Friday, January 29, 2010

Feels so good to be home

As exhausted as we were from such a whirlwind trip to NYC, we couldn't wait to get back home to see Nicholas. We got on the road as soon as we could Friday night. The next morning, Grammy and Poppie brought Nicholas home and the boys were reunited...

at last!

Memorial Sloan-Kettering Cancer Center

We arrived at the Ronald McDonald House in NYC around 12:30am.

The place was very welcoming and beautifully decorated for the holidays. After sleeping through the second half of the ride, William woke just in time to check out the place when we arrived.

Friday, December 18th

It was so nice to be out of the hospital, even if we were at a Ronald McDonald House far from home. William's hair was just crazy that day...I tried many times to wet it and get it to lay flat, but it had its own agenda.

The Hope Mobile took us door-to-door to Memorial Sloan-Kettering Cancer Center. Little did we realize that RMDH is just 6 blocks from the hospital - super convenient!

Ready for our next adventure!

MSKCC has a team of four pediatric oncologists who specialize in neuroblastoma...and only see kids with this form of cancer. There is also a pediatric surgeon who only performs surgery on neuroblastoma cases. Given the rarity of neuroblastoma, we sought to travel to MSKCC for a second opionion. (The team of 6 pediatric oncologist at Upstate Hospital have treated 3 other cases of neuroblastoma over the past year or so.) The doctors at Upstate had told us William's tumor was inoperable due to its size and complexity. They recommended we follow the Stage 3-Intermediate clinical trial, which would involve 8 rounds of chemotherapy (every 3 weeks) - over the course of 6+ months. Before agreeing to that treatment plan, we wanted to be sure William was receiving the utmost care for his needs (not to mention the thought of chemotherapy for my 6 month old was more than I could handle deciding). We couldn't think of a better place to bring him!

It was a gorgeous, crisp winter morning in NYC.

Thanks for the lift, Hope Mobile.


Just after arriving at the Pediatric Day Hospital, we got to witness a big donation made specifically for the neuroblastoma team. After reading about all their credentials, experience and published studies it was like seeing celebrities for us.

Dr. Kushner, Dr. Kramer, Dr. Cheung & Dr. Modak

There's a gorgeous playroom filled with every possible toy on the other side of the bottle wall.

It was definitely an eye-opening and humbling experience to be amidst all these other families who are also dealing with their child with cancer. This was at the end of the day when it was nearly empty, but usually its just packed.


Ahhh, a giant fish tank. William is really becoming a fish fan - they seem to be the main attraction at hospitals and doctors offices.

The staff at MSKCC was amazingly child-centered and welcoming. We felt as though they gave us superb attention and time, from the receptionists to the nurse practitioners, oncologist and the world-renowned neuroblastoma surgeon, Dr. LaQuaglia. Dr. Modak (oncologist) listened to our detailed account of William's previous presentation, reviewed every bit of information we brought from Upstate and that was sent earlier in the week. He thorough explained to us their treatment philosophy. Sloan's team emphasizes focus on using minimal chemotherapy and radiation on children, due to its toxicity. They also are working on the most innovative treatments for this disease, including immunotherapy, an approach that destroys neuroblastoma cells by strengthening the child's own immune system. Their primary focus is to surgically remove the tumor, or as much as possible without using chemo unless absolutely necessary.

We felt very fortunate we were able to be seen by such reputable forefront experts in this disease that has made our William so very sick. Unfortunately, the surgeon, Dr. LaQuaglia did not feel as though the tumor could be removed at this time, due to its extreme size and its encasement around many vital vessels and nerves. Dr. Modak and Dr. LaQuaglia told us they wanted to present William's case at their Tuesday tumor board meeting on the 22nd and get back to us as to their final recommendation.

And so, we packed up and headed back to the Ronald McDonald House. But first, Fred had to get his fix for NYC street food!

As lousy as the circumstances were that brought us to Galisano Children's Hospital, we really were in the lap of luxury, in comparison to most hospital experiences. Our room at RMDH was a little different...

The hospital social worker put it best when she was helping me make housing accommodations for our visit to the big city. Describing RMDH as "a hotel without housekeeping" was right on...you have to make your own beds (they provide sheets and blankets) and wash all linens and towels, dust, vacuum and clean the bathroom before checking out. Our room as definitely cleaner when we check out than when we arrived!

We're outta here!

December 17th 6:40pm

Just shy of 2 weeks in the hospital, we were all more than ready to leave the hospital. Unfortunately, we were not heading to the long-awaited comforts of home, but left the hospital parking garage to drive directly to NYC for a second opinion scheduled for the following morning.

As much as I had so deeply wanted to just rush out the hospital doors with William and pretend the previous 2 weeks had not happened, I sincerely recall how scary it was to even think of leaving the hospital. In some sense, the annoying vitals every 4 hours around the clock, the bothersome daily bloodwork at 4am, the oncologist's exams at daily rounds (as brief as they often were) and even considering how little I felt like my opinion was respected regarding William's needs... being at the hospital did give me some sense of security. At least he was finally getting the attention he needed for as sick as he was and at least the experts were paying attention to my baby's health. All the sudden, I questioned if I could take care of him...everything seemed so incredibly different two weeks later. I had every imaginable fear rushing through my mind uncontrollably.

Fortunately, in some odd fashion, our time frame was so tight to make it to our 11am appointment at Memorial Sloan-Kettering Cancer Center the next day, we had barely enough time to pack up our mini hospital apartment and get on the road.
William seemed to sense this trip to his favorite elevator was different than the others.


