5-19-10 Update

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I don't have much to say other than Liam is doing well. He's happy. His pain was gone after three days and his hair after two weeks. We've had a lifetime of adventures the past six weeks including a positive blood culture for a particularly nasty bacteria that could have been really (really) bad. We've been through two rounds of chemo, 10 long days of radiation, a quickly scheduled MIBG to make sure everything was "OK", transfusions galore and the all-too-familiar game of waiting for his white blood cells, red blood cells and platelets to recover. But, as is the norm for Liam, this latest detour has been a non-issue. He makes the most of it and moves on. He never complains. He inspires all, especially us to keep fighting.

So then why is it that the kid with the endless supply of good luck - he finds a four-leaf clover his first attempt at looking for the elusive lucky token, he finds lucky pennies almost every day, he is the one who can get the tricky machine that requires a combination of luck and skill to secure a prize to not only give up one but two prizes, he is the one who has gone down this awful road with none of the common setbacks and complications so many others have had - not have the good luck to keep him clean? Why? Why? Why? Why does it keep wanting to sideline my son from being all he can be? Why does it keep challenging us? Have we not done enough? Have we not advocated enough? Have we not shared enough about how painful, scary and frustrating this experience is on so many levels? Please, dear God, tell me why this cowardly beast keeps picking on my son..our son...Ella's brother...and the child who delights us all with his sweetness, charm and curiosity? He says that when he grows up he wants to be a scientist. He says when he grows up he wants to work in Dr. Modak's, Dr. Kramer's and Dr. Kushner's lab. We need him to realize his dream and make it a reality. It's the least we can do - give a child a chance to live. What do we need to do to inspire people to get involved? This is the disease that claims more children than ANY OTHER DISEASE. I don't want it to claim mine...he's too valuable to me. He's too valuable to all of us. Please tell me what I need to do to convince those standing on the sidelines watching our story to get involved. I'll do it. Just tell me what you need me to do to convince you that what's happening to Liam could just as easily be happening to your child or any child. He wasn't a heavy smoker. He didn't live a life of poor health choices eating candy all day. He wasn't a sun worshiper spending hours outside without sunscreen. It just happened. And because it can just happen is what makes us all vulnerable and what should make us all care enough to get involved. If you have children, if you like children, if you have a heart...then please stop reading Liam's blog and start doing. The time is now. Not tomorrow, not next week, now. Maybe people are tired of our story. Maybe people feel like they've done enough or want to move on to something else. Maybe it's hard to be a friend of ours because our nose is always to the cancer grindstone while trying to make it look like everything is perfectly normal on the outside. I can assure you, nothing is normal about this life...the trick is to make it look normal so that you can keep functioning.

In the meantime, we'll continue to shield Liam and Ella from the reality of their situation. We'll continue to allow them both to live, love and discover. We'll continue to advocate. We'll continue to believe that Liam will win, even if we can't see the path. We will continue to share victories and cry over setbacks with other friends in this awful journey.

I'm sorry if this isn't the entry you were hoping to read. Maybe I shouldn't post it. But maybe it's time for a wake up call. The words of Dr. Cheung, one of the brilliant oncologists who works so hard on Liam's behalf, haunt me day and night. "It's not science that's holding us back, it's funding." Great. There's a price tag on my son's head. Isn't that just dandy? Can I even begin to tell you how that feels? My son is priceless. Every child is priceless. Too bad not everyone agrees that children are precious, priceless and our future. But in my heart I don't believe that...I don't believe that's what you think. I don't believe that if you asked anyone from a stranger walking down the street to President Obama what their children means to them they wouldn't say, "everything."

No..no it cannot be.....

It is never easy for me to share the kind of news I must share with all of you today. Last Friday afternoon Gretchen and I learned that Liam has once again relapsed. Cancer was found in two new locations during his regularly scheduled 90 day scans. We did not want to tell anyone until after the holiday so as not to ruin everyone’s beautiful spring weekend. We quickly escaped to our home in NJ to absorb the news and to come to terms with what it meant for Liam and our family as a whole.

