Friday, August 13, 2010

Blessings during the storm

So last week we found out that Hunter would need a bone marrow transplant. I heard statistics of a 60% survival rate (as opposed to 85-90% for children who didn't need to follow that path), only 5% of children with Hunter's diagnosis end up on that path, and that each of our two children only had a 25% chance of being a match. A lot of numbers to process and a lot of hope was lost. At least for me. For a few days. Last Friday we took both children to the "clinic" to have their blood drawn to see if they were a potential match for Hunter. Ronin was terribly brave, not even flinching during the process. I placed a firm hand on her shoulder and gripped her as if to say, "I'm here and I won't leave you". Then it was Drayken's turn. His screams and yells forced me to go behind the curtain. And I collapsed. Onto my knees. Where I proceeded to beg God to let one of these children match Hunter so that their brother could live. I have never felt so desperate in all of my life. My faith has never been very strong. But I felt that if God does exist and if prayer is real then this is the time to go along with it. Ronin came up behind me and rubbed my back gently and one of the staff members came to my side and said something about never being prepared for something like this. It's true. You go over terrible scenarios in your mind but when your first born, your best friend, your soul mate, the child who owns your heart is laying in a hospital bed with a fatal illness, there is nothing on this planet that can prepare you for that type of heart ache. Nothing.

Turns out that Drayken is a 5 out of 6 match and Ronin is a perfect match. They are retesting just to make sure but it's pretty likely that despite the 25% probability, Ronin is going to be able to give her brother a decent chance at a life. And that means giving me a decent chance at a life. Because I can't even imagine how on earth I could get up in the mornings without him around. It's beyond my ability to imagine that scenario.

We have a lot of hell to go through before we come out on the other end of this. I don't even want to think about my son having three more hospital stays, one of which will be 4-6 weeks long. But I know that when this is all over with, we will celebrate so big and our entire community will celebrate too.

I am so humbled by the number of cards, gifts, facebook comments, calls, texts, etc that we have received. We are truly being physically and spiritually held up right now. Otherwise I'd be a complete mess.

It helps so much to see Hunter. We are able to talk on skype and our visits have been simple yet so precious. Feeling him curled up next to me, scratching his back, ruffling his hair, reading him a book, laughing with him... it all feels so much better than it ever did before. And the thing is, I really appreciated it all along.

I miss our normal days. I miss the homeschool routine we had started. Yesterday would have been our first day of our new routine at the community center: three preschool classes, swimming and lunch, then homeschool PE. We were all looking forward to that. We even already have the pass purchased.

Hunter is talking about how when he comes home he wants to take me out to lunch and he can't wait to get back to his baseball practices. I'm angry.

I guess I should just be thankful for every moment I have with my family. I just desperately want there to be a whole lot more moments with my sweet faced baby boy. This world is a better place with him in it. He completes me.


  1. i am so very sorry you and your family are going through this. you all remain in my heart and prayers! thinking of you, sarah

  2. My prayers are with you!!! God is amazing and He will wrap you and your precious baby boy up in His healing arms. May Love, Peace and Strength engulf you and your family. Love you!!!

  3. These things just sneak up on you. It's crazy how your life is going by normally, and then the crap TOTALLY hits the fan. Things that seemed terribly important now seem really trivial.

    It reminds me of when my sister was in the hospital. It was scary as a sibling, but I know my parents had it a million times worse.

    I have met so many parents going through what you're going through (from working at the Cystic Fibrosis camp). I never appreciated their situation until I had my own child.

    I've been reading my old Livejournal entries, and there are comments from you, talking about Hunter when he was a baby.

    Your relationship to him reminds me so much of my relationship to Jack. So much love. I really feel for you. And I really hope, wish, and pray that you manage to endure all this and have a happy outcome.

  4. Your family remains in our thoughts and hearts.

  5. Mandy,
    I was so thankful to read about Ronin's perfect match....we will continue to pray that the follow-up tests prove to be as successful.
    Also prayihg for your daily strength.

  6. My mom hears me tell people that I am so grateful that it was *I* who got cancer instead of Benjamin.

    And whenever I say it in her presence I am reminded that she went through those feelings of horror--because I'm *her* baby and I got cancer. :(

    I can't imagine what you're feeling right now...but know you will be in our thoughts & prayers until Hunter comes out the other side of this tunnel--triumphant!

    Love, Jessica XOXO

  7. Oh Mandy, what a raw and honest post. There is no way that I know what you are going through right now, but your words here make it more relateable. Sounds to me like Ronin is your rock, she is amazing- not only being a perfect match, but helping you through this. Such a special family you have Mandy.

    In my thoughts daily, lisa

  8. I can't even begin to imagine what you and your family are going through. The aching sadness, the exhaustion, the having to put on a smile, the anger, the fear, the happiness, the regret for the happiness; makes me tired just thinking of all them.

    I totally can understand your comment about spirituality. While I believe in at least the idea of "something" I only pray when I am extremely thankful or feel the dire moment calls for it. My thought is if there is such a powerful being out there, then he/she must be very busy and doesn't need me to thank him or her for every little thing, he or she just needs me to be thankful.
    This is the time for prayers. And I sure hope that having his little sister be a perfect match is on the right track. After reading/hearing about Hunter's story I signed up to be put on the registry and I am sending off my mouth swab today, so hopefully I can help someone else in desperate need.

    I'll be praying for the quick return of your happy healthy family.


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