Finally. An Update. Friday, August 13th.

Friday the 13th of August marked three weeks since surgery. The surgery itself was fine...as far as surgery goes. Dr. LaQuaglia once again literally saved our son's life and has kept him in the game. What that man does as a matter of routine business on a daily basis goes beyond comprehension. It turned out that the lymph node had sprouted tentacles that were branching out from it and ouching his esophagus, pulmonary artery (or was it the vena cava?) and lung. I don't even want to think about what it was ready to do. It was one of Liam's shorter surgeries, but after a too-long wait for a surgery update that left us anxious and nervous and without the benefit of a waiting room filled with friends to keep us preoccupied like we have had for Liam's other surgeries, it felt like one of the longest.

The past three weeks have been very long weeks filled with lots of annoying "little" things that individually can all be explained but collectively make for tense times. The roller coaster we normally ride has been even more intense. We had issues while still in patient after surgery that had me trying to comfort a little boy who was beside himself with anxiety while simultaneously and vigorously explaining to nurses how we were going to deal with a blocked port...an episode that started at 3 a.m. and didn't resolve itself until well after 5 a.m. They were ready to give up after a lackluster attempt and put Liam through something very painful. I was determined that they were going to work at it like I have seen other nurses work at a blocked port until they resolve the issue. In the end, it unblocked without needing to make Liam endure more pain.

After surgery on Friday afternoon, he was up and shuffling along, completely naked except for shoes, at 10 a.m. on Saturday morning. He would painfully shuffle to a fish tank filled with lots of colorful fish, glance up, and beg to shuffle back to the room. While we were still in patient after surgery, our sweet prince endured having his back pounded on every two hours through the night for the first two nights after surgery, including directly over his brand new 6" incision, to loosen the build up of fluid in one of his lungs that was heading towards pneumonia. He would yelp and cry in pain during the procedure while giving me a bear hug...all while listening to "his friend" Jack Johnson sing to him for comfort. He never once complained.

For 13 days post-surgery, he coughed and coughed and coughed nonstop trying to open up his lung and was finally treated with an antibiotic specifically for bacterial pneumonia, even though he didn't have any fever which is the tell-tale sign of a bacterial infection. The coughing was so intense it would make him throw up, cause his stomach to be in a constant state of discomfort and to be exhausted from the effort. It was vicious cycle that finally started to resolve itself around day 17.

Since he was returned to us from surgery, it feels like every time he starts to feel better he's hit with something that sets him back. It doesn't help that his recovery has involved more treatment. In the past three weeks he has gone through two rounds of Rituxan (the first was six days post-surgery), a different antibody he hasn't received before, which is a relatively "easy" experience although one that people have died while receiving so it is monitored very closely and requires a very long day (11 hours) at the hospital. He has also had a round of Irino/Temo low dose chemo between the rounds of Rituxan. He has had no appetite, although in the past 72 hours we have seen it coming back. ("You want cookies for breakfast? Absolutely! Eat as many as you want, honey! Can I get you some ice cream?") (Yes, the insanity of the situation never loses itself on us.) He has lost the weight he worked so hard to put on the weeks before surgery, something that is frustrating to him and us. On top of the pneumonia-like symptoms, he was hit out of the blue with the most awful stomach virus symptoms exactly one week after surgery that had him completely down for the count but increased his white blood cell count from a normal range of 4 - 11 to 21.5. When we got the CBC results with that white blood cell count, everyone...and I mean everyone...on his medical team was a bit wigged out and decided to share that wigged out feeling with me in front of Liam which left my knees ready to buckle as I tried to nonchalantly take in the news while acting like they were telling me the score of baseball game I was vaguely interested in. "He has two key key tumor markers that are incredibly elevated!" I was even asked, more than once, if I was giving him GCSF shots to increase his white blood cell count. ("Oh, yeah, you caught me...I have been giving him the injections he despises almost as much as he despises Temodar capsules just for the fun of it!) Not surprising to us because we knew how sick he was from the rogue virus-like symptoms that plagued him, his white blood count has since gone back to normal. In the 21 days since surgery, he has gone through radiation set up...yet again but this time with Ella by his side...that included another tattoo to help line up the radiation beams in exactly the right spot. This time to help ease his high anxiety, I told him I'd get a tattoo first to show him how it didn't hurt. The technician administering the tattoos thought I was joking. I wasn't. I let Liam pick out the place on my body he wanted me to get the tattoo. He chose a spot on my right forearm to match a freckle on his right forearm. He received the first of 10 radiation treatment to the area where the lymph node was. During the treatment course, he's going to get some more radiation to his scapula to go after it again.