The MIBG scan showed a small amount of cancer on his left leg just below his knee and a larger area on his right shoulder coming off of his scapula (bone). An MRI of his shoulder verified that it was indeed new disease and not an injury. The shoulder pain he has been experiencing the last week was due to the disease in his shoulder, not a simple boyhood injury as everyone had hoped. The low dose therapy he has been on since last fall held him for awhile but not as long as hoped. He will begin high-dose chemo tomorrow followed by radiation therapy to the affected areas and then like many we will be searching for the next best option. Liam’s most recent relapse is further evidence of the lack of effective secondary therapies for high risk kids. It is basically chemo or antibodies and if one or both cannot keep you clean then there is little to turn to, outside of a handful of phase 1 studies that have so far proven to be less effective than desired.

It is for this very reason that we must all continue to advocate for our cause, our kids, and to do all we can to raise money and awareness. It is really unacceptable that kids can survive massive grapefruit size tumors, metastasis, infections, day long surgeries, and the other endless risks they are exposed to throughout treatment and hospital stays to continue to slip backward because there is not a therapy yet developed that keeps them where we all fight so hard to get them to. NB should be a curable cancer due to the various consistent signals it presents when compared to other types of cancers; but not enough money or energy is being spent to find out it’s Achilles Heel.

Gretchen and I are focused on getting him through this once again, as is his team of amazing doctors at MSKCC. Liam has a rough couple of months ahead of him but in famous Liam fashion he is sure to make the best of it and continue to inspire us all with his courage, strength, curiosity, and love of life. Please keep Liam in your thoughts and prayers.

Liam’s recent setback has only further ignited our passion and our will to fight back against this insidious disease. In my opinion you are either fighting tirelessly to beat it or simply surrendering to it, and surrender is not an option when your child’s life hangs in the balance.

Sincerely,
Larry and Gretchen Witt

It’s not an anniversary you celebrate…or is it?

February 26th, 2010 marks the 3rd anniversary of Liam’s diagnosis. Three years. Three long years that have gone by faster than I can say the terribly ugly word: neuroblastoma. In three years I haven’t exercised, been to a dentist, or done many of the other things I used to do BC (before cancer). In three years the mundane worries that used to occupy me have vanished. For three years we have lived in a world of terror, happiness, fear, hope, anxiety, peace, and above all love. I never knew the capacity for love could be so deep. For three years we have loved like there’s no tomorrow while trying to live like there is a tomorrow. For three years we have learned, not always gracefully, to live with a level of stress that goes beyond any description. It feels like you’re walking on a mine field hoping and praying you’ll be one of the lucky ones to make it to the other side while you see comrades falling all around you. You stay focused on the goal, but your peripheral takes in everything that’s happening around you. For three years we have seen too many families lose children decades too early. The trail of tears they have to walk as they struggle to live without their child is a journey too painful to comprehend. It has left me unable to write. I didn’t know there could be this much pain in life. I didn’t know there could be this much joy. I have no complaints and Larry and I consider ourselves incredibly lucky to be able to shower our two sweet children with every ounce of love we can…every day. A few nights ago Liam asked me to kiss him good night 200 times. I did without hesitation and would have kissed him 2,000 times if he had asked. You learn to never miss the opportunity to love.

On the night of the third anniversary, sweet Jessie’s mom sent me a brief text message in the evening as I was struggling to wrap my emotions around the significance of the day. Her text said she was thinking about me on the day that both of our children’s lives were forever changed. I had forgotten that Jessie was diagnosed on the same day and year as Liam. And while her family has found comfort and solace in their God, I would be lying if I said the pain of her departure still doesn’t hit me hard. I don’t have the same level of solace…not because I don’t have the same faith but because I just miss her.

But Jessie’s mom’s text reminded me that yes, this is an anniversary to celebrate. We are here…together…which makes us so lucky.

I have fits and starts of so many blog entries. Stories of Liam and Ella as they grow, learn and discover together. Stories of trips to the Museum of Natural History to visit Liam’s favorite room – the Gem Room - that is filled with geodes, minerals, gems, quartzes, and lots of other things that make Liam “oooh” and “aaah” with excitement. I tried but then the pain of someone else’s situation would invade my head and I would lose my will to write. Just this week a sweetheart of a little girl named Layla Grace and a valiant little boy named Sam both lost their battles. And before them, an incredibly gifted young man named Erik lost his battle after being in remission for 13 years. And before Erik there was Santi. Santi who was nothing but sunshine. And before him Pierce whose intense gaze would pierce my heart with love. It takes my breath away and leaves me numb, fumbling and stumbling. I would try to write, but instead choose to go to Liam’s and Ella’s room to kiss them while they’re sleeping.

