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.

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.

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.

Liam Returns to Battle

It is with heavy hearts that we share with you the unfortunate results of Liam’s most recent scans. The results of which showed that Liam has relapsed in a new area behind his lungs, around the lymphatic system. The 3f8 treatment Liam has been so fortunate to receive does not seem to be the right therapy to keep him free of soft tissue disease. We have been fortunate not to have found disease in his bone marrow but it is a mixed blessing since bone disease is what 3f8 really excels at fighting and the treatment Liam has tolerated well. He received 7 rounds of 3f8, two being high dose, since earlier this year. Cells hiding in soft tissue require that chemo be used to kill them so Liam will start a round of high does as early as tomorrow if not later today. No amount of time can be wasted since the tumors they found were not there 90 days ago and have grown to be approximately 2” in size in a short period of time.

It angered me all weekend to know that the cells were growing and spreading while he ran around the yard, swam, rode his bike, and played with Ella as if his world was in perfect order. The feeling of being completely powerless while something is harming your child right in front of you is a feeling I cannot begin to describe.
Today Liam has an MRI to better understand where the tumors are located since one resides in the soft tissues surrounding the spinal cord. It is most likely in the tissues around the vertebras according to last week’s scans but we need to be certain.

Liam will also have a port surgically implanted back in his chest today so he can receive chemo. The surgery time is not known since he was an add on the schedule so will be squeezed in at some point. He will be really bothered by the ports return both physically and physiologically. It kills us to have to watch him endure so much. We plan to tell him that his blood “still needs more fixing” and he will need more medicine to get the job done. Liam does not know he has cancer, does not know what cancer is, and thinks he is perfectly normal. His innocence has been a major priority of ours throughout the last two and a half years. We know that this time around he will likely question the various treatments and procedures more than ever as he works to process and determine what is really going on. Anyone who knows Liam and knows him well appreciates his relentless curiosity and inquisitive nature.

We are looking in every direction to determine the next best step based on Liam’s situation. We know we must stop and shrink the tumors immediately and then remove whatever is left. Meaning, Liam will likely undergo a major surgery sometime in July. We along with Liam’s team of doctors at MSKCC, along with input from several other top neuroblastoma doctors, will then develop a new game plan to keep him clean. There are a few other options but not as many as you would think or desire. Each will likely include various combinations of chemo as well as new or experimental therapies like NK cell, ABT-751, or MIBG therapy.

We have a most unpleasant and unexpected summer ahead of us. Your support and endless cheering for Liam is what truly keeps us going. Though we are scared, broken, and tired of this journey’s seemingly endless barrage of heartache and pain, it is one we would walk a thousand times over for Liam.

I will leave you with this:
On Friday we returned to our apartment after learning of Liam’s relapse. Gretchen and I were doing our best to act as if nothing was wrong even though we were both crushed and had pretty much had the life sucked out of us. We could not appear as if anything was out of the ordinary even though we were both numb. I walked into Liam’s room with him to find the sun streaming through his bedroom window. He said “Daddy! Daddy look! It’s beautiful! Look at the sunlight” as he held up his arms and basked in it, dancing around! I could not physically respond but I doubt I will ever forget to appreciate the simplicity and beauty of late afternoon sunlight shining through a window. ..yet another lesson from our young Prince.

June 14, 2009

Dear Friends of Prince Liam:

Gretchen and Larry asked me to write you all because they are polishing their armor at the moment, getting ready for battle. On late Friday they were given the news that Liam has had a relapse and will begin a course of chemotherapy treatment beginning Monday. He will also need a fairly complicated and delicate surgery in the upcoming weeks. It has come as a complete, devastating and disappointing surprise especially considering how great Liam looks and feels as everyone who attended his birthday party last weekend can attest.

She and Larry have much to do. Most importantly they must stay strong and rested and focused for Liam. So here are the things that you can do during this part of the journey. Remember that no acts of kindness are wrong-- it's just that some things are more appropriate and more helpful at times like these than others.

If the tone of this seems a little harsh, it isn't meant to be. It is just meant to give Gretchen, Larry, Ella and Liam the greatest amount of practical and helpful support at a stressful, tense and crazy time.

So here goes:


1) NO crying visitors. Only stiff upper lips. They'd love visitors, but only if you come with the intent of showering Liam with joy, either by bringing a craft project to do or a book to read.

2) No chair sitters. They need you if you are ready to run and explore and engage Liam in order to give them a break for a few minutes. For Ella’s friends’ mommies and daddies, Ella cannot be forgotten in this crazy time. She loves playdates but there are times they'll need to cautious of her exposure to others because of the risk it poses to Liam. Please have no one with a cough, cold, sniffle or anyone less than 100% healthy around Ella.

