vendredi, août 22, 2008

putting the puzzle together

I've posted before about SuperBay, a 7-year old who is fighting Rhabdomyosarcoma. His mother's fortitude left me speechless this morning.

Essentially, Bailey's had this cancer for half of his life. He's been poked and prodded, spent his formative years in and out of Children's Hospital of Orange County, and pretty much endured more than any human being should.

Here's the latest update from his mom:
On Tuesday during Bailey's chemo I saw his oncologist. So we were talking about Bailey's scans and how they are due again and how Bailey was doing overall. Then he asked me if I had any questions. I asked him the one question that I knew I shouldn't ask and the one that I pretty much knew the answer to but asked it anyway (of course). Little background, when Bay relapsed we were told that Bay would be doing chemo for 2 years, 6 months into relapse we were told that he had 2 years left, 1 year into relapse we were told that he had 2 years left, are you seeing a pattern? It has been 18 months since relapse so I thought that maybe we should ask again. Let me just say that the pattern was broken and it is no longer 2 years. Before you get the YIPPEEEE out let me just say that it is now 3 years if not longer. I pretty much knew that we were not close to being done but that was not the answer that I wanted to hear. Just the thought that Bay would be 10 years old before we even think of stopping chemo is just a very long time.

Tuesday was also Drew's [her husband/ Bailey's dad] birthday and somehow I thought that telling him that Bay had at least another 3 years left would not go well with the socks and shorts so I debated on telling him, but since we have always told each other everything I ended up telling him. I think that being a year older really helped with receiving the news because he handled it really well. He just said that we should just think of it as a chronic disease that we just have to deal with long term. We both also know that really we have no right to complain because we still have him and heck if we are doing chemo 3 years from now that is 3 more years that we thought that we would never have 18 months ago. We have met far too many wonderful families that no longer have their kids that we are just very grateful for every day that we have together.

We have learned a lot in the past two and a half years. The biggest gift of all is that we learned to cherish what we have. We have been incredibly blessed. We thank God everyday for everything that he has given us. I could not imagine our life any other way. This is the journey we are meant to go on. I have mentioned before about this journey being like a puzzle. When you dump out the entire pieces to the puzzle it doesn't make any sense at all but as you start putting the pieces together you start to see the entire picture. I like to think of our journey that same way. The only difference is that we don't have all of our pieces yet and we have no clue what it will look like at the end. The one thing that I can say is that I have faith that at the end it will be the most beautiful puzzle that I have ever seen. I also feel as we go on this journey we are given pieces to our puzzle here and there. People we have met along the way, things that we have done, and experiences that we have been through. So only God knows what our puzzle will look like at the end but I truly so have faith and look forward to seeing the completed picture someday.
I'm hoping for a picture that includes a happy, healthy Bailey, surrounded by the Spoonies and all the people whose lives have been touched by this journey.

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