Hello everyone! Its monday night around 8:30. Today will make day 12 at the hospital. We are getting to know all the ins and outs of MED4 (his floor) These past few days we have been on a little roller coster. Aaron has been doing great with his treatment, on thursday his oncologist even suggested that he might be able to go home for few days. Before he started chemo they warned us that if your child is home for more than few days than you are super lucky! Most children have to come back to the hospital within a day or even hours. The main reason being fevers!!! Since chemo destroys your immune system, fevers will become your new “best friend” and also means a 1 way ticket back to the hospital.
On friday(May 2nd) I was trying to set up his home care nurse, home schooling, PT/OT for his return home. In my head I knew I was doing all this work knowing that we would return back to the hospital before those services were even used. Talking on the phone with insurance companies for hours would make anyone nutty, but I was really going to lose it because I knew that it needed that taken care of ASAP. If anyone remembers from my previous posts, Aj has developed anxiety. So his OT/PT, homeschooling are extremely important, not only for the obvious reasons but it gives him a schedule and forces him to focus on something productive.
As I am trying to stay calm setting up all his appointments I notice the rash he has is worsening and he just does not seem right. I decide not to send him home, mothers intuition kicks in once again. His blood counts dropped dramatically over the weekend. This is the first time we are seeing any effects from the chemo. My little eating machine barely ate on sunday and was in pain. We finally got the pain and itching to subside 🙂
Sunday night was a rough one for me. My advice to anyone is ALWAYS make sure you stick up for your child and become his/her biggest advocate! No one knows your child better then you. As parents we always know when they are getting sick days before any symptoms arise. Trust your gut and fight for what your child deserves and needs. A few “mix ups” happened this weekend regarding AJ’s treatment/situation I had to make a big stink about a few issues that needed to be addressed. I am usually a carefree, “be happy” person, but if you try to dismiss my concerns about my child or make “minor” mistakes that end up affecting him in the long run, you messed with the wrong MOM. So this morning I had a meeting with everyone on his case and I stated my concerns and now I am happy to say that everyone on his team is on the same page. I know as we move along in this battle that things will never go 100% right and people will make mistakes, including myself. I just need to know that there are policies and procedures in place for when this occurs. Also that I can go to someone to address my concerns. AJ is not your typical child. His reaction to drugs will never be constant and rarely follows the normal reactions that are expected. He has always been the child that stumps his doctors and everyone else that he talks to. I finally think that everyone on his floor is starting to see that I am just not a “neurotic mom” and that AJ is truly one of a kind!
Once again I just want to state that I am so proud of my little superhero. His fever, mouth sores, rash really took a number on him yesterday and today and he still was in a great mood and still managed to eat. He did awesome with his teacher today, she is so impressed on how smart he is and how quick he picks up new topics. One positive thing is that he gets one-on-one teaching all day long from myself and his (hospital)teacher. Yesterday he wanted to know which countries had the highest/lowest population and today we discussed who invented the first computer. We also had a another medical lesson on blood cells and how are body uses/carries oxygen and nutrients. Give it a few weeks and he will be a walking Wikipedia.
As I type, I just got word that he most likely will be receiving his 1st transfusion tonight. His counts are dropping at a steady pace, so if they follow the same trend as the past few nights he will be in the “transfusion zone”. They draw his labs around 11/12 at night so his transfusion will take place overnight. I am happy that he will be asleep , but that means I will be up all night watching him like a hawk!
Here is a just snip of what some of our daily conversations are like. This convo happened as we were watching the Amazing Spiderman…
Aaron: Mom, you know what I was thinking about all morning? That I am very grateful that I can be lazy and pee in a bottle. I hate walking to the bathroom, you think i can still do that when I get home?
Me: Really AJ, that is what you’re grateful for? and no you can not do that at home!
Aaron: Ahh it was worth the shot, its not like I would pee in your coffee cup, I know that would really ruin your day!
P.S he doesn’t pee in a random bottle here. He does have to go in a plastic urinal that we keep by his bedside. Boys will be Boys!