Saturday 3 March 2012

Relapse


Honestly, I don't know where to begin. This month has been the worst month of my life and I thought I would never say that again and sadly, I am sure I will know worse days to come in the near future. As you already are aware, Amelia's Leukemia is back. Not only is it back but it was able to take over her bone marrow while she was still on active treatment. She had 80% blast! This is what we would expect to see from a newly diagnosis, not someone who was still getting chemotherapy. I knew something was seriously wrong when I called the oncology clinic to talk to one of the nurses and the receptionist said, "Well, aren't you coming in today to get some blood work done?" I told her, "NO, why would be be coming in, we just finished"! She put me on hold at this point and I already knew why we were on the schedule. Dr. Verma picked up the phone and began to inform me that Amelia had relapsed and that because it occurred before actually going off treatment we have no choice but to do a bone marrow transplant. She talked a lot, but I don't remember anything else. I called Brady and we took Millie in to get some blood work done and to discuss what was to happen next with our two main doctors, Dr. Barnette and Dr. Verma.

At the end of our talk Brady and I asked if we could bring Millie home so we could all be together as a family one last time before we started this fight. Brady set up the tent and we had a camp out. In the morning Millie requested McDonald's so off we went. Maybe it wasn't the best option, but her counts were good and we knew she wasn't going to be able to be out and about for a very long time. The kids were so cute and both Brady and I just stared at them in awe. Man we love our kids.

This past month as been completely overwhelming in so many ways. Of course Millie's treatments, that doesn't even have to be said. She is on stronger chemos and has been stuck there since February 7. It's the love that we have been shown that has brought me to my knees. I know that Millie is an inspiration and I know she has been chosen for this fight because she has brought more people together then I even know about. There is something about those twinkling eyes of hers that touch people's hearts. I have to see the good that has surround us or I would get lost and there is so much good to hold onto.

The number one question I get from everyone right now is, Have they found a match? The answer is sort-of. When we met with the bone marrow team to go over what we should expect over the next 6 months they mentioned that they thought Amelia would have hundreds of possible donors. She doesn't. We do however have around 7 unrelated POSSIBLE donors and 4 cord blood donors. I say possible because these matches have come from the bone marrow registry and they are 6 out of 10 matches. Amelia needs a 10 out of 10. When you swab your check and send it in they can only test 6 markers and there are a handful of people in this world that are a 6/6 for Millie. When our insurance approves the doctors to look further into these possible donors we will know more with what we are dealing with. We have been told that normally insurance will approve them looking into about 4 total. At that point they will try to contact the possible matches and have them do a blood test to see if they are a 10/10. If there are none I'm sure the insurance will pay for more tests, but if not, then Brady and I will pay for the other donors to be tested. If there are no 10/10 matches at that point then I don't know what happens. I guess we will have a sit down and talk options; is it safe to wait and hope to find a match, or do we go ahead without a perfect match? I pray we won't have to answer those questions.

We are all doing the best we can, but I am not going to say it's been easy. It hasn't. Some days I am numb and go on like we are there for yet another fever, not because my baby is fighting for her life. Other days I can't get a grip and I cry over everything. Those are the days that Amelia is depressed. Those are hard days. I seem to be the one that takes most the blame. I'm her mom, and I shouldn't have let this happen. Some days she screams at me how much she hates me and that I'm a horrible mother, and a liar. These days are hard. Then there are times when she has her same old giggle. Man she has a good giggle. With her smile come the days where I know she will be alright, that we all will be alright.

Wonderful Brady, there are no words for my husband. No words. He is the world and he makes everything better, for everyone. I love him.

I'm rambling like always and I'm not even sure any of this post made sense, but I wanted to get it down. Can I just say thank you to all of you. Really, all of you. If you are reading this blog, I know you have said a prayer for Millie, cooked me a meal, brought treats, given me a hug, written to let me know you're there, let me laugh with you, got me a cleaning lady, surprised Millie with an iPad, made it so I wouldn't have to worry about cooking for a very long time, taken Austin, sat with Millie, sent her an email, thought about us, taken out my garbage cans, shoveled my driveway, sat with me through the night, or understood that when I said I was OK, that I really meant please pray. Please pray.

Our month is pictures:

Day 1: Austin gets tested to be a match and Millie starts treatments.




Being Millie

And so it begins, Vincristine

Mitoxantrone: The Blue Devil. This is a new drug to us.

Can you believe she was given an iPad by an anonymous person. It has truly saved her from being locked in a single room for 28 days and counting. THANK YOU!

Opening all her Valentines.


Bring on the transfusions: blood

Playin' around with her little bro.




There's my girl.


Cancer Cuties come visit all the time! This is Daphne.


Being Silly Millie


Brady's friend Jesse came to sing to Millie. It was a good day. She played with one of her best buds Cami and then got serenaded all night. Brady said it was the most at peace he had seen her since we arrived at the hospital. She said it made her feel calm all over.

Suddenly the chemo takes over and my little girl becomes someone I don't recognize. The hair is going, her attitude is changing, her skin is grey, and she starts to loss her giggle. That's the hardest part. That giggle comes long and far between.

Within 24 hours
More transfusions: Platelets this time.

And suddenly she is a cancer patient. It happened so quickly I almost didn't see it coming. We started this with a seemingly healthy, happy little girl. We know Millie is still in there and no matter what cancer takes away it can't take everything, It is limited.

Cancer Is So Limited
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot shut out memories.
It cannot silence courage.
It cannot invade the soul.
It cannot steal eternal life.
It cannot conquer the spirit.
Cancer is so limited.

Amelia has always been so willing to do what she needs to do to fight cancer, but this time around she is struggling more than she has in the past. She is older, she understands more, and she knows this isn't fair. I do however know that your prayers are helping. Some times I think they are the only thing keeping any of us going. Thank you for them. Thank you.

More pics from Millie's "Last Day"

Happy to Be Here


Yes, she wakes up and her hair just looks like that. Well, it's gone now, but it did. :)


One of Millie's favorite games to play while waiting for the docs.






Love this girl.



Love them both.






Pam (checks Millie in ever month), Rachele (Child Life), Millie's Nurse







Rock Star



Dr. Verma with Millie (Mill was suppose to be her 1st ever kiddo to finish treatment for A.L.L.)



Ringing the bell to announce to everyone that she is finished! This picture is almost more then I can bare.