Transplant time

"Smell the sea and feel the sky,  let your soul and spirit fly."

“Smell the sea and feel the sky,
let your soul and spirit fly.”

"Lose your heart to the ocean and you will find your soul”.

“Lose your heart to the ocean and you will find your soul”

Me: AJ I have to tell you something about someone you know from the hospital…
AJ: Yea, mom
Me: ______ went to heaven today.
AJ: He died? But he was a kid?
Me: I know, but he was very sick and fought hard, it was time for him to rest.
AJ: He’s in heaven; whenever I see a dragon in the clouds I will say “hi______”.
Me: That’s a great idea; I am sure he is looking down and saying “Hi right back”.

That is the conversation that I had to my with my 6 year old last week, it was the first person we became close with in the hospital that did not make. It was the first time my son and I had to acknowledge the awful truth about cancer. It was the first time my 6-year-old son had a friend pass away. They were roommates for a few weeks and spent many nights doing art projects together and bonding. I know this wont be the last time that I will have to tell my son that a child, a friend who is just like him, battling the same villain gained angel wings. I know it will not be the last time the harsh reality of cancer will knock me down. I know for the rest of my life I will have a pit in my stomach. I will always wonder if another mom will have to explain to her child that his/her friend gained angel wings from this awful villain… and that child will be my son. These children have to learn and cope with death too early in life. Many of them including my son sometimes fear that they will be next. We tell them that they are strong and that they will make it through, until we know that is a lie. Then we tell them that it is okay, you can rest easy now, you are now God’s gift, a angel, a fighter and you will always be in our hearts…

You do not have any time to grieve or to let things sink in. We all know time does not stop for anyone, especially if you are battling cancer.

A few days after the above happened AJ’s “vacation” at home ended. He was scheduled to be admitted to the hospital on September 24th. He was to begin his next round of chemo and then go straight into his stem cell transplant. Before he started his next round he had to get a MRI of his brain and spinal cord. Any time he gets a MRI or any scan I am always on edge. I always fear that the scans will show tumor growth or unwanted results. Most people in the cancer world call this scanexity. There is nothing you can do, but just ride it out. After AJ’s MRI he was brought up to his regular floor. He was so excited, his nurses and Childlife decked his whole room out in Spiderman decorations. They got him a bunch of brand new toys and activities. When you undergo a bone marrow/Stem Cell transplant the children are under strict guidelines and are in isolation until the whole process is complete. This takes about 4 weeks, but can last much longer. This means the children are stuck in a small room for weeks at end. As you can imagine the children and parents go a little stir crazy…wish us luck!

As AJ was looking through all his new toys and checking out the Spiderman decorations, I see his doctor who is only his outpatient doctor come up to his floor and stand by his room. I instantly got a pit in my stomach. I knew this meant they saw something on his scans. She sat down and told me that the scans showed that he had hydrocephalus, which is fluid buildup around his brain. I knew something was off with AJ for about a month but could not pinpoint it. Once again mother’s intuition was right. His doctors told us that he needed another brain surgery. This time they said it was not an intense procedure. They needed to insert a shunt to help drain the fluid. As a mom anytime they go into your child’s brain you worry, regardless how the neurosurgery team categorizes the difficulty of the procedure. The next day the little superhero went in for his third brain surgery. Of course he did great, like any superhero would. After surgery he did have a few moments where he made me nervous but all checked out well. After a bunch of tests everyone came to the conclusion that his brain just needed to heal. I am still not so keen on the idea that he will have the shunt for the rest of his life. I know at some point they probably will have to go back in and adjust its setting and etc. You can actually see it pop out of his head, which might be a normal site for people in the medical field but not for us everyday moms.

The reason why he needed the shunt was my biggest concern! Why two months after his 2nd brain surgery did this happen, he  had numerous scans since then and all checked out ok. He was off chemo for about 4 weeks. I was freaking out that the tumor was able to grow in that short amount of time. I think everyone on his team was nervous for the same reason. The aggressive nature of his cancer is always in the back of my head. It is no secret that his type of cancer is a very fast villain and in most cases overpowers even the strongest superheroes. Once again we had to play the “wait and see game”. No one will say for sure what caused the hydrocephalus. Although they are leaning towards built up scar tissue than tumor growth. Which is eases my mind just a tad bit.

Fast forward a week and AJ finally went into the transplant unit. So far he is doing great. The chemo regiment he is on is super powerful and will destroy all his bone marrow. So I know in a few days he will be at his worst. Mouth sores, fevers, nausea and a bunch of other unwanted side affects will take over. AJ has had his fair share of mouth sores and nausea, so in a weird way I am kind of happy that he knows what to expect. Although I know this time everything will hit him harder. He is always so good when it comes to pain and feeling yucky. He knows he just has to ride it out. He never cries, whines or complains of pain. Instead he will just lie there and try not to move or talk.  I am so amazed on how tough his little body is and how well he handles everything!

