The whirlwind last week and a half has prevented us from providing an update sooner. Between our hospital stay, constant visits and frequent check-ups, there has barely been time to answer calls, let alone put out a blog post. But things have finally started to settle down and we are able to share a bit more about the events of the last couple of weeks.
On Monday, July 9th, we went to the hospital for the surgery we had been anxiously awaiting since Sophie’s diagnosed tumor recurrence on March 1st. The goal of the surgery was to remove Sophie’s new tumor, which was presently recurring in her chest cavity (the previous tumor had been in her right lung). At 9:45 am (the first time we have ever gone in for a procedure/surgery on time at Sloan!), the team of anesthesiologists and surgeons came to take Sophie into the operating room. We knew then that the next several hours would be filled with anxious anticipation, fear and prayer until we knew she was safely out of surgery.
After hourly updates throughout the day, at 5 pm, the surgical floor let us know that Dr. La Quaglia, the same surgeon we have used previously, was ready to meet with us to discuss the operation. After what felt like hours (in reality only 30 minutes), our incredible surgeon entered the room and informed us that he had been able to completely resect Sophie’s tumor, in spite of the challenges and reconstruction required with this particular operation. He believed that he had gotten the necessary negative margins he was looking to achieve in order to consider this a successful surgery. He then told us that Sophie was being moved to recovery as we spoke, and we were advised to meet her in the pediatric ICU once our conversation was complete.
Needless to say, we were and continue to be unimaginably thankful to this amazingly skilled and modest surgeon, who again attributed the positive outcome to G-d when we thanked him. He is truly a man unlike any we’ve ever known, acting so selflessly to save the lives of countless children without taking any credit for his work himself.
We were also humbled and awed to learn that our oncologist, Dr. Wexler, again took time out of his busy schedule to sit beside Sophie in the operating room while she was under anesthesia. He even came to check on her as we were being wheeled into the PICU, and joked with us that he had to fight his way through the team of doctors to sit by her head for part of the operation, but he elbowed his way through. We can’t express our appreciation enough for his care and compassion on this day and throughout our journey.
The days after the surgery were full of obstacles, long nights, and difficult conversations. Although we had discussed the various complications, side effects and other possibilities with our team prior to the operation (something that is common with a surgery of this magnitude), it was difficult to prepare ourselves for what lay ahead. Post-surgery, there were times of incredible difficulty, but also small bursts of joy. In typical Sophie fashion, just moments after waking up from her almost 8 hour surgery, she immediately asked for cookies to eat and didn’t stop eating for the next several days. The PICU head doctor said he’s never seen a patient eat the way Sophie did after such a major surgery. But as always, Sophie marched to her own tune and continued to do so throughout our entire hospital stay.
Each day Sophie was able to improve slightly from the last. The first couple of days were filled with significant bed rest, progressing to taking a few steps, eventually leading to longer walks around the hospital floor.
By day 5 or so after surgery, Sophie’s personality returned fully. Although still held back by physical limitations, she was back to her energetic, excited self, asking to play with her favorite “shopping cart” in the playroom that always had to be stuffed with her own personal belongings. Oh, and we had a special visit from Snow White and Princess Anna from Frozen, which was one of the highlights of her week. (Thank you to A Moment of Magic)
Although the recovery continues to be slow and is still filled with ups and downs, we were discharged in order to let her continue to recover at home where she is comfortable. We have continued to visit MSK for almost daily post-op checks and discussions with our teams in order to ensure she is continuing on the path to healing.
Needless to say, Sophie was truly a rockstar throughout this entire ordeal. She has taught us a lot and continues to surprise everyone she meets.
We have received many questions regarding our next steps now that the surgery is complete. We should have more information shortly but expect additional rounds of chemotherapy, details of which we’ll share when we know more. For now would like to thank everyone for the outpouring of support, prayer, and friendship we have received these last couple of weeks. It truly means the world to us and we could not have done it without all of you.