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.

Monday, December 31, 2007

Hunter is Better!

The last info was bone scan - bad.

However, from a clinical standpoint Hunter is acting much better. He is playing non-stop. Giggling, laughing, dancing, and blowing kisses to the chicks. Most importantly, he has started to motivate. He is rolling over and almost crawling. His arms are weak but he definitely wants to get going. This is a major change in behavior. For the last month and a half he has either been too sick or in too much pain to move anything more than his head and arms. However, ever since the bone scan scare he has been all over the place.

The doctors still don't know what caused the bones to deteriorate. The oncologist thinks we may never know. That being said, Hunter is feeling so much better that he nearly pulled his pick line out of his arm (a pick line is a surgically inserted long term IV line that prevents Hunter from having to be stuck with a needle every time they need something in or out of his blood). When the pick started to pull out of his arm blood came gushing out but Lenore got it stopped right away and the nurse assured Lenore that it is still viable. Thank goodness because if the pick line came out they would have to put him under anesthesia again and reinsert the tube up his vein all the way to the heart. One less thing is one less thing.

So regardless of what is going on with Hunter's bones we are in a wait and see period until they retest his bone marrow for Leukemia. Most likely we are looking at late next week. At that point if he is in remission we will continue the chemo full blast. If not...well we face that if it comes.

Three cheers for remission!

Friday, December 28, 2007

It gets worse before it gets better

The bone scan happened yesterday. I could tell just by looking at the computer screen during the scan that it wasn't good news.

The reading came back today and unfortunately the bone lesions have spread to multiple spots. The left leg has done some healing but still shows damage. However, his right leg is now much worse than his left leg ever was. The accompanying x-ray shows that part of his bone in the right leg has been eaten away. It may or may not be long term damage - that has yet to be determined. He still shows the lesions on his ribs and new lesions on his upper right arm and one infected vertebra.

If you remember, Hunter had a "mass of leukemia cells" in his left leg and two ribs. I use the quotation marks due to the fact that we still don't know what the lesions were or are. They did a bone biopsy on his left leg but still no bacteria has grown nor have they been able to determine if it was a mass of Leukemic cells or osteomyelytis (a bone disease). So if the chemo is working and the Leukemia is subsiding - then the idea that this "mass" was leukemic cells is less likely. The only known explanation is a very rare bone infection called multi-focal osteomyelytis.

However, the infectious disease doctor came in today and he seems perplexed. He doesn't see this kind of multi-focal (multiple locations) osteomyelytis in children his age nor in AML patients. He decided to not comment further until after the MRI of his right leg that will hopefully be done today. He also mentioned he is contacting specialists around the World for anyone that has seen a case of multi-focal osteomyelytis in an AML infant.

At least the oncologist is hopeful that we are making some progress towards a better understanding of the situation. However, when it comes down to brass tax - he is just as unable to make a confident diagnosis. He also mentioned he is consulting with a renowned children's AML doctor in Oakland for his input.

The osteopath still needs to put in his two cents. I'm afraid he will be just as confused as all the rest.

Ultimately, we are dealing with a very unique case of disease. None of the doctors have seen anything like this before and they are actively looking for answers.

Hunter is destined for the record books.

Thursday, December 27, 2007

Special Christmas Day Packages

The Santa that came on Christmas day was the best looking Santa Hunter had seen all week. He was super jolly and had that Santa Glow. I honestly didn't think they'd let Santa on the floor due to the dust mites and bacteria that might be growing in his beard, but low and behold......Santa came bearing all sorts of gifts for Hunter Christmas morning. However, the thing we were most grateful for was the bag of Red Blood Cells. Those came bright and early and always make Hunter feel a hundred times better. As you'll see, he had no problem opening up all his presents.

