I'll have to say that roommates in our situation make a HUGE difference in how pleasant the stay is and the kind of mental struggles we have to endure.
Our first roommates consisted of a 17 year old girl who's had Sickle Cell since she was four. She's been in and out of the Children's Hospital for 13 years. Her stays are extensive and she requires lots of pain meds. I remember her calling for morphine often. On the other side of the curtain was a 19 month old little boy who kept having seizures for no apparent reason. His mom stayed with him for the first 4 days, then she left to take care of her other children while grandma stayed the rest of the time. Never saw the dad or the mom again. This is what we were exposed to our first 12 days in the hospital. We had no idea at that time that Hunter had Leukemia and we would be living there for the next 8 months.
So then, on November 30th we were told that Hunter has AML Leukemia and we'll be moving on down to the cancer floor. We loaded up all our stuff in Hunter's hospital crib and sadly made our way down. As soon as the elevator opened, I immediately noticed a different smell. It made me cringe and I remember feeling sick to my stomach. The nurse told me the smell is from the treatments and therapy for all the patients. I had no idea what was to come. I kept thinking.....this isn't happening, this isn't happening....this just isn't happening - can't be. Our nurse walked me around to show me where the restrooms were and the community refrigerator and the playroom...ya ya....I was in a total fog and just kinda cried here and there as we made our way around. She then moved us in to our first 4th floor room - #410. It was the A side, which is the smaller side. Similar to the situation we were just in, extremely tiny and no room to even stand on the floor once you turn the recliner into a bed. Our roommate in this room was a little girl around the age of four. I had no reference at the time as to what round she was in or what type of cancer or what the outcome was to be, but I know she sounded very happy and was in a good mood often. She had a great giggle. Made me feel a lot better to hear laughter instead of someone screaming for morphine every 3 hours. Her dad came every morning before work to say hello and to tell her that he loves her and then off he went. Her mom stayed the rest of the time and slept there at nighttime by herself. I'm glad they were our first experience to someone going through what we were going to be going through. It made it seem not so sad.
We lived there for about 5 days until we were finally able to get a different room. Little did we know that we were put in one of the best rooms on the floor. I miss that room. It was the room we celebrated Christmas and New Years in, it's the room where Hunter got his studly mohawk and it was the room where Hunter started showing his first signs of life again. Great memories.
Hunter rockin the house with his Mohawk
New Years Eve toast
Hunter's first half-smile back in December. It's also nicer on the B side because you get the couch with the window sill. Hunter LOVES to play in the window sill.
And in this particular room - we get the magnificent view of the Hollywood Sign!
Our first roommates in that room were a couple from Vegas. Their little girl was eight months old and yellow. Her liver was failing and they couldn't figure out why. They were in and out of the hospital in Vegas for 5 months before they came to Children's to try to get help with a diagnosis. Turns out she had Giant Cell Hepatitis. There have only been 20 cases documented in the world and only 7 have survived. They moved out on Christmas Eve and went to a hospital closer to home for treatment. They were actually not so fun and we weren't that sad to see them go. They were not very personable. They rarely said hello or acknowledged you when you saw them at the hospital grocery. They went to bed early, so we always had to be quiet at nighttime. Their little girl took naps often during the day so there were signs posted EVERYWHERE that she was sleeping and to please be quiet. Good times.
Here are two musicians dancin' up a storm for us at Christmas time. The little girl in the background was the one diagnosed with Giant Cell Hepatitis.
So then, back to the roommates, after the Vegas couple moved out, we got a really mean mom who's daughter was definitely taking after her. They fought like crazy and screamed back and forth and were sooooo not nice to one another. Thankfully they were only there for about 3 days. They wore me out.
Then another little girl moved in about the age of 11 and she was in the middle of her chemo. She was sick often and required the bathroom. So we lost our bathroom privileges in the room. It also was no fun listening to her throw up every night and cry. That lasted about 2 weeks before we were finally moved into isolation because of Hunter's cough. We were in the second round of chemo and had now lived at the hospital about for 55 days.
