Hi, everyone. AJ’s Aunt Manda here.
This is the week the battle begins…
AJ had surgery Thursday (April 25, 2014) to have his MedComp (port), which administers the chemotherapy, put into his chest. Our little super hero did very well.
Leading up to the surgery, Sarah (AJ’s mom) made sure to make the week one to remember as he would be living in the hospital for what we expect to be about six months. He went to a Mets game, the movies, played with his best friends in the park, and for the grand finale, my sister rented a room in a hotel for AJ and a handful of his friends so the little fishy could go swimming for the first and last time this summer. Aaron and his friends had a blast hanging out in the pool and our new friend, Tommy Grimes, who orchestrated AJ’s big surf day, even came by to join the fun. It was the last time he’ll be seeing his friends for a long time, so it was extra important that AJ get in all of the “kid-time” that he could. His chemotherapy started the very next day.
AJ’s chemotherapy started Friday (April 26,1014). It is a very aggressive form of treatment, He will get a break for a few days at the end of the first cycle for his body to recover. He will also have stem cells taken from him, so at a later time he can have a stem cell rescue for a more speedy recovery. Once his blood levels are up to par for round two, he will continue with another 21 days of treatment. That will continue for five rounds.
So far, AJ is doing well. He shares a hospital room with another 6-year-old boy, who has leukemia. It’s really nice for him to be next to a boy his age going through something similar, but AJ is one of the few who will be living in the hospital for such a long time period. The other children will come in and out to receive their treatments every few weeks, depending on their cases. This means AJ will probably have more than a few roommates during his stay and will get to know a lot of other kids.
Since his chemotherapy started three days ago, he isn’t feeling the side effects of the treatment just yet – or at least not enough to speak up about them. We’re expecting the nausea, lack of appetite and other effects to come later on, once the treatment is in full swing. When he’s not receiving his treatment, he’s enjoying being in the playroom on his floor, which is stocked with coloring books, games, movies, blocks and other fun stuff. He also gets to have an arts and crafts class. He’s getting pretty good at walking with his IV pole, too. We call it his dancing partner.
One fun surprise that happened Friday was a visit from a very talented therapy dog, who danced, performed and gave all of the kids a high-five (or high-paw). Seeing the dog, also made AJ miss his own four-legged pup at home, Kobe. AJ and Kobe sleep together every night. He even calls her his sister, which led to a very funny conversation between Sarah and one of AJ’s nurses after his brain surgery…AJ had told his nurse that he has a 3-year-old sister at home, which led the nurse to scold Sarah for leaving her younger daughter alone at home. Sarah had to explain that AJ is an only child and that this poor 3-year-old girl was in fact, his dog. It’s obvious that Kobe misses AJ too. She even sleeps with his stuffed animal – an identical baby Goofy to the one AJ has in the hospital with him.
Today, Aaron made a new friend in the play room. We’re really happy that he’s been feeling well-enough to be out of bed and socializing with the other kids on his floor. It’s heartwarming to see him smiling and making the best out of a crummy situation. Here are more smiley pictures to prove it…
Yep, pretty darn heartwarming.
On a final note, our entire family is so thankful for everyone’s support. We’ve been so touched by everyone’s generosity and kindness and I’ll have a blog post about just how wonderful you all are very soon. Keep rooting for AJ and let’s all channel our super powers to get him back to health!
Aaron’s Mom here… I finally have a few minutes to jump on here and update. My sister did a wonderful job recapping this past week and now, here is some stuff from my point of view!
First off, let me just say that I was so worried that AJ would be sharing a room with someone. During our last two-week stay, AJ was very upset and overwhelmed with what was happening. We all were, but just imagine it happening to you. A 6-year old shouldn’t have to process any of it. This caused him to have some meltdowns and he was very angry. He was expressing how we all felt deep inside. I didn’t want AJ to have an outburst and his roommie have to hear it. I would feel so bad if we made another child feel uncomfortable and have to deal with our crisis at that moment. Luckily, AJ has been EXCELLENT. He has neither complained, whined nor cried at all since we came back to our “new home.” He lets the nurses clean his port, takes all of his medicine on his own and listens to everyone like a little angel…where did my smart A** of a son go? Trust me I am not complaining. I know I raised him to be respectful and be grateful for everything you have, even if at that moment you are not happy yourself!
Let me not fool you guys…he still is his inquisitive self, asking the nurses about every little thing they do. I wish I could record him studying the way the nurses clean his port, flush his IVs, draw blood, measure his medicine and everything in between. He even questioned the nurse on the amount of medicine he gets. He said to her, “I know I only get one pill of Decatron and you gave me two. I do not think that is right.” I love that he is his own little advocate and will speak up for himself.
This morning my Dad brought AJ and I bagels from our favorite bagel store. Every weekend AJ and I go to the bagel store, located on our town’s Main Street. After we eat, we usually walk around town and end up at the marina. We have little talks about everything under the sun. Sometimes we talk about very serious 6-year-old topics and other times we watch the clouds and make up stories to go along with them. I am really going to miss our weekend bagel routine, but I am determined to find a big window on his floor and eat breakfast on the weekends right by it! Its those little moments that I cherish the most with him!
On that note, my little superhero is calling my name. Hope everyone enjoyed the weekend 🙂