It has been a lot but we're not complaining.

Throughout it all, we have been living and loving and loving living. We have been to the movies (Cats & Dogs isn't so great but the kids loved it), we have stumbled upon an amazing free concert of music from around the world at Lincoln Center that Liam and Ella loved, we have been enjoying the peace and quiet of our home in New Jersey, and with Ella's help ("Come on buddy, you can do it") have been prodding Liam along to get back to the Liam we all very much want and need to see...the little boy with boundless energy and enthusiasm. He's getting there. Slowly.

Next Friday is August 20th. It's my birthday. It's the fourth week after Liam's fourth surgery and the fourth birthday I'm marking (noting, not celebrating) since this journey began. Next Friday, August 20th, Liam has a CT scan scheduled. I have two favors to ask. 1. Please pray/believe/hope/chant/meditate that the CT shows what we all want and need for it to show...nothing. 2. Please have a bake sale this fall to support pediatric cancer research. Our incredibly supportive supporters at Glad just announced a bake sale match period from September to December. We want to take full advantage of this match. We have to...Liam and his friends are counting on it.

It has been a hard few weeks but we have never lost our faith...and he has never lost the essence of who he is...a sweet little boy who wants to do nothing more than to be a little boy and big brother.

In the past few days, Liam has been planning a party he wants to have this fall. He's calling it a fun party for everyone to come and have fun. While receiving antibodies and chemo, he has slowly and diligently written out invitations, come up with a schedule for the party, and deliberated on every aspect of the party. We will keep planning the party because that's what we should all do...look at life as one big party to enjoy and celebrate.

Mother's Day

I spent this Mother's Day at my alma mater, Meredith College, delivering the commencement address. It was a surreal experience, somewhat like living in the alter world of pediatric cancer. Much of the speech focused on the very first cancer mom friendship I made with Shirley Staples. Shirley, unbeknownst to me when we met, is also a graduate from the same college with the same degree. Having Shirley be the first cancer mom I met be a fellow grad of the English Department of Meredith, a small women's college in North Carolina, was about as likely as Liam being diagnosed with cancer. Coincidence?

To the Class of 2010, thank you again for inviting me to be your commencement speaker. It was quite a day.

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."

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.

Early February 2009

Stories and Vignettes from Round 2 of Regular Dose of Antibodies.

Monday Monday.
Monday, February 2nd was tough. Mondays are always tough in a week of antibodies. The song, “Tell Me Why I Don’t Like Mondays,” plays on a continuous loop in my head as I try to reason, explain, cajole, plead and finally grab Liam to restrain him for a finger stick. It really is no fun. He curls his fingers into the palm of his hand with such strength that it takes two adults to uncurl one finger. He cries, screams, begs me not to do it, protests, yells “no…no…no…no…no” over and over again and kicks with the strength of a donkey. I feel awful restraining him. I feel like I’m betraying his trust and hope and pray he’ll forgive me. And then it’s over and he bounces back to being Liam. Unfortunately I don’t bounce back as quickly but try to shake off the experience since he apparently already has.

