Clean Scans?

Clean Scans?

Yes….but. Liam had two scans – a CT on Friday and MIBG on Saturday. The CT was clean with a qualifier and the MIBG is negative. There’s a spot between his kidney and liver in the site of his original tumor that was on his last scan – the one done during our long inpatient odyssey in July to search for fungal pneumonia. This was the CT that showed his primary tumor had shrunk by 50 percent after one round of ICE, the super-tough chemo regiment that brought tears to a mother’s eyes when she heard we were doing it. The spot is still there but is MIBG negative and it’s something that would be big enough to be MIBG positive. It’s also something that Dr. LaQuaglia, Liam’s surgeon who also qualifies as surrogate grandfather, thinks is post-operative change. He studied the images and compared them to his surgical report and said it was an area he was definitely “in” searching for signs of neuroblastoma during Liam’s surgery. It’s an area that has been through three surgeries. It’s an area that has seen a lot. He, apparently, feels quite confident it’s not neuroblastoma. Liam’s MIBG scan is clean, the gold-standard for neuroblastoma, which is a huge relief. Our sweet guy whose new passion is dressing up as a SWAT team member is one who is MIBG “avid” which is a good thing because it’s a reliable test. (In case you’re wondering, his first relapse which showed on a CT but not on an MIBG was so small that it wasn’t large enough to show up on an MIBG scan. This thing is bigger and would definitely light up on an MIBG.) But because neuroblastoma is a resilient and cunning beast…we can’t take any chances. There’s no opportunity in this game to say, “We should have.” We are moving forward with another round of low-dose chemo beginning Monday which means Liam will be going to school while on low-dose chemo. (I wonder how many preschoolers can make that claim?) In four weeks we will rescan and when those scans show no changes because I know they will, we will move forward with the NK Cell trial. NK, for those not familiar, stands for Natural Killer. Here’s where we get into wacky, weird science. I don’t know enough about natural killers to be able to explain it….but I know that my blood and Larry’s blood will be tested to see which one of us is a “mismatch” to Liam’s blood and can give him an “ingredient” that’s missing that would then make 3F8 antibodies more effective. Liam will be the second child to participate in the NK Cell Trial. The first child to participate in the NK Cell trial is a sweet little girl from California who had persistent neuroblastoma that just wouldn’t go away…no matter what was thrown at it. I remember talking with her very worried looking mom about her daughter becoming a part of a very new trial that sounded a bit like Star Trek science. I remember seeing her look even more worried leaving the IV room after having her blood drawn and looking a bit discombobulated having to be the one receiving a poke instead of watching her daughter. I remember being scared for her and wanting to run up to her and give her a hug, but was tending to Liam who needed me. I remember seeing her a few weeks later on the day they were to receive the results of her daughter’s scans post NK Cell. A lot was weighing on those scans. The weight of the world. She and her husband looked so nervous but we were all trying to act like it was just a normal day…in a pediatric cancer ward. I saw her, her husband and children in the late morning. I can’t remember why Liam and I were at the hospital that day. We’ve had so many trips it’s hard to keep the details of each straight. I remember wishing and hoping so, so, so hard for them to receive good results. I didn’t see them again that day. But that afternoon there was an e-mail about the nothing less than miracoulous scan results following NK Cell. Tears flowed freely down my face as I read the account. I was so moved I forwarded her update to a few friends. Tears flow freely down my face now as I remember reading her update. Her scans were completely clean. Completely and unequivocally clean…because of a trial that was funded in large part with private donations. Think a cookie can’t make a difference? Think again. Every bit counts. I recently heard Katie Couric being interviewed about her philanthropic work related to cancer research funding. During the interview she explained to Larry King how important the private sector is advancing cancer research and used the statistic that eight of our 10 clinical trials are funded with private funds, not government funds. Eight out of 10. Eight out of 10? I was stunned to hear the number and stood mesmerized in front of the TV taking notes. Katie’s platform was that if we are going to make a difference in this war against cancer, we all need to work together. I firmly believe that it is not science that is holding us back, it’s funding. What if there wasn’t funding for this trial? How long did it take to fund? And reading the update from the mother who saw her daughter’s disease disappear because of a trial that weeks ago hadn’t been available served as reaffirmation to keep doing everything possible to impact change. No one else is going to take care of this – it’s up to us – you, me and everyone we know. There are ideas, hypothesis and theories just waiting to be developed that have no funding. And that, to me, is the greatest injustice. What would you do if you knew you could be part of saving someone’s life? By raising money for research which includes funding trials, that’s exactly what you’re doing, saving lives. And wouldn’t that be an amazing feeling knowing you were part of something that had the ultimate impact? We’re into the month of September which is Pediatric Cancer Awareness Month but in every store I visit, magazine I read, commercial I see….I am bombarded with a sea of pink. Now, don’t get me wrong, Susan G. Komen and her sister are my heroes. Susan’s sister was so outraged at the loss of her sister she decided to do something about it and changed the way we as a society think about breast cancer. I am so grateful for the work she has done and I hope I never have to be a beneficiary of the advancements she and legions of others have made on breast cancer treatment. But couldn’t there be just one commercial….one display in a retail store….one magazine story about pediatric cancer to note Pediatric Cancer Awareness Month? Just one? Being the number one disease killer of children in the U.S. would seem to make it worthy of highlighting, right? And if you’re not sure how funding can help…use the sweet girl from California as the poster child as inspiration. Clinical trials save lives. And if you cut funding to clinical trials, which is what has been happening, you are essentially telling a family that there is no money to save their child. If polio could be eradicated through a campaign calling for the collection of dimes, why can’t pediatric cancer? Shoot, I’d settle for all trials waiting to be funding to be funded.

