotherapy called, Methotrexate, in her spinal fluid via a spinal tap, but her platelets have not been up high enough for the doctors to feel comfortable doing it. She hasn't had to receive a transfusion, but her platlets are still low at 20. They'd like them to be above 50 to move forward, so I don't know if they are even going to give her the chemo anymore. It's the protocol for bone marrow transplants and helps to prevent CNS relapse. I hate not doing it, but at the same time I am grateful she doesn't have to have any more chemo aka poison running through her spinal fluid. I will know more on Monday when we go back in for her check-up. In the mean time here is a little of what we have been doing the last week or so...

Playing with Jack Attack.

Austin being Austin.

So you know that Cupcake App? Well my kids love it and so their freaking amazing dad brought it to life for them. Brady made 4-dozen cupcakes with Millie and then they mixed different colors of frosting. He also bought a bunch of random candy for them to stick on top. 

Last weekend we hit up the drive-in and saw Ice Age. Austin and Millie both loved the drive-in. I was a little nervous about taking Millie as always, but we took all our own snacks and drinks. We all used the restroom before leaving the house to avoid that nightmare, yuck!  Millie never touch anything but the truck since Brady carried her from her booster seat to the back where we had filled the cab with pillows and blankets. It was awesome. Thanks to Uncle Bry for letting us borrow his truck. Austin was pretty upset we had to give the truck back, he thought that we would keep going every night. 

We also went hiking. It was short and sweet. Brady had to carry Millie up the steep parts, but she was fantastic. Austin ran most the way and jumped off everything while proclaiming he was going to be in the Olympics. My kids are awesome.

Millie has also gotten to play at her Nana's house for the first time, which she was thrilled about and play at the neighbors in their backyard. She is always making some sort of craft to keep her busy and Brady's thinks I should start a blog reviewing crafts for kids since Millie has done so many.  She also started piano back up and is doing great. We decided to have her review the last book she did instead of moving on and she is flying through it. The girl is a natural, and it doesn't hurt that she has the best teacher. What I think is the best news is she has started eating a lot more. Hopefully there will be no more weight loss. Wahoo!

It's been a good week.

Sunday, 12 August 2012

Day 45 (sort of)

I started writing this post around day 45 so that's what I titled it because I didn't update it with the last week and a half events. I will try to do that in the next day or so, no promises. :)  Day 45 was August 1.

Things are pretty good. Millie's stomach pains are not as frequent as it use to be. It's hard to notice the differences day to day, but if I think back to last week I notice a huge improvement in how she is feeling. Millie had clinic on Wednesday (Aug. 1)  and the doctors are happy with her progress, we will go back in tomorrow for another check-up. She did lose a little weight so I have to make sure she is eating more this week or she will have to go back on TPN. It's a battle every meal and she complains about stomach pain the second anything hits her lips. I am starting to wonder if it's more nerves. Eating use to always make her sick, so now my thought is she has that in her head and she's scared. I would be if I were her. I can do most kinds of sick, but stomach pain is the worst and she has been feeling this way for about 2 months. Can you imagine having chronic stomach pain and what goes along with that for 2 months straight?!? No Thank You!  She did make it a whole entire day with out complaining about her tummy on Saturday. It was amazing! I felt like she made a huge jump. She did get a little sick here and there on Sunday, but she is showing improvement and that's all we can hope for.

I have eased up a little and have let her play with the neighbors a couple of times this week. It makes me nervous, but she has been so down. I know she needs to have some sort of normalcy in her life. When we are in the hospital she knows she can't play, but at home she looks out the window and all the kids are out in their swimsuits playing in the water and riding their bikes. I try to distract her from our kitchen window because I don't want her to see them out there and ask me, "Mom can I play?" It makes my heart ache. Today is the last day she takes one of her many medications, Micolphenelate, and I can't wait for her to come off of it (this happened on her day 45). It is one of the anti suppressants so I feel like I can trust her own immune system a little more after it's gone and she has some time to recover from it. She will still be on her main anti suppressant, Cyclosporine, for awhile, but ever pill we come off the better.

We can also see shadows of hair starting to grow and it's dark! Her eyebrows are going to be huge and it is looking like she will take on one of the main side effects from her medication, being extra hairy. We will have to wait and see but I have seen some really hairy kids after transplant and it's everywhere. I talked to her a little about it today, because I want her to be prepared for the day she wakes up with a uni-brow and hair on her cheeks. She took it pretty well I thought. It's seems like such a small thing in comparison to the other possible side effects, but it's the small things that put her over the edge right now and I didn't want it to be a shock. The hair will fade in time if it comes, so it's really not a big deal, but in her 6 year old mind I don't know how it will affect her. Her hair also seems very dark but I don't know if that's the meds or not. Last time when her hair came back it was white it was so blonde and got darker as it grew. This time it's very dark brown. It will be interesting to see if it stays that way. We were told that she may take on the hair color of her donor so it's possible that we will have a very different Millie. She said if it came in a different color then before that she wanted it to be red, not orange, or light red, but dark red like her friend's mom. She has it all planned out. She has also mentioned that she can't wait to dye her hair green with blue stripes....

We have been able to do a little bit more and it's been so nice. We went for a drive up Big Cottonwood Canyon and Little as well.  We don't push it and stay long, but it's relieves a little tension for all of us to get out of the house for a bit. Brady also took Millie to go see Brave finally. She loved it. Seeing a movie is probably not on the top of the list on things we should be doing, but we played it very safe. Amelia wore a mask the whole time unless she was eating popcorn, which we popped at home for her so we knew it was safe. Brady also bleached the seat and armrest the best he could and then covered it with a fitted sheet. He went Sunday afternoon to make sure there were a minimal amount of people there and it worked. I think he said there were 4 others in the whole theater. They also sat on the side, in the back away from the main areas. He said it was so worth it and that she laughed hysterically the entire time. I'm sad I missed it. I love taking her to the movies just so I can hear that laugh.

All in all, I feel like this is all becoming a little easier and every day that is done is a relieve. Today brought a milestone with only having to give meds at 10 am and 10 pm. Goodbye midnight dose! I won't miss you and I hope you never come back! Now if we could get her off her IV fluids at night.

Big Cottonwood Canyon

 Playing on her new swing set