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Friday, July 31, 2009

Slaying Liam's Dragons..


After more than 8 hours of surgery by the talented team of Dr.'s  at Memorial Sloan-Kettering Dr. LaQuaglia emerged from the OR to tell us that he has once again spared Liam from the clutches of neuroblastoma. He removed the main tumor that was near his paraspinal region (muscles surrounding and supporting spine but did not involve the spine!) as well as the various lymph nodes that were found to be neuroblaastoma positive from his abdomen leading up to his esophagus. After Dr. LaQuaglia did his part and then Dr. Waldon and her team from radiology came into the OR and administered radiation directly to the areas where Dr. L. found tumor remains as well as a wide area around the tumor bed to eradicate any proliferation. This exact type of inter-operative radiation for a child like Liam is only available at MSKCC and has been perfected over the years to provide positive results. Dr. LaQuaglia used Liams original incision so he will not have another massive scar but did need to extend it some to be able to gain access to the upper chest region to remove the lymph nodes. So you understand the magnitude of this incision, draw a line from your belly button around your side to within an inch of your backbone and you will get the idea. Liam tolerated the surgery well but due to the length of time he was under and intubated he needed to remain on the respirator and was transferred via a special Intensive Care ambulance team directly from MSKCC's Operating Room across the street to Cornell Medical Centers Pediatric Intensive Care unit at around 6:00 p.m. yesterday. he has a chest tube in his side draining fluids from his abdominal area as well as an epidermal to help manage the pain associated with the large incision. 

Then began the game of finding the right combination of pain medication and sedatives to keep him comfortable and sleeping. Unfortunately this is easier said than done. Around 7:30 Liam emerged from his anesthesia and immediately attempted to pull out the respirator tube (he hates it). His heart rate went sky high and remained high for the next hour or so as we worked with the attending Dr. to get his pain and discomfort under control. He would try several more times to remove the tube. He was aware of his surroundings and nodded when Gretchen and I told him we loved him and when we asked him if he as ok. It was not until after 2:00 am that he was finally comfortable and his vitals where we would want them. 

Liam woke up this morning, sat up (if you can even imagine) grabbed his respirator tube and yanked it out. This of course set off a panic in the ICU. His hands were obviously not restrained enough for Liam's determination. We warned them several times last night that he has a will like they rarely see and it takes 5 nurses to give him a shot if he decides he truly does not want it. They now know the Liam we all know and love. They opted not to put the respirator tube back in and he is now breathing on his own with supplemental oxygen. He is also not happy about the oxygen mask on his face. There is a small amount of fluid in one of his lungs that will be monitored throughout the day and hopefully will not cause any complications. He has a tough couple of days ahead and will be required to be up and walking as early as tomorrow. The hope is that he is transferred back to MSKCC late today or tomorrow morning to their step down unit (below ICU critical level care but above general in-patient level monitoring). We know most of the nurses in the unit and look forward to being under their care. The first 48 hours post such a dramatic surgery are the most critical and we have cleared about 16 so he is not out of the woods yet but being off the respirator is a step in the right direction...a step Liam chose to make on his own. Mr. Inquisitive managed to ask Gretchen various questions as to what all of the probes and wires were sticking to and coming out of his body.

I want to thank all of you for your endless support and love. We are all hopeful that this will be the round of treatment that keeps him cancer free.....it has to be. We will try and update the blog as energy and time allows since we know how important Liam is to many of you. Thank you to the dear friends who sat with us yesterday and helped us get through the grueling wait while Liam was in surgery... we love you guys and could not endure this journey without you.