The insertion of the peripheral line in a vein in his arm was equally unpleasant. He was nervous about it, understandably so, and kept asking seemingly random questions that were not at all random about the process for about 24 hours prior to the actual deed. “How big is the needle?” “Is it going to hurt?” “How does the little tubie stay in?” “How does the needle come out?” And when we finally had a bed, in one of the shared room, the real assault began. First the shot. OK, done. Then, the peripheral line. It’s not that either Liam (or I) would prefer to still have a medical port and the stress associated with a temperature over 100.4, but to a 4 ½ year old the concept of a needle piercing a vein is tough. We had a different nurse than we normally do which added to his discomfort. We were in a different room than normal which also got him off kilter. (“Mommy – Why are we in this room?” “Mommy – When are we going to go to our room?”) This time it took three adults to restrain him in order to get the task completed. I have never seen Liam like this. He literally was hysterical with fear. And then unfortunately our poor nurse hit a valve when inserting the needle and had to abandon her attempt to access that vein. Out came the needle. We had to do it all over again with a fresh arm. As we were trying to keep him still, he was trying to do anything he could to stop the process. I heard the nurse calmly but firmly saying, “Liam – You can’t bite. You can scream and yell, but you can’t bite.” He hadn’t bitten her…yet…but he was a cornered animal looking for any escape. OK. Did I mention how much I hate Mondays? After it was finally over, he almost immediately fell asleep in my arms. And the final part of the day’s assault…the administering of antibodies. Now, just to make sure I am clear, I am not complaining about antibodies….not in the least. I am grateful for the opportunity to receive them. I can justify the pain knowing what it can and hopefully is doing. But I’d be lying if I said a piece of my heart isn’t ost every time I go through the experience of hearing my sweet, sweet guy cry out in agonizing pain. But would he have pain this round, the tell tale sign that the treatment is working. This is the part of the twisted story where you nervously and hopefully wait for the pain. Come on pain…show your face. Wait. No. What am I saying? I’m wishing pain on my child? But as crazy as it sounds, that’s exactly what I’m doing. And then it started. And everything was good. Sort of.

When he was in recovery mode, he called out to Cat, his gal pal nurse who has spent more time with us during antibodies including the very first time we went through the experience. Cat is the nurse he has shared a cab with which makes her extra special in Liam’s mind. Cat is the one whose name I urgently called out over and over when Liam became unresponsive back in the fall which makes her extra for me too . With slurred speech and droopy eyes, Liam gingerly called out for her. “Caaaaaaaaaaaaaat. I want you to ride in the cab with us.” And Cat promised Liam she would. After Liam had recovered enough to be able to moved to lay down in his stroller, he insisted on giving out the special Disney character pens to his doctors and nurses and others who play pivotal roles in his life that came back from our recent pilgrimage to the Magic Kingdom. We tried to convince him to do it another day, but he insisted on doing it right then and there. Cat pushed the stroller. I carried the bags that come along with Liam when he’s at the hospital. Liam clutched a plastic bag filled with a collection of Mickey, Minnie, Tinkerbell, Donald, Chip and Dale, Goofy and Pluto pens. Liam would reach into the bag and through blurry eyes determine which character should be matched with which person who he thinks of as friends but whom are part of a highly-skilled medical team working very hard on his behalf. I’m not sure if it was a coincidence or planned that Goofy was deemed a good match for Dr. Kushner and Linda received Chip and Dale which, if said fast, sounds like the famous and talented male dancers.

When we finally left the hospital, Liam was snuggled in his stroller wrapped in blankets and dozing in a narcotic haze. He didn’t appreciate the blast of cold air that greeted us. And removing him from his stroller cocoon was not easy. When the cab pulled up to the train station to drop off Cat, she quietly exited to let him continue sleeping. He, though, was conscious enough to know she was leaving. “Caaaat….wait…” His voice sounded so small and weak. Cat came back. “You forgot to give me a kiss and a hug.” She gave him a kiss. “Caaat. A hug too.” And after her very long Monday, she leaned down to give Liam a very tender hug amidst all his owies. We said our good byes again and she was on the curb when he urgently called out to her again. “Caaat. Caaat. Wait. I have to ask you something.” Once again, she came back and leaned next to him. “Caaat. Um…Um…Um….Caat. What kind of soap do you use in the shower?” “What kind of soap do I use? Ah…Let me think…cucumber melon. It’s green.” And with that information, Liam finally allowed Cat to depart.

