75 days already?

So WOW a lot has gone on since my last post. My Amazing son got us a studio apartment, I can only thank AJ and his two “dreadful” cold viruses. We have been roommate free for 1 whole week now and its the greatest feeling ever! Our studio apartment is actually the same room we have been in for…I have lost count how many days. We do not have a private bathroom or kitchen, but those small details do not matter when I am the only one who eats now a days and I live off of take out and Au Bon Pain. Plus my son has not peed in a actual bathroom in forever and I can use the extra walk down the hall to the bathroom, since all I do is eat take out all day.

It has now been 75 days since he was admitted for his chemo, I feel like it was just yesterday we were newbies on this floor, now at this current time we are the residents that have been here the longest 😦 or 🙂 not such a bad thing!

The little Superhero started his 3rd round of chemo on June 12th. He started this round a little weaker then he did for the last two, so we knew that it would hit him harder. Since this was his 3rd round, I am now a “pro” on when he will bottom out, what day he is start to feel sick on and etc..He managed to spike a fever 5 days into this round and didn’t let that bad boy break for about two weeks. Due to his constant fever he was on a lot more antibiotics than he normally. Running for the “puke” bucket and cleaning up poop became a full time job! He went this whole round without eating and barley drinking. His legs are starting to look like chicken little and he is upset that his summer 6 pack is starting to fade! So I told him that him and I need to be serious about working out. When this is all done and over we are going to Hawaii and Aj needs his Momma to look HOT ! AJ l  always manages to flirt with girls but a matching 6 pack wouldn’t be a bad thing..right? On a serious note though, we did end up putting him on TPN-which is basically nutrients through his lines, instead of a NG tube. His mouth sores were extremely bad this time around and went all the way down his GI Tract. The little man was in a lot of pain. Luckily morphine and other concoctions of medicine helped ease the pain and he slept almost the whole day. His ANC was at 0 for almost two weeks which meant he just felt yucky and his body could not fight anything that was hibernating/attacking him, including that damn cold virus that eventually got us our own studio 🙂 He had a few nights where he couldn’t maintain his oxygen and needed some assistance. There were also many days where he could not close his mouth because he was in such much pain, and do not even mention him talking. We got very good at interpreting his finger pointing and hand signals. As much as I worried about him, he did have typical Aj moments, where he mustered up enough energy up to smile! Never once did he “skip” school.  Even on the days he could barely speak, he still completed all his school work with his teacher. He still managed to make slick remarks to doctors and visitors. Aj has a bad word box and if anyone ever says a bad word you have to put $1.00 in it. Well Lets just say no one is exempt from this rule, he will catch the doctors, nurses, maintenance and the random person in the hallway say a “bad” word. Do not think you can give him a “ I owe you” and then forget, this kid will somehow track you down and collect your dues. After every round of chemo they also do a hearing test. One side affect of one chemo drug he is on, is hearing loss. Well turns out that he did lose a “moderate” amount of hearing in the high frequency range. In the big spectrum of things, hearing loss is the least of my concerns. At times I think the doctors are wrong! This boy hears every little thing you say, even when he is knocked out! About 2 weeks ago it was 2 am and one of my favorite nurses and I were talking and we both said “bad” words. In a deep sleep, Aj looked at us and said “you both just cursed, you now owe me $3.00 ” and went right back to bed. So I think he can hear just fine 🙂 Plus at this rate he can help pay his own medical bills!

At the end of this round they also did an MRI, the results were neither good or bad! Confusing for everyone involved. Basically they showed that the tumor collapsed. What they do not know is if it shrunk, grew, or stayed stable. The MRI did show some areas of enhancements, which means there is still “live” cancer cells in that amazing noggin of his.  GRRRR is all I can say!!! We all knew that his type of cancer can become resilient to chemo so this is no surprise. Sooo what do we do now??? More brain surgery of course! This time we hope that the surgeon can remove the remaining tumor and pray that the chemo worked and the tumor is just a bunch of dead cells!  When I had this meeting with his oncologist last week, his ANC was 0 and needed either a blood or platelet transfusion every night. So I thought he would not be ready for surgery anytime soon. I ended up going to Boston’s Children’s Hospital the very next day to see what they had to offer and to see if moving AJ away from the hospital that we call “home” is worth it. When I left, my little superhero was still not eating and still feeling yucky. When I came back he was a whole new child. He has been eating, talking, laughing, and being his typical Smart A** since friday 🙂 He always bottoms out and scares the sh** outta me and then within a few hours bounces right back to the little superhero I know he is!

Sometime this week he will be having his 2nd brain surgery, this time I am a lot calmer. During his initial surgery I was nervous that he lost a lot of blood and needed transfusions, now transfusions are a part of our everyday routine.  Of course I am nervous about the actual surgery and all the risks come along with it. Tomorrow (monday 7/7/14) I am hoping to have a meeting with his whole team to discuss all our options, like always I am always his #1 advocate.  I try to never fear for his future, at the end of the day I know that he had the best day possible.  He was here with us for another day…and that itself is something to smile about 🙂

Some highlights from the last few weeks!

***AARON GRADUATED KINDERGARTEN!!! He even got a chance to wear his cap and gown.  We were able to livestream his school’s graduation, which was pretty awesome!***

 

***AJ is now a pro at his neupogen shots 🙂 He even gives it to himself, well of course with help from his favorite nurses! I think this is one of the biggest accomplishments for my little Superhero, We are all so proud of him!***

 

***He interrogated all the new residents and made sure they knew his whole medical history. This was pretty amusing to watch. I know they did not expect a 6 year old  to ask so many detailed questions and they did not know how to respond since he only accepts in depth answers.

 

***He also got married- Yup that right, the little flirt sent me to Baskin Robbins and I come back and he “married” one of the nurses. My little flirt moves fast, but luckily she is pretty awesome so I am ok with it! Oh and FYI the one he married is also the nurse that he has a picture with in the hospital magazine :)***

 

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AJ said “look Aunt Manda, I have a big heart, that means I have a lot of life.” Oh My little monster, you always say the best things #MyAmazingKiD#TeamAj#HospitalLife#kickingcancersbutt#StayingPositive

6 weeks VS 6 years...Always will be a Momma's boy!

6 weeks VS 6 years…Always will be a Momma’s boy!

2 comments

  1. Dear Sarah, Thank you again for an update on Aaron’s recovery. I find your resolve to be one of the most impressive things I have ever encountered, and I am glad that you both were able to celebrate his Kindergarten graduation even during such a long stay in the hospital. Best wishes, looking forward to the next post and hoping that Aaron feels more like himself by then! Sincerely, Amy

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