One year ago today, we were in New York City at Memorial Sloan Kettering Cancer Center so that Nate could have the remainder of his tumor removed by the expert hands of Dr. LaQuaglia. With the tumor successfully and completely removed, that was the day that Nate became NED!
A couple weeks ago, after a week of testing, we learned that Nate is still NED! NED for one whole year! That sure is a nice start on FOREVER!
Nate was a very good boy for the long week of scans and tests. They poked and prodded, and he smiled and goofed around. It never ceases to amaze me how normal all of this is to him. I enjoyed the one on one time with my sweet boy. I was a little nervous when we went in to get results. While Nate has been taking Accutane up until the beginning of November, he finished the last really effective anti-cancer treatment (antibody) in July when he had the deadly reaction. So, he'd been off of intense treatment for almost 4 months. Several people offered to go with me for support but, I guess I'm a little superstitious, I wanted to go by myself. I have always gotten all of Nate's scan results by myself...except the first ones at diagnosis. They have all been great news...except the first ones. Before Nate's oncologist came in the room, we met with the fellow, who has been with us since the very beginning. She walked in the room and immediately said, "the scans are great". Whew! Big sigh of relief. Both the fellow and Nate's oncologist went over all the tests. Everything was all clear! Nate's heart and kidneys are perfect, like he never went through treatment. There is still a possibility that heart and kidney problems could present themselves...but, perfect is a great place to start! We discussed the next steps to get Nate enrolled in the next trial, which we are still working on. Then, they printed out a post-treatment follow up schedule for Nate (with all required appointments, tests and scans) until he is a teenager. For some reason, this is what got me. Seeing all these years in his life on paper, when we weren't sure we would even get him to 4, was very emotional. I cried, hugged and thanked our oncologist and fellow, two of the many, many, many people who have helped to get Nate to this point.
Nate also had an audiologist and dentist appointment in the last couple weeks. His hearing aids were turned up to prescriptive levels (the audiologist has been turning them up slowly, so he can get used to them) and he is still doing really well with them. He never complains about them and remembers to take them out before getting in the bathtub (unlike Mommy, who dumped a cup of water over his head with them in once...oops). The dentist report was actually very good! His bottom teeth are brown because the enamel has been worn away from treatment and vomiting. I assumed they would find cavities galore...but, no cavities! There is one spot that we need to watch and will probably have to be filled eventually, but we are going to do what we can to strengthen it. There is no telling what shape his big boy teeth are in. Treatment usually causes many of the adult teeth to be absent or malformed. I was pleased to see his front 2 big boy teeth on the top and bottom look good on x-ray. We will have to take future dental problems as they come and deal with them...but, we are really happy with his current report.
I look back at where we were last year...in a hospital, on the other side of the country, trying to help our son recover from major abdominal surgery. Then, the downhill turn Nate took from there. The horrible holiday season, spent in the hospital, our family separated, watching Nate in so much pain...starving. It really doesn't seem real. Did we all really go through that?! It seems impossible. How did we make it from one day to the next? Then tonight, I was cleaning off my desk where I found every card and note we have been sent or given this last year and a half (I've saved every single one to make a book for Nate). I guess that is how we did it...with so much love and support from everyone around us. I always hear that God won't give you more than you can handle. I'm not sure this is true...because, really, how could ANYONE handle being given something like this?! I think it's more like, God will help you handle what you are given. Through every person that lifted us up during this worst time in our lives, God helped us handle it.
We are so incredibly thankful that Nate is doing so well. We don't forget for one second that he is one of the lucky ones. We are living every day to the fullest and trying to fulfill Nate's desire for adventure and memories. We are going to have the BEST Christmas season this year. No hospital...ALL family time! We are so excited!
