FEB 20

To Our Community and Guild of Love & Support for Amazin’ Hazen Kennedy:

Change in Weekend Plans

Back home on Friday night after nine hours at Memorial Sloan Kettering’s Pediatric Day Hospital, Suzan felt that slumbering Hazen was breathing faster than usual. It was a just a moment from mom and dads precious bedtime when we called the Pediatric Fellow on-call at MMSK to describe the hurried pace of H’s breathing. We counted 56 breaths/minute. Dr. Neal was concerned and asked us to put the phone up to Hazen’s mouth to hear for himself. He affirmed Suzan’s opinion and pronounced those two dreaded words we don’t like hearing late at night- “come in”. It was not until Hazen was propped up in our laps, the snap on his Elmer Fudd hunting cap firmly clasped, that he awoke and said, “do we hafta go? I wanna stay home!”

Minutes later Lil picked us up and we arrived quickly and safely at our…second home.

Dr. Neal was the same fellow on call last weekend when we paid our last late night/early morning visit, as Hazen needed blood and platelets. Neal is a sweetheart of a guy and a hell-of-a-doctor, staying with us far from his post and calmly settling-us-in the clinical setting of the Urgent Care section. He is also conservative and proactive as a medical professional, unlike some others who have tended to be cavalier (don’t worry, it’s nothing) or as the French say “laissez faire”. Working with Neal, we could not figure out why the breathing was labored. He ordered us a room upstairs in the observation unit anyway. Hazen was now fully awake and looking for action, his breathing seeming normal while awake. We proceeded to watch the 9-inch swing-arm hospital TV for the next 8 hours. (2:00 AM-10:00 AM).

Saturday morning (10-ish), we moved upstairs to the Pediatric Observation Unit or POU (pronounced ‘Poo’ as the staff childishly loves to repeat). The POU was where we wanted to be – Hazen knew that his room would have a VCR for “children’s shows” as he refers to them instead of the many hours of overnight infomercials and motorcycle modification shows we were forced to watch on the 9-incher. Hazen was so excited when I brought him the tape “Jaffar Returns” (the sequel to “Aladdin”) as he has just been introduced to the whole phenomenon Disney since starting our adventure on November 18 -A Whole New World. The entire time, Hazen was fiery, active, and breathing normally. After an hour of watching, Hazen fell fast asleep – expected because he had been awake or ten straight hours from the middle of the night. Unexpected was the desaturation of his oxygen levels moments later. We gave him an oxygen mask to help, hoping that his breathing would stabilize. Quickly, monitors were placed on him, and a decision was made to intebate (put him on a respirator). We agreed, as the taxing effect of working to breath so hard on Hazen’s heart and lungs is not worth the risk. Neal and Suzan were right as usual- taking action way before the manifestation of any problems.

The next four hours included the intebation, the introduction of a bronchoscope to see what was happening in the lungs and take a sample of fluid, and the decision to transfer Hazen to New York Presbyterian Weil Cornell Medical Center. Memorial Sloan is a cancer center, and as such neither has the capabilities nor the facilities to treat patients in need of intensive care. Fortunately, New York Presbyterian is located immediately across the street, proving to be one of the shortest ambulance rides on record.

We are all together at this moment in room # 406 for now 24 hours. This is a Pediatric Intensive Care Unit or PICU (pronounced ‘pick-you’ or as the French say, Pue’que). I am trying to think of the joke here…(“picu very much”). This is kind of a “deja-vous all over again”, reminiscent of the beginning of our journey back at Mt. Sinai – four weeks of being on a respirator in the PICU. Like that segment of the journey, Hazen is completely sedated. At this moment, labs are being done to try to figure out the cause of his respiratory challenges. The initial theory was pneumonia, which has since been discounted. We may find out within the next 48-72 hours.

Hazen’s line of the week:

Hazen: (un-prompted) Who is Jesus’ dad?

Us: (looking at each other) Joseph

Hazen: I thought God was Jesus’ father?