Then we were lucky enough to be in isolation for the entire 3rd and 4th rounds. So we were by ourselves and totally living it up like kings and queens.
You also get your own magnetic and dry erase board when you have your own room. Hunter's a big fan. Sometimes in the shared rooms, it's on the other patients side.
Oh yea, and Hunter gets to ram his quad into the walls when we are in "iso". No one to disturb and no babies sleeping.
Now the 5th round.........totally different story. I feel as if we are being punished for being near the end. It's like our limits are being pushed incredibly far right when we see the gleaming light at the end of the tunnel. First they moved us into room 413a, (the tiny side), where there was another family staying. Had no idea who they were and at the time didn't really care. All we knew was that we were back to living in a closet and had no bathroom or sink or room to breathe.
The room they moved us into the first night of the 5th round. Looks just a tiny bit cramped.
The little girl who was our roommate was such a sweetheart. She had ALL Leukemia when she was four and now she is eight and relapsed. She is going to get a Bone Marrow Transplant in three months and the donor is her four year old brother. By the time she was discharged she was in remission again. Yay!!! The mom and dad were there often and alternated sleeping there at night. Grandma and grandpa were also there visiting and helping and also a lovely uncle came to share some smiles. So that side of the room was usually always pleasant and full of good things.......except when she had to get her shots........ouch.......she had to get three at a time and based on the way her screams sounded.....you wouldn't want any.
So it turns out that they are our favorite roommates. Sweet! However, we still needed more space and lobbied for a bigger room. Zen ended up talking to the charge nurse 2 nights later and got us moved into an "iso" room again. We had actually already lived in this room and our Mr. Potato Head stickers that we put on the wall were still there. Well, that piece of heaven lasted all of three days. And then on Hunter's 20 month birthday, the charge nurse came into the room and instead of cheering Happy 20 month Birthday, she kindly said.......hi mom.....gotta move you today. Well.........it took everything in me to not run out into the hallway and scream every obscene word I know at the top of my lungs. I was so incredibly frustrated and annoyed and angry. Zen had already left and was gone for the day, so that meant I had to pack up and move all by myself. Hunter was on the run, and to make it worse, he was connected to the IV pole. So he kept wanting to go around the room and I had to keep following him so that his pic-line would stay safe and not rip out of his arm. I kept putting him on the bed to stay still and he just kept getting off. So it was follow, pack, pack, follow, pack, put on bed, follow, follow. Oh yeah, not to mention Hunter would unpack what I would pack every time I'd follow. Not a fun game after awhile. Especially when you're pissed.
This is what happens when Hunter is too rambunctious while carting around his IV Pole.
So THEN, back to the terrible moving story, they needed to clean the side of the new room that we were being moved to - so in the meantime, they put us in another room just to wait for a few hours. Holy crap. The patient in that room made me want to pack up and get the hell out of there and never look back. It was truly horrible. Not only was this 17 year old very unpleasant and unstable, but it just happened to be at the ripe 'ole time of when she had to go to the bathroom. She can't actually go IN the bathroom, she had to go in a port-a-potty next to her bed for collection. That's all I will say.
That's about when Zen came crashing through the door to deliver a much needed hug and kiss. I've never been so happy to see him. My mental frame of mind at that particular point was thrashed. I was lying in Hunter's bed with him sobbing hoping this would hurry up and end.
So then later on that day they moved us back in with our favorite roommates into the tiny little closet side. We lived like that for about a week until they got discharged and we finally got to move over to the B side!!!!
Life is bliss........and then..............in moves the snorer.