Liam’s good, relatively speaking. He’s dealing with radiation burns to the inside of his esophagus that cause him great discomfort only relieved with narcotics. Eating and drinking is only done with the help of a pain killer. This morning he set up a weather station on the roof and is bubbling over with the excitement at being able to forecast weather. He can’t wait for school to start. He was watching You Tube tonight about how smoking damages lungs and explaining to Ella what was happening, “Ella – those are arteries…see them? They’re bigger than veins and carry more blood. And those there are red blood cells – they look like donuts. And the big ones are platelets.” And then he moved from discussion about platelets to his new passion…a Nintendo game thing that I totally don’t understand but that he has fallen in love with. It’s one of the ways I know he really is a little boy. I love him so much. I love watching him protect and take care of his sister whether it’s putting toothpaste on her toothbrush or reminding her that school is starting soon and she’s going to need to get up earlier. He wants to be the older brother blazing the trail for his sister. And Liam, we’re doing everything we can to help you keep blazing trails because we know you have a lot to do.


NOTE: Please support pediatric cancer research by visiting www.philosophy.com to purchase a bottle of Oatmeal Raisin Shower Gel. Until October 15th, 100% of the profit of bottles of the cookie-scented shower gel is being donated to Cookies for Kids’ Cancer (www.cookiesforkidscancer.org). In addition, Facebook fans can go to Philosophy’s page and send virtual cookies to friends every Saturday in September and Philosophy will donate $1 to Cookies for Kids’ Cancer for each “cookie” sent. All it takes is a few clicks to support pediatric cancer research. Please. See the Facebook page and/or website for details.

The Dynamic Duo at The Hayden Planetarium the Day before Liam's Surgery


NOTE: Please support pediatric cancer research by visiting www.philosophy.com to purchase a bottle of Oatmeal Raisin Shower Gel. Until October 15th, 100% of the profit of bottles of the cookie-scented shower gel is being donated to Cookies for Kids’ Cancer (www.cookiesforkidscancer.org). In addition, Facebook fans can go to Philosophy’s page and send virtual cookies to friends every Saturday in September and Philosophy will donate $1 to Cookies for Kids’ Cancer for each “cookie” sent. See the Facebook page and/or website for details.



