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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.

Wednesday, July 29, 2009

Surgery Moved to Thursday Morning

Liam's surgery has been moved to this Thursday morning with a start time of 8:00 am. I just remembered in my sleep deprived state that I had not yet updated the blog. Sometime today (Wednesday) we will need to tell Liam that he will be going to the operating room again and this is one of the hardest things for us to do. The pressure that is building as we inch toward Thursday is almost unbearable. We have been here before and the imagery is burned into our memories permanently. Parting with Liam as he is taken into the OR gives you an immediate emptiness I cannot describe and that I will never forget. It is a feeling I know I will feel again all too soon. An overwhelming sense of anger, frustration, fear, and sadness.

To Dr. LaQuaglia and the surgery team as well as Dr. Walden and the radiation team; please keep Liam safe and return him to us and all of those who love him free of this cancer once and for all. Please treat him and care for him as if he was your very own son....

Wednesday, July 22, 2009

Crawling out of our hole...

First I would like to apologize for the silence Gretchen and I have observed for the past few weeks. The reality is that we have not had the strength to write what it is we are experiencing as it only makes it a reality we are not yet prepared to accept. Liam’s relapse caught us and his doctors by surprise. Something neuroblastoma is famous for and why it is such a despised and unwelcome disease. Liam was receiving 3f8 antibodies and doing so well that the thought of him relapsing now was truly not expected. Remember he is scanned every 90 days. 90 days before his last scan there was no tumor. 90 days later a tumor had formed in the rear of his chest cavity and was 2 inches in diameter. It had also spread to various lymph nodes in the area. It is proof of how unrelenting this type of cancer is and why there MUST be better therapies developed for kids like Liam. Over the past few weeks he has been through hell and back and I will spare the finer details but after a high dose round of chemo called ICE he and Gretchen spent 2 full weeks in patient due to neutropenia and a cough that he could not shake. He coughed so hard and so much that he would throw up and every muscle in his body ached from the physical exertion. The chemo knocked his immune system to zero and then some and it took weeks for it to slowly climb back to where his immune system could once again defend him from internal and external germs and bacteria. He has also lost his beautiful head of hair again. He has been recovering from his ordeal in NJ with his little sister since last Wednesday. Ella being without Mommy and her best buddy for two weeks was very hard on her as well. I tried to give her as much love and attention as I could but I am a poor replacement for Mommy and Brother. For the last week he has been playing, eating to regain the weight he lost, and enjoying his home and surroundings as any child should be during their youthful summers.

Next up is a fairly involved surgery that is currently scheduled for next Wednesday though we will know for sure today or tomorrow. The surgery will require a sizeable incision similar to the one he received during his first major operation to remove the original tumor. I was told to expect that he will be in intensive care following the surgery and on a respirator. Meaning he would go across the street to Cornell’s pediatric ICU post surgery until he is able to come off of the respirator. The surgery will be performed by the amazing Dr. Laquaglia and he will remove the new tumor as well as parts of Liam’s lymphatic system (nodes) where the cancer was also detected. The chemo he just received did its job and reduced the tumor by at least 50% so it is now smaller than a golf ball and resectable without additional chemo. During surgery he will receive inter-operative radiation in an effort to eradicate the cells that continue to develop in his abdominal area. Post surgery and recovery he will receive external radiation to the same area as well as the areas where the nodes were located. Post radiation he will receive an additional round of high does chemo and then several rounds of low does chemo and most likely additional rounds of 3f8 antibodies. Even though 3f8 has not managed to control his soft tissue relapses it has in everyone’s belief kept his bone marrow clean and his relapses treatable. The team at MSKCC is confident that Liam will be NED again soon and back on track; we too believe this to be true.

He is an amazing little boy and has taken all that has been thrown at him in perfect stride, never complaining, and always full of love and kindness. He has every right to throw things, scream, yell, cry, and to be miserable but then we would not be talking about Prince Liam.
Liam is in for a very rough couple of weeks. Our hearts ache for our precious son who deserves none of the pain and suffering he has been chosen to endure (no child does). He has had more than his fair share and what lies ahead for him over the coming month weakens my knees. I would take it all for him if it was at all possible. Take his cancer away and give it to me. I have begged God to spare Liam of any further anguish and to place it all on me to endure. It should be my fatherly right to make such a choice. As his father and his mother one of the most painful aspects of this journey for us has been the inability to protect our son from further harm. To protect him from the cancer that keeps trying to take him from us all, the toxic treatments required to keep him with us but that we know are harming him in other ways, and the uncertainty of what tomorrow holds for him. It goes against nature and all we are programmed as parents to do. We have managed to keep up a pretty good fa├žade through most of this journey but you all must know that today we feel the pain more than ever before and why this journal has been so quiet recently. We are tired, saddened, weak, and working to muster the strength to get through the next few weeks to be strong for Liam when he will need us most. Your prayers, good thoughts, and random acts of kindness have given us added strength in the past and why I felt the need to bring everyone up to date on Liam regardless of how difficult it is to share the news above. He needs us all once again to cheer him on and to focus all of our positive energy in his direction. We will provide the exact date and time of the surgery as soon as we know. Sorry again for the silence but our armor took a serious blow this time and has taken a few weeks to recover.