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.

40 comments:

Danalisa said...

XXXXXXXXXOOOOOOOXXXXXXXX prayers.

Chelsie said...

I'm so sorry that these wounds have been reopened. I'm sure it is so much harder. To run this marathon and celebrate completion only to be told you all have to keep running.

Anonymous said...

We sorrow with you, and pray for peace, hope and that you are comforted by the True Comforter.

alysonedmunds said...

Amanda, I know you dont know me, but I grew up next door to brady when we were little in centerville. I've been following your blog for quite a while and have been so touched by your words, your family's positive attitude, and millie's strength and awesome personality. I'm so sorry about the relapse, its not fair! I want to cry for her. Anyway, I'm praying for her and for your family...just wanted you to know. Hang in there. Things have to get better soon...
Alyson edmunds

ashlie said...

You know your not alone, Thinking you you and your little all the time. Whoever made the plan has one, She is in good hands and always will be. Take one day at a time. <3 No power to change the things that are, just the power in how you look at them.

Ashlie.

Anonymous said...

Fasting for Millie today and praying for her everyday.

Emily said...

We continue to keep Millie and you all in our prayers. I'm so sad she has to go through so much. And you all as well. I have no words to express my feelings for what you are going through...please know we think the world of you and will pray and keep praying for Millie and for strength, peace, and love to be with you.

Dan and Liz said...

I first heard about you guys through my sister Ali when she lived close to you. I've been following ever since. I've been thinking of you guys a lot, even though I don't know you, but I do have a two year old son and a baby on the way, so I just somehow feel such sad/mad/sympathy feelings for all of you. I pray for the best possible outcome and you will all get through whatever comes your way. She is amazing.
Liz Dean

alysonedmunds said...

I was just thinking...if you know how people can sign up to be a bone marrow donor, you should blog about it...i bet there would be several people who would really like to go get tested and add themselves to the bone marrow registry :)

Rick, Jayne & Riley said...

My heart aches for Millie and your family! The Bengtzen family is praying for you guys! You are an amazing example of a strong Mother!!

Briana said...

I'm in tears yet again, Amanda. We love you guys and sweet little Millie! You are in our prayers every night and we are fasting for you all again today. What you guys are going through is so unbelievably awful and HARD. There are hardly words. Thanks for the update - we are constantly thinking and wondering about you guys.

Sandi Martin said...

My heart just aches for you guys... especially little Millie. She is such an angel... love you to the moon and back sweet Millie. Amanda... as a mother and grandmother I can't even imagine how you are coping with all this. You are in my thoughts and prayers. Hug Miss Millie for Sister Sandi.

Heidi Hasleton said...

Your blog is beautiful. I am so grateful when people do blogs, then you can read and see what's going on. I don't know you or Millie except through our cancer cities group, but wow you're an amazing mama. I can't imagine how hard this must be for you to go through all of this again. I can't imagine doing this all over again with Tommy. You're so strong! Stay strong, keep your faith, continue to do what you're doing, you and little Millie will make it through this. These little kids are stronger than we could ever imagine, so amazingly resilient. Tell cute Millie we're continually praying for her, she's another one of our HERO's. Take care:)
Heidi

Heidi said...

Sweet girl. It made me cry, again, (because most of the time I can't seem to stop) to read your post. Because it all hits way too close to home. I know the exact way that you are feeling. Every single thing you have described, we have felt as well. If there is ever anything you need we would love to be able to help. For me, it helps to talk to someone who is dealing with or who has dealt with the same thing. And pretty soon, we will be neighbors for good. I am praying for that sweet girl of yours. My heart aches every time I have to think of these little kids having to do this not once, but twice. I am so so sad for you and your family. On another note, it was nice to finally meet you this last week. I am sure we will be seeing much more of each other in the coming months!
Heidi Jamieson

Kristin said...

I can't help but just cry reading this Amanda. You have our prayers, you know that. Millie is a special girl. We love her. I am praying for peace, comfort and strength for you all to do what needs to be done. You are amazing.

Eisha said...

Amanda, can you put the link (on the side bar of your blog) to that place that people can donate on? Once it is there let me know and I will start another round of donations from down under...we seem to get a pretty good response every time we solicit for a cause!

Keri Cannon said...

I cry every time I read your blog....I really really pray that they find a complete donor soon! She truly is an inspiration to so many! Love you guys

Ellie said...

You are an amazing family. I am thirteen and I had a BMT when I was about the same age as Millie. She is so strong! Praying for your family xxxxxx

Missy said...

Oh, this post made me just sob.
I'm so sorry Amanda. Your family is in my thoughts daily. We really love you guys. Prayers for peace and strength!

Trish said...

We are keeping your family in our prayers. Our little girl was just diagnosed last Oct so I know part of the battle you are fighting, so sorry to hear you have more to go. Was wondering where you even live, we're in Greenville SC and didn't know if you were anywhere close.

Hugs and prayers, Trish
http://kimchingocha.blogspot.com/

Jesse C said...

We love you guys and pray for Amelia. Cancer is limited. I loved your thoughts.

lindsay Roscoe said...