And then there’s our philanthropic work which takes up our second work shift of the day. Every night we put the children to bed and then pull out our computers to work. Cookies for Kids’ Cancer is our mission. Cookies for Kids’ Cancer is our passion. It’s something we have no choice but to do. Every child deserves a fighting chance and knowing there are treatments waiting for funding in order to be developed are nothing short of heinous in our minds. If children are our most precious resource, then please explain to me why we wouldn’t do everything in our power to protect them? Why? If you knew there was something you could do to stop the pain of losing a child to cancer, why wouldn’t you? Sometimes when we’re working we see Glad’s Cookies for Kids’ Cancer commercial on TV and stop for a brief moment to watch it…and then go back to work with an even greater sense of urgency. There’s no time to waste and we’ve both gotten pretty good on less sleep. And the work has yielded funding for trials at leading pediatric cancer institutions that we hope will offer more children more options. We read every bake sale registration, more than 700 in November and December, and shook our heads in appreciation that people cared enough to want to get involved. We exuded gratitude with each letter we received from people describing their bake sale and what made it unique. The organization has grown and flourished, but there’s more trials to fund and work to be done. One day at a time.

Our fall was filled with uncertainty as we waited for questionable areas on scans to either clear up or “declare” themselves. When a team of a dozen doctors needs to interpret what is being seen on a scan of a child, your child, it certainly leaves you with an uneasy feeling. But we try to push those demons down below our feet and focus on the present of a little boy who feels great and a little girl who calls that little boy her “best friend ever.” The fall included a magical trip to the Florida Keys where Liam learned how to dive and do a flip into a pool which gave him immense joy. The dynamic duo literally spent the week outside in a collection of comfortable chairs on the porch they positioned face to face to form a mini pod. Between swimming sessions or searching for lizards, they ate all three meals of the day in the chairs, watched movies in the chairs, read books to each other in the chairs, napped in the chairs, played Spiderman and Princess in the chairs, practiced writing letters and numbers in the chairs, and sometimes would squeeze together in the same chair to snuggle with each other in one chair. We saw sharks, manatees, fish, and other sea creatures swimming under the dock that was next to the house. We saw the most vivid sunsets across the bay. Liam and Ella reveled in sleeping in a bunk bed…Liam on the top and Ella below her big brother. Every night around 7:00, hours before his normal bed time, Liam would announce he was going to bed. He just couldn’t wait to climb up the ladder to the top bunk. He and Ella loved the experience. We swam with dolphins, sting rays and a sea lion named Mimi who we still talk about every day. It was a gloriously simple vacation and incredibly restorative.

The fall also ushered in the crazy process in New York City of finding a kindergarten, the right kindergarten, for Liam next year. The process includes school tours, play dates without parents where your child is evaluated by school personnel to see if they’re the “right fit”, a standardized test equivalent to the SAT, parent essays, long applications asking questions like “What do you as a family like to do together” (how do you explain that your answer is as simple as just being together, something never taken for granted?), a secret visit by prospective school personnel to observe Liam and other applicants in their classroom, and a parent interview that Larry and I could not make it through without crying. It would start out innocently enough but then the question of, “tell me about your son,” would usher in a wave of emotions and a flood of tears. How do we explain to someone we’re meeting for the first time what our son is like and what he has been through? Do you have a few hours and we’ll give you the Cliff Note version? The fall was also filled with weekly sessions of low dose chemo – one week on and two weeks off. One Wednesday in the fall I dashed into Liam’s school to whisk him off to the hospital for day three of chemo. As I rushed in the door, faces dropped with a look of surprise. Liam was off with a tester who was administering the standardized test that would determine his chance of securing a spot in a kindergarten class. He had a two-inch needle piercing through the thin layer of skin under his collarbone into his medical port, an eight-inch tube dangling to his waist, had spent the morning throwing up before he went to school, and was taking that equivalent of an SAT test? What’s amazing is that the narrative report written about our son talked about how engaging he was, how inquisitive, a “true delight,” a pleasure to be around and a “joy to test.” It didn’t mention that he has been battling cancer or that he had a tubie dangling down his front. The tester couldn’t tell and he certainly didn’t feel like It was important enough to mention he had a “tubie” in. He acted like any other little boy which is exactly what he is. Liam still thinks of himself as completely “normal” and no different than anyone else. And while he’s beginning to ask questions about why he goes to the hospital so much more than other people, he hasn’t asked if there’s something wrong with him. To him, it’s normal to ride his scooter into the hospital, get some medicine for an hour, and ride out. It’s exactly what we’ve always wanted for him – to be normal. We have always maintained that our job is to worry and his job is to be a little boy. We are fortunate we have been able to maintain this position for the past three years. And we’ll do it for the next three years, and the three years after that, and the three years after that, and so on and so on. One day at a time.

