Monday, 15 July 2013

Meet Brave and Beautiful Emma!

When I was pregnant with my 6yr old, I joined a group on Yahoo for other expectant mum's who were due in November that year (although my daughter didn't make an appearance until the beginning of Dec!). It was a lovely, friendly and supportive group and I made some lovely online friends as we shared the ups and downs of pregnancy and parenting, once our little bundles of joy had arrived. Most of the members were from America, apart from me in Wales and Synchronization Of Us who lives in Scotland.

When facebook appeared, the yahoo groups slowly began to disappear as people began using facebook more and more, but a lot of us stayed in touch and are still friends on facebook, watching our 6yr olds growing up. 

One of the members Our Little Taste of Heaven, has a 10 year old daughter called Emma. Emma was born with a serious medical condition called Fanconi Anemia (FA) which causes bone marrow failure and different types of cancers, often including leukemia. Currently there is no cure!

Photo courtesy of Our Little Taste of Heaven.
Emma is in the middle with her parents and siblings

There are treatments which can (if successful) extend her life, such as a bone marrow transplant. But Emma is in severe bone marrow failure and sadly, despite having four younger siblings, none of them are a match for Emma (although ironically, in pairs they match each other)

In April this year, Emma sadly entered into more severe bone marrow failure and her immune system seems to barely function when she gets ill and her parents realised that time was running out for Emma and she needed a transplant.

In church one day she gave her own testimony and this is what she said.

My mom told me that people at Church are going to be fasting and praying for me and I was surprised because I didn’t know that. 

When my mom told me about FA, and that I will die without a transplant, and I knew that I might die from my bone marrow transplant, I cried a little bit but not very much because I’m not afraid to die. If I die I know I will get to be with Jesus and I know I will get to be with my family again.

I know my family would be sad if I died, and my mom would cry a lot, but I don’t want them to be sad because I would be happy if I was with Jesus.

Since my hair will all fall out when I have my transplant, I wanted it to be the colors of the rainbow, so I got to have it different colors. I’ve been excited about my transplant because I can get better and when I do I can take dance lessons, play with my friends and go on a water slide.

If you ever feel scared you can pray and Jesus will help you feel better. I have prayed when I’ve been scared and He has helped me feel better. I am a Mormon and I believe in Jesus. He is very important to me. He is the Son of God. He is our brother. He died, but He lives in heaven.

If we do good things and help other people we can go to heaven and live with Him. We don’t remember what heaven is like, but I know about heaven because my mommy has told me about it.

In the name of Jesus Christ, The End

Photo courtesy of Our Little Taste of Heaven
Emma's beautiful rainbow hair
Thankfully a donor was found and five weeks ago; Emma, her mum, her youngest sister, and her aunt made an almost 1000 mile trip from their home to Cincinnati for Emma's bone marrow transplant. 


Now the day of the operation draws closer, and Emma has been separated from her little sister as she's placed in isolation to begin chemotherapy and her transplant will hopefully take place in a weeks time. Because of the chemo, Emma will lose her beautiful long rainbow coloured hair. 

Photo courtesy of Our Little Taste of Heaven
Emma enjoying her final time with her little sister
before going into isolation where she's not allowed to visit
Last week Emma had surgery to put a central line into her chest and whilst they they took one of Emma's ovaries. Chemotherapy will leave Emma sterile, not to mention that FA also causes early menopause and sometimes problems with their ovaries and womb, thankfully Emma's are fine and healthy and one of her ovaries will be frozen so that hopefully in the future Emma will be able to have a child of her own!

Emma is such a brave and beautiful girl and it's heartbreaking for me to see what her family is going through, let alone how hard it must be for the family. Separated by over 1000 miles as they face their biggest challenge and they don't even know if Emma will survive!

I pray she does! Each day I add beautiful Emma to my prayers and pray that this operation is a success and she becomes the happy and beautiful, healthy child that God created and that her family find the strength and the peace of God as they pass through these dark days that face them. 

