Freedom= mixed emotions–> Scratch that…We never saw home!

This was Aj 2 days before he stepped foot in the hospital. All ready for his ice skating lesson 🙂

Well when I started to write this blog entry it was 9:30am friday morning and Aj was in the playroom with one of his favorite volunteers from Sunrise on Wheels. We got news thursday that Aj was doing great and that on friday we would be able to go home for a few days. I was so excited for him but also had  mixed emotions. Now it is 9:30pm Tuesday (6/3/14) and we never made it home 😦 Friday afternoon as I was packing up our room , Aj started to feel sick. He was not able to keep any fluids down and could not eat. As the day went on he started to feel worse. Our dreams of going home were slowly going down the drain. By the time night hit, his everlasting cough was getting worse, he was achy and mouth sores started to develop. He also lost his voice (which still has not come back). He could have no voice for numerous reasons including from the chemo or the cold he has managed to catch! For a normal child the damn rhinovirus is no big deal. but with a child with an ANC count (white blood cell) at 0 the common cold just bought him a ticket to isolation. My poor little man also keeps spiking fevers and overall is feeling very yucky! He had to get two red blood transfusions and platelets, which I thought would help him feel a little better. Now it is just a waiting game till he is no longer neutropenic, in everyday terms this means until his counts go back up.  I hate seeing my little superhero in so much pain. He can not even open his mouth all the way to talk or eat. Last night was the 1st night he managed to eat anything since thursday, they upped his morphine and he was able to eat some applesauce, blueberries and some soup 🙂

 

On a good note, Aj’s super awesome surfer friends came to visit at the perfect time. A few hours after they left (thursday night) AJ started to feel yucky. During the visit they played basketball, volleyball, video games with AJ and his friends. Aj and his friends were smiling the whole time! The best part was that they brought AJ his own custom made surfboard 🙂 He shows everyone it and makes sure they know his “surf coaches” gave it to him. Aj won’t let me take the surfboard home, so maintenance is not going to be happy when they find out I plan to install brackets on the wall to hold his surfboard up!

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Aj spending time with Tommy, Christian and Ricky… Aj’s super awesome surfer friends. They are always so good with Aj and were amazing with all the children on his floor.

On my end I am starting to go a little stir crazy but I am determined to make positive things come out of this nightmare. A little over a week ago I was asked to speak at a fundraiser/Thank You diner at the Ronald McDonald House. I was little nervous and was asked to speak only a few hours before the event. I quickly put my thoughts together for my speech. I am still very honored that they asked me to speak, I am so grateful for everyone who helps fund and volunteers at the Ronald McDonald House. My new “home” is a huge blessing and a necessity for myself and many others. After my speech I was asked to speak at other events and I am super excited for this. There are so many generous people and amazing organizations out there and I am so blessed to be able to be a part of them. Since this villain first struck I have been AJ’s advocate for every little thing and as time goes on I am starting to find ways to be everyone’s advocate. So keep an eye out for some big moves I am starting to plan!

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Game time with revay and Dottie.

jenga time

Here is just a little bit from my original post that I started to write on friday night..A lot has changed since then, but not when it comes to this post.

Today is Friday May 30th, this marks day 37 being hospital bound. Today is also the day that AJ was going to come home! I was so excited, he was finally going to be able to walk outside and smell the fresh air. I had it all planned out, he was going to come with me to the Ronald McDonald House for the 1st time. I wanted him to play on the playground and see the place that I called “home” for the past 37 days. I wanted him to eat lunch in the same kitchen that I eat diner at almost every night. I wanted him to meet the staff that greets with me a smile everyday and always asks how my little guy is doing. I wanted to take him to the beach to watch the sunset, like how we used to spend our spring/summer nights. I hoped a drum circle would be there and we would join in. I imagined us looking up at the sun and talking about how grateful we are to have this moment together. I imagined him looking out into the ocean and saying his typical deep philosophical thoughts. When Aj and I go to the beach at night together, we always have deep conversations about the earth and life in general. He always amazes me with what comes out of his mouth. My rough and tough little boy becomes this deep thinker, he always looks out into the world and just soaks up the beauty and gift that we call life. One day he said to me “Mom, all the oceans are connected. So that means the water I am touching now has gone all over. So that means I have been all over the world, well just kinda a part of me”. He than proceeded to say “The water I am touching has been touched by other people on the other side of the world. Maybe by sharks and whales too, thats really cool mom”. One reason I want my superhero to come home so bad, is that I slowly see this amazing side of him disappear.

Wait Hold Up, this is where my little mind plays games on me. I was so happy that Aj was able going home for a few days. I really was, like super huge cornball smile on my face excited, but then the other side of my brain started to interfere with my happy thoughts. What am I going to do when I get home? I will not have all his nurses and doctors around. As much as being in the hospital stinks and I miss everything about our “old” life, I also got adjusted to our new life. This has become my little community, I enjoy my morning talks at the breakfast cart, my morning greetings with the maintenance guy, interacting with the other children, our late night volley ball games and my late night talks with his nurses. Those little talks are the best, they never ask me how Aj is doing or what is next in store for him. They actually never ask about AJ, mainly because they already know all the answers. Instead I can make jokes about Aj’s mood swings, without feeling like a horrible mom. They are the ones that deal with his good and bad days. They see me getting frustrated with him and also see his amazing smile and laugh peak through. I enjoy being around the other children and their families, I have grown close to many of them. I enjoy playing with the children in the playroom, reading them a bed time story, running to get another mom coffee, on several occasions even  putting a little one to bed and checking on them throughout the night. I can’t explain the way this floor works but I assure you no where else in this hospital runs like this. On any given day you will see kids behind the nursing station, running in the hallway at 12am, the older children on this floor tend to take care of the younger ones. At night I love watching AJ and his friends “watch” AKA entertain the little ones and each other. They can play for hours together. Today Aj’s roommate who is 3 had to get a procedure done today, so he was out of the room all day. All day AJ kept asking how he was and when he will be back. The second he came back into the room, they gave each other two big hugs and Aj said “ I hope your feeling ok, I missed you today”. That melted my heart. I love the little bonds they make here. When Aj and his friends see someone “free”(no poles) or leave the floor, they get excited for them but I know deep down inside they must want to scream. I can only imagine how he must feel when he sees his friends run around “free” or go home and he can not. Luckily AJ has never mentioned or questioned why someone can go home and he can not. I know he understands why and as more time passes I also think he is realizing that “home” is now room 467A.

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typical night, the boys think they run the show!

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Visit from some of his favorite teachers xoxo

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Visit from miranda ❤

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Nighttime games

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Typical scene in his room!

5 comments

  1. Sarah you are one rock of a mama love you & AJ you are in my prayers daily . Coming to NY in October cant wait to see you and AJ ,plan to be there 10/28/14 hugs to you and your little man.

  2. Sarah, thank you this update. I am always blown away by AJ’s brilliant thoughts, and they are my favorite part of every post. He is certainly wise beyond his years, and I have no doubt that is entirely due to how awesome his mom is. I am excited and eager to read more about your advocacy work. You are going to do great things by channeling your energy into something productive and highly valued by other parents out there! Best of luck 🙂

  3. Sarah you’re both in my prayers. May God continue to give you the strength to stay strong. I also look forward to the advocacy work that you have planned ahead. Keep being that voice!

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