How light and joy-filled our hearts are once more! Nathaniel remains clear – “The scans look good!” There are no sweeter words for us to hear! In those moments of waiting, when our world could either be splintered and shattered or remain idyllic, remaining calm and composed becomes harder with each passing minute. But having gone through this many times before, we now know that we shouldn’t try to read ‘signs’ in people’s composure or by how long it is taking. We simply must trust in the power of prayer, regardless of our physiological anxiety. It was a busy day on Wednesday, Nathaniel needed a big blood draw first thing, then we met with oncology and then moved over to neuro ophthalmology. Not all his blood work was back so we didn’t hear about his endocrine panel, but his iron is still very elevated. We are assuming it was the mushroom supplement that elevated it but still don’t know for sure. And…he has grown, he’s up two centimeters, which is all in his legs due to the radiation of the spine, but we’ll take it, wherever it is! He’s a pound heavier too. Yippee! Over at ophthalmology we learned his right cataract has increased in size but the left remained the same. And our boy’s stigmatisms have both gotten worse, so he needs a new prescription. Not necessarily the best eye results, but certainly not as bad as it could be so we are very thankful for that! Praise God! While at ophthalmology we connected with another AR/TR family with whom we went through treatment four years ago. Their daughter is two years older than our boy and she looks wonderful. Unfortunately she began having seizures, a side effect of the treatment, and that has become a new hardship for them. Our time was limited due to other appointments but it was great to see our survivors healthy and strong, with full heads of hair! Praise God for the miracles that they are! Getting to know Dr Dhall in these short moments is proving insightful; he is a very caring, calm, well informed doctor. He believes that after our next four month scan, we can move to scan only every six months! That threw me for a loop and I tried to understand why the change so soon. He leaned on the research that shows children who make it past three years post-treatment tend to fair well. I pushed and asked if that is true even for those who had metastatic disease and he told us that those survivors are so rare, he can’t really speak to them in particular. Unfortunately, I know from our fb support page that three years isn’t a magic number and kids have met that beast again four, six, eleven, and even thirteen years out, with disastrous consequences. But, we will remain hopeful and prayerful that our son will continue to defy statistics through the power of prayer, to the glory of God. So while we celebrate the life giving news, we remain on our knees begging God for a full lifetime of clear scans. There are so many terrible side effects that come from the bombastic treatment, too many to list or even contemplate without having daily panic attacks. All we can do is continue to pray desperately that our Nathaniel be permanently healed of all cancer, sickness and disease and all side effects of the treatments, especially the radiation. His life is truly a testament to the powerful of faith and prayers of others. Thank you for walking with us – we love you and will always pray for special graces to fill your life! A big hug and lots of love!! Oh one last thought…while having a quick bite to eat at Ronald McDonald House, I met a lady treating herself to a coke. She told me my boy would be well and I didn’t need to worry. She said, “You have a choice to make…you can either worry and be anxious – or – live in the Word. And if you live in the Word, then you have to give it over and trust! Just trust!” It was a timely message, one that I need to remember daily. So here’s to living in the Word and trusting in the Almighty!
Posted on: Fri, 21 Nov 2014 20:43:32 +0000
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