And of course the snorer didn't just come by himself. He brought his chatty kathy wife who talked on the phone in spanish for about 2 1/2 hours and his coughing son who cries a lot. They also weren't IV active. With us, whenever Hunter's IV goes off, we shut off the alarm and call the nurse. This happens multiple times a day. After a few weeks in the hospital you start to figure it all out. Well they've been in and out of the hospital, but for some reason, don't touch the IV to shut it off. Not only that, but since the dad is a snorer and his little boy was only about 3 - ALL NIGHT LONG we had to listen to the IV beep and beep and beep and beep. The dad never woke up!! Even with his son coughing in his face all night long! So Zen would wake up, call the nurse and say - "hey our roommates IV is beeping", and then go back to sleep. He didn't like that job. And needless to say, we didn't much care for them as roommates.
So once at midnight and again at 6:30 in the morning, Zen verbally exploded all over the nurses. Boy did he have his game face on. He let them have it for putting a coughing kid in our room when Hunter is just about to reach zero and have absolutely no immune system. Things were not pleasant for a brief moment. After he calmed down later on in the morning, he went and apologized. They also moved the coughing kid into another room later on that day. Instantly better.
We got to enjoy somewhat peaceful nights for about 2 days.
And now today in our 13th room, we got our 9th roommate. She is a tiny little baby with Downs Syndrome. I am not sure if she has cancer in addition to that or if there are other complications. But she's right on the other side of the curtain just hanging out.
And all was pleasant .........until 4 in the morning........LIGHTS ON......baby crying, baby giggling, baby staying up......and then the phone.......the mom actually started talking on the phone like it was no big deal AT 4 IN THE MORNING - and in spanish of course - so I couldn't tell if the conversation was ending or just beginning. The nurse came in and immediately told her she can't be talking on the phone and then we nicely asked her to turn down the light and she kindly didn't listen. Then the nurse went over and asked her to turn down the light and she actually growled or maybe it was a hiss. Whatever it was, it was a sound of unpleasantness.
So Zen just figured we'd watch TV now that we were wide awake with nothing else to do at 4 in the morning. More good times.
However, when all this is over, I can officially say that I've never been exposed to such sadness. I may speak lightly of the people around us from a roommates perspective, but on a human level, there are some terribly heartbreaking stories with lives honestly shattering all around us. We hear the emergency helicopter land on top of the building every time it comes and I can tell you it comes to often. I wonder every single time what's in that helicopter and how did it happen and what happens if they don't make it in time. Hurry up, hurry up.
And at the same time, there are lots of little miracles and lives being saved left and right. Tons of children walking out of here with a better outlook and a better chance at life. They have, so far, saved Hunter's life. Without them, he would have died. Modern medicine is amazing and even if his cancer comes back, I will not doubt for a second - his strength and courage and perseverance and ability to take it as it comes and defeat whatever evil comes his way.
Death of a Superhero
A Family's Story about Courage, Bravery and the Defining Moments of LOVE
Our sweet, lil' baby love lost his battle to AML Leukemia on March 8, 2010. We fought long, hard and very aggressively for 2.5 years, only to have his cancer come back for the fourth time to finally take his life. He was only 3 years old.
This entire blog is about Hunter's amazing journey. It's about his life and his love......his determination and his courage.......his absolutely, brilliant personality, and the affect he's had on people all over the world.
He's left an unimaginable footprint on this earth and has changed the lives of thousands of individuals. People who didn't realize how precious life was, now live it with extreme gratefulness. People who took every minute they get to spend with their children for granted, now savor every last second. And people who weren't quite sure what love is all about, now love deeper, love stronger and love with every ounce of their soul.
People all around the world have shared their love, their well wishes, their prayers and their inspiration, and we could have NEVER achieved as much as we did without them. We are humbled by their generosity & their true friendships & are forever grateful for every last person that has come into our lives through our experience with Hunter. He was our precious baby love who we loved and cherished with all our hearts and we are forever crushed and terribly, broken-hearted.
Dance in the clouds baby cakes. Mom & dad are watching proudly & you will remain so very close to our hearts for all of eternity.