The next day when we arrived, Cat presented Liam with a bottle of cucumber melon soap. I’m taking that bottle of soap and packing it in Liam’s bag to use in the shower at the Y after his weekly swimming lessons.



Conversation between Liam and Ella overheard on Thursday morning, February 5th around 10:30 a.m. on day four of round 2 of regular dose antibodies.

Liam: “Ella, when I come home from the hospital I’m going to have owies and I need you to not make any noise. So you can’t drop the blocks when you’re building a horse barn with Daddy like you did last night. I don’t like that noise. It’s not that I don’t love you, I just have owies. But I only have one more day of owies after today.”

Ella: “OK Liam. I know Liam.”


NASCAR – Staying in the Race
At some point during the week, I had an epiphany that the life of a pediatric cancer patient is similar to a NASCAR car. Let me preface this by saying that I don’t know too much about NASCAR, but I do recognize a few drivers and have always been impressed by the sense of community in the NASCAR world. My impression of NASCAR cars is that during a race, pit crews do whatever they can to get a race car back onto the race track, even if the solutions are slightly unorthodox. It’s all about staying in the race, even if driving under challenging conditions. When you look around at kids in various states of treatment, some with hair but most without, some able to walk and some not, some looking present and accounted for with others looking far off and distant, some zipping around like there are no issues with others being a bit more tentative, I was struck with the feeling of being in the middle of a NASCAR race. You hear parents talking about treatment options and plans like they’re no big deal. “Yeah, we’re going to do another round of high-dose chemo,” or “We’ll do 20 more hits of radiation to the tumor bed,” or “We’ll be getting an injection of radioactive isotopes that will attach directly to cancer cells and I can’t touch or be near my child for a week until he isn’t radioactive.” In our world, a treatment option is better than no option, but oh how unbelievably abnormal it all is. Fix ‘em up and get ‘em back in. It’s just crazy.

A short Liamism
(Liam to Grandpa Rich in Michigan following surgery to repair a shoulder injury.)

“Grandpa, why are you getting old?”


Liam and Barack
Liam is making a movie. We actually have several takes of it and if I could figure out how to get the movie downloaded from my phone, I’d be happy to show it. He heard that Barack Obama smokes and is quite disturbed by it. His concern is not that Barack will get cancer, Liam doesn’t know the word cancer or what it means, but that Barack’s brain will get hurt from smoking which is what he saw in a commercial. He decided, on his own, to make a movie for Barack to tell him to stop smoking and decided the best place to shoot the movie would be at “his” hospital. Of course the irony of a 4 ½ year old cancer patient who doesn’t know he’s a cancer patient or, for that matter, even a patient making a movie about why smoking is bad from a hospital that only treats cancer is a little overwhelming, but that’s another story. In the movie, Liam emphatically tells Barack that smoking is bad, really bad, and if he doesn’t stop he’ll have to go to a hospital. And then, because he’s 4 ½ and more interested in playing, closes his movie by asking Barack to come over to his house to play. Oh, and then snorts like a pig to close the movie.

A new love: Wall-e
The new favorite movie in our house is Wall-e. He has watched the move so many times we can’t count and asked so many questions about recycling and space travel that we also can’t count. He loves Wall-e and turns toys in his collection that make noises that sound like Wall-e into Wall-e. One of his favorite parts about the movie is the theme song by Peter Gabriel. He loves the song, so much so that we downloaded it for him to listen to over and over. He wanted to know the words, so we looked them up so that he could learn them. When we’re in the car, he sings along to the song in his sweet, squeaky voice. If you have a chance, listen to the song and hear Liam’s little voice singing along emphatically singing, “We’re coming down to the ground!”