Tuesday, December 25, 2007

A few reasons to be thankful on Christmas Day

1. Hunter smiled this morning.
2. Hunter still has hair. I know I said it yesterday but we are so thankful for the little things.
3. Hunter has gifts coming out of his ears - when a visitor comes by he sticks out his hand expectantly - it's funny now but soon we will have a monster on our hands.
4. We have friends, family and even some people that have never met us - that care, pray, contribute, feed, and visit. We are overwhelmed by all the love and support and we don't have the words to express our sincere appreciation.
5. Hunter didn't get a deep leg thrombosis for Christmas.
6. We are in a wonderful children's hospital.
7. We are living in the biggest room on the cancer floor - kindness and small bribes go a long way.
8. Our room mates were lucky enough to be discharged on Christmas Eve and now we can be loud night owls again.
9. Mateo has a DVD player to replace the one Hunter threw overboard. No guarantee's on it's safe return.
10. We have a bathroom in our room. It's against the rules for the parents to use the bathroom so of course we never do - uh hum.
11. Hunter didn't have a fever after 10 pm again.
12. We have a bottle of champaign and OJ hidden in the closet.
13. The cafeteria is open until 4pm so daddy won't go hungry.
14. The parking is free on holidays.
15. We have Tempurpedic travel mats and pillows.
16. Our nurses and doctors really care. They are great people.
17. Hunter poops - seriously.

Merry Christmas and thank you to everyone!

Monday, December 24, 2007

Chistmas Eve - Day

Hunter's MRI showed no growth of the brain hemorrhage. Good news. His neck is also not asymmetrical. More good news.

The fevers are back but not as bad - around 102. He didn't have a fever past 10pm last night. Good.

He still has most of his hair for Christmas. That's cool.

He still has a lot of pain but it seems to be getting better. The doctors are concerned with his pain and they ordered another radio-isotope bone scan. Nothing like getting a radio active injection and then recording how much you glow.

Last night I was passed out cold - exhausted from taking pictures for 22 hours straight - but Lenore reported that Hunter was playing all night. In fact she thinks he is playing and moving better than he has in months. He doesn't get up, roll around or move his body much but at least now he is picking things up and throwing them off the bed again. He's got a pretty good arm.

This morning he is looking over at me and smiling. What a boost to our Christmas Cheer!

Friday, December 21, 2007

MRI Day of his brain

As I was running my fingers through Hunter’s hair waiting for his MRI, it was coming out in my hands. Today is the day that it’s officially starting to fall out. Definitely not a fun thing to see and it’s almost another slap in the face as to what is really happening.

His MRI today is for the blood clot they found in his brain two days ago. The doctor’s didn’t seem to think it was anything to worry about and just want to do the MRI to follow up and check on its progress. So I guess we should only be slightly terrified.

For whatever reason, he is still not wanting to crawl or even move around in the least bit. He continues to cry and moan each time we change his diaper, which makes us think that the little man has something else ailing him. It could be his slightly enlarged liver or spleen, it could be the Leukemia, he could just be sore and achy from the Chemo or it could be an infection, fungus…….apparently the list can go on and on.

We’ve now lived here at the hospital for over a month. I have to write the level number on my hand every time I park the car to remember where it is I parked. It’s all starting to run together.

Every time Hunter leaves his room he has to have on a green mask. He is only allowed to leave for procedures when his blood levels are extremely low or at zero. Needless to say, he won't be seeing Santa this year.

The odor of McDonalds french fries is almost always present. With it being the ONLY restaurant in the hospital, other than the cafeteria, it is frequented often by the visitors, patients AND doctors. We are there now on a regular basis getting Hunter fries. The hospital nutritionist has told us that he now needs to gain weight and needs to eat anything that has lots of fat, like peanut butter, sour cream, mayo and chocolate. Zen was courageous enough to mix a whole packet of syrup into his peach yogurt. That came up about 2 hours later. All over my pillow from home. Nice.

Here we are above going back to our room for the night. Hunter was a total trooper during the entire process today and once again - took it like a stud.

I’m sitting here now starring right at him and he has a smile on his face. He’s my precious little baby boy and the joy and tenderness and love he’s brought in my life has been a truly amazing experience. I will never allow him to give up and he’s well aware that life has only just begun.

Posted by Lenore

Wednesday, December 19, 2007

Healing Hunter Fundraiser

Lots of love and support was present at Hunter's first fundraiser. Hosted at Kado – where the food was simply delicious. The entire experience was truly exceptional. I was never a fan of sake, but I sipped a little of almost every kind they had us taste and I was definitely amazed at how delicious and refreshing they were.

