Yesterday I opened my school at 6:30 am and left around 9 am to take Aaron back to the hospital. He had to get a hearing test and a PET scan done. His hearing test was at 10 am and then his PET scan was at 3:30. The PET scan required him to fast all day, so having a hungry child at the hospital all day was not an easy task. Good news is that his hearing is perfect! He also did awesome at his PET scan, He verbalized to the nurse that he wanted the IV in his hand instead on his arm. The nurse walked him through each step. Aaron of course was playing his own advocate and asked a million GOOD questions. He sat sooo well as they were flushing his IV and replaced it with the “special brain seeing dye”. He had to wait 45 minutes after they gave him tracer before they can start the scan. When it came time for the scan, he walked right out the door with the MRI tech and laid down for the scans like a pro! His aunt and I were so proud of him! A few days ago, this would have been a huge ordeal with lots of tears and meltdowns!
I also had a meeting with oncology to go over the details of his chemotherapy. All I can say WOW, listening to his doctor explain what each medicine does and all the side effects was not easy. My older sister was with me for this meeting. The child life specialist and Aaron’s psychiatrist were working with him in another room for this meeting. They were explaining in “his” terms the same thing the oncologist was explaining to us. Chemo sucks for everyone who has to go through it, but Aaron is going to be on a very intense chemotherapy regiment called Head Start II. I cannot begin to explain the whole treatment. Aaron keeps saying “If I am sick, why can’t they give me medicine to make me better?” “They are giving me medicine to make me sick instead, that does not make any sense”. UGH my little Superhero could not have said it any better! He is going to be very sick and he will be for a long time. I have no idea how he is going to feel, and I cannot even imagine what his little body is going to feel like! As a mother, my heart is in pieces that I am not able to take his fears and pain away! Little by little he is starting to understand that his life is about to come crashing down on him. Luckily, he has a strong personality and I know that will push him through even on his gloomiest days!