Hunter's Movin' and Groovin'

Here's Hunter in his new digs. Everytime he is out and about within the huge parameters of our hospital room, he needs to be wearing his helmet. When his platelets are low he bruises and bleeds very easily - and we'd rather not add anything else to the list. Plus it's a little on the cool side. He looks like a little skater dude.



Slowly starting to stand on his own again!















Just in case he gets too close to the DVD Player.

A prayer from OPRAH

I've requested a prayer from Oprah and am hoping she sends us one!

We can politely swamp their email inbox with Hunter by logging onto
OPRAH'S site.

In the middle of the page there is another link that says Share your personal thoughts and stories - EMAIL OPRAH. Click on the link and fill out the easy form.

The first words in the big box should read:

A Prayer for Hunter Zen

And then whatever little personal note you want to leave with Hunter's website at the bottom.

www.healinghunter.blogspot.com

If and when you do this, send me a note so that I can keep track of how many submissions it takes to get a prayer and some more healing energy!!

XoXo

********************************


We love this little one so much and once you read about him, you will completely understand. Keep doing greatness Oprah and thank you for considering my request. Love and abundance to you and your loved ones,
Hunters 'Auntie', Corrin Phillips


I set an email to Oprah. This was the fist time I read your blog I didn't know you had one. And to be honest I didn't think I had the stomach to read it. As you know something really happens to you when you have kids. A strange vulnerability. You guys are so brave. And Hunter is so courageous. What a beautiful spirit. I am glad to hear he is in remission and pray round three goes smoothly. We love you guys and we are on the prayer patrol!!! All our love and prayers
Steph and Jeff


I sent a Prayer for Hunter to Oprahs email. Lenore, you are simply an inspiration, you're a brave soul and a WONDERFUL Mother. I think of the three of you every day! It would be very exciting to see someone like Oprah to raise the energy and group thoughts to Hunter's healing! Much love-
Matt


Hi Lenore. Here is what I posted for Oprah. A PRAYER FOR HUNTER ZEN
Our dear friends have been struggling with AML Leukemia. Their son Hunter Zen was diagnosed with this deadly disease at 14 months old. Never in my life have I seen two more positive people handling this situation than his parents Zen Todd and Lenore. Their story is inspirational to say the least. Here is their website. www.healinghunter.blogspot.com Good Luck! We love you guys & continue praying for you.
Tammi


Oh you bet I sent a prayer to oprah! Love to you and the whole clan!
Caryn


Did the Oprah thing, though I dont really understand how her prayer is heard any louder than ours. Good luck will come to those who work for it.
John and Leisa


It's a done deal.
Cindy


I have sent in the prayer request to Oprah and will pass along this e-mail to friends and family to make sure we get in all the requests that we can. I am so happy to hear that he is back home and I am sure it feels great for you both and of course for Hunter! That is so great that he took his first steps solo again. I will continue to send my prayers for him every night. I hope you guys enjoy your time home and thank you for keeping me posted! Many wishes and prayers!!!
Sarah


hi, I am one of Erin Hirsch's friends and on the e-mail chain for Healing Hunter.... I sent Oprah a request!! Warm wishes for happiness and health~
Tara


We put our request in. She is such an amazing woman, there's no doubt that she will say a prayer.--lotsa love,
Matt and Ann Marie


Hi honey - i sent my message today...and you know me, it was a bit longer and emotional than they want....ha! F#@k 'em. I love you! Give the little man a smooch for me and I'll see you this week. xoxox
J


I sent a message to Oprah and told her how much your spirit and strength moves me and that A Prayer for Hunter Zen from Oprah would move you guys. =)
Love you guys. Hope to see you again soon. Love
Jen


I told the big O to take care of you guys. She better listen. XO,
Chris


okay, I couldn't figure the Oprah thing out, but I went to your blog...nicely written...and looked at Hunter and sat and prayed for him myself. It's only a basic cable host prayer, but I hope it helps. Was really struck by how beautiful and soulful he is. He seems to be going through this with such courage. If Vivien was strapped in like he was for that MRI she would have been hysterical. It's like he's helping you guys out being so calm. I loved the toast at New years picture. You two are great that you see the good admist the bad. I really believe that he is going to beat all of this. love,
Daphne


I just sent a message to Oprah asking her to hold Hunters little hand and pray. Hugs, Molly


Done! Love to all of you,
Mary Kay


Just did mine! Much xoxoxoxoxo,
Tania


I sent a request to Oprah today!
Brenda


I just sent a message to Oprah. We had a great time with you guys. Hope to see you again soon.
Matt


Oprah has my note. Gotta love that lady.
Scotty


You guys don't know me but I follow your blog because I'm new to photography. I went thru a similar situation with my daughter 9 years ago. My daughter had to have a liver transplant. She is now 12 and doing fine. I know Hunter will pull through I have him in my prayers. If you ever need a pen pal just shoot me an e-mail. I also e-mailed Oprah to say a prayer for my little buddy Hunter. Thanks for sharing your story.
Levell


