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.

Friday, April 25, 2008

Hunter's busy day

It started at 8am with our nurse waking us up to start the "surgery process". He's going in for a Cat Scan and it's an official surgery because he'll be going under anesthesia. Because it's a Cat Scan, he has to drink about 16 ounces of contrast mixed with Gatorade to make certain things in his little body light up under the scan. In addition to that, they have to stick him and put in an IV in his left hand to push in more contrast just as he's about to go under.

Hunter with his red lips from drinking contrast and gatorade for two hours. Pucker up!

Here's dad entertaining Hunter right before he's about to get his anesthesia. We usually like to send him off with a smile.

Here's dad and Hunter in the recovery room. He woke up in a great mood!

After the Cat Scan, we got back to our room and I realized that his right arm with his pic-line is about the size of a watermelon. His pic-line has gone bad and looks as if it is no longer effectively delivering fluids into his artery. They've gone somewhere else or there seems to be a back-up somewhere. So now that has to be removed. The removing part is easy and it's really not even felt when the line comes out. The part that blows is that he's now going to have to get in another pic. He's already had one in his left arm and this latest one was in his right. So I guess now, we go back to the left. It's another surgery where he'll be going under anesthesia again for them to place in what will hopefully be his LAST pic line.

After that, we were told that his blood counts are a little low and they are going to transfuse blood. This is pretty easy - he's had a ton. He's just pre-medicated with Tylenol and Benedryl and just hangs out for three hours while it's transfused. Thank god for blood donors!!!!!!!!!!!

Here are Hunter's little feet that sometimes get tangled in his blood cord.

While getting blood, we had the pleasure of having these lovely musicians come in and rock out in our hospital room. Always time for a live performance!

Then it was "sitz bath" time. He doesn't seem to mind as long as he's got toys close at hand and Sesame Street on the TV.

....and then.................he passed out.

The Cat Scan results came back later on in the evening. It showed that Hunter has a little bit of an enlarged kidney and liver and that his lungs have collapsed a little. Nothing that can't recover and nothing that they didn't expect. So I guess it's no big deal. Sweet.

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".


Thursday, April 17, 2008

Hunter's on FIRE

Hunter's got a fever of 104+. He's lying next to me crashed out and has pretty much been low energy every since this morning. His fever started peaking its head around 4am at about 100. By 11 am he was 104. A fever usually means his body is fighting some sort of infection, so the docs have put him back on the 3 antibiotics he was on before. His hemoglobin is also low, so they are going to transfuse blood as well.

He's hanging tough and should only be bumming for a couple of days. Once his blood counts start to go up, he should start to feel much better. He sends smooches to everyone.

Sunday, April 6, 2008

Umpteenth Spinal Tap with a Splash of Chemo

Here is the little girl that we pass in the halls all the time. She's the "Welcome to the Cancer Floor" girl. Even though it's not nice, I think we both wanted to punch her in her face when we first arrived back in December when Hunter was diagnosed. We've since passed the anger stage.

Hunter getting prepared for his Spinal Tap.

Here he's been injected with the Happy Juice. It's the medication Versed that makes him laugh his ass off. He's always a huge hit with the doctors and nurses.

Dad is usually the one making him giggle. He does a great job.

Then everyone joins in and it's one big party in the spinal tap room.

If you look close here, you can actually see his spinal fluid dripping out of the needle. This is the fluid they check to make sure that the Leukemia has not traveled into his spine.

After that step, they inject Chemo into his spinal fluid to make sure that the Leukemia stays out of his spine.

Here Hunter is hanging on to the Versed and wouldn't let it go. He's a big fan. Versed addict at 18 months. The kid likes to get his giggle on.

Here are his id and allergy alert bracelets. They are on him at all times. The alergy alert is from when he had his first major reaction to the Chemo medication Etoposide back in the first round. Very scary.

Later on in the day after his Spinal Tap, he gets the major dose of Chemo........and they don't mess around.

Here are three separate lines delivering Chemo and fluids all at the same time. Those are connected to his Pic Line that is inserted into one of his major arteries in his arm - it goes straight to his heart.

Needless to say, he's exhausted. It's been a long day.

Saturday, April 5, 2008

Moving in day for Round 4

I was very excited to see the new elephant Children's Hospital had brought in for the kids. It always puts a smile on my face going up to our room.

Here is the first load on moving day. It usually takes us about a day or two to get settled. We are still in isolation because of Hunter's cough, so we have our own room! Yay!

This will soon be converted to my bed that I will sleep in for the next three weeks. We bring in our tempur-pedic mattresses and it makes it all good in the neighborhood.

Here is our bathroom that we are not supposed to use. It's for patients only. Hunter doesn't seem to mind sharing. You'd never know there was a full on jacuzzi tub with jets behind that door..............yeah right.

This in one of Hunter's favorite places. He's constantly looking through the window at the world outside. He tries to escape every time the door opens.

He covered the whole room in about 10 minutes. He checked every drawer, hook, door and knob to make sure everything worked. He's very thorough.

This is me chasing him around the room while he's hooked up to his IV. They usually give us an hour or two when he's not getting chemo or fluid to unhook him so he can run around freely. But, not this time. The chemo is so powerful that if he doesn't have enough fluid in his body, it could damage his kidney's. So he's hooked up almost 24 hours a day. Little man is DEFINITELY tired of that routine!

Pics from the 3rd Round of Chemo

This was Hunter on the day of his last fundraiser. He had lots of phone calls to make and asked if I would turn down Sesame Street so that he could hear.

The small bruises on his head are from his platelets being low. Just the slightest bump causes bleeding and they stay for weeks.

Hunter cruising the hospital halls on his quad. He's technically still not supposed to leave his room since he's in "iso" (isolation). But he's so fast, sometimes the nurses don't see him!

Here's tub time in the hospital on the hospital bed. It's more fun that way - although things get a little wet, it's better for mom's back.

Like father like son - totally crashed. I drew kitten whiskers on their faces with a sharpie. They never even woke up.

Hunter exiting the hospital on his quad. He rode from his room on the fourth floor all the way down to the parking garage. All the kids stopped and stared as he rode wheelies down through admitting. He cruised through like a sweet blaze of glory.

Once he got home, he had nothing but Poker on his mind. He's been practicing lots at the hospital in his down time. He beats me every time.

Tuesday, April 1, 2008

Little update

We checked in to the hospital yesterday for round 4 of 5. Hunter is doing great - no infection. Only a mild cough and runny nose. It's a job and a half to keep up with him running around the room. Yes he is running. More good news - we are in isolation because of the cough. Private room:-)
Got to run. I'm out the door to take some pictures at a BobGail event.