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, January 27, 2009

My Husband, my love, my bestfriend

When I said "I do" and chose a mate for life.........I had no idea.

I had no idea how much I would depend on him, I had no idea how much I would look up to him.....I had no idea that we'd have to carry each other through such sadness.

To go through an experience like this is so heart wrenching and's either all or none. And your companion is just as important as the medicine.

I heard him painfully sobbing in the shower the day we found out Hunter's cancer came back. Sorrow took over my whole body. We feel each others pain and we celebrate each others victories. And right now we are leaning on each other to feel each others hope.

We are in sync and are traveling through these halls of uncertainty with such love and strength and understanding and we will definitely come out at the end with a bond that will never be broken. He has my whole heart and my entire soul and I could not imagine my life without him.

Together we are giving our son light, together we are giving our son courage, together we are giving him a future full of a tremendous amount of love where our arms are always open and ready to embrace at any given moment.

My husband and my child are my life and they complete me in ways I could have never imagined. They are the tune that keeps my heart beating and the rythym that keeps me at peace. I cherish them, I adore them and I love them deeply.....always and forever.

Zen and I on our wedding day.

Photo by Chris Schmitt

Hunter's having a bad day

It's been a crappy day for the little guy.....and thus a crappy day for us.

He woke up bummin' and for some reason, just didn't have a smile. He was all giggles last night and laughed and played like the good 'ole days. So quite a change from last night to today. Let the roller coaster ride continue.

He has a really bad cough again and each time he goes into a coughing causes him to vomit. The lovely thing is that lots of flemmy, mucus seems to be coming out - so maybe it's for the greater good. I'm sure little man has lots of stuff in his body that just needs to get out. Another lovely thing is that Zen and I weren't the lucky recipients of the puke this time. Yay for mom and dad!!! No fun to smell like throw-up all day.

They immediately did a chest Xray to make sure that his feeding tube isn't causing him any discomfort or is in a place where it shouldn't be. But the Xray came back and the tube is in place. The everlasting pneumonia, however, is still there. Damn that thing.

So he's now back on oxygen. But at least he got a little bit of a break. The fevers have also subsided. So I guess it's 3 steps forward......2 steps back.....2 steps forward.....1 step back. Looks like that those will be our dance moves for the next 4-5 months. Thank god Zen and I are good dancers!

Hunter on a good day!

Monday, January 26, 2009

Oxygen............who needs it?

Hunter's been off oxygen for 2 days!! His lungs are finally strong enough to breath on their own! His pneumonia still seems to be hanging out, but it's not nearly as present as it was. YAY!!!

He's finished one round of chemotherapy and we'll find out in the next couple of weeks if he's in remission. He'll need to be in full remission for the Bone Marrow now we just sit and wait.

The Bronchoscopy results came back and so far nothing has grown. So that's also good news.

He was up and walking on his own for the first time today and that was WITHOUT ANY PAIN MEDICINE. Hunter's back!!!!

He's done a complete 360 since the first day we were here and he now throws down smiles all the time. He even does it on demand. Wow. He just steals our hearts every time.

One of the teams of doctors that hovers over Hunter on a daily basis to assess his condition and inform us of the plan for the day.

Hunter on fire the night before his Bronchoscopy.

Once again, Ernie accompanying Hunter on the way to his Bronchoscopy procedure. Such a good friend.

Dad saying goodbye and giving him one last kiss.

Off he goes.

This is where they close the door on Mom and Dad. I hate that part. I soooo wish this was a spectator sport.

Dad there to whisper sweet nothings into his ear as he wakes up.

Taking a nap after the procedure. Long day.

Waking up.

A good quote from Kung Fu Panda - "yesterday is history, tomorrow is a mystery, but today is a gift........that is why it is called a present".

Hunter featured on "Every Monday Matters"

Hunter 4 months ago when he was still in remission.