Last night, as Emma was checked into her room for her bone marrow transplant, her mum summed up on facebook what the last few weeks had been like for her and when the future could bring.

It's been over five weeks since we packed up our bags, packed up the van, gave hugs and kisses, and left our Texas home to bring Emma to Cincinnati for her bone marrow transplant. 

Even the sky was crying that day. 

Those last moments to
gether with my remaining three children and husband were some of the hardest moments we've gone through. To know I had to give those last hugs and last kisses on those tiny cheeks and *actually let go*. I didn't know how to let go. I kept feeling like I needed to give them just one more kiss. One more kiss. One more kiss. One more hug. I wanted to leave as many with them as I could. I needed to give them six month's worth of hugs and kisses because I didn't know when, or if, I'd see them again while we were away. My arms were already missing them, and I hadn't even let go yet.

I knew the moment I let go was the moment that we would start our new adventure, and I knew that our new adventure didn't include us being together. I wasn't ready for that. I wasn't ready to start an adventure where I wasn't there for all the little things and all the big things. I wouldn't be there for *any* of the things. I knew that when they cried, I wouldn't be able to hold them. I knew when they got hurt, I wouldn't be able to comfort them. I wouldn't be able to touch, feel, smell them. I wouldn't be there, and nothing could ever give that time back to me.

I watched the last hugs and kisses from father to daughter, the not wanting to let go, the long holding, the tears. The hurt in his eyes that he *had* to let go. He had to let her leave. That he had to be separated from her. The way he held the baby, the way he looked at her, hoping she'd remember him. The way he looked at me, held me close, neither of us wanting to let go, knowing we would have to go through the hardest, scariest part of our marriage - apart.

I watched the last hugs from sister to siblings and cousins. I watched them cry, some understanding better than others and not wanting to let go. They didn't want to say goodbye, but they knew why they had to. I saw them be brave in a way that doesn't seem fair. I saw them embrace, then finally pull apart, then walk away.

I watched my sister give her daughter her final hugs and kisses, as she lent her to me, to help me at transplant with the baby, while my sister remained to help with our remaining children. I watched my other sister, who chose to temporarily leave her home and husband to help us, standing there with her five children, also extending her wing over my remaining three children. Then simultaneously, over five hours away, another sister was preparing to leave her home, to meet me in Cincinnati to help us through the transplant process, missing out on precious time with her husband who will likely be deployed before she makes it home.

We don't have words to express our appreciation to each of them and their families. It has stirred emotions and feelings in us that we have never felt before. To see others sacrifice so much for our family is incredibly humbling (and more people in many more ways than this!).

We knew that Emma might not come back home, that it might be the last time we would see her there, the last time to see her walk out of her room, the last time to walk down the hall, the last time to hear her laugh there, the last time for her to be there, the last time our family would be like we were right then.

We did say our final goodbyes, we did leave, and we've been in Cincinnati for five weeks now. It's surreal that we're here - that tomorrow, Emma will start the fight for her life. Literally. Her immune system will be completely wiped out, and she'll be given new cells soon. A chance to live.

While we don't know the ending of this chapter of our lives, we know the ending of our story. We know that through Christ, and what He's done for all of us, there is absolutely a "happily ever after" to our story...and that's what we ultimately hold to and what brings us peace, as we prepare for all of what these next few months bring.
If you want to follow Emma's progress as she fights for her life, then you can follow Our Little Taste of Heaven on Facebook (for more up-to-date information) or their blog

Photo courtesy of Our Little Taste of Heaven
Emma being checked into her transplant room

If Emma's story has touched you and you want to help then please, I implore you, sign up to the register to become a bone marrow donor and help children like Emma! It's easy to do and you can sign up when you next donate blood. Sadly I can't as I've had a blood transfusion in the past and in the UK receiving a blood transfusion means you're ineligible to donate blood. For more information check out the British Bone Marrow Registry

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