On our most recent trip to the Museum of Natural History, he stopped to talk with a museum employee who was on a giant hydraulic platform that was about to lift him up to the top of a totem pole. “What are you doing?” “I’m getting ready to clean the top of this totem pole.” “Why?” “Because it hasn’t been cleaned in almost a year.” “Hmm. That’s cool. {Pause and contemplation.} I’m going to work here some day. I’m going to be a scientist and I’m going to work here some day. I just thought it would be a good idea for me to tell you.”

As much of a science guy as Liam is, he’s also a music lover. He falls asleep every night listening to Jack Johnson’s soundtrack to the movie Curious George. He talks about how it calms him. His favorite day time song is “Sunshine and Lollipops.” We listen to the song over and over and over again. He knows all the words and loves to watch an original video of the singer performing it on YouTube. Listen to it and then watch Liam in your head doing a special dance to celebrate a song that makes, as he says, his heart happy. We live savoring the moment and having nothing but faith and conviction. Our lives are richer. Our lives are sadder. Our lives will never be the same as they were three years ago. But we dance to Sunshine and Lollipops every day.


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Glad/Cookies for Kids’ Cancer TV Commercial: http://www.youtube.com/gladtogive

11/09 - Chef Liam baking cookies

Please stay tuned...

I have been sitting here trying to think of a title for this long overdue update and after a few options presented themselves I opted to simply name it Please stay tuned...
At first it was simply a way to open a post many of you have been waiting to read for several months. Hopefully though by the end of this post it will encourage you to stay tuned and maybe help you understand why posts have been so few and far between.

Liam's most recent relapse really caught us by surprise, and to be honest really knocked the wind out of our sails. To think the bad news we always half expect to hear could hit us so hard, shed new light on the reality of what we were up against and sent us deep into our hole. We have not had the strength to share our innermost hopes and fears like we have been able to for the last two plus years. We were angry, scared, and needed time to heal a bit and to find our voice again. Over the last few years we have witnessed too many families lose their children to cancer. Some very close to us whose children we wanted life for as much as our own. We have learned the facts about why pediatric cancer is so many years behind when compared to the medical advances made for most adult cancers. We have been living in two completely different worlds and we often do not feel like we really fit in or relate to those in one and the other is not one we want to be in and would do anything to get out of. Imagine all that we have experienced in the last few years and the pain we have witnessed Liam endure, the never ending fear, the never ending feeling of helplessness we live with, and all while the world spins madly on around us. I sometimes think that maybe we have done too good a job of handling this curse. We have met it head on and taken it in stride. We have remained endlessly hopeful, committed, and as some have said a force to be reckoned with. But much of this courage, strength, and ability to balance our lives between the two worlds came to a crashing halt when we learned of Liam's second relapse. It was a sucker punch. One thrown by a coward when we were not looking. One that sent us to the ground grasping for air. The wound inflicted was deeper than any before it and it is one we doubt will ever truly heal. Each day suddenly required so much more energy to get through it that any task requiring above and beyond emotional input was outside of what we were capable of enduring. The blog as you know was the first emotional baggage to be thrown overboard. All available energy and focus went into things that can't be thrown overboard like our kids, Liam's care, work, and Cookies for Kids' Cancer, the foundation we started. All things we were more committed to than ever before. So hopefully those of you who have stood by us over the last few years will understand why putting our feelings into words the last few months has been a bit more difficult than we expected. I know Gretchen who has posted the large majority of our postings has found it very difficult and many of you know I all but abandoned posting more than a year and a half ago for similar reasons. For me it was due to the reflective nature of writing such posts. It often forced me to recognize personal feelings and fears that were often painful to acknowledge. I chose instead to keep them bottled up. Needless to say I will once again begin to post news about Liam, his adventures, treatment plans, and to share insightful stories about our hero. We know many of you have a deep love or him and it is only fair that we keep you up to date on the Prince on a regular basis. He continues to inspire us, his doctors and nurses, teachers, friends, and all who have the pleasure of knowing him.