3) Don't ask questions about Liam when he or Ella are around. In fact, please don't ask a lot of questions in general right now about the details or the disease or outcomes. They don't have the answers and answering them is exhausting.

4) No one is allowed in the hospital room who doesn't believe that there is any other outcome than to battle this cancer beast back once again.

5) If you're not a local friend, you can hold a bake sale, buy some cookies (www.cookiesforkidscancer.org), do something to support their efforts to make more treatment options available for this insidious disease.

6) If you're not local and even if you are.... send a handmade card or music card to Liam and one to Ella - they love them.

7) Don't call. It is one more thing that will make them feel like failures as there will not be enough time in the day to take care of Liam and Ella, to calm them, to talk to doctors and nurses, to wage the battle and to rest-- even though that last part is next to impossible.

8) Do send an e-mail instead. Don't expect a reply but know they appreciate your note.

9) Don't ask Liam how he feels or Ella how her brother feels. Liam looks and feels great. When people ask him how he feels, it confuses him because he doesn't understand why people are acting like there's something wrong with him.

10) Pray if you pray, believe, hope, send love and good thoughts and only wonderful intentions during this time. We will take all of the powers of the universe right now. And know that we love you for your friendship and support....

Lee Woodruff who shares a birthday with Liam

Jet Packs and Grass Stains

4/09 - Yes, I DO still fit in my dump truck!


4/09 - Glorious Hair


May 3 – 10 Days until Liam’s 5th Birthday

Jet Packs and Grass Stains

There’s a post at the end of this entry that was written on the two-year anniversary of Liam’s diagnosis. I was angry, grateful, defeated, hopeful, sad but trying to remain happy when I wrote it. I was going to post it, and then another child lost their battle which sent me reeling in a sea of conflicting emotions. I froze. And then another child lost their battle and I remained frozen to write but not to love Liam and Ella like there is no tomorrow. It is a powerful and poignant gift to be taught the fragility of life. It is also a suffocating and smothering burden at times to carry. Yes, Liam will walk across a brilliant green lawn to pick up his university diploma and look back over his shoulder once he has it in hand with a twinkle in his eye saying, “what’s the big deal?”, but the road it’s going to take to get him to that milestone is going to be one without a map to guide us. I’ve always felt more comfortable having a map for guidance, but I’ve also been pretty good relying on instinct to guide me. I like going with the, “I feel like if we go this way, we’ll get there” guidance system. It worked when I was studying in Europe, why can’t it work in this situation?

I found my writing voice with the help of a steady stream of postcards from London that have never ceased their regular appearance in our mailbox in two years; the encouragement of friends who gently prodded me along; the weekly arrival of proceeds from Cookies for Kids’ Cancer bake sales and, most of all, Liam’s good health which proved to be the salve I needed to cover those wounds.

Without further adieu, Liam is good. He’s so good in so many ways. And every day we try to drink it all in, savor the good times and believe they will go on and on and on while also hoping that the advancements in treatment that are being worked on will become available as quickly as possible for Liam and all of his friends.

He’s growing up in so many ways. He’s practicing writing letters. He's interested in learning how to spell and wants to learn how to read “in two weeks.” He made the very astute observation that he likes a pacifier for the same reason other people like cigarettes. He just does. But after two years of relying and depending on his pacie to comfort him during cancer treatment, he has retired his beloved friend because it was making him “say words funny.” He did make the condition that he can have his pacie during owie medicine week because “it helps me.” He also announced he wanted to go to “word class” to learn how to say words the right way. (We’ve added a weekly speech therapy class to his schedule which he loves.) (The pacifier does come comes out of hiding during hospital weeks, but that’s just fine with me.) He switched from kid’s toothpaste to the toothpaste Daddy uses, because he likes how it tastes “spicy.” He can watch a movie to the end and be completely engaged. (Ella tends to get bored and wants to move on to something else.) He wants to know about everything from dinosaurs and the life cycle of toad eggs, to plumbing and how gasoline makes engines go. Space and the solar system is a hot topic for him and we have watched countless videos showing sun flares and sun spots. We spend a lot of time looking up videos on YouTube that will explain the latest fascination. A jet pack constructed using two empty liter bottles, duct tape, cotton balls and glitter that was a gift from twins Robbie and Stevie have become a part of his daily uniform. He wears his jet pack to school, to the grocery store, running around the yard, and is convinced it makes him run faster. For months the jet pack went unused as Liam just didn’t have the energy to think about being an astronaut. But now he wears it all day to help him get from point A to B faster and hangs it on his bed post at night to keep it close by. If you ask Ella what she’s going to be when she grows up, she very assuredly responds, “I’m going to be a princess and Liam’s going to be a space guy.” Last weekend he spent time running up and then down a hill of bright green spring grass over and over and over. He would run down as fast as his legs could carry him while squealing in glorious delight and fall into the grass. Again and again he made the trek up the hill and the run down. When he eventually tired, he was surprised to find his knees were stained a bright green color. As he contemplated the green color on his knees, I wanted to fall on my knees in grateful thanks that he could experience something so fundamental.