Us: (looking at each other) Right.

Back to the Bridge

Last night we broke the NY Presbyterian rule of only one parent spending the night in the room and simultaneously broke the record of slumbering in the worlds smallest sleeping space for two adults. Our family was blessed with two special visitors today – Momma Maria and Father Baker both of whom have “found” us along this Tour de France we are on. Healers, lovers, spiritual uplifters.

Our Amazin’ Hazen “woke up” this morning as we tried to shift

his position, motioning with his head that he wanted to get the heck outta' here. The medical staff has doubled the level of sedation and recognized how much of a fighter he is. Keeping him sedated in this situation is important though it is difficult for us.

Suzan just came back with a boom box so that we fill the room with the Celtic lullaby music that was such help in getting us all through those long November overnights at Mt. Sinai. As we have learned, Hazen is aware of everything even under sedation and paralytics. We will fill the air with music and love and not speak medically in front of him.

As we sit, Hazen lies on our left, the East River and that 59th Street Bridge (ah, that bridge again) on our right. Room #406 happens to be situated as far east as one can go on Manhattan Island and would bring in hundreds of dollars a night as a hotel room. Our window view is even more spectacular than the last previously described- the bridge is closer and dominates in presence – its spans seem within hands reach. Distant cars scurrying to get to this metropolis look like beetles on a conveyor belt as the Sunday traffic slows the inbound migration. We feel warmth from the fluidity of the East River that is running almost directly underneath our vantage.

The reflection of shimmering city lights on the water hasten hope in our hearts as we look upstream. Blinding shiny diamond spots of sunshine twinkle by day, the same ones Hazen and I saw the ducks swim through at the Central Park Reservoir just a week before this adventure began. I returned to that same spot again one week after he was diagnosed and could feel God there. The same ducks Hazen and I spied from a distance swam directly to me, upstream in a blinding river of light. I asked God to bring them forth, and so they came as I prayed for complete healing and recovery. The shiny blinding diamonds were the light we both needed and asked for.

Our March 2 surgery date for the removal of Neuroblastoma tumor(s) will now be postponed. We don’t know how long we will be here in the PICU at New York Presbyterian but will look at this time as a good rest stop for Hazen on this impromptu marathon. Please keep our little boy in your prayers and thoughts throughout this time as we look forward to returning to both our course against the cancer and our community life in Hells Kitchen. We never ever get enough of you checking in with us in the many ways that you do. A common pattern is for support to taper off after the initial phase of diagnosis. This course is a long one and we will never tire as long as we see you holding up the cardboard signs that remind us to drink and keep going; as long as we see your smiling faces and hear those shiny words of encouragement from the sidewalks of the endurance journey.

For you New Yorkers, Hazen has had ten blood transfusions this week, four alone in the past 24-hours. If anyone has the time or ability to donate platelets or blood to his bank supply, right now is a good time. This is a gift that directly helps so much. I found it so comforting when I saw him using the platelets that I had donated- one of the few direct ways to help him. We all thank you donors for the previous gifts that have gotten us this far. He especially needs the platelets at the moment, using it about 3-to-1 to the blood. Please call (212) 639-7643 for more information and designate the Hazen Kennedy blood bank.

Cell phones are not allowed in this unit which is proving to be a good break.

Therefore, you can leave messages on our cell phones and if there is an urgent need to contact us, please call the room at (212) 585-7425. The well-wishers line is a true bright spot that we always, always listen to ad nauseam. We graciously thank all of you for staying with us and keeping Hazen close to your hearts. Our family will always keep our doors and hearts open to you as life unfolds the mysteries yet ahead for all of us in community. We appreciate you reading these many tomes of our curious life.

Always touched by you, always strong - we savor rainbows, we believe in miracles, live for each day, dance and sing as if no one is watching or listening, try seeing the world through our children’s eyes; are happy for what we have, and are blessed. Pass it on.

We are the Kennedy family,

Suzan, Hazen, Scott