Cool cat Ira and the fabulous Wendy Parker smiling in the background. Wendy organized this event and we are sooooo incredibly grateful and appreciate all that she did and can’t thank her enough. It was a great night.

Ira, "I just wanted to say that on behalf of Sophaleena and myself that we found it a privilege to be with you two on this night. The courage and dignity in which both of you have held yourselves during such a trying time is so admirable, and operates on a level that we have never seen. We lend our support, love, and good energy. So, stay strong and keep up the positive vibrations. We will see this through!!!"

Lenore with Actress and Cover Model, Molly Culver, and Bob and Gail of BobGail Special Events.

Bob again with the legendary rock star Paul Stanley of Kiss. By the way for those that don’t know, Paul is an extremely talented painter as well. His work is very cool.

Lenore and Zen with Paul Stanley and his Wife Erin. Paul and Erin are the proud parents of a studly little boy as well. We did a photo shoot of them recently and he was quite the ham!

"You are all in our thoughts and prayers. We can't wait to see Hunter smile!" Erin & Paul

The very accomplished Jennifer Gendron, (Co-Owner of Touch Massage Boutique in Beverly Hills) with Megan Driscoll, who can chef her butt off. Her food is amazing.

Spencer Robinson, Paramount man, John Oropallo, mac daddy producer, and Cher Ferreyra, an extremely talented actress whose credits go way beyond and was recently featured on Veronica Mars.

Cher, "I just wanted to say that you guys are amazing. You both have inspired me on so many levels through-out the years, and it never ends. Thank You for existing".

Molly and her stunt man husband Clay Cullen. One of Zen's newest dirt bike riding partners. He's had a smile on his face ever since he got back from his last dirt bike ride. FINALLY, someone else who can keep up with him!!!

"Hunter is a strong soul and we are pulling for him every day!! Go Hunter GO!!!". xo Molly & Clay

Zen and I enjoying our first night out together. Thank goodness for Grandma and Grandpa being in town. Only lasted about 3 hours, before we went back to the hospital to hang out and snuggle up with our little man for the night. He cuddles like a champ.

Short Lived Bliss

Yesterday morning, Hunter woke up in pain again. The blood transfusion from the night before must have worn off. His pain seemed to be all over but most acute in his right arm. He almost refused to lift his arm off of his body. Suddenly he is a lefty.

Lenore also seems to think his neck appears stiff. The doctors agreed and decided to do a preliminary CAT scan of his brain, sinuses, neck and upper arm. They are most concerned that the Leukemia has spread to his spinal fluid and brain.

The scan came back and showed a smallish bleed in his brain. It doesn't appear to be too serious - no tissue damage to anything critical but they gave him more platelets to make sure he doesn't bleed anymore. The scan also showed a possible abnormality in his neck. Asymmetry to to be exact. This is concerning because the Leukemia cells could be grouping together almost like a tumor and causing his neck to become messed up (at least as I currently understand the data). I'll speak to the cancer doctor (oncologist) this morning and he should provide a more detailed explanation.

Anyway, we are headed to the MRI room and full anesthesia for Hunter. That always makes me nervous. I'm also going to request a lumbar puncture (spinal tap) to make double damn sure that he doesn't have Leukemia in his spinal cord and brain. I doubt I'll find any resistance to that idea.

One step forward - two steps sideways...

Tuesday, December 18, 2007

A few moments in the Hospital

Good News - Finally!

Hunter has been fever free for 3 days and nights! Whoo-hoo! What a relief.

Although fever free, yesterday morning he was so low energy and seemingly in so much pain that he didn't want to be touched. He would scream when we changed his diaper. He spent most of the morning refusing food. It was totally depressing and I watched Lenore crying over her baby in desperation as Hunter moaned. It was another low point for sure.

The doctors and nurses started discussing the possibility of giving Hunter a narcotic for the pain. I was resistant to that idea but I was also tired of seeing Hunter miserable. I didn't know what to do.

Then we saw a little blood coming from his nose. Not usually a good thing but what it did was start the doctors down the right road. They immediately ordered red blood and platelets.