What’s next?
Since the last update, Liam has completed two more rounds of antibodies which brings him up to six including two at a dose four times the amount of “regular” dose. The first four rounds are administered at three week intervals which are more like two and a half when you take into account that injections start the Wednesday before antibodies begin. The scheduled has now changed to every six to eight weeks which represents a huge turning point for us. It is the first time the leash with the hospital has had this much slack since July. He also has successfully navigated another round of scans and endured two bone marrow procedures with good results. (There were a few knee-weakening moments during his most recent MIBG scan which left me with the spine of a jellyfish while waiting for the results, but all turned out well.) He is on round four of Accutane with, thankfully, minimal side effects. Accutane is given two-weeks on and two-weeks off for a total of six cycles. (There’s a small book of warnings about the potential scary side effects that come with taking Accutane, along with very official paperwork including a registration card with the Federal government.) We’ve had worrisome moments along the way, some of which rocked my foundation enough that I couldn't write about them and instead had to reflect on what happened and come to peace with. The one lesson I am constantly reminded of is trust your instincts. If you feel something isn't right, it probably isn't. His next round of antibodies is scheduled for 5/18 and his three-month scans June 11 and 12. As hard as antibody treatment is, we remain faithful it is the right path. We’re squeezing in a vacation out of the country to an island far away from Memorial Sloan-Kettering before his next round of scans.


Liam and Ella Stories:

I love you
We spend a lot of time saying the three glorious words, “I love you” and extolling how much love we have for each other. With Liam’s solar system fascination comes a new way to measure love. Liam knows the planets in the solar system and their position and declares that he loves us “to Pluto and Back and Pluto and Back and Pluto and Back and Pluto and Back and Pluto and Back.” We always tell each other we love each other before we leave the house and have lots of group hugs. When Liam or Ella is going somewhere without the other, they seek each other to give each other a heartfelt hug and kiss goodbye with the assurance that they’ll be together again soon. They hug and kiss each other before going to bed. They comfort each other and say unprompted, “I love yous” to each other throughout the day. They are so close both emotionally and physically that they are often asked if they are twins. They decided they like the idea of being twins and now tell anyone who asks that yes, they are twins.

Snuggle Bunny
Larry was the one to coin the phrase snuggling like snuggle bunnies with the kids as he curled them into him to offer warmth and comfort. We’ve spent a lot of time snuggling with both children – Liam to sooth him while dealing with pain and discomfort and Ella for reassurance and extra attention during difficult times. There’s no greater joy than feeling a child nuzzled next to you. Liam and Ella have now adopted the phrase. Liam frequently asks Daddy to “snuggle with him like a snuggle bunny” or says, “Daddy – Let’s be snuggle bunnies” when he’s looking for some quiet time. Liam and Ella have started sleeping together on weekends in Liam’s “big bed.” As they climb into bed together, one of them will say to the other, “Do you want to snuggle like snuggle bunnies?”


How Old Are You?
I can’t count the number of times that Liam or Ella says something that makes me either laugh out loud or smile an incredulous smile of amazement. It’s a daily occurrence. Liam routinely tells cab drivers to have a nice day and asks when he’s going to see them again with an innocence and earnestness that makes you want to scoop him up and hug and kiss him. When a friend and her family were recently leaving after an afternoon visit, Liam turned and said, “They’re really nice people. That was really nice of them to come visit us. I hope they come back again soon.” As Ella and I were walking, she turned to me and said, “Mommy – Wasn’t it hilarious when we were in Disney?” She’s three. When did she learn the word “hilarious?” One of Liam’s favorite words is beautiful from declaring it’s a beautiful day, a beautiful grilled cheese, beautiful flowers or beautiful scene in a movie.

