Christmas Chemo

December 25th

Back to the hospital first thing in the morning for our last day of chemo for round 1. Poor William started vomiting for the first time right around 11:30pm on Christmas eve. You could tell he was really feeling the effects of chemo and had not been nursing well for nearly 24-hours.

Smiles were hard to come by that day...but this candy cane sparked a little glimmer...

after he tossed it on the floor!

It was nice to see there were only 3 other families on the in-patient HEMOG unit. We walked the halls of the Children's Hospital to find few kids. Community volunteers arranged for some nice treats, including a luncheon provided by Carrie Lazarus and a big bag of toys for each child at the hospital that day, including William.

It just doesn't feel like Christmas

Although it was tough to get into the Christmas spirit (or frankly even remember it was that time of the year), Daddy and Nicholas joined the Kubis side of the family at Aunt Maryellen's house for the traditional Christmas Eve dinner. Because William was now on chemo, it was imperative we do our best to avoid crowds and illness exposure. Fortunately, Grammy and Poppie joined us at the house for a quiet evening.

Poppie even offered his services to help Santa Claus with some assembly efforts for a couple extra special kiddos.

Thank goodness Poppie does not charge by the hours - this one took over 3 hours to assemble! Thanks to all of Santa's little helpers who made this come together!

Our Christmas Eve

The protocol being followed for William's stage 3 neuroblastoma included 3 consecutive days of chemo for round 1. Needless to say, we did chemo December 23, 24 and 25th. This day, Mommy and Daddy completed training on how to administer the Neupogen injections William required following his chemotherapy to help rebound his white cell count.

Training was intense, as you can see...

Daddy takes cleaning of the vial bottle very serious. Personally, I think he just felt powerful wearing the latex gloves.

We used a rolled chuck as our mock of William's chubby thigh. Of course, we also had to entertain the little bugger through this - can you tell...

Mommy got an A+ for the practice session too. Fingers crossed the real deal goes as smoothly as the non-squirming, silent, rolled chuck cooperated for us.

Chemo Day 1

December 23, 2009

I specifically remember the numbness felt entering the hospital doors once again, only this time to bring my baby for chemotherapy to be pumped into him. Talk about a difficult decision to make on behalf of your child. I surely never read a chapter about this in all those many baby books I've perused for 3 1/2 years.

Chemo was on an out-patient basis so we were able to go home after each long day of treatment at the HEMOG clinic.

Each day of chemo consisted of a huge amount of bloodwork run to check William's levels, a weight check, vitals and all that jazz with the RN's, a physical exam by the oncologist, waiting for the results of the labs (to make sure he was "healthy enough" for chemo), then a wait for the thousands of dollars of chemo to be mixed up by the pharmacy.

Day 1 took so much time in the clinic, we ended up being transferred back to our old stomping grounds of 11G - coincidentilly to the room next door to William's previous room. We were greeted like rock-stars by all the nurses, aides and some of the families we befriended during our stay. Everyone was interested to hear the news of our Sloan trip...and to get a warm William smile, of course.

Even William seemed to wonder what all the fuss was about during the initial hook-up of his IV.

~ so nice to see a smile through tough times ~

To our surprise, chemotherapy is not some nuclear-colored, glowing, fizzing compound similar to what middle-schoolers make in science lab. This little bag of carboplatin cost around $8,000...each day of chemo (and this was just one of the 5 drugs he received).

Between pre- and post-hydration, we ended up being there until late into the night.

William sure gets lots of special attention during these long days at appointments. He just loves to be held!

My bub-bub was a super trooper throughout this big day for him. It sure is one we'll never forget...among many.

December 22 - The call

The busyness of life picked right back up where we left off once we were home, only it seemed all the more stressful now that we had this black cloud hanging over us. William was ever-so needy, requiring nearly constant caring or soothing. As before the hospitalization, he appeared to be in considerable discomfort and always wanted to be held (by Mommy, in particular).

Tuesday December 22nd came with haste...and all day long we awaited the phone call from the neuroblastoma team at Sloan. Finally, around 6:30pm we received the call from Dr. Modak. After asking about William, he was nearly apologetic saying that the team is recommending William begin with two rounds of chemotherapy to try to shrink the tumor. He explained there are considerable surgical concerns, including the very large tumor and its encasement. The doctor explained, "this is one of the largest tumors seen with neuroblastoma, let alone it is in the very small body of a baby." He seemed to be genuine in his apologetic approach for the "unusual recommendation."

And so, we called the Upstate Oncology group to set up a chemotherapy appointment for the following day.

First bath with the new chest accessories

December 22, 2009

William turns 7 months old.

Unfortunately, he was not too happy with our new necessary protocol for tubby time. His Hickman central line and its sterile dressing can not get wet, therefore we have to wrap him with Press & Seal (yes, the stuff made by Glad, like plastic wrap). We pulled out the old baby tub, but he was not having it!

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!).

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!