Hunter has lots of fans. I've basically become his personal manager. I have now started charging him two smiles a day and three poopy diapers. Only a mother would accept this as payment. So far he's paid up - but I might increase my fee.

One organization in particular has been especially supportive of Hunter since the very beginning. The organization, Every Monday Matters, was founded by a really amazing guy by the name of Matt Emerzian - he's truly fantastic and has added so much joy to our very unpredictable ride of terror.

Lots of people have left very loving messages and prayers on their site for Hunter and we are hoping they continue. I read them on a daily basis over and over and over again. I use to cry almost every single I smile.

Thank you Matt and thank you to all your readers - they've delivered strength and encouragement and tons and tons and TONS of much needed love.

Hunter's special message section can be found here on the Every Monday Matters Website. Please feel free to visit the site and leave him some more smooches!

Friday, January 23, 2009

Flt3 Gene.......what????

So......apparently the Flt3 gene is one that you never want to have over for dinner.

It's a bad one - and apparently has no manners.

It basically makes your prognosis of this deadly disease.....even deadlier. If your body has this gene - the chances of getting rid of AML Leukemia is slim to none.

Well guess what..........

HUNTER DOESN'T HAVE IT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

His results came back yesterday and he tested negative for this gene. Sweet.

Hunter was thrilled and couldn't seem to stop smiling, FINALLY! However they did sneak in a dose of Oxycodone, so I'm sure that helped.

Wednesday, January 21, 2009

The feared Cat Scan results

Can't quite say we were expecting good news.........but we certainly weren't prepared for the news that was delivered.

Something has very aggressively taken over Hunter's left lung. His pneumonia started in his right lower lung and seemed to be dissipating. Well it didn't go away. Whatever it was has now spread over to the left side and is causing the doctors to be very troubled.

To get a blow like that was rough. Hunter has been on heavy duty antibiotics now for 18 days. It's supposed to go away......not spread.

His little body is working and pumping so hard - just to breathe.

The Cat Scan did a number of scans and shortly after the doctors gave us the preliminary results. They suggested a Bronchoscopy based on what they saw. Whatever it is that has moved in to Hunter's lungs could be a bacteria or a fungus or something viral and it needs to be examined a little closer. We were told that it most likely was NOT the cancer. So that was at least nice to hear.

They performed the surgery yesterday and it went well. With the help of the bronchoscopy they were able to go into his lungs and extract some of the foreign substance that is present. Sometimes it can take up to 5 days to fully examine it and watch it to see if something grows from it to determine exactly what it is.

Every surgery always poses risks, however, in Hunter's condition, it's become very dangerous and life threatening. Forms are signed and the procedures are explained - but there are never any promises. Normal protocol. Because of Hunter's inability to breathe on his own and the fact that his lungs are swollen and contaminated - he has to now be intubated. That basically means that they need to place a tube down his trachea to protect his airways and provide a means of ventilation. He stopped breathing on his own on one of his last surgeries and they had to immediately intubate him at that time to save his life. Now, without question, they intubate him at the very beginning.

Scared to death and the drama continues. We often joke, instead of just getting the flu.......Hunter gets cancer, instead of just a cold......Hunter gets an pneumonia, instead of the antibiotics working.........his condition gets worse. Everything is full throttle with this kid. So I imagine by the end.......he's going to beat the shit out of this cancer.

Hunter has just received the "Happy Juice" and is obviously eagerly awaiting the Cat Scan. Good fun.

Dad was smart enough to download Sesame Street onto his iphone. I can't imagine who wouldn't want the company of Bert and Ernie on the way to a procedure??

Still watching.

.....and still watching.

And when he can't hold it anymore - dad helps.

And finally after surgery - he's allowed to eat!! He ate more in that 10 minutes then he had eaten all week. He's obviously very pleased with himself.

Monday, January 19, 2009

Saddness has fallen on so many......