This week Liam is receiving his 6th round of low dose chemo. Each day so far he has attended school in the morning and treatment in the afternoon. This is not a treatment intended to cure him but hopefully it will hold his cancer back for awhile. It does provide him with excellent quality of life right now and another reason we have been silent. We recognize more than ever that time with Liam, and Ella too for that matter, is truly precious and we need to take advantage of every second we are blessed with. There are a few treatment options being discussed but none of them the sure bet we desire and that Liam needs. Each just a trial. Some older trials and their success rate or lack there of known, plus newer trials not yet proven effective or in some cases even safe. We have the option of receiving more 3f8 antibody though it has not been proven truly effective against soft tissue disease which Liam has been prone to.
We have some hope for the humanized version being developed at MSKCC and hope that it can be brought to the clinic sooner than later. We and many of our closest NB families are dealing with relapses and time is something we all realize we have little of. It is hope that gets us all from one day to another. Hope that science can win the battle against neuroblastoma and pediatric cancer as a whole, hope that our efforts will help make a difference, and hope that all of you will stay tuned! We continue to need your support, love, and hope. We need each of you to help us make a difference and to be advocates for pediatric cancer...for Liam, for Cookies and all that we are trying to do to help make a difference. If you are new to our blog please take some time to read the archives to gain a true feel for our journey and how we have arrived at this point this point in time. We are looking forward to a magical holiday season filled with love,joy, and discovery and wish the same for each you and your families.
By the way there is still time to order cookies and have them arrive by Christmas or take your time and send as a New Year Gift. www.cookiesforkidscancer.org

My name is Liam. “L” - “I” - “A” - “M”.

Today was day two of round three of low dose chemo. It’s not so bad…compared to what he has been through. He has a full head of baby soft hair…except for the oval-shaped spot on the back of his head courtesy of a pressure wound while on the bloody bi-pap machine at Cornell. I have to restrain myself from marching him over to Cornell to say – “Hello, Remember me? I’m the mom who you thought was crazy when I told you his head had a HUGE goose egg growing out of the back of it from the tight straps around his fluid swollen body and you totally dismissed me? Well, look at his head now! I told you something was wrong!” But that would only upset Liam and I’ve been told his hair will eventually grow. I suppose it’s one of those concerns that’s a bit down the worry list but I’d be lying if I said it doesn’t irk me. He has regained a lot of his energy, so much so that he outpaces Ella when we’re out on scooters but he’s still suffering from a raw esophagus from radiation that makes eating and drinking impossible without narcotics.

Daddy was out of town this past weekend so we spent the weekend out and about town on scooters. Ella’s is pink and she wears a princess helmet. Liam’s is orange and he wears a Spiderman helmet. Mommy’s has no color but has a board wide enough to accommodate Liam and Ella when they get tired of scootering. Yes, all three of us can squeeze onto my scooter, albeit very carefully. We were outside for hours on our scooters on Saturday exploring the Hudson River Parkway…in the pouring rain…and loving every minute. We came in for a break and then it was Liam who announced he wanted to do more scootering….so out we went for a night time jaunt from 44th Street and 10th Avenue to 58th Street and 8th Avenue. Two of the blocks were on a fairly steep incline which Liam went up without any struggle while Ella had to walk her scooter up the hill. Liam had one face plant – head over the top of his scooter handle – but not while going very fast. He scraped his nose, but not badly, but enough to scare him and cause a scab. As I was crouched on the sidewalk comforting him, I was in a strange way happy to hear him crying over something so normal as a scraped nose instead of a personal violation courtesy of cancer treatment. On Sunday we scootered for hours along the Hudson River on a picture perfect gorgeous September day. We had an amazing day laughing, loving and being together. We explored piers, checked out every sight along the way from a helicopter launch pad to a restored fire boat built in 1931, and watched a cruise ship makes its way along the river on the way to the Atlantic. In our pack, Liam leads, Ella follows and I stay close behind reminding Ella to keep her eyes forward and looking for bumps. Liam points out bumps to Ella and yells warnings to her. It would be Ella who would get tired and insist on catching a ride on Mom’s scooter, not the cancer patient who has been through more than I care to recount and who has every reason to be the one who tires first. He reminds me of Lance Armstrong….he does what everyone else thinks is impossible. Every time they dynamic duo went down an incline of any sort, there would be hoots and hollers and squeals of laughter. Liam has absolutely no fear of speed…and there’s a transfer of fear to me as I watch and pray he’ll be OK.