This is great! I sent an email…hope it works out!!!
Katie


I just wanted to let you know that I sent Oprah an email. I sure hope Hunter is doing well. I think of your family often. Talk to you soon.
Helene


Hi Lenore, just zipped a message off to the big O for Hunter. So glad to see he's doing better!
Eileen


Done!
Tom


You dont know me. I got a link to your story from [b]ecker's blog. I have been following your story since. I just wanted to let you know that I sent a quick email to Oprah as you requested and I hope that your prayers are all answered.
Chasity


Dear guys! I've just emailed to Oprah. Good luck! We are praying for your precious baby and very happy he is doing better!
Julie, Elie's sister


Hey Guys! Just to let you know—I emailed Oprah. Hope you are doing well!
Brian

Hi Zen and Lenore, I just wanted to send you a note to let you know I am thinking about you and your little guy! I have been following his story and just looked at his updated blog (i too sent a message to the Big O) He is such a cute miracle! Thanks for your inspiration. I hope to attend an event soon!
Terran Lamp

Hunter Video - Getting a Cat Scan

Check out video of Hunter getting a cat scan. Late in the video you see pixelation which looks like radiation on the screen.

The Cat Scan Baby

Limbo

Day 15 of round two.

Things are going well. Hunter is responding to the second round appropriately. His blood count is still coming down and his immune system is almost at zero. He is completely vulnerable to infection but so far he has not been infected. Double "knock on wood" as we hunker down for a 3-4 week wait for his blood count to come back. Once the white cells get back to normal they will do another bone marrow test for Leukemia.

In the beginning of round two he was on the vomit comet but as the therapy program progressed he was able to "hold his lunch".

The best news is how physical he has become. He is getting so rambunctious that he is hard to manage. Even towing the IV station he can get completely across the bed before you can manage to grab him. This was clearly understood a couple days ago as he did a face first slider off the bed. We expected the worst yet he barely cried. What a tough son of a gun.

The next day his left arm (the pick arm) was red and swollen. We feared a broken bone but he displayed no pain. The doctors decided that the pick (the IV tube that was inserted in his vein all the way to his heart) was in his body too deep and that his heart was causing back pressure and thus a build up of fluid in his lower arm. They pulled the pick out 1.5 cm and the swelling went down in about an hour. I wish everything in life responded that quickly to action.

On the terror front - Hunter had another choking session that scared everyone. Lenore gave him his usual dose of oral medicines but for some reason he began to choke. He turned red and then blue before I could get out of the room to scream "Hunter is choking". Within seconds the entire nursing staff came rushing into the room. I gathered Hunter in my arms and violently pounded on his back. As the doctors poured into the room Hunter vomited and began to cry. What a relief - I almost wanted to pass out. The entire staff let out a collective sigh as they patted us on the back and tentatively left us in our startled condition.

Even with all the action - our current hospital status is "routine". We are just another family living in hospital limbo - hopeful for the best.

Round 2 of Chemo is Hard

Hunter is in remission but he is not out of the hospital nor is he out of danger. The ten day long second round started yesterday. It's already taking it's toll. One of the side effects of this round of chemo medicine is fever and nausea. Hunter has both. He is suffering again from 104 degree fevers and low energy. Late last night he vomited. He also gets eye drops every four hours during the therapy. They must burn like hell because he screams like a banshee.

It's tough seeing him go from getting better to getting sick all over again. We are certain it will pass - just not soon enough.

AML Diagnosis - TimeLine

October 5th - Normal Pediatrician Visit – Hunter is in perfect health. Measured in the 60th percentile for weight and well over the 100th percentile for height. There is minimal fanfare but we are the epitome of proud parents. He is immunized for Hepatitis A.

October 20th - Hunter takes his first 8 solo steps – He amazes us as he crosses the room without assistance from one parent to the other. These are Hunter’s first and last solo steps to date.

October 21st - Hunter wakes us up during the early morning screaming in obvious pain. We comfort him until Lenore finally gets him to sleep. He displays obvious pain in his stomach by curling his knees into his chest. It continued all day punctuated with a dull achy moans emanating from Hunter. We are concerned but not worried.

October 24th - Emergency Pediatrician Visit – While sleeping, Hunter’s moans escalate to wailing. The pediatrician thinks Hunter’s stomach pains might be indicating a gastro intestinal complication. She sends us to the Emergency Room to get a stomach x-ray. Honestly, I almost think she is over reacting but anything to put an end to his discomfort, By the time they were done Hunter had received a chest X-Ray, stomach ultra-sound, multiple blood tests and a diagnosis of the stomach flu with 101-degree fever. We are told to go home and hunker down because the flu can last longer than 10 days. It’s 10 PM.