As excited I as am that this (xxx fingers) could be the last step in this part of his battle, I also know that just because the chemo stops does not mean his fight is over. Once home AJ will be in isolation and can not attend school for about 6 months. Cancer treatment does not just stop when chemo stops. You are not magically better and boom in remission! The long-term effects of it will always be something that my little superhero will live with. Some side effects are already in play, such as his hearing loss. He already lost hearing in the high frequency and we know he will lose more. We also know that chemo can cause future learning disabilities. This might affect him even more because of the location of his brain tumor and the three brain surgeries he has undergone. On a positive note, he is still young and we are aware of the issues that can arise. I will be working very hard with him. I will be educating myself on what type of problems can arise and how we can correct them.I am hoping by the time these scenarios come into play, he would have already learned how to adapt his new way of learning. Also luckily my older sister is a awesome special education teacher, so I know this kid will be just fine!

Cancer is something that always will be apart of our lives, but I refuse to let it define our family. If you ever had the chance to meet and talk to my little superhero during the past few months you will instantly realize that his bald little head does not define him. He never lets this battle interfere with his everyday life. He is still AJ 🙂 There is no talk of  “I have cancer, this sucks”. Even on his worst days, he does not let cancer take control of his mind.

Some Awesome events that recently took place
We were so fortunate for an organization called “It’s All for the Kids”. They held a charity event for AJ. The money raised went to grant a wish for AJ. Of course AJ choose to go to “Islands of Adventure”.  Of course he choose that so he can go on the Spiderman ride. We cannot wait till he is able to go! This was such a fun and exciting day. Thank you to everyone who volunteered donated and played in the softball tournament for AJ.
IMG_5046

It's all for the kids evet

It’s all for the kids event

Basketball charity game.

Basketball charity game.

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Another Awesome Event that took place was a charity basketball game ran by Brentwood Alumni. This was another awesome event. I was so excited that my little man was able to attend this game. Everyone had a blast! It was great to see old friends and the Brentwood community come out to help support my little superhero!
No words can express how thankful myself and my whole family is for all the support, prayers and donations that we receive. Everyone is making this situation a lot easier to cope with! I always let AJ know how awesome you all are and that so many people are cheering him on!

AJ, my mom and I were also blessed to go on a 3-day trip to Montauk. The hospital put together this trip for other families like us. This was such an awesome experience and AJ had a blast. A private plane ride, mini golfing, movie night and an awesome end of trip party are just some of the amazing things that went on. One really awesome thing about this trip is that all the children are in the same boat. No one had to worry about sticking out. Everyone was able to just sit back and enjoy the ocean views. Our children were able to play, run around and socialize with each other like any other child would! I loved watching him interact with children outside the hospital walls. I never knew watching a game of tag and volleyball would bring me such joy!

"Live in the sunshine, swim the sea, drink the wild air"

“Live in the sunshine, swim the sea, drink the wild air”

Montauk Adventures

Montauk Adventures

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AJ Quotes
“AJ: Aunt Manda, what are you eating?
Aunt Manda: Cream of wheat.
AJ: cream of WEED?
Aunt Manda: No, Cream of wheat.
AJ: Yea, cream of WEED.
Aunt Manda: NOOO Cream of WheaT with a T
AJ: OH I thought you said you loved cream of WEED”.

“AJ: Mom, I am going to sell all my toys.
Me: Umm Why?
AJ: So you do not have to get a job and stay home with me, I like it how you are always with me now.
Me: I know AJ me too, but what happens when you go back to school?
AJ: Ooo yea, I guess you will just become one of those annoying Mom’s who are always around and never lets a kid breath! Yea maybe, you should go back to work!
Me: Are you serious…where do you come up with this stuff
AJ: I guess my brain still works….”

Please stay tuned for my next post, which will update everyone on how he is handling this round of chemo and his transplant!

Thank You again to everyone who keeps praying and supporting us! We are so grateful for everyone who keeps cheering my little superhero on!!!

If anyone chooses to donate to one of the organizations below, we ask that you make a donation is Aaron’s name.  If you have any question’s regarding donations please just leave a comment and I will try to get back as soon as possible.

Our Go Fund Me Link– http://www.gofundme.com/8eld6g
Ronald McDonald house-   https://www.rmhlongisland.org/donate
Friends of Karen. -https://secure.acceptiva.com/?cst=dd7578 (direct donation link) main site is http://www.FriendsofKaren.org
logo– http://www.cbtf.org/support-us/donate

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