I love you all so much. I would do anything to take this away from my little sister, from her husband and from both your babies. I would give away my own life. I wish that saying these words helped and lifted some the feelings that our human vocabularly lacks from your heart, but it won't. We pray every second of everyday, with our every breath, we never stop praying. I still feel completley helpless. I can do physical things, i can wash dishes or tend Jack( whom we love very much) , but what i want to do is hold, help carry, ease some of the hurt, fear, anxiety, anger, fury, sadness, heartache and pain from your hearts. I HATE having to watch MY baby sister, watching her baby have cancer and feel so helpless for her own baby. Please know i am here to carry as much as you will let me and I can. I love you Amanda. You are my little sister, my playmate and so I help carry the weight forever.

Praying with each inhale of breath and giving thanks with each exhale.

Love,
Lindsay J Petroff

The Buckley's said...

We are praying our hearts out for little Millie. I can't even stand the thought that she is having to go through all of this. We truly LOVE Amelia almost like she is one of our kids. When I told Braxton that her cancer was back and we needed to pray for her he just sat there and I saw little tears well up in his eyes. I've never seen him react like that. He talks about her all the time and always finds things in the store that he wants to take to her. Let us know when we can come see her. We love you guys!!!!

Kendra Prince said...

I have been following your blog for along time now. I am so heartbroken that Millie is sick again. I know I have joined that Donnor Registry inspired be you and all your cancer moms posts asking for us to join over a year ago. It would be an honor to help your daughter or other cancer children.

Carly said...

You're in our prayers constantly!

Mary said...

After spending time at Primary Children's on the ICS floor I know without any doubt that there is a very special place in heaven for you sweet parents. Your hearts are constantly being tugged at from day to day and sometimes hour to hour. May you feel peace and love as you spend those quite times with sweet little Millie. I know that her room is filled with angels. In our home we will have a constant prayer for your family in our hearts. Continue the fight. God bless you and may He be with you always. Much love, Mary Cox ~ Tenley's Grandma <3

Miss Deja said...

Thinking of both of all of you especially Sweet Millie. I have followed her story for a long time now and I can't even imagine the heartache you all feel. My prayers are sent your way from Louisiana.
Much Love,
Deja

Dani said...

I went to HS with Dani Prince and I found out about your little girl through her. We just signed up for the Bone Marrow Registry. Thinking of your little girl and others like her.

communikate. said...

Though I've never met met Millie, you can just tell she has a special spirit. She is fighter and will come out so strong from this all. Sending prayers to your sweet girl and your family.

Jillian Efishoff said...

You don't know me but I follow Skylars blog and some other of Millie's cancer buddies. When I heard of her relapse on Skylar's blog I immediately registered with the bone marrow registry. I'm praying for all of you. Just know there are strangers out there that think and pray for you guys and are willing to help in any way! You got this! You will beat it!

Anonymous said...

You all are in our prayers all the way here from Oxford. Lots of love and cheers for Millie!! xxxxx Sara and Dave Bowman

Anonymous said...

You are amazing , i really hope this gets read, i am a teenage girl in Australia. I have been following Millie's Fight for a very long time and i cried when i read this. Cancer has been a part of my family since i was 2 ,affecting various family members currently. Millie has been my inspiration knowing that this little girl is so strong gave me hope that my family can make it through as well. Thankyou so much for sharing your fight and i know Millie will win this battle.

margaret wheeler said...

Dear Millie, Amanda & Brady,
I am Christian's mom, from preschool. We heard about Millie's relapse through a friend & I cried for you. I just want you to know that we are thinking about you & praying for you. My heart breaks knowing you have this trial. 1 Nephi 11:17 says, "I know that God loves His children; nevertheless, I do not know the meaning of all things." It brings me comfort & I hope it will bring a little for you too.
All my love,
Margaret

Dave, Cadance and Family said...

You don't know me but I follow Skyler's Blog, and I know Cami's mom. When I heard about her relapse it broke my heart I am so sorry!! She is such an amazing strong little girl!! Please know that you have so many people praying for your family everyday!!

Natalie said...

You don't even know me (I went to high school with Brady), but I pray for you and follow your blog faithfully. I can't imagine your battle...it just brings tears to my eyes. Keep on keepin' on. Good luck in the months to come. Still prayin'...

Youngins said...

Amanda,
I finally found your blog through the Cannons and I am first off sooo sooo sorry for sweet Millie, she sure is a fighter! I loved what you wrote about cancer, It cannot cripple love and cannot silence courage! I'm sure you have felt so much love during this time and Your courage as well as Millie's has shown through! I'm so sorry that you have to fight this battle, The heartache is unbreable but the love that surrounds you and your family is beautiful to see. I wish I could take this all away, and I do know that heavenly father wants to take it away too, we just don't know what he has planned for us. Thats the hard part, we just want to know why and when. But he is wanting you to keep holding on! Love you and your family!

Anonymous said...

You are an amazingly strong Mother!! You and your beautiful family are in my thoughts & prayers. Lots of love and cheers for Millie!!

Anonymous said...

God Bless you and your family. God Bless little Millie. We will pray for her and continued strength.

The Circus said...

You don't know me, but I heard about your bone marrow drive and my husband and I went. I briefly met your husband there, but I'm sure he wouldn't remember me. Why would he?
I so very much wanted to be a match for you daughter. I wanted to help her.
I hope you can find the one who can help her.

The Nilsons said...

I stumbled upon your blog from little miss cami's blog. How does one know if they can be a bone marrow donor? Perhaps I stumbled upon this blog for a reason...a life saving reason.