He took the hospital by storm…on his scooter. On Monday he rode into the hospital on his scooter and took great pride in showing off his new mode of transportation. He couldn’t wait to show Dr. Kushner how fast he could go on his scooter, a feat on many fronts. Ella was also along for the trip, as our new regular hospital team member. When it came time to access his port, he looked at me through tears and asked if he’d still be able to ride his scooter and I assured him yes. He also asked when we would be done with all this medicine stuff, to which I replied as soon as we possibly can be. And sure enough, after the insertion of a needle into his port which has a 7” long tube attached that snakes to his waist and before he would allow a shirt to be put over his head because of fear of disturbing the tubie, he tested riding his scooter.

Today he felt some of the side effects associated with one of the chemo drugs. When we got home, he had to take the remaining two of three chemo pills. As soon as the pills were down, he looked at me and said, “What if I have to throw up?!” I begged him to calm down and relax and not throw up but within 20 seconds he was running to the bathroom with me following and exploding with vomit that consisted of curdled milk and bunny crackers. It was so powerful it flew out his nose. He wretched and wretched and I saw the chemo pills come out with the powerful waves of nausea. And then, knowing that if he didn’t take those two pills we’d have to go back to the hospital which would mean he wouldn’t get to visit with his special friend Taber who he adores, I reached into the toilet and the sifted through the vomit until I retrieve the two pills, rushed them over to the sink, rinsed them off and then started blowing on them to stop the process of the gelatin capsule from disintegrating which would make the pill useless. It was a knee-jerk reaction. I don’t normally forage through vomit, but I would do anything to let Liam have a play date he was so looking forward to. After we cleaned him up and rinsed out his mouth, I looked at him and said, “Buddy…here’s the deal…you either take these two pills (which were standing upright stuck to my fingers but still intact) or we have to go back to the hospital to get two more.” He looked at me, asked if they were still OK to take, took my word that they were, opened his mouth and pulled the pills off my fingers and swallowed them. And once again I say that he is my hero. My poor guy who is still can barely eat or drink because of radiation burns to his esophagus did what needed to be done in order to move on.

Today there were special visitors at the Pediatric Day Hospital. Three Yankees players came to say hi. Now, Liam doesn’t know who the Yankees are nor has he ever watched a baseball game. He knows the sport from having learned about it firsthand. He and Ella stood at the front of the crowd looking at the larger than life players trying to understand what the big deal was. After the presentation the players signed balls for all the patients. Liam picked up a ball, walked over to Andy Pettitte, placed the ball on Andy’s knee, borrowed Andy’s pen, very slowly and deliberately wrote his name on the ball and handed it to him. Andy looked at the ball with complete surprise and wasn’t quite sure what to do. Liam then said he had to give the ball to his mom and walked away. When Liam showed me the ball with his signature, I explained that usually people want the baseball player to sign the ball, not just borrow the baseball player’s knee. He wanted to know why. So I explained he’s a very famous baseball player and people like to have baseball players sign balls as a special gift. He was completely perplexed by the concept of wanting someone else’s autograph, but decided to go along with the idea. So off he went…back to Andy Pettitte to ask him to also sign his ball….which Andy graciously did. And after he came back to show me the ball with two signatures….Liam went back over to Andy one more time to give him a big kiss on the cheek which Andy welcomed from the little boy who didn’t exactly follow the flow of the way such situations normally unfold. And as Andy and the Yankees crew were leaving, yelled out…”Bye! Thanks for coming!”

Ah Liam…you are one of a kind.

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.