To the Brigade of Love for Amazin' Hazen Kennedy:
Room 406 is spectacularly perched over the East River of Manhattan, facing down island on top of the circulatory system that keeps a busy city beating. Though able to spy for miles in every direction, there is an unwavering still silence – far away from Hells Kitchen and its many things that go bump in the night. We are drawn to Hazen in this room 406 in a manner that is also unwavering, as parents do who love their children.
Arriving in the Pediatric intensive care unit on Saturday, February 19, we had no idea what was going on, just that Mr. H’s breathing was challenged with fever and being on the respirator with the tube was the best thing for him while everyone tried to figure out what the hell was going on. Tests of every bodily fluid, and scans of all sorts revealed nothing. They did rule out, however, pneumonia, a theory we heard darting through the air during the hectic transport process earlier in the day.
When doctors don’t know what it is- an infection, a bacteria, fungus, etc? they bring out the whole arsenal- a broad spectrum of antibiotics & antifungals and in tandem diminish the symptoms in any way they can. In Hazen’s case, they knew there was quite a bit of liquid in his lungs. They put in chest tubes-one in each lung. Over the course of three days over 200ml of fluid was drained from each lung – 400 ml total! The combination of the big arsenal, the draining, the intubation, /sedation, and the wisdom of the great Dr. Ushay of NY Presbyterian made Hazen better. After 4 ½ days of this, Hazen woke up – with tube down his throat and quadruple the regular doses of sedation.
Amazin’ Hazen woke up, sat up, tried to crawl out of bed, and fought like hell like a brave soldier waking up in the enemy’s camp, far from home. Dr. Ushay was so impressed with Hazen’s spirit, that he made the call to extubate him immediately, crossing his fingers in the process. He later confessed that he wasn’t sure if Hazen would be able to stay off the respirator at that point, but he wanted to “go for it” (what an 80’s expression) anyway.
Hazen’s first words on Wednesday after breathing tube is removed:
“I want to go home now”
Our champion made it through the night without having to go back on the tube…even though he still had three different sedations in his system which diminish breathing. Both Mom, Dad, and the nurse took turns doing Chest PT every hour – thumping him on the back and chest with this device that reminds me of an athletic cup, to make his lungs open up and promote coughing. We were so, so happy as Hazen made marked progress every single day. Yeah, boy!
Nearing the end of the week, the doctors still had no positives on the blood cultures, bronchial biopsy, or the potty cultures – even after six days.
Even though we were now in a different facility, away from Memorial Sloan Kettering,
Hazen’s crew still came through.
Many of his nurses including two nurse practitioners, two of his in-patient nurses, his neuroblastoma doctors, his surgeon, social worker, child-life specialist, music therapist, physical therapist, occupational therapist, (Note: as a New Yorker, it is our right to have a lot of therapists - especially mental therapists) all came to visit Hazen throughout our nine day stay at the other place. We also had many friends and even some family (thanks Rick) visit our party of three. By the weekend, Hazen was well enough to go – not home like he asked for, but to Memorial Sloan Kettering, our true second home.
Unfortunately, weekends are not the time for big work projects, even in hospitals.
We had to wait for Monday. On our transfer from MSK to NY Presbyterian, we took an ambulance even though it is only 100 yards away. I was so excited to find out that on the return transfer, we were going to be able to use the TUNNEL, a top-secret underground passage between the two hospitals that is only used for special cases that goes under the streets of New York City. I felt like a kid again, breaking the rules, going where I’m not supposed to go. I thought of Hogan’s Hero’s and the tunnels under the barracks. Our subterranean journey proved to be a very cool. (Come on, it’s the little things!)
Hazen was back in his second home and very happy. The POU was the place to be and we all never felt so happy to be going to a hospital. What a glorious thing it is to have a facility that treats the most serious children’s illnesses be so inviting and happy; a place that Hazen and other little heroes actually look forward to going to. They deserve all the praise, support, and money that they can possibly get.
During our nine-day stay in the PICU, I was only able to go to work for one day. Even that day was difficult as my mind and body were in two different places. My workplace, however, has been very supportive of our family, allowing me to work a flextime schedule through the long, 18-month course of Hazen’s treatment. This means three days per week.
Status
Well, the March 2 surgery date for tumor resection is not taking place. This time, there are many reasons: a) He just came out of intensive care; b) platelet counts are not at a safe level as MSK is very conservative about this; c) Our little man is in isolation for exposure to the chicken pox from Feb. 14. We all know he did not get the virus (thank God) but the facility requires a total of 21 days of isolation nonetheless. Our 21-day sentence is up on March 7. Currently, we are working with the Neuruoblastoma team to come up with an effective contingency plan. Most likely, we will start Cycle 5 of chemotherapy this week and reschedule the surgery once again for later in March.
We will have some test results forthcoming that will explain how well we are battling the cancer. This may drive treatment plans going forward. To this day, we don’t know the cause of the breathing problems. We do know that we are grateful that he is back to the same level as before Feb. 19 and doing very well.
Love Songs
The many ways that we have been touched by you is reason to believe in the goodness of humankind and we thank God. What a joy it is to be a part of this transaction of unconditional love from all. We are moved again, and again and are never, never jaded but constantly dazzled. Just as we play the same music over and over in the hospital room to get us through, your varied expressions of support is the mix tape that we play over and over in an endless loop. Music is precious to our family and is lifeblood to us. Bliss is watching Hazen wear a Walkman and listening to him sing, “Mommy is a Mermaid” (a family favorite) completely off-key and merrily spirited like a whistling, giddy cherub.
One of the challenging parts of this adventure is the journey itself- we have no idea if it is a marathon or a sprint. We really don’t know what the course is or how to pace ourselves; there is no map or designated rest stops. Duration- no clue. Never trained for this and we never knew that we were ever going to take such a journey. Out of nowhere, someone fired the starting gun and we were off. We know that someday, we will cross the finish line all together, victorious, if tired (and damn-good athletes too).
Just as so many were there in the crowd to send us off as the starting pistol was fired
and we proceeded forth into the great misty course ahead, you have stood by us as the miles have gone by. Please keep hollering your words and holding up the signs of support throughout this mysterious course. It’s the little things that can mean so much. We would really like to thank people personally and we will someday soon. Just know that every gesture of love penetrates us like body oil that can both sooth and maintain our strength.
Please stay in our lives as this boy will always stay in all of our lives. Each of us makes a difference as we keep fighting – strong. He is a superhero! Go!
We are the Kennedy Family,
Hazen Suzan Scott
- S. Hazen Kennedy’s name was prominently, if mysteriously, displayed among the special credits of the ABC Television Network’s showing of “NYPD Blue: A Final Tribute” which aired last night, March 1st at 9:00 PM EST. (Thanks ‘Uncle’ Dave)
- P.S – attached is another picture- this one is from the archives which I just rediscovered…a couple summers back in Central Park. I couldn’t resist J