October 31st - Halloween and Hunter is still sick.
(Over the course of the next few days Hunter seems to get better and then regress)

November 13th - Finally, it’s back to pediatrician. 101-degree fever. They prescribe a 3-day stool sample. We diligently deliver three big bags of pooh. They need to rule out bacteria and parasites.

November 16th - 101-degree fever.

November 17th - 101-degree fever.

November 18th - 101-degree fever.

November 19th - Emergency Visit to the Pediatrician – 101-degree fever.
With all due respect they are clueless. It’s not their fault. Hunter is presenting his symptoms in an unusual way but what is certain is that it’s unusual that the flu would last this long. It’s also starting to get worrisome due to the lack of walking. We are told to go home and make sure we hydrate the little man.

We go home and as we walk in the door the pediatrician calls and suggests we check ourselves into the Emergency Room. It’s 5 PM on a Monday and we are less than thrilled, but we drive back to Emergency.
Another Chest X-Ray
Stomach X-Ray
Ultrasound
More Blood Tests
They don’t know what is wrong but they decide to give him a pre-emptive antibiotic shot in the leg. They discharge us at 6:30 AM the next day.

Avoid the Emergency Room on Mondays. It’s the busiest day of the week. Some how everybody manages to deal with the pain over the weekend.

November 21st - The next day we head back to the pediatrician.
They give Hunter another anti-biotic shot in the leg and send us home. We are really starting to get concerned. He is not walking, crawling, or getting better.

That evening our pediatrician calls to tell us that she can arrange for us to get a room at the Children’s Hospital Los Angeles. It’s Thanksgiving and we have family and friends visiting. I'm pulling my hair out. However, she convinces us that it's prudent. Honestly, she didn't have to do too much convincing.

To our great benefit she used to be the lead charge pediatrician at the CHLA during her residency. With her pull we were admitted with no wait. We were told stories about people waiting several days and up to weeks just to get their sick kid a room. We strolled right in like rock stars. Then we see our room. It's a crib/cage cramed into a corner of a tiny little room with three other patients. My bed is a fold out chair. Let the good times roll.

November 22nd - He gets another chest x-ray. Now he has a 104-degree fever.

November 23rd - The 104-degree fever continues. They take a CAT scan of his head, chest & stomach.





November 25th - Wake up, it’s a 2 AM spinal tap for Meningitis. The student doctor scheduled to perform the spinal tap gets a thorough vetting from me. In the nicest way possible I grill her experience. She mentions that she has done more than thirty. I instantly remember the lead guy telling me he had done more than 300! Unfortunately, he is not here now. I’m concerned and I sense inexperience and self-doubt. She is not fighting for the job and even begins to make excuses for possibly messing up. I ask if she wouldn’t mind us waiting until morning? After all, you are sticking a long, cold needle into the spine of my little boy. She agrees. I’m happy to wait until tomorrow during the day when the entire staff is present and alert. Lenore interjects and kindly vouches for the girl. They had a previous conversation. This girl had convinced Lenore of her competence. I always try to trust Lenore’s “antennas” so I stepped aside. As it turns out Lenore was right. The resident doctor performed a perfect spinal tap. When I say perfect I mean perfect. They test the spinal fluid and the more red blood cells in the fluid the more bleeding that was caused. Zero red blood cells were found in Hunter’s spinal fluid. This is called a Champagne Tap, due to the fact that it is so rare the lead doctor is supposed to buy a bottle of champagne for the person that performed the tap. This was her first and the lead guy still has yet to perform one. Well that’s cool, now please heal my boy!







November 26th - Echocardiogram of Heart – slight enlarged heart valve – but it could be nothing. Or it could be an infection.

November 27th - Hunter is dosed with radioactive isotopes and they perform a Bone Scan.
Two hours later we are informed that they found a “mass” in his left femur and two ribs. What is the mass and why is it in multiple locations? I don’t know much but I know when to be terrified.



Infection is possible but so far nothing has turned up positive for infection. Please let it be an infection. Please!
Another chest X-Ray
Two different super antibiotics are started to cover the possibility of bone infection.

November 28th - Hunter needs a bone marrow biopsy. They are going to puncture both hip joints to get the precious fluid. It requires Hunter to get his first Operating Room experience and full anesthesia. We are surprised and thrilled to learn that Hunter loves the “happy juice”.




Just before parent/son separation they give the patient a dose of something good because Hunter just starts laughing and smiling. It was such a relief to see him smile after more than two months of frowns and moaning – even if for just a second as they wheeled him down the scary corridor. All you can do is hope for the best. Hunter survives.