Cinderella
One of the activities we took part in during our storming of Walt Disney World was breakfast with the princesses. We arrived at Cinderella’s Castle and waited in line with lots of little princes and princesses, but mainly princesses, waiting their turn to greet Cinderella. We’re not big on the princess circuit yet. I couldn’t even identify Belle or Princess Jasmine so the whole concept of meeting the princesses was interesting but certainly didn’t have my kiddies in the frenzy of excitement that it did with other children decked out in their princess outfits. When our turn came, the red velvet rope let us into the special area with Cinderella. Ella was completely shy but Liam stepped right up to say hello. He was quite taken with Cinderella’s beautiful blue dress and perfectly coiffed hair complete with princess headband. He cocked his head to the side, put a hand on his hip and innocently said to Cinderella, “Ah, we’re going upstairs for breakfast…would you like to join us?” Cinderella clearly was taken aback. She laughed and explained in her princess voice that she was very busy greeting other knights and princesses but would be upstairs later and be happy to stop by to see him. And then, being Liam, he paused, furrowed his brow, put his hand on his hip, cocked his head and said, “We have a really pretty hotel room. Would you like to come over and play?” Cinderella was quite gracious as she tried to explain that she had previous engagements. I was quite surprised, impressed and proud. And then, snap, the picture was taken of all of us surrounding Cinderella. During the rest of our trip to Disney Liam would declare whenever he saw Cinderella, “there’s my friend!” He also hijacked all of the Cinderella dolls in the collections of princesses Ella collected during our trip. Since we’ve returned from Disney, there is a Cinderella positioned on the dresser next to his bed in the city home (what I think of as the “hospital home”) and on the top of the headboard in the country home (the home I think of as home). Cinderella, you might have made the biggest mistake in your life. I think you should have taken Liam up on his offer to come over and play.

Names.
There are times I get stuck in a freeze frame state. My body is functioning and it looks like it’s moving, but my heart is frozen. Someone will get tough news, and I freeze as I take on that family’s weight. A child will lose their battle and I freeze with a noose wrapped around my heart. I go to this place where I feel vacant and empty and the only time I really feel like I can snap out of it is when I’m with Liam and Ella. The thing I didn’t think was possible just recently happened. I now know so many children who have lost their cancer battles that names are being repeated. There are two Jessies. Two. Two Jessies who should still be here; One who was on the cusp of spreading her wings and starting her senior year of high school, and another who was in kindergarten getting ready to embark on her school career. One Jessie was Liam’s first and much older girlfriend and the other a roommate with us during one of our hospital stays. There are so, so many who share names who are in treatment, something I didn’t think possible. And the faces of those children who have been lost are permanently etched in my memory bank. I have snapshots of children burned into my memory bank. A smile seen in the playroom while tackling a Scooby Doo video game. A grimace during a painful post-operative walking session to get a body moving again. A chorus of happy birthday for a 5th birthday. (I can’t sing happy birthday without welling up with tears.) Those names and faces give me inspiration. They’re also incredibly painful. There are two Jacks who are back in the thick of the battle, both for a second time. Those Jacks and their families are with me all the time. There were two Zachary’s but one lost his battle this past fall. The names go on and on and sometimes it just gets so overwhelming. No one said life was fair and I’m not feeling sorry for myself, but come on powers that be…can we give kids a break? Seriously…let’s let kids be kids and save the crappy stuff for adults.

"Just be.”