"The work goes on, the cause endures, the hope still lives, and the dream shall never die."

- Senator Edward M. Kennedy


The Tunnel.

A few weeks ago Liam and I were in the car returning home after finishing the fifth and final day of the first round of low dose chemo. It was 10 days after his long and complicated 8-hour surgery. It was five days since he had been released from the hospital. We were still in that “giddy to be out of the hospital” mode reveling in how beautiful the sky is and how great it is to feel a breeze. We entered the Holland Tunnel which, per usual, was heavy with traffic. To enter the Tunnel there are a series of merges where cars alternate moving forward as many lanes merge into two narrow lanes to funnel traffic under the Hudson River. A few lanes away on the right I could see a black, shiny hearse approaching the Tunnel. I avoid hearses at all costs and never want to be near them. My heart started to beat a little faster as I tried to calculate where I was in relationship to the hearse to hope that we wouldn’t enter at the same time. Entering the Tunnel, I was just slightly ahead of the hearse and tried to do everything I could to avoid looking at it in my side mirror. If I don’t see it, it’s not there. Then all of the sudden my lane stood still while with the hearse kept moving. Very soon the shiny hearse was one car ahead of me. It was right there. I couldn’t avoid seeing it. The walls of the Tunnel narrowed as I felt the presence of the hearse. I kept trying to get the traffic in my lane to move faster by driving as close as I possibly could to the car in front of me. I willed the traffic to move faster. I prayed for the traffic to move faster in my lane. My fingers tightened around the steering wheel and my hands began to sweat as Liam and I discussed how rocket ships go into space, how glass is made, why dogs slobber and other pressing curiosities. I had to get past the hearse. I had to beat it out of the Tunnel. I couldn’t let it win. Back and forth we traded positions. Liam and I kept chatting about all things Liam while he sang along to Jack Johnson who he calls “George the Monkey” singer. “Upside Down….We’ll find the things that can’t be found…we’ll share our love with everyone….and there’s no time to waste….and this world keeps spinning round and round and upside down…we’ll be together till the end of time…” The race with the hearse silently continued. It was a race I was determined to win. I had to win. And then the traffic in my lane stopped. All I could see were red lights ahead. The hearse cruised past me. I was crushed. It was way up ahead and looked unreachable. And then traffic started to move in my lane. I could see the hearse way up ahead. My lane inched forward painfully slow. My heart felt like it was going to pound through my ribs. I had to win. I could not follow the hearse out of the tunnel. I had to win. Very slowly I pulled in line with the hearse. It was right next to me. And then ever so slowly I passed the hearse. I was a half a car ahead and then one car ahead and then two. But I knew at any moment things could change and it could be ahead of me again. I knew the end of the Tunnel was coming soon but there was still enough room and time for the hearse to pass me. And then all of the sudden traffic in my lane shot ahead. I considered changing lanes so that I could guarantee a win. The ticket would be worth it, although explaining to an officer why I switched lanes could be challenging and then explaining to Liam would be worse. I stayed in my lane repeating “come on…come on…come on…drive…drive….drive.” I couldn’t think about anything else as I maintained a steady banter with Liam the Inquisitive. I had to win. I would win. I had to win. I could see sunlight shining ahead. I knew the exit was just up ahead. I could see the top of the hearse several cars back in my side mirror. The road bent a little and a flood of sunlight came into the tunnel. It was so close. As we exited the tunnel the hearse was three cars behind. We made it! I wanted to throw my arms up in the air and do a dance like an NFL football player in the end zone after completing a tricky touchdown pass. But instead I told Liam I loved him and thought we should stop at a farm on the way home where we could cut our own flowers to which he replied, “that’s a great idea Mommy. I’ve always wanted to do that.”