Ned or NED?
NED is what every parent of a child with cancer or adult cancer patient wants to achieve. The acronym means, “No Evidence of Disease.” There are some parents who never hear those words and others who have a very, very hard road trying to attain the status. Cancer is always on my mind. It’s always there but I try to act as “normal” as possible. A few weeks ago as we were returning from New Jersey to New York, I saw a new billboard that jolted me. In huge letter the billboard read NED with a phone number after it. Why in the world would a cancer term I never heard of until entering this stranger alter-universe be on a billboard? Why? NED? NED! And what was the phone number to…a cancer center? And then I noticed underneath the word NED , it said “Gutter Cleaner.” Ned is a gutter cleaner who is advertising his services.

Liam”isms”
- “Mommy – I’m very serious about science, blood and electricity. Very serious.”
- “I think I’m getting smarter because my brain is getting bigger.”

Marathon Man
Liam has a jersey and medal from the 2008 NYC Marathon. They were given to him by his friend and supporter Marci who has run in the past two NYC Marathons as a member of Fred’s Team. The money raised by Fred’s Team goes directly to the pediatric floor at Memorial Sloan-Kettering with a chunk of it directed to the costs associated with manufacturing 3F8 antibodies. Marci is an “after cancer” friend who has been so gracious and unwavering in her commitment, even for a family she doesn’t know outside of the world of cancer. Lately Liam has taken to running around with the purple and orange Fred’s team jersey on, with the medal around his neck, and his head popping out of the arm hole of a t-shirt to act like he has long hair flowing behind him. He runs from one end of the apartment to the other yelling, “I’m a winner!! I’m a winner!!” with Ella faithfully following behind.

Who Let the Dogs Out?
Last Valentine’s Day Liam received more than 10,000 Valentine’s Cards from all over the country thanks to the heroic efforts of one of our many North Carolina friends, Julie Yenichek. We saved every Valentine card and quite often Liam and Ella go through the boxes looking at the cards and asking who each one is from. They, of course, assume we know every person who sent cards. All we need to know is that each person sending cards was doing it in support of Liam and our family, something I will be eternally grateful. One of the cards played music, the song “Who Let the Dogs Out.” That song has become a favorite. It’s on my iPod and played in the car, on the computer and, of course, the original card. The kids sing the chorus over and over again and both have become quite proficient at mimicking the singer. To whoever sent that card, you have no idea how much joy that card has brought us. We still have it, more than a year later, and it still makes us all laugh. Thank you to the person who sent that card and to everyone who sent Valentine’s cards. Even today, they still bring us so much joy.


And here is the original post I wrote on the 2nd anniversary of Liam’s diagnosis.

