To Our Community of Love & Support for the Amazin' Hazen:
There is just a hint of spring yet so much has been awakened - spirituality, our home as a new budding flower, and our son Hazen. Our
family spent some of our darkest days in a safe cocoon of sorts coinciding with the season's cycle of short days/long nights. We all
feel like pupas, though Hazen especially.
The Bug
On the eve of Scott's birthday just as he was being bestowed with a midnight birthday kiss from Suzan, we both heard some other heavy
breathing… coming from Hazen's room. Chills and sweats followed and we were immediately on the phone with the Pediatric Fellow on call. We
had just arrived home that afternoon from another long stay at the cancer center and Hazen pleaded, "I want to stay in my bed". Within
30 minutes, we were in the Memorial Sloan Kettering Urgent Care. (their version of an emergency room but much, much better) thanks to
our dear friends the Jaramillos, who drove us in the middle of the night. The staff immediately put Hazen on broad-spectrum antibiotics
as a prophylactic measure. After a most friendly visit by the pediatric oncologist, he informed us that Hazen might have a bug,
which meant we just bought a minimum of one week in the hospital (with good behavior). As time would prove, that night would be Hazen's
nadir.
After his second day as an in-patient, Hazen's fever stopped and there were still no positive growths from his blood culture that would
determine infections or bugs.
Finally, on the fourth day, our medical team broke the news that indeed his blood did grow a positive culture – a dreaded bug – or in
MDspeak, "a gram-negative rod bacteria whose species is yet unknown". It sounded scary but we didn't let it bug us (pun intended) though my
Darwinian scientific mind wanted to know everything about this particular creature's species, sub-species, phylum etc. etc.
In real terms, this bought us another seven days in the hospital and gave the docs an opportunity to fight the bug with target-specific
antibiotics.
Finally, Dr. Kushner identified the bug. He prefaced his pronouncement by stating "I'm glad we didn't know what species it was
until now, or I would have been really worried you guys- this was a bad one." By us coming in during the wee-hours of my birthday- the
first time Hazen presented a symptom, we were able to stop the bug in its tracks until targeted antibiotics could be administered later that
week. After the bug was named, we were told he had to have surgery that day to remove his Broveac- central line (the double catheter that
goes into his aorta and will stay in place for about 1 ˝ years). He was so, so strong as he fell asleep in my arms from the anesthesia.
During our stay, Hazen nurtured and enhanced the many relationships that he developed over the past six weeks at Memorial Sloan. Now this
time, he was able to talk, play, and actively interact with his "crew" which includes Yuziko (his music therapist), Angie (his physical
therapist), Mackenzie (his occupational therapist), Jocelyn (his dance therapist), and Jonathan (an 11-year old boy who has adopted Hazen as
a playmate: his 3 year-old sister has Leukemia). His crew has been checking-in daily for the entire six weeks even when H. was unable to
speak or walk. An amazing aspect of this is that Hazen remembered all of their names, conversations, and experiences even though it was
one-way interaction. There is so much power in friendship and love at all phases of consciousness!
Super Sunday
Hazen kicked-ass and did not present a fever or any symptoms for eleven days. Our docs let us go home on Saturday morning, just in
time for cartoons on the couch. Part of the bargain for release for good behavior was to administer two different antibiotics to Hazen
home through his new central line. The home nurse trained us on this new procedure, which involved an anti-gravity small medicine ball that
automatically delivered his meds. When it was finished the first time, Hazen said, "Dad, it's flat as a pancake", surprisingly repeating what
the nurse had told us during training that he covertly overheard. We ran the medicine ball four times a day in a little hippie-hemp-bag that Hazen wore sling style around his chest (really cute).
Our zenith occurred on Saturday afternoon and Sunday. This is what all had been waiting for since November. No, not the Super Bowl… a
PLAYDATE! Hazen saw his friends for the first time in twelve weeks. It was truly amazing to see both how Hazen was able to pick up right
where he left off and, how polite and sensitive his friends were to his new condition. Just as his parents are blessed, so to is Hazen
with great friends. Amazin' Hazen has been able to walk on his own two feet with no helping hands for part of each day. During his play
dates, he sat on the floor in either wide split or Zen lotus position. As always, little man Hazen maintained has magnetism and unique
charm, as both he and his friends were so overjoyed to be in each other company. Normality and routine are so vital to his healing- we
will continue to fight to have him home as much as possible.
Here is to six consecutive nights in a row at home- smashing our previous record of one night at home!
Favorite Hazen line of the week: Mom & Dad: So, Hazen, what do you want to be when you grow up?
Hazen: Hazen Kennedy
Mom & Dad: Come on Hazen, what do you want to be when you grow up?
Hazen: Peter Pan
The surgery to remove tumors is scheduled for March 2. We feel confident that his blood counts and other vitals will at a safe level
to undergo the procedure. Our goal is to stay home as much as possible between now and then to make our little warrior as strong as possible
for the surgery. Our teams of doctors believe that Hazen will start eating again after he recovers from the surgery, as he will feel
physically superior once the tumor masses are removed.
From what we know initially, the surgery can last from 8-14 hours. Our request for prayers and spiritual intentions will be sent out closer
to the date. As much as we do not look forward to a long intensive-care-unit recovery again, we want that cancer out of his body NOW.
How fortunate are we to have each other we three.
No matter how much we think, "we can handle this ourselves", the truth is, we must stand together like a grove of sturdy trees in the village
green. The sturdiest trees will still be standing, storm after furious storm.
Our family has been touched over and over again – by friends whose voices we haven't heard for quite some time, we thank you for asserting
yourselves into our lives once more. We have felt the helping hands of unconditional kindness from "strangers" or as the Irish say, "friends we
have yet to meet" to whom we welcome into our hearts and feel such optimism for the spirit of brotherhood/sisterhood being alive and well on
earth 2005.
Our own family, though far away from New York, you keep us all going.
To the friends who have traveled long distances to be with us, your aid has been so valuable as a source of relieving our local friends
that have force-fit the time it takes to help us into their busy Manhattan lives. You proved to be tireless and most notably loyal without taking any
"through thick or thin" vows before God. You have proved that distance is relative.
Our friends in the New York area, you are our family. You keep coming back to us day after day even after you spend your resources and scant
free time on our behalf. All of your tremendous support trumps any feelings of self-pity or sorrow on our part – you are all the finest
examples heroes to us, New Yorkers who are no-nonsense can-doers who love their neighbors and neighborhood. Hells Kitchen strong, Hazen
Kennedy strong.
To all, we stand tall together. Every gesture that you offer is received in our hearts and telegraphed to Hazen who lights up. Please
keep reminding us to take showers, eat, small talk, take walks, etc. Though normally done habitually, we tend to neglect some of the
mundane activities while on his hectic journey. Words never grow stale just as people cannot hear "I love you" too often. Understand that
this is a long journey – 18 months of intense treatment and we are in the fourth month. You are the crowd on the sidewalks who yell "keep
going, great job" to the marathon runners from mile one to twenty seven. We will keep going though tired and achy. Sometimes we'll cry.
All great journeys build character and inspire change and we never contemplated such a renaissance for our family. Hazen is our hero. Let
us all remain heroes to him.
Joy is listening to Hazen sing "This Little Light of Mine".
We are the Kennedy family,
Suzan Hazen Scott
- S. For those who can view, attached is a photo taken on Hazen's
birthday. We all thank you for your birthday greetings. 4 rocks!