I can't really think of how to start this off. Everyone wants daily updates and it seems as if things are changing constantly. One minute he's fine and stable.......another he's desperately fighting for his life. His pneumonia is not going away and there is something in his body that is causing very severe fevers. He goes from 101 to 104 degrees on a regular basis, he's vomiting often and he's exceptionally weak and tired. He finished a 3-day round of chemo last week and I'm sure his beautiful brown curls are going to start falling out again shortly.

He's been on oxygen now for 8 days and he also has a feeding tube going in through one nostril all the way down to his stomach. They've given him morphine twice for the pain he's experiencing with everything going on in his body. Just in the last 5 minutes he was stabbed with a needle twice to try to place an IV for the Cat Scan contrast to go in to try to locate the site of infection. There are no more large veins in his body that are accessible. So now the CT will be done without contrast. It's not as informative without the contrast, but they don't want to wait any longer. The infection needs to be found.

My mind continues to race.........sometimes it slows down.......sometimes I feel as if it just melts. I miss his happy face and his smile terribly. I'd give anything just to see a glimpse of it again on a daily basis. I miss holding him in my arms without all of the tubes and wires connected to his body. It's hard to snuggle when every loving squeeze could possibly cause him pain. I miss feeling normal.

Zen and I are exhausted. We try to alternate sleeping with Hunter so that at least one of us can get a good nights sleep. However, it doesn't seem to matter who's sleeping with him or not. It's hard to sleep. Constant interruptions, lots of vital checks throughout the night and we both basically sleep with one eye open to make sure Hunter's as comfortable as possible and always has everything he needs.

I know we will get through this. However, it's going to be like scraping our already broken hearts across a field of hot, burning coals. The field is long and the battle is more intense then I could have ever imagined, but on the other side.......there is light.

We've received extremely encouraging emails from so many others that have already had a child go through a Bone Marrow Transplant. Our LA Oncologist is also very optimistic and sprinkled that much more hope on our cupcake of fear.

We want to thank EVERYONE for all of the love, support, prayers and beautiful messages that have been delivered to us. I honestly look forward to them every day and it's what allows me and gives me the strength to keep on going.

I'm so sad and it hurts so much.

Hunter going in for his second Spinal Tap, (aka Lumbar Puncture). They'll be injecting Chemo into his spine to prevent his spine from being infected with Leukemia. They gave him the "sleepy juice" so out like a light as dad lovingly sees him off.

The Chemo injector. Here is Hunter's IV pole that houses all of his antibiotics, chemotherapy, fluids and feeds. Pretty intense.

Getting an Ultrasound on his lung. Trying to see if there is a fluid sac of some sort that might also be restricting his breating.

Much more relaxed when it's done. Hence the crossed legs. All he needs now is a cigar.

Our hospital room. This is where we'll be for the next 5-6 months. Zen's over there watching football. He's pleased with the top notch accommodations here at Doernbechers.

Hunter also a big football fan. Seems to chill him out.

We were finally able to get a smile. Took a while........but we wouldn't stop til we got one. I've wrapped it up and stuck it in my pocket for the next rainy day.

Wednesday, January 14, 2009

.....our hearts are broken

It's taken me a couple of days to get up the courage to write. I was hoping to never, ever have to type these words.

Hunter's cancer is back.

We checked into Doernbechers on Monday afternoon for his pneumonia hoping to be out of the hospital within a week. Hunter having a relapse was low on the list of concerns since he had just had a check-up on December 11th and came back all clear of any sort of relapse. But since the antibiotics did not seem to be doing the trick with the pneumonia, they decided to draw labs and check his cell counts for any kind of abnormal activity. When the blood test results came back, his cell activity was showing signs of something going on at the bone marrow level. It was then that a relapse was moved closer to the top of the list. It was still not confirmed until they put him under and did a Bone Marrow Aspirate. After research was done, they found that 45% of his bone marrow had been infected with Leukemia. It was invading his little body.......again.

