Sorry I have been MIA. A lot has gone on in the past few weeks. AJ finished up his 4th round of chemo and is now in the middle of his 5th. He took awhile to recover from his 4th round, which delayed the start of his 5th round. I was not too upset because this allowed us to have a few extra days at home. Which let me tell you, is a lot of hard work and requires a lot strategic planning. He did not stay home very long for each “home vacation”, but anytime outside the hospital is time well spent!
For those who forgot what my last post was about, here is a little refresher. I had just received bad news about his last MRI and my little superhero gave me a real big scare. We found out that AJ needed a 2nd brain surgery. The doctor’s thought that the chemo was no longer working and they saw some new enhancements on his MRI. He made me think that his fight might be over sooner than any of us could imagine…but of course I should have known that this little superhero would pull through! Not only did he recover super fast from his 2nd brain surgery, we also got good news from his pathology report. This means the chemo is working and working well 🙂 We still have our fingers crossed that those pesky little cancer cells are not having a little party in a hidden spot! He is not out of the woods yet, but this is definitely amazing news. My mind is now able to rest a little easier! Also since his 2nd surgery AJ was also able to have small breaks at home! I will get to more about his little “vacations” at home later point.
I am sure many of you are getting ready for your little monsters 1st day of school. Some of you have little ones just entering kindergarten, while others are old pros at the whole back to school process. I remember this time last year, I was reading his welcome letter from his kindergarten teacher. I could not believe my little boy was finally starting kindergarten. I knew he would do just fine, but like any mom I was secretly a nervous wreck. Weeks before he started school I made him practice eating out of a lunch box, I was organizing and labeling supplies, and making sure he had enough school uniforms. We spent Labor Day weekend at the beach and stayed until nightfall. AJ and I both wanted to soak up every last bit of summer! I remember talking about our plans for next summer. AJ kept saying that next summer all he wanted to do was attend surfing and basketball camp and of course spend his remaining time at the beach/pool. As we all know, none of that stuff occured. Instead he spent his summer in the hospital. We tried to make it as entertaining as we could and all my old summer camp skills came into play!
This Labor Day weekend is a little different. Instead of getting ready for school, we are in an isolation room and preparing for his stem cell transplant. There is no need to schlep to 5 different targets to get the “perfect” backpack or school supplies. Instead I am trying to figure out ways to keep my little bouncing bean entertained while he is in isolation. I would love to trade places with anyone who is school shopping and standing in a Wal-Mart/Target line that seems never ending!
I actually do not have to go “back to school” shopping at all this year. AJ will be missing school this year. After his stem cell transplant and once home he will remain on isolation. He will not be allowed around many people. Schools that contain booger filled railings and germs in every corner are a big No No. He will not be allowed back in school for at least 6 months. If all goes as planned that would allow him to return to school at the end of may…so that looks like I better freshen up on 1st grade math! Yikes, I am a little nervous about this whole homeschool thing.
Last week I received his bus pass in the mail, I guess his school did not receive the letter that he will not be attending this year. My emotions are all over the place about him not returning to school. I am sad, angry, and worried that is missing out on other important skills that only being away from “mom” and in school can teach a child. Social skills, following directions and being independent are just a few skills that are crucial to the development of a child his age. He is always so proud after every school concert and play. I am going to miss those moments when you have to arrive an hour early for a concert just to get the perfect spot! I am going to miss the moments when he runs off the bus with so much pride because he did awesome on an assignment or when I stay up all night making goodie bags and cupcakes for his class. I cannot help but think of how this will affect him later in life. A 6-year-old boy should be spending his days playing power rangers during recess and begging me to let him bring gushers for snack everyday. Instead he is worried about taking his afternoon meds, what time I have to flush his lines and when he needs to get his shot. But that is our new reality and somehow we will make it work.
I Wish this whole not going back to school thing would save me money! Granted I no longer have to pay for his school tuition, uniforms and school supplies, but I can not longer return to work as planned. AJ will have tons of appointments each week for a very long time. At least that will keep us busy. One thing that I know will keep our little superhero busy is lots of physical and occupational therapy. From his initial surgery AJ has some right side weakness. A combination of chemo and his 2nd brain surgery added to the problem. Well I shouldn’t say weaker, this boy is still super strong and can probably tackle a grown man. He even managed to give me a heart attack and go across three different types of monkey bars! His right leg drags and turns in a little bit. This problem became more noticeable once he was home and pole free ☺ We realized that he could no longer run, has trouble walking up stairs and has trouble with some other large motor skill functions. This makes him a fall often, we allow him to use his scooter if we have to go anywhere that requires a lot of walking. Well last week he fell off his scooter and had a small scrape. He was totally fine and we went on with a fun filled day at seafood festival. The very next day his knee blew up like a balloon and he was in a ton of pain. Since he has no immune system even the smallest cut can become infected and turn into a big problem within hours. He also spiked fever the same day, which bought us an admission ticket back to the hospital. This was just another reminder how cancer is in control of his life. In the back of my head I feel guilty that he got the small scrape to begin with, but then I think of all the good memories we made that day. AJ was in such an awesome mood and had such a great day!
Some very exciting things have been brewing this summer. September is Pediatric Cancer Awareness Month and there are two huge charity events that are being held in AJ’s name. My whole family and I would love to see you all there! Bring the whole family down and have a good time while supporting pediatric cancer and AJ.
One big event that is going on is a Charity Basketball Game in AJ’s name. It is going to be a huge event at my old stomping ground, “Brentwood High School” on September 21st at 5pm. You can buy your ticket at the door or at the link below. Please join us for this fun filled night of basketball and entertainment. https://www.eventbrite.com/e/the-aj-sisa-cancer-awareness-basketball-exhibition-tickets-12817817437
Another fun filled event that is going on in AJ’s name is a fair that is donating the proceeds to an organization called “it’s Kids”. This organization is similar to the “Make- A-Wish- Foundation”. This event will be loads of fun. There will be over 20 vendors, softball games, a car show and tons of games and activities for children!
Funny AJ quotes/stories
AJ and I are at Adventureland and AJ is waiting online for a ride. There is this 10(ish) year old boy who begins to make fun of him for his scar and having no hair. One side of me wanted to jump right in and put that boy in his place but I knew AJ could handle it. Plus I thought this would be a good situation for him to learn how to deal with other children making fun of him. So I waited till the ride was over to see what AJ would do. I probably looked crazy cause I was leaning all the way over the railing to ease drop on his conversation. AJ turned around to this 10 year old and said “ I am sorry that you are too busy making fun of me to actually have fun yourself, but I am having fun and I think you are being a punk”. I was so proud of him! I knew he would quickly come up with a awesome come back. Seconds later AJ went running to another ride with no care in the world ☺
Nurse: So since we are married when are you going to get a job?
AJ: I’ll let you know when its time to cross that bridge!
Aj calling someone a “crazy cat lady”
Aj: Are you married?
AJ: Do you have kids?
AJ: do you live alone?
AJ: You must have cats then!
Me: AJ, I heard you got a divorce?
AJ: Yea, its true mom.
Me: Why, that wasn’t very nice
AJ: You know Mom, I just fell out of love with her. It just happened!