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.
Tuesday, April 22, 2008
4th Round Blues
I know I should definitely NOT write right now. I am going to do nothing but complain. I apologize. Today is the day that I think I am officially tired of hospital living. It’s now been 6 months since Hunter’s been sick and we’ve spent 120 days actually living at the hospital. I feel a little exhausted and tiny bit worn thin.
Hunter enjoying his 104 degree fever.
It’s amazing how when Hunter all of a sudden starts getting 104 degree fevers, frequently, our world shifts. Mentally, physically and emotionally. At least mine does. I can’t speak for Zen, but I know that last night was the first night that I’ve seen tears in his eyes for months.
My breakdown hit this morning and I cried behind Hunter’s back while holding him and then continued on and off for about an hour or so. It wouldn’t stop.
It’s constant worry. It’s wondering if the Leukemia is coming back and he’s going into a relapse. It’s the why me………why Hunter………why is this happening to us and when is it going to end.
I needed to take a break today, so I am now home for a couple of hours. Zen’s with Hunter back at our lush hospital pad.
There are so many things that I am grateful for, to complain seems unnecessary. But I’ll have to say that I am so tired of having to search for the car, because both of us completely forget where we’ve parked in the parking garage. I’m tired of eating cold food, or cafeteria food or something I’d rather not. Even when we order out and spend $40 on a meal for dinner, by the time it’s delivered or we pick it up and get it back to the hospital. It’s cold. There use to be a microwave on the 4th floor, but apparently there was a fire or near-fire every week due to irresponsible parents and kids not using the microwave properly, ie. burning popcorn. So it’s been removed. Bummer.
I’m so over sleeping on that freakin couch/bed. Our bed at home is so comfy and I miss it terribly. I’m tired of having to go out our room, down the elevator, and through admissions instead of into our own kitchen for coffee. Sometimes we actually make the trip in our pajamas. I’m sick of using public bathrooms or bathrooms that thousands of other people have used to wash my face every morning and every night. It’s amazing how some people just don’t have restroom courtesy. I’m tired of moving back and forth between our house and the hospital and even from room to room at the hospital. Right now we are on our 7th room. And you all have seen our moves. It’s not just a suitcase or two and off we go. It’s laptops, printers, tempur-pedic mattresses, clothes, food, office files, all our other personal stuff, ya ya….total bummer and a pain in the arse. Not to mention they can come in and tell you that you’ll be moving within the next hour or so….so drop what you’re doing and pack up.
I’m a little over random people just coming into our room at all hours of the day and night - the case worker, the play room people, the sweet little ole lady who still never remembers us after seeing us every week for well over 4 months now, (she’s a hospital volunteer and bless her heart for doing what she’s doing), the cafeteria people bringing up Hunter’s meals, the hospital counselor to tell us about parent meetings, someone coming in to possibly take one of our two tables that we have in our room, (only one table per room if there’s a shortage). We were soooooo lucky to have had three back in the day. Who would of known. And then of course there are the Doctors and Nurses that we are EXTREMELY grateful for – they’ve all been so wonderful and sincerely do an amazing job. But, even then, occasionally there are times when one has to creep into the room at midnight and four in the morning to drop acid in Hunter’s eyes. So needless to say, those visits we could do without. I’m looking forward to being at home where NO ONE comes in while we’re sleeping.
The famous "acid drops". By the 7th day, he's actually pretty use to it.
I could go on and on, but I’ll stop. Because right now I’m also thinking that tomorrow I am going to be loving the fact that we get to wake up with Hunter every single morning and hang out with him, regardless of where we are. I’ll be forever grateful to the doctors and nursing staff for monitoring him 24 hours a day and doing what needs to be done to ensure Hunter’s safety and healing. Just the fact that there is such a place as a hospital where we go and have our son healed and stay with him and have the amenities that we DO have – is a GREAT thing. The night staff starts their “graveyard” shift at 7:30pm and stays up all night long switching out antibiotics and checking his vitals, weighing his diapers, pre-meding him with Tylenol and benedryl…..yadda yadda. THANK GOD, because I wouldn't know where to begin to start treating Leukemia. I can make a kick-ass oatmeal.....heal Leukemia.......probably my weak spot.
...and I will have to admit that I was thrilled when the x-ray technician came into our room at midnight to take an x-ray of Hunter’s stomach, rather then us having to wake up and get dressed to go downstairs to the x-ray room. Talk about room service. Can’t complain.
Fun medicine time. This happens every morning and on the weekends every morning and every night.
Hunter's Pic-Line that is cleaned and rebandaged every Monday. That's the hole in his right arm where all of the Chemo and fluids are injected.
Peeling off the super glue tape and cleaning it with alcohol is his least favorite part.
I’m sincerely loving that Zen fits in the hospital bed with Hunter. Now he’s not so cramped up on the couch/bed where his feet hang off - he would also constantly hit his head on the wall - he obviously wakes up happier in the bigger bed.
So now I am going to shut my mouth and suck it up. We still have a long way to go and it’s no fun, and definitely not enjoyable, approaching it with the mental attitude I started this letter with. I actually just re-read what I had written in the beginning and it gets a little nauseating reading about one complaint after another. I’ll stop my boo hoo and count our blessings over and over and over and over. Thanks for letting me vent and thanks for keeping as many smiles on my face that I've had - you've all been a tremendous help.
Hunter getting "checked out" by one of his favorite Doctors - Dr. Tom. She's the one who perfomed his latest Spinal Tap. She's awesome.
He wanted to address a couple of concerns he had. She's a great listener.
This is where I slept with Hunter back when we first came to the hospital. I guess my couch/bed is actually an "upgrade".