Sunday, 30 September 2012

Day 95 or so

This was written last week around day 95, just never got around to posting it and I'm trying to catch up. It reads like Amelia hasn't had her birthday yet, but it was Friday. Today is also her day 100, and all her test results are back. 

At the end of this week I feel a little less pressure on my shoulders. I feel like I can breath. Millie is CANCER FREE and there is so much to celebrate. We are coming up on her 7th birthday, the CureSearch walk, and her 100 day post transplant. Life is not normal by any means, but for us it's starting to feel like it is.
All of Amelia's tests aren't back yet, we are still waiting on her chimerism in her marrow  (translation; how much of her marrow is from the new donor, hopefully 100%). The results of this test will decide how the next few months go. 

I have been asked a lot if Amelia is fine now  that she is cancer free and if she can go to school and stuff. The answer is No. The plan is still the same. What is keeping Amelia home and with that lovely mask on is her medication called Cyclosporin. Is it was keeps her body from fighting off her new marrow. It weakens her immune system. She will continue to take it for about 3 more months and then she needs a few months to recover from it. We are hoping things will be pretty "normal" for her near the end of March.
All these pictures are from September 26, the day Millie's marrow was tested. I felt so alone and scared. Thankfully we ran into a few of our cancer buddies, had one of our favorite nurses (really, they're all awesome), and got to see Dr. Verma. We miss her!  It really helped take the edge off to be surrounded by so many people that I know care about Millie. Thank you also for everyone who fasted along with us to prepare for this day. As you know our prayers were answered and Amelia was declared cancer free. 

Exhale. 

































Monday, 17 September 2012

Sunday, 2 September 2012

September: Help Them Grow Old, Wear GOLD!

It's September and this is a HUGE month for our family. September is the start of Childhood Cancer Awareness Month, GO GOLD, and please tell everyone.  If you are really brave you can even tell strangers, Millie does!  September also brings Miss Millie's 7th birthday. It's on September 28 and we have a lot to celebrate! Want to celebrate with us? Come support Millie and all our Cancer Cutie friends on the 29th at the CureSearch walk in Sugar House Park. It's only $10 for adults, and kids are FREE. CureSearch is Amazing. They donate 100% of money raised at the walk to fund Childhood Cancer Research, 100%!  We Need A Cure and helping raise money for research is the best way to make that happen.  We will also be celebrating Millie reaching her 100 day post transplant mark, which is September 30th.  

P.S. MILLIE WILL BE THERE and we can't wait. 

You can sign up for Team Amelia HERE.



Miss Millie 2009 right before her 1st cancer diagnosis. Her initial treatment was just over 2 years when we found out that Amelia still had cancer 3 days after we had celebrated Kicking Cancer's Butt. 

4 years old

























You have cancer baby.































































Way To Go Millie! You Did It! 
February 2012  
6 years old 
























We found out about Millie's relapse 3 days later. She had around a 96% cure rate and it wasn't good enough, it still came back. It will NEVER be good enough until it's 100% cure rate.

Watch Out Cancer! Super Millie is coming for you, AGAIN! 



























After 3 rounds of intensive chemotherapy treatments and 8 doses of radiation, Millie's body was prepared to have her bone marrow transplant. We couldn't risk waiting any longer. She went into transplant not having a perfect marrow match and also having some leukaemia. We pray every day that her last blasts of chemo and radiation were enough to put her in full remission before starting yet another battle for her life. 

June 22, 2012. Happy BMT Birthday! 















































































Please help us cure childhood cancer! Even after everything Millie has gone through and a transplant she still only has a 60% chance of her cancer not coming back. Please, come walk with us.  You can make a difference.  Sign Up HERE to walk with Team Amelia.

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.




Cupcakes!
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.