Without further adieu, we’re good. We’re savoring every smile, every romp in the snow, every run down the hill in the sled, every discovery, every funny line, every observation, every milestone, and every memory we can squeeze out of a gloriously ordinary day. We love the appearance of ordinary. It’s nothing less than glorious. We love blending in and Liam’s full head of hair certainly helps make that possible. We love Liam and Ella being on equal ground with Liam resuming the role of dominant older brother vs. Ella needing to tip toe around him and be the nurturing caregiver. We spend a lot of time showering our two pumpkins with an outpouring of demonstrative love and, at times, have carefully carried sleeping children from their beds to our bed just so that we can be close to them. Liam asks every night for us to snuggle with him like a bunny and we are more than happy to oblige. The past ten weeks haven’t been without the medical world crashing in on our effort to just be. The weekend before Thanksgiving and a week after a rough round of antibodies, we were back in Urgent Care with a temperature. Ella had an ear infection earlier in the week which included a fever, so we chalked it up a sisterly sharing of germs. But a fever in a child with a medical port is not something to take lightly so on a Saturday night, the evening of Fireman Tommy’s Cookies for Kids’ Cancer Pub Crawl (who said you have to bake cookies to support Cookies for Kids’ Cancer?), we were rushing back to New York City from our “country home.” It was a long night. We were finally discharged around 2:30 a.m. to go back to the apartment and meet up with Daddy and Ella. Even in the wee hours of the morning, Liam welcomed the blast of cold air on his face as the double glass doors opened and proclaimed how happy he was to be leaving the hospital. “Good Bye Hospital! See ya!! We’re going home!!” Hearing his relief made me realize just what a good sport he is when he’s there and how much he really doesn’t want to be there. When we finally found a cab, always challenging in a residential area at 2:30 a.m. in an area with few bars, Liam was making plans for Sunday. He was still sound asleep in our bed when the phone rang around 10 a.m. It was a nervous-sounding resident trying her best to be authoritative by telling me we needed to return to the hospital immediately to be admitted and start a course of IV antibiotics. Once again one of his blood cultures tested positive for bacteria. It was the third positive culture since August and once again, it was the same type of bacteria that had been previously explained away as rogue positives from contamination or other reasons. No. No. No. This isn’t what we wanted to hear. Was this another contamination issue? Could it be a false positive? He was resting comfortably in bed with no fever and hadn’t had one except for the original temperature that brought us to the hospital. Did he really, really need to be admitted? Couldn’t we just watch him closely? Could we do IV antibiotics at home? How could I crush his spirit again by telling him we had to go back? No. no. no. no. no. We quickly found a friend Ella could spend time with and made arrangements for her to be picked up and loved. And then with heavy hearts but with a light tone of voice, explained to Liam we needed to go back to the hospital. He wasn’t happy but he understood. And with the added bonus of having Daddy along for the trip, we returned to Urgent Care with the condition that we were going to have a consult with infectious disease first before being admitted. It’s always a fine line of not wanting to be a “difficult” family but wanting to protect your child’s spirit by doing everything possible to avoid a hospital stay. It was a long day…a nine-hour odyssey in a small room in Urgent Care. We met with the head of infectious disease for Memorial Sloan-Kettering, an obviously brilliant man who wore glasses decorated with rhinestones on the wings and who drew on the sheets of the bed to illustrate his theory as to what was going on with Liam’s no symptoms but successive positive cultures. (We’ve since been trying to explain to Liam that he can’t draw on his sheets even if the doctor did.) In the face of three positive cultures and a desire to not constantly look at a thermometer as a bad thing, the decision was made to remove his medical port which seemed to have some bacteria hanging out in the “sludge” that collects in ports. It was now after 7 p.m. and in order to be put on the emergency surgery schedule, we needed to be admitted and hope we could get on the schedule as an emergency add on. Damn. Daddy left to retrieve Ella who had been with a preschool friend the entire day and made herself so comfortable that she took a nap on Valentina’s mommy’s chest. We finally got to a room, in isolation because we had his nose swabbed for RSV just as a precaution, around 9 p.m. Liam hadn’t had a temperature in over 24 hours. He finally fell asleep around 11 p.m. after proclaiming he had had a long day. And then, before I could even spend time thinking about the decision that was made, in came Dr. Kayton bright and early on Monday morning to take Liam to the procedure room to remove his port. I carried Liam down the hall of the inpatient side and crossed the hallway to the out patient side of the hospital, past the cubby-size waiting area where nervous parents hold vigils, to the room he is familiar with as the one where “blood” is taken from his pelvis. (We haven’t explained that they’re actually taking bone marrow…we haven’t felt like it was something he really needed to know so we have explained it as taking blood, something he is familiar with.) And then just as we were entering the room, I quickly scanned the landscape to see a large tray of surgical tools next to the stretcher. I kept Liam’s head tucked next to my head so he couldn’t see in the room. “Dr. Kayton – Could you please cover those up?” There are certain things Liam just doesn’t need to see yet. And yet again, Liam and I assumed our familiar role of me holding him close to my chest as the white medicine he has such an affinity for enters his system, he quivers and shakes, and falls into a drug-induced sleep. I hate laying his body down on the procedure room table. I hate leaving him. I just hate it. But I did. I kissed him on both cheeks and his forehead, told him how very much I loved him, and left him to the expert hands. As I was leaving, Dr. Kayton said that they were going to be taking bone marrow too…per Dr. Kushner. Oh – OK. Sure. No problem. Bone marrow and bone marrow aspirates. The good news was we wouldn’t need to come back in a few weeks for more anesthesia. And then I waited, along with nervous parents and children waiting their turn to go to the procedure room. It’s a hard wait…you can almost smell the nervous energy. You can’t read. You can’t focus. No song sounds right to listen to. You just wait. He came out of anesthesia and promptly threw an anesthesia-amplified fit when he realized there were bandages on his pelvis. He hates the compression bandages used to stop the bleeding after a core sample of bone and bone marrow are taken from four sites in his pelvis. Unlike the early days when he would leave the bandages on for weeks, he now insists on getting them off as soon as possible. He cried and cried and attempted to pull them off with clumsy arms that weren’t quite working right from the white medicine. I tried and tried to comfort him and explain why they needed to stay on just a little while. He compromised by falling asleep on me and I carried him back to the hospital room and waited for him to recover so that we could leave. He woke up, declared himself well enough to leave, and we started to discharge process. He wasn’t happy to discover the peripheral IV in his arm which was put in under anesthesia. He was even less happy to hear it would need to be removed before we could leave. It took countless packets of adhesive remover to loosen the bandage securing the IV in place in the crux of his arm. When it was finally loose, he very nervously and cautiously removed it and was delighted it didn’t hurt. After the tube was out, he examined it, played with it, commented on the small size and no needle, and generally was fascinated.
e returned to our home in the country on Monday night to recover, think about the significance of Thanksgiving and resume just being. It was a glorious week of being together and on Thanksgiving, we gathered at the dining room table which, to Liam and Ella’s delight, was festively decorated with twinkling turkey votives. Liam, true to picky food eating preference, ate chicken nuggets while we all ate a Thanksgiving feast. Last year on Thanksgiving, both kids were asleep when we finally sat down to eat. And as soon as we said grace, Larry and I burst into spontaneous tears. This year Liam and Ella were with us at the table and with Grandma’s help, we enjoyed a meal together for which we were very thankful.
And then as soon as Thanksgiving was over, the 2nd annual cookie drive commenced.