In the last three days, Hunter has had blood drawn 15 times, has had his antibiotics switched 6 times, had one spinal tap and is getting another tomorrow, had two chest Xrays and 1 stomach Xray, had an echocardiogram, a Bone Marrow Aspirate and a Picc Line placed in his upper right arm. Wow. Rough couple of days and not going home any time soon.

While Hunter was having all of that done, Zen and I sat by his side in shock and devastation and cried and cried and cried. The tears wouldn't stop and the pain just kept getting deeper and deeper. I personally have felt sick to my stomach for the last 72 hours and my body has been on the verge of collapsing several times. My head is numb and my mind is not working too well and all I want to do is beat the shit out of something.

His precious, little, innocent body has been through so much and the thought of having to do that all over again is terrifying. Not only are we back to square one, but this next time around is going to be so much harder and so much more difficult on so many levels.

The bottom line is that Hunter is not going to be able to survive without a Bone Marrow Transplant.

He gets Chemo injected into his spine tomorrow morning and will start his first round of Chemo shortly after. The goal is to get him into remission to get his body ready for the transplant. The Bone Marrow Transplant is a risky procedure and still does not guarantee that his body will be cancer free. And we were told that his chances of survival are 56 percent.

Because of Hunter's genetic make-up, finding a donor is going to one of the hardest parts. They'll go on a worldwide search that consists of 11 million donors. If no match is found there, they will then move on to cord blood options. Tons of our family and friends have offered to be tested to see if they are a match. We'll know more details as to how to become a donor in the next few days. A great place to find out more information is up on - full of good stuff and you can see what Hunter is up against.

He's a strong kid and I'm positive he is going to fight like hell. He's a true champ.

I personally need to wrap my head around what lies before us and charge on. Today was a little easier and I'm sure tomorrow will be even better. He's such an amazing child and the thought of him having to go through any more pain just absolutely kills me. I know we have to be strong and positive and trudge I guess we will do just that.

Hunter when we were admitted on Monday.

Getting a routine Echocardiogram while watching "Cars".

Chest Xray in the room at 3am.

Hunter going through chest therapy to loosen up the fluid in his lungs and chest.

On the way to surgery.

Going into surgery after being sedated.

Hunter after surgery.

The long walk back to the room.

Apparently we'll be here at Doernbechers for the next 4-6 months. Several people have asked for the address with the floor and room number. The address is Doernbecher Children's Hospital, 3550 SW US Veterans Hospital Road, Portland, OR 97239. We are on the 10th floor, however, our room will change a time or two - so just put to the attention of Hunter Thawley, 10 South.

Thanks so much to everyone who has already called or written in showing their love and support. We need it now more than ever. We are frightened and unsure of what our future has in store for us, but Zen and I have rallied to pull it together for Hunter's sake. We are about to challenge a beast and we've got both arms swingin'.

Much, much love to EVERYONE.

Sunday, January 11, 2009

Bye Bye Leukemia...........Hello Pneumonia

Hunter's lungs infected with an Pneumonia

As if our hearts haven't ached enough...............

We are going on our 8th day of Hunter battling a very severe pneumonia. Kinda not fair. He is being a very good sport, as always, however mom and dad seem to be wearing a little thin. I think it's one of the few times that I have allowed myself to get angry and frustrated and pissed off at the world. I am so tired and over our little man being ill.

It started around Halloween when Hunter had the return of the 104 fever. Needless to say, we didn't dress up and go trick or treating. Instead, Zen and I laid over Hunter all night and sobbed, begging and hoping that it wasn't the return of his cancer. He ended up waking up in a good mood and seemed to be fine for the rest of the day and after. Lovely.

Then another fever hit at the end of November. He was down for 3 days. Seemed to pass.

