Our journey began while on a ski vacation to our favorite spot, Jackson Hole. Stuart broke out in a rash from a virus he had contracted the week before. We took him to the ER to get checked out on Sunday, January 10th and were referred to pediatrician Tom Pockat the next day. Stuart's rash was fine but we noticed that his eyes were looking a little crossed. Dr. Pockat noticed it too but Stuart was able to track a flashlight with his eyes appropriately so we made a plan to see a specialist upon our return. The next morning Stuart's eyes were definitely crossed and he vomited so we immediately decided to head home and get him checked out. Thankfully our pediatrician advised us to get an MRI in Jackson Hole before making the long journey home. At about 5:30pm we got the news that Stuart had a large brain tumor in the fourth ventricle that was blocking his cerebral fluid from circulating. The fluid had backed up in his brain and was putting pressure on his eye nerves and causing him to vomit. Dr. Pockat immediately got us in touch with the neurosurgery team at Primary Children's Hospital in Salt Lake City and we were medivacced down just before midnight on the 12th.
Stuart underwent brain surgery the morning of January 13th. The surgery went well and Stuart's neurosurgeon was able to remove most of the tumor. Unfortunately post-surgery Stuart developed a condition known as posterior fossa syndrome which is characterized by the inability to speak or move, difficulty swallowing and cranial nerve palsies. Little is known about this syndrome and there is no treatment. We were told that symptoms typically resolve over the course of several weeks or months. We also learned that Stuart had severe nerve damage to several cranial nerves, including those attached to his eyes. He was unable to close his right eye and that same eye turned in severely causing him to have double-vision. Stuart spent two weeks recovering in Salt Lake City and eventually made it back home to NYC. He began treatment at Memorial Sloan Kettering under the care of Dr. Ira Dunkel and his team.
Stuart eventually regained his speech and movement, although the right side of his body was/is remarkably weaker than his left side. He re-learned how to eat, crawl, roll over, sit, stand, walk and eventually jump! Stuart underwent six rounds of chemotherapy while at MSKCC, including three rounds of "high dose" chemo that necessitated injections of previously harvested stem cells from Stuart's own body. Following the rounds of chemotherapy, Stuart received special approval to receive an experimental intrathecal radiation treatment that was discovered and under development at Sloan Kettering. The radiation was administered in liquid form via an ommaya reservoir (a permanent port) that had been implanted in Stuart's brain in August of 2010. Stuart finished the radiation therapy on December 1, 2010. Stuart struggled physically and emotionally throughout his treatment. He fought every medicine, finger prick, blood pressure reading, weigh-in...everything. It typically took 3-4 adults to hold him down each time the mediport in his chest had to be "accessed." He has received anesthesia more times than we can count and he also needed blood transfusions on average of three times per week, and platelet transfusions about 2 times per week during chemo. Stuart spent on average 4-5 days per week at the hospital throughout his treatment which was really tough. But we were fortunate because most nights Stuart was able to go home to his big brother Bo and to sleep in his own bed.
Since finishing treatment Stuart has enrolled in pre-school and is doing great. He plays soccer, is taking swimming lessons and is starting tee ball soon. He receives physical and occupational therapies three times per week to help him re-gain his strength and to help him master basic skills, but Stuart prefers to spend most of his time playing at home with his legos and wrestling with Bo. His current status is NED (no evidence of disease) and he has "graduated" to quarterly MRIs. Our hope for Stuart is that he continues to thrive and that he is able to spend more and more time on normal kid things and less time at his various doctor's appointments and hospital visits.
Apr 25, 2012 10:51pmWe got great news today that Stuart's MRI was "clean." Whew. This is the longest we/he's gone between MRIs since Stuart was diagnosed and we were definitely anxious. We were prepared for a lot of tears and fights today but Stuart really surprised us. It helped that Stuart was able to go under with gas before the put in his IV. This was a first. The IV is usually the biggest battle and they put it in upstairs in the "day hospital" before sending us down to the MRI suite. I spoke with Stuart's nurse who was with him during the MRI and she laughed that Stuart totally spooked the anesthesiologist. Apparently he thrashed around for two seconds while they were putting on the gas mask. They were scared and asked if Robby who was there too, was OK. His nurse told the MRI team that they clearly had never witnessed Stuart getting stuck with a needle or getting an IV because this was by far the easiest, most smooth experience. I'll never forget the time Stuart was getting one of his experimental radiation treatments in which a large needle filled with radioactive iodine + the 3F8 antibody was stuck into the port in his head. I held down one arm, Robby the other, one nurse had his right leg, his oncologist had his left leg and the nurse administering the radiation had to literally climb over us on to the bed and straddle Stuart's head. He fought us so hard. We were really thankful that we didn't have to battle Stuart today. We were also reminded of how far Stuart has come since he finished treatment and how much he has changed. All of the receptionists, doctors, nurses and child life specialists who saw Stuart today were blown away by how big he is, how much his face has changed...they greeted him like a rockstar and at one point he was surrounded by 6 team members all beaming with pride and joy. I think Stuart actually blushed at all of the attention. Today was a good day.
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