Thursday, April 1, 2004 5:57 AM CST
Luke here. This post is mostly Susan's, but I have added some of my thoughts on this anniversary to the bottom of Susan's first paragraph.
April 1 - one year from diagnosis. My overwhelming feeling about today is how grateful I am that Nathan is still with us one year later and currently NED. Today he will be getting treatments to help keep the cancer from returning and although very difficult I am thankful for this too.
Luke here adding some musings on this anniversary. I've been thinking a lot about what today means to me. Susan summed it up well. I'm grateful and happy that Nathan is still with us one year later and is at such a good point in his overall health. So many of you have followed our family so closely through this journal. We spend a lot of time on status, but also a fair amount on pain, fear, and other not so happy stuff. I just want to encourage you all to use this day as we are. Sit back, take a deep breath, and take some joy in how far Nathan has come in this past year.
Nathan's day yesterday was better. He still had quite a bit of lingering pain and a little fever but not as bad as the previous day. We are wondering if the fevers have to do with him getting his GM-CSF by IV instead of by shot. Some kids get fevers from the medicine and maybe for Nathan the difference of getting it over several hours instead of in a shot is the cause.
We had to wait quite a while to get a bed yesterday and Nathan was so tired of waiting. He did well but it was hard for him. Poor kid hates waiting. He has had to wait so much in the last year and he is so good but he is always telling us waiting is hard.
Well - we are off in the rain for another day of pain...hoping today is even better than yesterday.
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