My apologies for the “radio silence” and any fears our lack of communication has caused. We’re OK. A bit worn, but OK. We’ve been in the tunnel and focused. When we first got the news, I had to quickly regain my footing and brace myself for being plunged back into the cancer groove. It wasn't easy and I'm very grateful there were others to help support me from nurse practioners who let me cry on their shoulders to a deluge of supportive messages. For the past 10 weeks Liam and I have become one again. We read each other. Too well. He knows if something is wrong. He asks more complex questions although he still hasn’t asked the big one – “Is something wrong with me?” We assumed the roles we know too well. I know how to crouch in just the right position to cradle his head in the crook of my neck while holding a throw up bucket while he’s on the toilet exploding with diarrhea. He knows how to hold his throw up long enough for me to grab a throw up bucket which is always within an arm’s reach. I know how to pin him to my chest so that a nurse can access his port while he’s screaming at the top of his lungs and thrashing with all his might from fear and anxiety. He has retrained himself to do his hospital time without complaining. He didn’t ask why but I did. "Dear God, why can’t Liam have just a normal summer filled with no obligations except having fun?" Why does his summer camp have to be the hospital? Liam is like a cat – he always lands on his feet – so why is this happening? He’s the child who on his very first try of looking in a field of clover for a lucky four–leaf clover found one. He reached down and pulled out a lucky clover as if it was no big deal and couldn't understand why we were all astonished. This is the child who had no delays and no complications. This is the child who his father, sister and I love more than anything. Was it something I did? Was it something I didn’t do? Why?