I had a plan to go for a quick dirt bike ride in the afternoon to get a little exercise and to free my mind. I was reluctant to leave Hunter feeling so poor but I felt assured the doctors had things in control and that over-all, Hunter was stable. So I went anyway. It was honestly the first time in more than a month that I was able to stop thinking about Hunter's situation. I was starting to feel mentally and physically pent up and aggressive. Two hours of intense off-road riding with stunt man Clay Cullen and his stunt buddy Casey alleviated all of that frustration. I felt like a new man. Thanks fellas!

When I returned to our hospital home I saw a different baby. He smiled as I walked in the room. He was eating. Lenore took a break and went to the grove to do a little Christmas shopping. I spent three or four hours alone with my boy - just playing and hanging out together. His lips were red again. His behavior was that of the old Hunter - happy and content! Although he still wasn't moving much on his own I could pick him up and he barley let out a protest. Truly, a relief. It feels so good to see our son again.

Thank goodness for life blood. Thank goodness for modern science. We are so fortunate to be dealing with this disease at this time in the modern World. For that we are eternally thankful!

Saturday, December 15, 2007

What is AML Leukemia ?

Leukemia is a blood disease.

Essentially, Leukemia is an uncontrolled growth of a malignant blood cell that originates in your bone marrow, almost always a type of white blood cell. Leukemia's direct translation is "White Blood".

Instead of forming into a mass like many malignant tumors, Leukemia spreads through your bone marrow and quickly pushes out the good blood cells - it's almost like an all-over blood tumor. As Leukemia spreads throughout the body it can eventually manifest in a particular area causing severe pressure and pain. The liver, spleen, lymph nodes, central nervous system, kidneys and gonads are all subject to the spread of Leukemic blood cells.

Although Leukemia affects people of all ages and far more adults than children - it is the most prolific children's cancer - accounting for about 35% of all pediatric cancer.

Children's Leukemia usually manifests as one of two different types - ALL (Acute Lymphoblastic Leukemia) and AML (Acute Myeloid Leukemia).

ALL affects about 3000 children in the US per year. In 1962 the five year survival rate was about 4%. Currently ALL Leukemia is touted as one of the most survivable children's cancers with a 95-98% initial remission rate and an 80% five year survival rate.

AML is known as the "bad" Leukemia. It affects about 500 children per year in the US. Currently, the initial remission rate is high at about 80%, but unlike ALL, AML Leukemia has a history of coming back. With an aggressive chemotherapy regimen and possible (highly toxic) bone marrow transplant, AML has a stingy 40-50% long term survival rate.

Our situation is simple. We must provide every opportunity possible for Hunter to become one of the positive AML statistics!

We have a new mission in life.

Friday, December 14, 2007

Chemo Day 9

Day 8 was uneventful yet still hot. He had a 102 fever at around 8pm. However, it broke quickly and it only happened twice instead of three times. And for the first time in weeks he didn't get hot during the night.

Today on day 9 he had a light fever of 102 early in the morning and it broke quickly. He didn't suffer again with a fever all day until about 8 pm when he became hot to the touch. This time he registered a blistering 104. Again, our son is a hot tamale.

The good news is that even during his 104 fever his mood was upbeat. He smiled regularly and I think I even heard him laugh a little. Maybe it was a laugh - maybe not - but at least he's not moaning. Thank goodness.

Thursday, December 13, 2007

Chemo Day 7

Hunters fevers dropped to around 102-103 degrees. He didn't have a fever all night until 8 am - so that is definitely an improvement.

Just to be safe the docs started an anti fungal. It usually takes 2-3 days of anti-fungal treatment to see a difference. A CAT scan was done and thankfully no fungus was found.

My thoughts are that he doesn't have an infection and it's just the Leukemia that is causing the fevers, but then again I'm a photographer not a doctor. The doctors do seem to think we should have seen more reduction in the fevers so they are still a little nervous. They mentioned that the main reason for fatality during AML chemo is infection and not the chemo.

He is officially neutropenic - meaning he has almost zero white blood cells and is completely vulnerable to any infection. We need to be very careful not to bring anything back. I've never washed my hands so much. Lenore and I entered this process as well adjusted individuals and we will leave - obsessive compulsive germaphobes!

Wednesday, December 12, 2007

Hunter Pictures

This is Hunter on his first day of chemo. We were able to get a smile but believe me we had to work hard.

What do you suppose he is saying in this picture?

Bye bye.