The cookie drive is all encompassing and every dozen cookies sent as a gift equals hope. We pressured ourselves to make this year’s sale more successful than last year’s. It had to be. We have a disease to do battle with. And knowing how much good last year’s cookie sale did, we had to make this year’s sale more successful. Every night and weekend was spent answering consumer questions and every hour we weren’t at work was dedicated to cookie work. At one point during the cookie craziness, we realized that Ella had learned how to say, “Cookies for Kids’ Cancer.” Mid-way through the cookie drive, we had two marathon baking sessions at a cooking school in New York City to bake 13,000 cookies representing the number of children diagnosed with cancer each year. The cookies, which were packaged in gift boxes, were sent with notes of love to families staying at Ronald McDonald Houses across the country as a showing of support. The volunteers came from all over like Emily who flew from North Carolina to be with us and Katie and her family who drove several hours from Pennsylvania. Dozens of people arrived early on a Sunday morning and stayed into the evening. Aunt Marge and Uncle David manned the ovens with precision. Fran and her husband, Jackie, Fraya, Maggie, Tim and his wife, John Brooks and his amazing family, mothers from Liam’s and Ella’s preschool, and so many people from so many walks of life…some new to the cause and some for a second year. It was labor intensive work – hand carrying boxes across a lobby that didn’t allow hand trucks, bringing supplies from the apartment to the cooking school, transporting boxes addressed and ready to be shipped to Ronald McDonald Houses eight blocks, making a pickup of supplies in Brooklyn, and constantly be looking at the boxes of dough and calculating how much was left to bake. We baked on a Sunday and Tuesday.