In 10 weeks Liam has been through the proverbial ringer…but you’d never know if you talked with him. His daddy and I notice subtle changes in his personality – he’s a bit more cautious around certain things and can easily work himself up into a nervous energy he didn’t have before - but for the most part he’s Liam. To him it has been a normal summer. After all, this is the third consecutive summer he has spent his summer vacation in a hospital. He has had scans including a very long full-body MRI which he did without anesthesia; he learned how to spell blood having seen it so many times around the hospital being wheeled down hallways to and from appointments; undergone two surgeries – one to place a port on the Monday after we got the news (he started chemo on Tuesday) and a second “big” operation with the talented Dr. LaQuaglia who scoured his body to extricate anything that looked like cancer; radiation directly to his body cavity while he was opened up during surgery using a special applicator that is a one-of-a-kind apparatus made of a combination of silicone and rubber to conform to the terrain of a patient’s body and developed by three doctors at Memorial Sloan-Kettering (let’s not even talk about how bizarre it is learning there is a team of 10 from radiation including three physicists who swoop into the operating room to receive a report from the surgeon on where he found cancer and map out a radiation plan on the spot); a round of really tough high-dose chemotherapy called ICE (when one cancer mom heard we were doing ICE she had to hold back the tears as she looked at me knowing how difficult the regiment is); a very grueling 16-day hospital stay post ICE while his bone marrow recovered enough to start producing blood cells and platelets which was marked with eight days of nonstop fevers every three and a half hours that at the onset caused his entire body to shake uncontrollably to the point that he would start violently coughing which would cause him to throw up even though he had no food in his tummy and have a bout of diarrhea – a process that would take an hour and a half to get under control which would give us another hour and a half respite until it started all over again; a move to a new apartment which Larry had to navigate without me and Liam since we were in the hospital; an emergency CT scan on July 4th which had to be postponed until July 5th because no radiologist would come in to read the scan on a holiday to see if he had fungal pneumonia which would explain the violent coughing (one doctor’s explanation about why a radiologist wouldn’t come in on a holiday was a dry, “no one cares about kids”); an ambulance ride to and from Cornell ICU – the first of which he was unconscious and on a ventilator for and the second he was awake and enjoyed; a four-night stay in Cornell ICU post-surgery (which could have been two but there were no beds available at Sloan-Kettering) which was highlighted with Liam pulling out the ventilator tube helping him breath and the NG tube draining his tummy on his own 12 hours after his surgery even though his arms were restrained – he was in a room with three patients, two nurses and a doctor and I was taking a 20 minute cap nap with my head on the foot of his bed and woke up when I heard him trying to talk to me - which caused a huge scary scene in the ICU of people rushing to his bedside with the expectation of reinserting the ventilator tube which I said no to since he obviously was feeling well enough to remove the tubes and no alarms went off indicating he wasn’t breathing well (“Mommy – I felt the tube and I didn’t like it so I just pulled it right out”); the placement while in his bed in ICU by Dr. LaQuaglia of a new chest tube to drain the fluid collecting on his lung that was causing it to collapse the day after surgery; two rounds of low-dose chemo which is a cake walk compared to high-dose chemo but still requires multiple trips to the hospital, fatigue and diarrhea; a radiation set up which included making a new mold of his body and adding new tattoos on his chest (the last time he was tattooed was under anesthesia…this time it was with numbing cream and yes, they use tattoo ink and yes, it is permanent); 10 days of radiation twice/day that spanned three weeks since it started on a Friday; burns to the inside of his esophagus from radiation which makes swallowing extremely painful only lessened with nonstop narcotics; a two-night hospital stay after a fever with low blood counts; multiple transfusions including a platelet transfusion that caused his throat to become restricted and his body to break out in angry hives followed by an emergency dose of another medicine in a little plastic IV bag to reverse the effects to make sure he didn’t stop breathing; and as of this post the nervous energy of waiting for scan results since getting a CT on Friday afternoon and MIBG on Saturday during Labor Day weekend. (Yes, they scan on Saturdays.) There are so many medical checkpoints that occur throughout a day to maintain a child’s health when they’re in the hospital. If you think about it, it’s almost too much to comprehend how any can live. We humans are a pretty darn complicated. We have been through so much – moments when time was measured moment to moment, blood gas level to blood gas level, CBC to CBC. And as much as is happening on the medical front, there are just as many stories to relay about Liam being a boy full of wonderment, inspiration and graciousness. He never once has lost the essence of who he is – a sweet, inquisitive little boy who loves with endless reserve and with no reservations. When we were discharged from the hospital after his 16-day stay where he missed the July 4th holiday, his first request was to go to a toy store to get a present for Ella…and maybe one for him too. He has lost weight, lost his hair, regained the weight, lost it again, and is now working on regaining the weight and his hair which has sprouted a peach fuzz all over his precious head. He loved pulling out his “magic hair” to give to people – something that newcomers to magic hair received with a bit of shock, surprise and astonishment. He discovered the magic of Star Wars and Magic School Bus. Star Wars quenches his thirst for space and discovery while Magic School Bus gives his science-oriented mind answers to endless questions. We have examined work sites in the hospital watching workers as they repair, install, and inspect. He is now a doctor in training with his own white doctor coat that is adorned with a real stethoscope that is blue (he picked the color), a small orange light for checking patients’ pupil reactions, a notebook and pen in the pocket because that’s what his doctor has in his pocket, a small quacking duck to make his patients laugh, a bottle of Purell, and a real hospital photo ID that bears his signature and is attached to the breast pocket of his coat with a retractable string like all doctors and nurses. (It was one of those classic Liam moments – he confidently strode into the hospital security office wearing his white doctor coat and respectfully but determinedly announced he needed a photo id. And he got one.) He rotates wearing the doctor coat with his other hospital outfits – Mr. Incredible and Superman, appropriately. We’ve tried to live as much in the carpe diem spirit as possible and do…not talk about doing. We’ve been to the Museum of Natural History and Hayden Planetarium, visited the Children’s Museum, run through water fountains; ridden the Roosevelt Island Tram, walked through Central Park to smell the wonderful smell of grass and trees; strolled through Times Square to look for the man with the albino Python and marvel at all the lights; gone to the movies which is a new activity; and seen The Lion King on Broadway which we’re still reliving and singing the songs to. Ella has been with us on many of our adventures and many of our hospital days which has been really nice. She adds a certain element of comic relief and loves being with us as much as we love having her around.

