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, January 4, 2008
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
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!
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Please tell me something that I can do to help. I know I don't know you but I want SO badly to help, to be of service in some way. Please tell me something that I can do.
I am praying for you constantly, you are never far from my thoughts. I hope that is encouraging, at least a little.
Hi, this is Rachel, Loren Scott's girlfriend. I'm so glad to hear that Hunter is in remission. That's great news. I think about your little guy everyday.
I just wanted to pass on some information that a friend gave me. My friend has done some volunteer work in the pediatric center at Memorial Sloan-Kettering Cancer Center in New York. She says that they are the best hospital in the world for treating children with Leukemia, especially AML, and that Dr. Boulad is a miracle worker. www.mskcc.org
Hunter, you are such a great fighter! Well done!
Guys, you are awesome parents. As I was reading this blog I tried to imagine what you've been through for the last 3 months... But your spirit is unbelievable and your family is so solid. Hang in there!
Happy Birthday, Lenore!!! I hope you had a chance to celebrate it with Hunter, Zen and friends.
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