Our frequent evening nurse, Melissa gave us our final dressing change training (literally, just minutes prior to us leaving) and wrapped up our discharge orders. It was a rush to get us out the door -just 2 hours prior to this, William was under anesthesia for the second day of his MIBG scan and an endoscopy and colonoscopy performed by Dr. Karjoo.

Clearly, William recognized his old familiar spot in the car.

A hour and a half into our trip, a notorious poop explosion required a stop. Suddenly, the realness of all that we had been through seemed to hit us like a ton of bricks during that car ride to NYC. As good as it felt to be "free" it seemed as though our lives would never be the same again...

Scan Day #2

Day #13 - our last day at Galisano Children's Hospital. William was scheduled for his second day of MIBG scanning, a scan in which he is injected with radioactive iodine and the scanning process detects cells specific of neuroblastoma activity throughout the body.
Thankfully, Aunt Angela and Poppie joined Mommy in keeping William happy for the 6+ hours of pre-anesthesia prepping.

Nothing like a delay at neuclear med to top off an awake and hungry 7 month old!

Finally done and comfy in his recovery cocoon!

William's Godparents

William's godparents, Great Aunt Elaine and Uncle John, were tremendously supportive through William's hospitalization. They visited everyday and always brightened our spirits.
Uncle John even perfected the famous rocking technique and developed a love-affair with the Boppy (we know what to get him for Christmas next year!).

video

Recovery Room

Day 1 of 2 of the MIBG scan. The scan lasted nearly 2 hours. Finally, at 7:30pm, my baby was back in my arms in the recovery room.

With so much stress in our lives, Daddy was ready to plug himself in for a good jolt.

Heading back up to our home-away-from-home.

Another day of testing

Once again, the difficult fasting in preparation for another long scan requiring William to be placed under anesthesia. Its always a small miracle when he falls asleep for a bit. No matter how uncomfortable it may be to hold him or what kind or awkward position he fell asleep in, we never dare to move him (or stop swaying/rocking).

This day was particularly hard, since his scan was scheduled for late in the afternoon as opposed to an early morning slot. We had finally made it to 5pm and there were no signs of our call to head down to nuclear medicine. Thankfully, Poppie was there to help keep William's mind off of eating.

Poppie is second in line for keeping William happy, just behind Mommy. That baby loves his Poppie, just like big brother!

Dr. Hannan

December 16th
As William was fasting for yet another round of anesthesia for day 1 of his MIBG test, we ran into our beloved Dr. William Hannan. Dr. Hannan took excellent care of our baby during his days in Pediatric ICU.

Sleeping in

December 16th
9:40am
After a long, restless night, William finally settled down around 6am and slept through morning rounds with Dr. Kennedy. Perfect timing, buddy.

Gotta get that in my mouth!

Every 4 hours, vitals were done on William. You could always tell how he was feeling based on the fight he'd put up to get his hands on the thermometer. His favorite nurse, Sandy used to let him play with the coil cord - oh, the small joys in life.

tasty Rudolph snack

Once the whole food allergy theory was smashed, we went forth and finally gave William his first baby food experience - pears! He liked it!

Nightly View

As difficult as our nights were, it was nice to see Crouse's clock tower lit up. William would often stare at the lights as we lay in bed.

Elevator Junkie

This boy is probably the world's biggest 6 1/2-month old elevator fan! He's watch everything so intently and listen for his elevator girlfriend's voice to announce each floor.

This night, Aunt Angela was hanging out with us when we got a late night munchie craving for the hospital cafeteria. William was more than happy to go along for the ride....the elevator ride, that is.

The anticipation of the wait (look who won't take his eyes off the elevator!)...

Sometimes we'd just take a late night ride for the fun of it!
Finally, its time!

video

(seriously, this was taken well after 11pm.....good times for the boy who doesn't sleep!)

Passing time at the hospital

William, nearly 7 months old

Another patient, Samantha, gave William this blow-up reindeer (she didn't like it because it wasn't Rudolph). This silly thing kept him plenty entertained, as he sucked on its antlers and squishy legs.

Checking out the Christmas decoration in the treehouse was always a fun time for William.

Poppie definitely put a few good miles on the stroller keeping William pacified.


Once in a while, we ventured off the floor, like this night when we went out for dinner at the cafeteria!

Special Visitor to Room 27!

Sunday December 13
After a difficult morning rounds (yeah, more like a full-blown confrontation) with the oncologist covering in-patient that week, I think the charge nurse felt badly for me and offered to seek an exemption to the "no children under 18" rule instated at the hospital. Nurse Beth pulled through and got Nicholas through the doors for us!
He was SO excited to visit the hospital to see his brother for the first time in well over a week. He told me he saw the "dancing baby William" on the hospital (the lit-up logo sign) and knew "William was awake." When Nicholas got off the elevator with us, he seemed apprehensive and peeked out from around the corner. He followed to the main entrance of the HEMOG floor and almost instinctively knew which way to turn to get to William's room (seriously, it was rather eerie).

Nicholas went right over to William and greeted him with a big kiss and a "hi broder William!" William just lit up seeing his old pall.

Truthfully, I was holding back the tears - oh, melt my heart!!!

After his initial greeting, Nicholas was onto his next mission - to examine every electronic gizmo device in the joint. He spotted the fancy remote control first. As lousy as this shot is, I love it because you see William watching Nicholas' every move, just as he always does. Nicholas even found the electronics to operate the hospital bed that none of us never noticed in over a week. You can imagine his interest in the IV pump, the air and suction nozzles coming out of the wall and anything else of oddity.

Nicholas was impressed with brother's set-up, especially when he got a little container of milk and a straw!

All of us together again...(as exhausted as we all look!)

Together never felt so good.