Monday, February 11, 2013

February 11th and 13th, 2005 - we've come so far since then!

This is what I wrote about Cole's birthday, eight years ago.

Happy Birthday Cole!  Finally we're in a regular room, things got much better for all of us.  We were all sleeping in the same room, when we could sleep, that is.  Somehow, Jason and I had been sleeping together in one of those tiny fold out chairs.  Cole was able to get out of bed and ride around in a wagon or play in the playroom and eventually, was able to get down in the floor and play.  There were improvements each day.  But still we waited and waited to hear the results of the tumor.

In the meantime, several follow up MRI's were done to ensure that no cells remained.  We were relieved to hear good results.  It was indeed totally resected and there were no additional tumors anywhere else.  We had the same technician each time that we had the first time.  At this point, after surgery and once we knew the tumor was really gone, we were much  more at ease and even able to tease the technician a little about working on his poker face.  I can't imagine how hard it is for the medical staff to know things are bad and hide it from the patient and families.

While waiting for one MRI to finish up, I was talking with the surgeon in the hallway.  We told him that, thanks to my dad, we had read about this new pinpoint radiation St. Jude was doing.  It limits the amount of overall radiation to the brain.  This is a huge development when you think about shooting something at your child's brain that could possibly harm his learning later in life.  I recall the conversation ending with the doctor saying "you can't have your cake and eat it, too."  This was his response when I told him that we expected Cole to develop, physically and cognitively, like any other child and that we would base our decisions for treatment on what would give us that result.

During this time, I was diligently searching for information and came across a message board for parents of children with brain tumors.  They became my support system while we were in Mobile.  Many moms told me who their doctors where and most suggested we get to St. Jude.  We continued to have this in the back of our heads, but wanted to find out what the results were first.  In the meantime, we contacted St. Jude, just to see what it was all about.  

February 13th

We decided to have a huge birthday party for Cole today.  We already had a cake my mom had made and all the things ready for his party at home.  We just brought the celebration to our giant hospital room and celebrated away.  Cole was able to sit with his Daddy and unwrap his gifts.  We planned a Wiggly birthday party, but it quickly turned into a Thomas the Tank party.  I think he ended up with every Thomas toy available in Mobile.

**** Cole's turning twelve today and eight years ago, I never gave a thought to what this day would look like.  I'm hoping it's everything he wants it to be and more.  I pray each of his days are always the best!


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