Today started very early. We woke at 5 and were on the road by 6 on the way to the hospital. We are so thankful to our church family for putting us up for the night in a hotel so we wouldn’t have to drive down this morning. We didn’t have to wait very long for the MRI. Noah was first on the list, and that was a huge blessing. These kids cannot eat or drink anything after midnight before the MRI and sometimes the wait can be all morning and into the afternoon depending on what emergency’s come up at the hospital. He was in the MRI before 7:15 AM.
He went in so brave. Jessica had a good talk with him about what was going to happen. He went into the “big tube” room and didn’t even whimper. When the process was over he began waking up to the sounds of the next patient fighting the nurses and screaming. It was pretty scary for him and he wasn’t very happy by the time we got to him. It is amazing what a mothers hug and a little sprite through a straw can do!
We were escorted by the radiology nurse to the oncology clinic and placed in a room. We waited around two hours before Noah’s doctor came in. During that wait we had good conversations with Noah’s new social worker Wes, and our favorite chaplain, Paul.
When Dr. Reddy came into the room, we were not ready for what she had to say. The MRI showed that the tumor that had been removed twice has now grown back again. It is 1 ½ cm in size. That is bigger than the last time it was discovered. The treatment Noah has been on since December has not worked. Dr. Reddy does not want to do another surgery at this time. Instead since Noah is so close to being three years old, she wants to try radiation therapy. She thinks that right now it’s our best shot.
Noah will have 30 treatments, One every day for six weeks excluding weekends. All of these treatments will happen in Birmingham at the Children’s Hospital radiology department. Tuesday February 2nd, he has another MRI. This will be longer than the one he had today. He will get the complete head and spine scanned as well as having a spinal tap (LP). The spinal tap is to look for “free floating” cancer cells. It is a precautionary procedure. We want to make sure that the cancer is only in the brain. A spinal tap will let us know if it is anywhere else. After the MRI we will meet with the radiation oncologist. Noah must be fitted for a mask he must wear during the treatments. He will be put to sleep for every one and the mask will keep his head perfectly still in the same position every time so that the area targeted will be treated. The treatments don’t last very long. They estimate about ten minutes for each treatment.
Our social worker is working on some temporary housing for us. Jessica and Noah will stay in Birmingham and I will go back and forth to Athens for work. It doesn’t sound very fun but it’s what we have to do. We are fortunate to have great caregivers so close.
We left the hospital today in a daze. We headed down the road to one of Noah’s favorite places, the Galleria mall. It has a carousel. We rode the carousel and Noah had a blast. He named his horse “Yee Ha!” We got off and sat down to eat. None of us were hungry, but we needed something in our stomach. As we sat there we saw Christy Steltenpohl, and she walked over to our table. Christy is the mother of Lindsey, a six-year-old brain cancer patient at Children’s who is presently going through radiation. ( www.caringbridge.org/visit/lindseysteltenpohl )The exchange between the two moms was tough to watch. Two moms with kids who are fighting cancer, facing tough odds, who can't think of anything to say to each other. The only thing they could say to each other was “This really sucks!” – well said.
We don’t know what the days ahead have in store. We know it is going to be hard. We also know we are not alone. Thank you, reader, for caring about and loving Noah enough to keep up with this blog. To be honest, I hate this blog – every time I have looked at it in the last few months, it reminds me Noah has cancer. In the last two months, Noah has grown a full head of hair and been home more than any time in the last twelve months. If it weren’t for the two outpatient treatments a month, I would say he (and us) have got to be “normal” for a short period. It has been nice. Just the other day someone saw him running and yelling and said, “You wouldn’t know anything is wrong with him” That is now over. Noah will once again loose his hair; he will once again get nauseated and be away from home and all the people that love him. Jessica and I will once again be separated and stretched.
I said I hate the blog, but I am also thankful for it. I am thankful for the encouragement we have received from you and all the support. I am thankful so many people know Noah’s story and so thankful so many people, like you, pray for him. Please continue. Please don’t stop. Ask everyone you know to pray for our little boy.
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These posts are written by Noah's parents Jessica & John David Crowe. The default author is Jess, and those written by John David will be noted.