This post is one that I originally planned to post while AJ was having his 2nd brain surgery(7/9/14), but I could not muster up enough mental energy to post it at that time. As many of you know majority of my post are a tad bit sarcastic, I always try let my personality shine through. I have always been 100% honest with all of you! I love all the encouraging messages I receive as well as the messages from families in similar situations. This is why I decided to share my deepest thoughts in this specific post. Lately I have been receiving a lot of messages from families in the same boat as ours. They always ask how I always remain so positive and if I ever have moments where I second guess his treatment plan or if I ever think about the “unthinkable”. Well the answer is YES. Those moments when my little man is in so much pain he can not even breathe without shaking or when he not able to pick up a pencil because his fingers have a constant feeling of being on pins and needles. Those moments when he has no emotions and is just a “body” or when the only emotions he does have are filled with anger. Those are the moments where I second guess everything and when I think about the “unthinkable”. Did I make the right choice? Was there another option? Then I slowly snap out of it and realize that no one will have all the answers! Life isn’t fair, some people have bigger mountains to climb but that only makes them stronger. In the end this is going to make us LOVE LIFE and appreciate the EARTH that we call home. Plus, like I always tell people…”In the end, YOU will be OK because you have no other choice but to be”. Regardless of what your “OK” ends up being, you will be OK!…So here it is, I hope this post eases someone else’s mind and encourages someone else to fight on!
Oh my little Superhero, since you were born you have always been a bull in a china shop. It has always been go big or go home with you, so why would this be any different. You have always been a amazing kid with such an unique personality, hard to explain to anyone until they have had a full conversation with you. You love to stump people with your questions, comebacks and statements. You are a walking medical miracle!
Last week your MRI showed that your tumor had collapsed and there were several areas of enhancements. No one knows if the enhancements are just built up scar tissue or live tumor. If it is live tumor, that would mean the chemotherapy is no longer working and we would have to switch to radiation. Radiation is always a scary thing, but especially scary if you are radiating a child’s brain. Your Tumor sits right near your Thalamus, which is a major control center for many important brain functions. Chemo, has instant horrible side effects but usually they are only temporary. The long lasting side effects are ones that you can learn to live with, such as your hearing loss. Radiation is the opposite. Most doctors advise against radiation of the brain if the child is younger than 6 and are cautious if they are slightly older. If this happened 6 months earlier, you probably would not even be a candidate. When you radiate the brain, you are basically killing the part of the brain that is getting radiation. The problem is that some types of radiation scatter off to other areas of the brain. This usually leads to learning disabilities, loss of fine and gross motor skills, eyesight, hearing, and the list continues. I would never choose full brain radiation for you, nor do you need it. You would be getting proton beam radiation which is only available at a few hospitals nationwide,which is why you would be transferred to Boston Children’s Hospital. Proton Beam radiation can target a specific area, so the scatter of radiation is very limited. This new technology is amazing and gives children a better quality of life! The problem with your tumor is that regardless of the the type of radiation we would choose, we still have to radiate the area around your thalamus.
During my conversation with your team of doctors, I made it very clear that I was very concerned with the long term effects of radiation. It somehow came up during our conversation that if the chemo is not working that means the cancer has “one up on us.”. Then in the big picture, we will not have to worry about the long term effects of radiation. You, my little superhero would have already gained angel wings by then. This is something I already knew and accepted but to hear it out loud and have someone “cosign” my thoughts made my heart very heavy. This surgery you are about to have is very important and will determine what our next steps are.
Your cancer is very aggressive, rare, and powerful. It tends to have a very strong grasp on it’s victim. In the back of my head there is a little part of it that accepts the awful truth of this cancer. Back when this nightmare first started you compared this villain to the villains in spiderman. You reminded me that Spiderman forgave Sandman, that MJ forgave Peter Parker. You know that Harry and Peter went through a rough patch but came together to save the one person they love. I know deep down inside you know what your future holds and you have forgiven the villain. Two days after this meeting you said something to me that I will never forget. You said “ Mom, I know kids die. That is not right, then their Mom will miss them too much. Kids are supposed to miss their Mom’s in heaven, not the other way around”. I did not know what to say to you. Sometimes I wish you would stop thinking so much and just be a kid, but you have always been wise beyond your years. Well this is what I told you, “ Once again your right buddy, it is not fair, but in the end everything will be alright. Those kids who die are SuperHero’s and their parents are really strong. Now they have an amazing superhero watching over them. Their child will always be with them and will always stay in the most important part of their body…their heart. Always remember that all SuperHero’s forgive the villain, just like spiderman!”. I do not know if that response was sufficient enough for for you, but it seemed to do the trick because you quickly asked to watch the movie about Michael Jordan.
The second you were diagnosed with brain cancer, I said if it ever came to us choosing how aggressive we would to treat you, I would always choose the option that gave you the best quality of life. As much as it breaks my heart to admit this, I would always want you to live a short but grand life instead of a long tedious life. I would hate to have you live a life where you will always be dependent on others, always in pain and always struggling. I know if you were an adult and able to make your own decision, I know what you would choose. You would try your hardest to fight this evil Villain. If the villain still managed to take over, you would “not give up” but you would accept its strength. You would travel the world and complete your crazy bucket list. You would then rent a house right on the beach, that had a big pool and have everyone you loved come stay with you on your final days. You would want BBQ, Shrimp and lobster every night for dinner. You would want “drinking” games going on along with music playing, hard core basketball games and water gun fights. You would want us all outside for the sunrise and sunset. You and your buddies would dive right into to ocean to catch a wave. I know its crazy to imagine what your last days would be like, but it is something that is always in the back of my head. The thing about your cancer is that it is a very sneaky villain. Most children go into remission for a year or even longer, clear scans the whole time. They go back to their everyday life and then BAM the villain strikes again with no warning. Then these little people; who are just like you, have to muster up all their fighting power once again to put up another fight! This time they are not blinded…they know the constant pain they will be in, the hair they will loose, the procedures they will endure, the long hospital stays, the time spent away from friends and family. You would think they would be a little bit broken by now, but nope they are all ready for battle #2! I have total faith that your case will be different, that you will defy all odds, that you my amazing superhero will grow up and do amazing things and that you will always know how grateful we are to still have you!
So whats next? Tomorrow you will be having your 2nd brain surgery. You will roll that slick mouth and amazing brain of yours into that OR. We all know the risks and know that you can wake up a “different” child. As your Mom, I know that won’t happen to you, I have no doubt that you will wake up sharp as a knife! I am sure within a few minutes you will be up questioning the PICU nurses and asking for your Playstation because well thats the way you roll. You are always defying all odds and always kicking Cancers Butt! I love you, my little superhero!
Good News to report, stay tuned to my next blog to find out how blessed we really are!!!!!!!!!! 🙂 🙂