August 28th, 2011. Day +170.   5 comments

It has been an emotional couple of weeks.  The day I left for Canada, we learned that Amy’s Uncle Russ was involved in an accident while on his pony driven cart.  He did not survive.  Amy’s Aunt Mary (his sister) broke her neck and the other passengers had more minor injuries.

The week prior to that, I went to the funeral of a friend and former co-worker who died after a less-than-month long battle with pancreatic cancer.

Amy’s cousin, Alison, is still in a fight with her cancer.  The first several rounds of chemo left her tumors smaller, but they are still too numerous for surgery.  She is currently in the hospital and gave us quite a scare, but is continuing to impress her doctors.  We continue to be amazed at her strength and we pray for the best for her.

Alexis (Charlotte’s transplant neighbor)  is back in the hospital with more GVHD.  We continue to pray for her and her family every day.

One of the teenagers we knew from AFCH, Keanah, just lost her battle with AML late last week.  I spent a lot of time talking to her mother in the hospital this spring.  Keanah was a brave young woman and she fought hard.  I wish it didn’t end this way for so many kids.

The two year old nephew of Amy’s friend was diagnosed with terminal cancer in mid-July.  They are currently demonstrating amazing strength as well as they keep him happy and comfortable.

Amy and I often keep tabs on other children across the nation with similar diseases.  Ross, a three year old from Kansas City, was diagnosed with Charlotte’s same rare subtype (AML-M7) the day after Christmas 2010.  He is now having major BMT related complications and will need a miracle to pull through.

Amy and I can’t help but feel extremely guilty for how blessed our life has been, despite what Charlotte has been through.  Many of these individuals didn’t have much of a normal life since their diagnosis.  Our girls have been terrific, even without me last week.  Molly has her 9 month appointment on Monday and CJ will be back in clinic late on Tuesday (we may not have CBC numbers until Wed).

Sorry for the bummer post.  But our life is as normal as we let it get, and we feel too close to all of these scenarios to not keep them in our prayers.  We also know that our life can change drastically with just one fever or rash.  So we went to the park today and had a picnic.  Good times indeed.

Posted August 28, 2011 by L. Elske in Uncategorized

5 responses to “August 28th, 2011. Day +170.

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  1. Our condolences to Amy and her family. This has been a horrid year for all of you and hopefully the worse will be behind you soon. You have no reason to ever feel guilty, you are the most giving family I know and many others have benefited from your generousity. Charlotte is getting more beautiful with every picture. It’s so fun that she started with blond hair and now in her “new” life has dark hair! Many prayers to all in need.
    love, JoAnn & Eddie

  2. Sending hugs your way guys…it’s been a really, really tough year…hopefully the worst you will ever see. Life isn’t always fair but try not to feel guilty about your blessings. God works in ways we don’t always understand. Be thankful for the time you have with anyone no matter how long or short. They are blessings in your life too. Big hugs from Sun Prairie.

  3. CJ’s hair is looking beautiful! You poured your heart out because you’re so concerned for those around you who are struggling with illness and loss and what appear to be hopeless cases. Sometimes it seems that there’s nothing we can do but just stand around and shuffle our feet. And then we remember, as though we could ever forget, that we serve an awesome God! We don’t know His will or His plans, but we know He hears every one of our prayers. And you pray, and we pray, and He hears. Yep, I guess that’s a lot better than just shuffling our feet 🙂 You are doing tremendous caring for them all by praying. May God bless you and increase your faith especially during these trying times.

  4. I’m sorry you’ve all had a rough couple of weeks. I just had to tell you, that I’m thinking about you all and I love the pictures of Charlotte. She looks amazing! I wish I could give you all hugs, especially Miss Charlotte, give her one for me!

  5. Joe and I send our prayers to all of those impacted by these events. You are all an inspiration to those who follow your story. We continue to pray that Charlotte does well and you are able to lead some semblance of a normal life.

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