I took these pictures of Noah tonight as we walked around the hospital. We got a break tonight in the chemo drugs so Noah was able to leave his room and the 4th floor. We found a tri-cycle he could ride (it has a handle for mom to control in the back) and headed down the elevator to roam the halls. Being a holiday weekend we had plenty of room for him to roam. The three pictures above are of him laughing at cars passing underneath the glass enclosed bridge we were on. He loves this bridge because not only can he see traffic, but it is still decorated Christmas and has Christmas music playing in it. In the image of him on the right, I purposely shot his face out of focus, trying to capture what was making him smile so much - the flashing lights and greenery all around. The hallway is very long. It leads from the hospital to the Children’s Harbor building across the street. It is a place for kids and parents to retreat, relax and play. I think Noah enjoys watching the traffic more than he likes the facilities it leads to. : )
I stood back and let Noah and Jessica go ahead as I took this picture. I looked at this hallway and was thinking about how far we have already come with this process - and how very far we have to go. Six months seems like a long time to undergo treatment, but in some of the other cases we have met here, six months is a short time.
I experienced something yesterday I did not anticipate and wasn’t ready for. We were sitting in the oncologist exam room talking with one of the doctors. He asked if we had filled out the consent to treat form yet. We had not. In the business of Christmas I had forgotten about them. They are documents we have to sign to allow Noah to receive the drugs involved with chemotherapy. Some of the sentences in these documents are hard to swallow. I read about how nothing is certain in this practice of medicine. It could work, then again it could not. It could possibly cause him get another type of cancer down the road. It will weaken his immune system making him vulnerable to infection and even death. The line at the bottom of the page for my signature was blank. I had to make a decision to sign it. I immediately knew what that meant. I was agreeing to trust other humans to put toxic and somewhat poisonous chemicals inside my son, chemicals I know nothing about. I am agreeing to allow him to undergo discomfort, pain and to have the potential for infection. I am putting my trust in something that scares me to death. I saw what chemo did to my grandmother, aunt, and father. I didn’t make the decisions for them to receive it, they did. But now I am making a decision for my son. I have felt a tremendous weight of guilt from all of this.
The first round of chemo didn’t go so well. Noah didn’t react to the first drug like they hoped so they stopped it. As I watched him cough and get red all over I felt helpless, afraid, and guilty. They stopped the drug after a very low blood pressure reading. Noah immediately changed after the drugs were stopped. He came back to normal very quickly. This gave us a lot of relief. A chaplain came by to check on us. He had heard we were new to the floor and had had a rough day. He asked us how we were doing and I decided to bear all to him. I told him how I was feeling guilty about Noah going through this. I know chemo is our only option but still we put our names on paper allowing him to go through this. He spoke a great word of encouragement to me.
He said God gives us children, and the responsibility to take care of them is ours. We can only do what we know, think, and feel is best in our heart for them and the rest we have to leave in God's hands. We must trust that in the options God gives us, He also provides wisdom to make the best decision. We have to trust that He will perform what we cannot.
I know Jessica and I cannot fix Noah. God has granted him the blessings of surviving brain surgery, recovering remarkably, and having some of the best doctors around. We are trusting that this treatment is something God uses to heal, and that as Jessica wrote yesterday - He isn’t abandoning the ship during the storm.
Noah will really feel the effects in 7 days. We have to give him a shot every day to keep his white blood count up, get blood work done twice a week and come to children's every 4 weeks to do the treatments. I know that we have the strength and faith to make it through this - I can’t wait 'til it's all over. But until then we will take it day by day, smile by smile, and step by step.
Thanks for all of you who have prayed, sent letters of encouragement, cards and gifts, Noah is one blessed boy because of your love. We are eternally grateful!
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.