Off to NYC – Out Damn Tumor

Off to NYC for surgery and Round 4 of chemo

We’ve been waiting for today for awhile. The outcome has a lot of implications for Jackson’s future treatment (stem cell transplant or not / Sloan vs. CHOP).  On Monday and Tuesday, we got an updated CT scan and to met with the surgeon, Dr. Michael La Quaglia.

Today is Wednesday and its game time!

Unfortunately for us, today is the exact opposite of yesterday. Yesterday was an amazing “back to normal” day. After meeting with the surgical team in the morning, we checked into the Ronald McDonald House, went to a restaurant for lunch (Jackson’s appetite for chocolate shakes made a reappearance for the first time in months) and then took a walk to Central Park. Jackson loved the pond with the sailboats and ducks. He ran around yelling quack quack at the ducks while making flapping motions with his arms. After the park we came back to our room and had a little pizza and Tasty Delight. Jackson was back to his pre-diagnosis energy level, running and jumping all around the room. The highlight of the night for me was him running circles around me yelling his new phrase “I love you”. I couldn’t have asked for a better day.

Today, however was a different story. We woke up early for our 6am arrival at Sloan and hung out for 2 hours while they hydrated Jackson and prepped the room for surgery. Jackson knew something was up today and wasn’t very happy about not being able to have any juice or water before surgery. After watching some Muppets and coloring, it was time. Around 8:15, the anesthesiologist gave Jackson some sedatives which made him laugh and giggle and made me put on a surgical gown, hat, and foot covers so I could take Jackson to the OR. After gearing up, I picked up Jackson and the three of us walked down towards the OR. Meredith said her goodbyes and I continued down the hallway. Jackson thought my surgical hat and gown were funny and we laughed and giggled all the way to the OR.

Stepping foot into the OR finally made me realize how real today was. The bright, harsh light, small operating table with straps for Jacksons head and heated cushions to keep him warm, loads of medical gizmos and gadgets, and the large surgical team all with their serious game faces on finally woke me up to the harsh reality that this wasn’t just a walk in the park. This is a serious operation. We brought Jackson to Sloan because Dr. La Quaglia is the best neuroblastoma surgeon (and the most aggressive) in the world, but the gravity of it all didn’t really hit me until I laid Jackson down on the OR table and they gave him anesthesia and he drifted off to sleep. The anesthesiologist assured me that the drugs they gave Jackson in the preparation area would prevent Jackson from remembering any of this. I just wish they would have given me the same drugs! After Jackson was strapped in I was escorted out of the room and went to go meet back up with Meredith.

After gathering our belongings, we headed to the waiting area to begin the longest 8 hours of our lives. We were both miserable throughout the days, both trying to occupy our minds on other things. I don’t believe either one of us have been so scared in our lives.

Finally around 4:15, we got word that the surgery was over. We made our way to a consult room to meet with Dr La Quaglia. He told us that the surgery went great, he was able to remove all of the main tumor and all of the suspect lymph nodes he could see on the left side. We could not have asked for a better result. Dr La Quaglia is the man!

The only areas that the surgeon couldn’t address were some lymph nodes behind the heart and near the clavicle on the right side. Since the surgery was on the left abdominal cavity, there was just no way to get there. We will re address these spots with Dr Modak next week to figure out if we do a second surgery.

After meeting with the surgeon, Jackson was transferred via ambulance across the street from Sloan to NY Presbyterian for his stay in the pediatric ICU.

My first impression after seeing Jackson was that he was nearly as jacked up as I imagined he would be. In fact the only bruising was on his head from taking a header into the night stand during our Tuesday night pizza party in our room. All in all, he looked great despite the various tubes and wires hanging off him.

After getting Jackson settled into the PICU, I walked Meredith back to the Ronald McDonald house and returned back to the PICU to settle in for the night. I think I sat for a minute before passing out for the night.

Rough, long day for us all. We couldn’t be more proud of our little warrior. Jackson, you are one tough SOB, we love you so much.

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