State of the Union - 24 months and more than 200 injections later.
February 27th is the day we found out Liam had a tumor in his belly. No one said he had cancer on that day. It was a Monday. We stayed in the hospital in New Jersey that night; the very hospital where he was born 2 years and 9 months earlier. I still vividly remember the day of his birth, looking at him for the very first time and thinking he was just perfect and realizing that in an instant my life and my heart would never be the same. I still think he is just perfect. The day after we learned Liam had a large tumor in his belly was the first day the word oncologist and cancer entered our world. It was the day we knew we were in a bad place with our baby boy. It was the day I crumbled to the floor when I was told the news that he had the worst of the two cancers they thought it could be and, as icing on the cake, it was stage IV which means it was the absolute worst it could be. Liam was still unconscious from anesthesia, resting on a CT scan bed next to me. If he had been awake, I wouldn’t have collapsed. The only reason I did was because he couldn’t see me. I’ve tried so very, very hard to never let Liam see fear in all of our time at the hospital, but I haven’t always been successful. There were two times he has seen it and both times after he asks a million questions about why I was upset. I’ve tried so very, very hard to approach this as just something we have to do and nothing unusual. We are so fortunate to live close by making it fairly easy to transition from one home to two. Ella was too young to realize anything was different and Liam understood the explanation that Daddy and Mommy wanted to have him and Ella closer to where we work. “Curious George has two homes, a city home and a country home, and so do we.” He accepted it and we moved to the city and moved on.
Two years later we’re still in a very precarious state but are still living. We’ve learned to deal with things we never thought we could. I have now learned how to give injections and have pierced my son’s skin at least 182 times while Larry plays the heavy handler to keep him still. Larry learned how to do dressing changes in a sterile environment while I held, soothed and restrained a very upset little boy. And together we have learned to take nothing for granted and never get too comfortable with status quo.
We’ve made amazing new friends. We’ve lost touch with others. We’ve been buoyed by the support of so many, from around the world. We’ve had victories. We’ve had setbacks. But we have never lost faith. We get scared more easily than we did before the spot was found in July, but we try to keep that fear contained. It’s the genie in the bottle we don’t like to let out. We have learned to love as if there is no tomorrow and for that, we hope our children have benefitted. They tell us and each other, “I love you,” more times than we can count a day. We also have had hard times. A couple adjusting to this new world certainly has its fair share of challenges. Men and women are different in the way they process information and for many, many months Larry and I have not been able to talk directly to each other about Liam’s diagnosis. It’s just too painful. We talk around it. We talk about things related to it. We talk about safe topics, but we don’t talk about Liam. We talk about cancer every day. But we generally don’t talk about it in relationship to Liam. The way I deal with it is the way I have to deal with it. And the way Larry deals with it is the way he has to deal with it. We respect each other enough to not judge how each has chosen to handle. What we do share and are both completely committed to is loving our children with our hearts and souls and doing everything in our power to change not only Liam’s statistics but also every child dealing with a devastating diagnosis of cancer and, in the process, hopefully preventing more families from having to hear not only the awful words, “Your child has cancer” but even worse, “there is no cure and virtually no funding to support research to find a cure.”
We have divided responsibilities but not without it taking a toll. Ella and her daddy have a special relationship that, I suspect, is more than the classic Daddy/Daughter relationship. Liam and I have a unique relationship that doesn’t require words since each instinctively knows how the other feels. As the one who has done the bulk of the hospital time, there are many times I’ve felt like either Sigourney Weaver in “Alien” or the mom character in “The Terminator” movies doing battle with the enemy to protect my child from a morphing alien that just keeps coming back no matter what we do to keep it away. We have leaned heavily on others and have been grateful for the support from so many. Battling cancer is an isolating, all-encompassing and exhausting job. We try to return the overwhelming amount of goodwill by doing our best to keep Liam healthy and as a couple stay strong. We have learned to batten down the hatches and focus on what is truly important, protecting Liam, something that hasn’t come without the cost of friendships. The team we all play on is Team Liam. Even Ella has learned to be more compassionate and sensitive than any 3-year old should be because of Liam’s situation. We’re still as much in the battle today as we were 24 months ago which, quite frankly, is draining. And we have more than 4 ½ years ahead of us of sitting on pins and needles and watching everything. Everything. Right now the pins and needles are in a heightened sense of awareness as scans approach and Liam has been displaying a variety of seemingly innocuous symptoms but collectively amount to worry. Are these symptoms nothing? Are they related to Accutane? Is it something? Is it nothing? It is exhausting and I bet it’s also exhausting to be a supporter of us. This is a long battle and one that would be easy to tire of.
The reality is we now know of more children who have not made it than who have, something that unfortunately reflects the statistics. I guess numbers really don’t lie. We take each loss very personally whether it’s a child we knew or only knew of. It sets us back. We get angry. We get sad. We get scared. The searing pain of the loss of a child is the same anywhere in the world. Recently a little girl in China lost her battle against neuroblastoma. She was in the midst of receiving the same type of antibodies Liam receives at a hospital in Hong Kong. It is the only other institution other than Memorial Sloan-Kettering where 3F8 antibodies are available, something that will soon be changing. The words the mother wrote about the loss of her sweet baby girl seared a new scar on my heart. This is what we’re fighting for…to help impact change that will be felt around the world. It is our responsibility to do whatever we can, because we can. And I believe in my heart that we will. We already are. Every person who reads this journey knows at least 50 people who also love children and can pass the word along. And then those people can pass the message along to another 50 people. And the message of “Yes We Can” will spread the farthest reaches, even those beyond our wildest expectations. What is happening to my child could be happening to your child or any child. I look at the children in Liam’s sweet and innocent class and am sometimes overcome with emotion seeing how normal he looks. You’d never know what he has been through. Liam didn’t get cancer for any reason other than an awful shuffle of the cards of life. He didn’t deserve it. No child does. But to change it we have to work together. It’s literally up to us to say enough is enough.

My birthday wish this past August was for 50 bake sales to be registered. It didn’t happen. We were close, but we didn’t reach the number. Mother’s Day and Liam’s 5th birthday are coming up. For Mother’s Day as my gift in honor of my son who is the reason I am a mommy and his sister who loves him more than anything, I have a request for those who read our journey. I know there are 50 people who can help us reach the goal of having 50 bake sales registered by Mother’s Day. There is nothing that would make my heart happier and my soul affirmation. Now, with that said, I always hesitate mentioning a hope like this because I don’t want to be disappointed. But then I remind myself that it doesn’t really matter if something makes me feel uncomfortable…cancer is uncomfortable. There’s nothing comfortable about it. And who am I to worry about protecting my own feelings? This isn’t about me or my feelings…this is about Liam and his fellow warriors and the need to believe we did everything we can for him and for every child. After all, doesn’t every child deserve a fighting chance?