Well December has been a whole different story. It's basically sucked. He went off all meds on Dec. 1st and was no longer being protected from any kind of viral or bacteria infection. A step most cancer patients have to take eventually. Hunter had his monthly check up at Childrens Hospital in LA and actually went to the regular Pediatrician for the 1st time in 15 months. Nothing was detected and he skated through his routine blood exam with flying colors. He came back Leukemia free and seemed to be further on his way to living a normal, healthy life. That was on the 11th of December. On the 17th of December, he was down again and was very sad and wasn't moving around too much and definitely didn't leave our arms the whole day. Obviously not feeling well at all. We arrived in Oregon on the 20th and he was still not enjoying life as usual. Seemed to pass and Christmas eve and Christmas day were great. He was ripping open presents like he's done it for years. Good times. Out of the 3 Christmas' he's had, this was the best one.

Hunter on Christmas Day.

Well Merry Christmas and Happy f'in New have an Pneumonia.

All of a sudden he developed a cough and a consistent runny nose and was getting extremely skinny. He'd lost 4 pounds. His appetite was gone and he wasn't acting his normal, happy self. New Years Eve rolls around and we end up canceling all plans to stay home with Hunter and try to get him better. Nothing was really working and he was getting 102 to 104 fevers on a regular basis. We communicated with our Oncologist at CHLA and she said he might have a walking pneumonia or the flu and that it wouldn't be a bad idea to bring him to the doctor. We went to Doernbechers on Monday and explained all of his symptoms, told them his history and explained what our Oncologist had said. At this time he was having pretty severe coughing attacks and some actually caused him to vomit. They took in all of our input and decided that the next best step would be do a chest/lung Xray. Low and behold........they found his Pneumonia. It has attacked his right lung and seems to have moved in and found a cozy little home. They immediately started antibiotics at 5pm and then all we did was sit and wait. The antibiotic that they gave him, Amoxocylin, was supposed to kick in quite quickly and we were supposed to see pretty immediate results. He did improve a bit, but 2 days later, Hunter was still not eating as much as he should, his cough wasn't getting that much better and he was now 104.......often. Back to Doernbechers for another chest Xray, followed up with a stomach Xray. The pneumonia was still there, but it had gone down in size by about 50%, so that was great news. However, the antibiotic that they were giving him was not strong enough to get rid of it completely. Because his tiny little body has had such mac daddy antibiotics with his cancer, they decided that he might have built up an immunity to less potent antibiotics. So in come the bigger guns. They started him on Cefdinir on Friday and now we are in the sit and wait period again. It's now Sunday and his cough doesn't seem to be getting that much better. He was on fire all day yesterday and a few times during the night. At 3am he was 102 and coughing up a storm. I've been able to get in 1/2 a yogurt for breakfast so far, but he seems to be turning away everything else. He also seems very tired. He doesn't appear to be getting better.

Back to Doernbechers 1st thing tomorrow morning to hopefully find a remedy.

I can't begin to explain what this is like. If anyone told me that it's possible for your heart to bleed..........I feel as if I know what that would feel like. I choke back tears on a daily basis and have the fear of losing my son hanging over me like a dark cloud. So many people have said that cancer can open your eyes and open your life up to an overwhelming amount of appreciation for all things. It changes your perspective. I believe that and we've definitely changed our lives, and things that use to be important......are no longer. Hunter, the quality of life, enjoying it, and being together as a family seem to have taken precedence. However, I sometimes also refer to it as the cancer curse and I'm now realizing that we have constant worry for the rest of our lives. Deep, terrifying worry.

That being said, I've gathered up all my tears and picked my heart up off the floor and will now move on with the rest of our day. The constant worry comes and goes and we have had several amazing moments with Hunter since we've left the hospital. And expect nothing but more. I'll hang out with him on the couch all day and try to feed him whatever he'll take. We'll try to make him as comfortable as possible and we'll try to make him smile. Yesterday we got a laugh by dancing around like monkeys. Maybe we'll try that again.

We will not be defeated.

Hunter during our Hospital visits.

Purple popsicle lips. They help with getting fluid into his body.

Hunter before the Pneumonia kicked in.