We have greeted newcomers to the cancer world including the mom I met at 5 a.m. one day on her first full day at Memorial Sloan-Kettering after he son was diagnosed with cancer during a family vacation on a cruise ship off the coast of Greece. We have shared scary and sad news with friends. We have seen other children lose their battles. We said good bye to baby Pierce and his wonderful family as they returned to Oklahoma to shower their precious boy love and comfort. And we have seen other friends looking great. We have never lost faith. We have no reason to. We have never lost hope. We have no reason to. We have, though, worked very hard at keeping Liam and Ella happy and imprinting every laugh, smile, “I love you,” and snuggle on our souls. We have been in our tunnel and completely focused. It has not been easy but who said being a parent was going to be easy? Liam is our hero and Ella his adoring princess in waiting. Liam has made one change about his future plans. He has decided he wants to go to Princeton because it’s not too far from us and their school color is orange, his favorite color. He talks about going to college quite frequently. He can’t wait to learn about science, lightening and electricity stuff. Oh, and be a space guy fixing satellites.

Thank you to everyone who has prayed for us, sent good wishes, musical cards, special treats, visited us at the hospital, visited us at home, brought meals, and been there for us. Your support means the world to us and helps keep us going. Your support allows us to be in The Tunnel focusing on Liam. And without your support this journey would be much, much harder. We are humbled by the outpouring of support we continue to receive and are so incredibly appreciative.

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....

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 façade 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.

In Honor of Our Son Liam Witt

Dear Friends and Family,

As most all of you know we have been faced with the challenge of our lives this year as we fight to rid our son Liam of the cancer that has invaded his innocent little body. The reality of his type of cancer, neuroblastoma, leaves us with no guarantee as to his long term prognosis. The grim reality is that more than 50% of the children diagnosed with neuroblastoma relapse, and the survival rate for children diagnosed with high risk disease like Liam is in the neighborhood of 30%.

We, along with other parents facing this reality, find it unacceptable and have decided to act and do all we can to make a difference to improve these terrible odds. As a result the “Band of Parents Foundation” was created and our objective is to raise money to further the cutting edge research at Memorial Sloan-Kettering Cancer Center (MSKCC), the worldwide leader in treating neuroblastoma. As a founding board member and VP of Marketing for the Band, I am encouraged by the research and future potential of treatments currently under development at MSKCC. Gretchen and I feel we must do everything in our power to give Liam the best chance possible and if he were to relapse we want to be sure there are treatment options available that today don’t existent. I have watched as other board members have lost their children and I cannot begin to explain to you the feeling of helplessness and misery I feel each day wishing I could have done more. Motivated by this bleak reality, Gretchen and I have put together an ambitious plan to raise more than $200,000 for MSKCC research. It is the first major event on behalf of the Band of Parents Foundation and it is called “Cookies for Kids’ Cancer.”

We, along with a volunteer army, will bake and sell 8,000 dozen gourmet cookies (96,000 cookies in total) beginning November 16th and ending December 14th. The delicious recipes are from renowned cookbook author and dear friend, Sally Sampson’s recently released cookbook, Cookies. The cookies will be sold for $30 a dozen and all of the proceeds will go directly to research at MSKCC since almost everything related to the project has been generously donated.

I know that most of you are about to begin the tireless search for the perfect holiday gift for all those on your gift list and I thought this unique opportunity to give a gift that not only tastes good but feels good might appeal to some of you. See the attached PDF file for more details.

The cookies will go on sale beginning Friday, November 16th and can be purchased via the following website: http://www.cookiesforkidscancer.org/

You might also want to visit the “Band of Parents” website http://www.bandofparents.org/ to learn more about the foundation we are so passionately involved.

We hope you will pass the email to anyone and everyone you know to help us ensure Liam and all the other children fighting neuroblastoma receive the future treatment options they so desperately need.

Bound by Hope,

Larry & Gretchen Witt