Friday, January 29, 2010

Reaching Out

As I continue along this journey, I find new dimensions being added all the time. One thing I've been involved in quite a bit lately is communicating with other parents in the Neuroblastoma world. Since I belong to an online community of NB parents, I get daily emails regarding other families' struggles with treatment, research options, and questions from parents new to this terrible disease. Most of the time the discussion centers around Stage IV high risk kids, so I don't have much to offer. Once in a while Stage III intermediate risk parent will reach out for advice and support. Because I know the number of kids with similar diagnoses to Brady is pretty small, and because treatment and prognosis differs so much for Stage III kids, I often will email these parents. I'm certainly no expert, but I feel as though God certainly wants me to share with others what we have learned. I've "met" some amazing families by reaching out, but it saddens my heart so much to see this new crop of Stage III kids getting diagnosed all the time.

When Brady was first diagnosed, we were the new kids on the block. I remember so well the amazing people that reached out immediately to help us. Three people in particular were Donna, Ellen, and Aaron. Each of them will always hold a special place in my heart and each of their precious children are always in my prayers. Donna's son Eric is in his 20's (only a handful of NB patients are in this age group) and his story is unbelievable, and his faith is awe-inspiring. He is graciously and bravely facing the end of his battle here on earth, and I'm inspired daily by the powerful perspective that he and his mom have. Ellen is a mom to triplets, one of whom had a very similar case of NB as Brady (he is now completely healthy!). She started a resource site for parents called The Loneliest Hour which is a great source of information for those dealing with a new diagnosis. Aaron is a dad who contacted me during the time we were planning our trip to NYC for surgery at Sloan Kettering. His son Eli is certainly on the top of my list of inspirational people! Aaron was a fantastic source of support and information as Eli has spent many, many months living away from their home in Iowa.

I've started a new section of the blog that you can check out in the right column. I can't quite figure out how to space it out correctly, but if you click on the names you can read about some fellow NB warriors who are close to our heart. I'll tell you that it isn't always uplifting to read about the challenges these precious kids are facing, but they need our prayers. Where would we be if our prayer warriors decided that it was just too sad to keep up with Brady's story?

Please be praying for me as I reach out to other families. It is hard to strike a balance between wanting to boldly tell others about the good, bad, and ugly of our experience and also be sensitive to the fact that dealing with and understanding NB is a process. While I'm certainly no expert, I feel that God is leading me to share Brady's story not only to reach people on a spiritual level, but to help others navigate the medical journey as well.

A pretty quiet weekend for us...I hope it stays that way!


  1. Maybe it was Erik's site who first mentioned Brady? I have been following Donna's inspirational writing for years and years now. I also follow Sean's journey that I think Donna may have mentioned years ago?

    And somehow I was led to Brady's blog all that time ago and we've been part of the Williams family prayer squad ever since.

    Reaching out is the BEST thing a newly diagnosed family can ask for. I know how lost we were after G's disability was diagnosed and we were told she was the only one in the world - gulp. But reaching out found another family in the same boat as us and our lives have been forever enriched by their guidance on our crazy rollercoaster journey.

    A happy weekend to you all.

    p.s. I often check in on the USA blogs just after lunch our time. And I often find a whole heap have been updated in what is the evening your time. It has happened again now. Got to love perfect timing!

    M x

  2. God is so good Megan! He brought you to these families to give them that same fighting spirit he has given you. You are a warrior for kids with NB, so keep fighting till a cure is found my friend. God will continue to bless you for your service. Our prayers continue for you and your and all those precious lives that are going through this ordeal.

  3. Thanks for the kind words and the prayers Megan. You amaze me--I can't imagine having four tiny children and having the time and energy to reach out to others. But I am so glad you do--may God bless you and multiply your time! It gives me great joy to see your little guy doing so well! I love your photos!!!!

    Love Donna

  4. Thanks so much for the link, Megan. We love you guys and will always be praying for you guys!


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