110 Days

It has been 110 days since Kate had a bone marrow transplant. 110 days since we jumped off that cliff with Kate in our arms.

It’s been 16 weeks since my 10-year-old son bravely walked to the OR to give his bone marrow to his sister.

To Hope to curb the disease that we were told she would die from.

It’s been a little over 4 months in hospital for Kate…for our entire family. Watching the bravest, most stoic and loving child endure what would reduce most of us to tears. To watch her suffer. To watch her smile. To see the recognition in her eyes that she knows she has no choice. To know that who she is, the life she has had, the choices we’ve had to make for her, the challenges she has had to face are beyond anything anyone could ever have imagined or what many can understand.

How do I express my feelings after 4 months of this. Of watching this. Of knowing what I know. Of living what we have lived. Of feeling what I have felt and continue to feel.

Of interrupting her life and of being terrified I won’t be able to get her back to it.

My greatest fear was disrupting the life she had. And she did have a life. It wasn’t easy. Despite the smiles on our faces to mask the daily pain and challenges, it wasn’t easy. It has been 8 years of not easy. But it was her life and she was living it and making the best of it and we were (so far) keeping her safe and the monsters at bay.

But now…

…now there is uncertainty again. Where there was confidence in managing her disease, there is fear of her recovering from this. Where there was excitement, there is a sense of loss for her – time at school, time with friends, time with family, time in the water, time spent outdoors at parks – on bikes – running. Where there was a sense of Kate being happy, I’m now not sure.

The day-to-day fatigue dealing with chronic illness and developmental challenges has been replaced by profound exhaustion. Endless nights on the hospital room cot, sitting by her bedside crying over her small frail body and wondering “what have we done”, moments of hope for recovery that slide back into complications and fear for her life. Grief. Loss. Sadness. Fear. The emotions mix in a melting pot of pit of the stomach sickness.

You try to hold onto Hope. Because Hope is real and it is powerful. But you are the mom and the dad and you are responsible and Hope gets overshadowed by Fear. And it’s a dance between the two. And you want Hope to win and you want to understand Fear and accept it, to not let it take over and it is an exhausting day-to-day struggle. And you feel worn out. And you feel annoyed at constant reminders to “stay strong” “be positive”. You want her back. You want another chance at the decision to do this. And you can’t. There is nothing to do but go forward.

I try to remember who this is about. This is happening to Kate. It is her life so severely and terrifyingly interrupted. But as much as it is about Kate and has always been. It is about Jack and Brian and Julie and our family. Being scared for them, for us…for myself and how we will come through this.

It has been 7  years and 9 months of facing down the SIFD monster. A monster that had no name. A monster we fought to name. A monster we had come to understand and had learned to live with, but a monster we were told time and again had surprises for Kate. Nasty – life limiting – surprises.

I know she is strong and she is incredibly resilient, and I’m jealous of the kids who go home. Who suffer less. I am jealous of the kids playing in the park and crying over scraped knees.

I am amazed that she still smiles and giggles. That she still belly laughs at silly antics and strives to make friends with anyone she meets. That she loves her nurses and trusts her doctors. Where does that LIGHT come from? How can there be that much strength and will and love and FIGHT in such a tiny little girl?

 

This has been her life and we’ve brought it to some sort of crazy junction of Hope that she will get better and live an easier life, or Regret that we have chosen poorly and we have hurt her beyond repair.

Which is it?

I think she lives the Hope and I feel the waves of Regret.

The answer isn’t clear yet and it will be many more weeks and months in hospital and delicately stepping through this new existence of the post-BMT world before we know.

We are relearning her disease and what we have transformed it into by doing THIS. The doctors don’t even know. I think deep down we knew it would be up to us again to forge the path and guide them, lead them, help them navigate Kate. I don’t think they realized that Kate would have the lead. I bristle at the work I have to do to get them to listen, to engage, to discuss and debate and understand that WE, Kate and I, know this best. That we have the lead and they need to listen, support and follow. So I step back and start to build the relationships Kate needs to be safe. It’s not easy.

It’s not Fair. It’s hard. It’s exhausting.

It is what it is.

Put one foot in front of other. Take one more step forward. Ignore the pain and heartache. Wait for the good moments. Try to pain attention to them and enjoy them. Get through the bad. Try to recognize the Good and the Bad.

Try to live our best life. Despite.

Try to help her live her best life. And Jack.

How did we get here?

 

I just want her to be well.

 

 

 

 

10 Comments

  1. Thank you for sharing your journey with us Julie. Heartbreaking is the only word that comes to mind, and why does life have to be so challenging for some. Think of Brian and you often. Remember our Ultimate team the two of you saved years ago. We thought Brian was a good player, till you hit the field. The males on the other teams did not know what hit them when you ran in and scooped up the disc. I hope these memories bring a smile to your face for a moment.
    Ellen Glouchkow

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  2. Julie I hear you second guessing yourself but please No regrets! You made this decision based on knowledge and what you hoped would be a better life for Kate and your family. You all made this decision together and it was the right one at the time. Just move forward and HOPE this all pays off in the end or that you did the best you could. We love you and we are praying for the best outcome with the least amount of pain.
    Aunt Pam

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  3. Julie…Denise from OGC here.

    Thank you for sharing your feelings about how a family treasures on of their own and will do everything in their power to fight for that member.

    Your words brings me to tears as I can see Kate smiling, jumping and enjoying life. I have been following your posts but now I feel I need to respond.

    You say your are reminded to stay strong and positive…I like to remind you that you are one for most STRONGEST and POSITIVE person I have met. This journey with Kate is one of hardships and struggles but you and your family have learned so much from it and your post teaches us!

    The value of life and the treasure of a child is one of the most significant reminder that you share within your posts. THANK YOU!

    So hold your head up Julie…you are amazing! Second only to Kate of course.

    You, Kate and your family are in my prayers.

    Take care of yourself.

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  4. Julie, I am so sorry Kate and you and the family are going through this. I don’t even have the words to express how this breaks my heart when I read your posts. It makes me realize how precious life is and how any troubles I think I have, pale in comparison to what Kate and you and your family are living. All I can express is that my thoughts and prayers go out to you each day. Thank you for sharing. Take care
    Liz Ellis

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  5. Julie. Thanks for this entry. Her light, her fight….amazing to me. Kate inspires all of us to be better people. Such a long road and you are all so weary but also so brave and the light I see in all of you is love, actually. XO

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  6. Julie, Thank you for sharing Kate’s story. Is there an e-mail address where I can reach you, please? Thank you,

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  7. Hi Julie,
    Thank you for so eloquently sharing the harrowing emotional struggle of caring for Kate. It truly helps others understand just a bit of what you are all enduring each day. I remember the day the doctors took my hope away when Leo was just days old. It took some time to realise I had not given them my permission. I had to take my hope back, own it and protect it for Leo. The dance between hope, fear, regret and love – oh what a dance. Each day, each step forward and back – when Kate is surrounded by your love, caring, knowledge and fierce advocacy of her health – she is able to smile. Those belly laughs come from knowing and feeling your love and protection. Your latest entry reminds me of a quote from a Leonard Cohen song that has stayed with me over the years.

    Ring the bells that still can ring
    Forget your perfect offering
    There is a crack, a crack in everything
    That’s how the light gets in.

    Some days are so dark, you feel like you may have been pulled into a black hole. Remember where there is love, there is hope and there will be a crack, no matter how tiny – the light will come in.
    Thinking of you all, especially your little goldfish.
    With much love and compassion,
    Sarah

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