November 29th - A team of doctors ambush us as we get off the elevator. I immediately look for the ID badge. I recognize the title – Oncologist. My heart sinks as I realize the gravity of the situation. They inform us that Hunter doesn’t have Leukemia. However, they top that sentence with the news that he does have some mysterious cell that they are unable to identify. They subtly mention that It appears to be malignant. That is a not so subtle code for Cancer. Inside I’m thankful that it’s not Leukemia but silently my terror builds from my limited knowledge of horrific bone cancer statistics.

November 30th - Suddenly, we are thrown a change up. The entire Oncology team comes to requests a meeting. It’s impossible for me to accurately describe my apprehension and fear. As a life long adventure and extreme athlete I’ve faced many life-threatening moments, however I have never faced anything as horrific as learning the fate of my child. They tell us that after an exhaustive international consultation the team is 99% convinced that Hunter has AML Leukemia. Are you sure?

Hunter gets his second dose of full anesthesia for an MRI of his bone “mass”.

November 31st - We are informed that Hunter requires his first red blood cell transfusion. Three hours later the color returns to his cheeks and lips. His energy is optimistic – is that possible?



At 3 AM they perform the 2nd spinal tap to check for Leukemic cells in his spinal fluid. We clearly get the picture that it would be horrible to find Leukemia in his spine and brain. The concurrently inject his first dose of chemotherapy into his spine.

The 104-degree fever persists. (Actually he is much hotter. The temperature gauge only goes to 104 and Hunter is so terrifyingly hot that the skin on his back almost burns your hand to touch – I have never before felt a human body this hot to touch).

December 2rd - It’s back to the OR for a left femur bone biopsy. Originally they planned to have hunter in a full leg cast for 6 weeks but due to the fact that he wasn’t walking they opted for a full leg splint. It lasted 6 days before I took the law into my own hands. Hunter got the cast removed prior to the due date, much to the osteopath’s dismay. He lived.



December 6th - Today Hunter received his first intravenous round of chemotherapy. Again we had to suffer thru a unique and terrifying event. Hunter had a major allergic anaphylactic reaction to the first bone marrow annihilator. Not more than two minutes after the chemo drip started - Hunter started to violently choke. He immediately went from brown to red to the brightest red humanly possible. I scooped him up in my arms and pathetically began to pound on his back just in case he was chocking on something tangible. The shocked but prepared nurse screamed for Benedryle and it seemed like the entire nursing staff came to his rescue. Carts of supplies instantly rolled into our room and drugs were dispensed despite the strict protocol. Again, Hunter survived and to celebrate we high fived the nursing staff.

104-degreee fevers still persist.

He was infused with platelets (The part of your blood that causes clotting).

December 16th - Hunter finished round 1 of chemotherapy with no vomiting or mouth sores.

The 3rd spinal tap is performed to again check for Leukemia in the spine and brain fluid.

December 18th - It is determined that Hunter is skinny. No kidding. We are instructed to feed him fatty foods. Mayonnaise, butter, peanut butter, cheese, chocolate, condensed milk, etc are encouraged.

December 21st - Due to the fact that Hunter is still suffering from high fever and pain, another radioisotope bone scan is ordered. More lesions are found. It has spread from his left leg to his right, from two rib bones to multiple rib bones, to his upper right arm and most worrisome is the lesion in his spine. We are destroyed. I finally feel like it’s too much. I am truly devastated and I begin to feel like the inevitable is coming. Lenore and I find it nearly impossible to keep it together. The “Rabbi” comforts me as I blubber down the hallway. He’s a kindly orthodox counselor – I lovingly call him the Rabbi.






Hunter also gets another x-ray of his right leg and an ultrasound of the same.

December 25th - It’s a family Christmas in the Hospital.
Hunter is finally showing some normal signs of life. He rips into his presents, tearing the wrapping off of each like a seasoned Christmas veteran.
Another red blood cell transfusion.

More anesthesia for another MRI of his right leg.

January 2rd - It’s back to the OR for the 3rd time for another bone marrow hip biopsy. Is Hunter in remission?




Hunter crawled for first time in two months and stood in the crib for about 10 minutes!

January 3rd - HUNTER IS IN REMISSION
He has less than 5% Leukemic cells in his bone marrow. We are informed that we will not be going home between sessions. Hunter is doing so well that they are going to start round two of chemo right away.

January 4th - The second round of chemotherapy is started at 10:30 PM tonight. This level of therapy will last a total of 10 days with an expected 4-5 weeks of in hospital bone marrow recovery. Cheers to clean marrow!

Hunters Hair

Our great friend and celebrity hair stylist - Mateo of Argyle Salon and Spa - made a hospital call to give Hunter his first Mohawk. Hunter lost most of his hair on the sides and everything on the back of his head so we turned him "punk".








The nurse said that in all the years she has been doing this line of work, Hunter is the first baby she has ever seen that didn't cry during the obligatory cancer cut. The nurses love Hunter almost as much as we do.