On Tuesday afternoon after we had finished baking and most of our volunteers had left a beautiful woman with luxuriously thick hair introduced herself to me. She was about my age. Her name was Lillian and she found her way to our bake-a-thon via a mutual friend. I liked her the minute I met her. And then she told me our true connection. She was a neuroblastoma survivor who was diagnosed when she was around 2. She had been given less than a five percent chance of surviving. She beat the odds. And she lived less than a block away from us. She and Liam shared the same surgeon and she showed me the signature Dr. LaQuaglia scar that wrapped around her body from her belly button to her back as proof. Her teeth were normal. She didn’t have hearing aids. She was smart. She was successful. I needed to meet her. I needed to know she existed.

And then on Wednesday after all our packages were on the way to families who were away from their homes, Liam had his three month scans. The scans that leave you with a dry mouth and weak knees. Liam was completely oblivious to the stress, played the role of greeter to everyone he saw. He was Mr. Personality serenading nuclear medicine with sounds from his blue guitar. Wednesday was the CT exam and MIBG injection. Thursday the MIBG and brain MRI. The brain MRI was incredibly loud. Liam didn’t like it and, as he does so often when having to deal with things he just doesn’t want to deal with, opted to fall asleep during the MRI. It made me think of the time he was on a ventilator which he hated with a passion and opted to fall asleep instead of having to be awake and uncomfortable.

And when the results came in, we reset the clock for 90 days. We could go on just being.

Christmas was a magical time. Liam and Ella reveled in the excitement of Santa. Ella slept in Liam’s bed on Christmas Eve. They were both too excited to fall asleep and kept each other company with talk about Santa. We watched with joy as they opened presents and squealed with delight. Liam loved his model of the solar system. Ella loved her baby doll twins that came with a trundle bed, blanket and pillows. They played and played and were just beyond excitement. We spent two weeks in New Jersey, the longest period of time we’ve been here since Liam was diagnosed. It was incredible. We all felt “normal.” It felt good. It felt natural to be here in our home. It snowed which brought a new level of joy and entertainment. Our sledding jaunts were filled with laugher. Every day Liam would talk about how much he loved the Christmas tree. When the day came to take the tree down, Liam and Ella were both so sad to see the tree leave. Change is never easy, whether it’s a Christmas tree coming down or the loss of the innocence we had before February 26th, 2007.
The only disruption to our oasis of peace was the need to unexpectedly drive to Memorial Sloan-Kettering on Wednesday, 12/31, to pick up GMCSF (the medicine that stimulates white blood cell production which makes antibodies more effective). Liam’s HAMA negative status allowed him to move forward to receive more antibodies, a very good thing. The Wednesday before antibodies, he begins daily injections to makes lots of white blood cells, the “fighter guys” as he calls them. We spent New Year’s Eve and the weekend following ensconced in our cocoon sledding, climbing on snow piles, pretending we were at a winter resort, and trying to stay in the moment. I suppose it was somewhat apropos for cancer to invade our oasis on the last day of the year. Liam took the news about needing shots fairly well. The first three nights we dealt with the normal bout of tears and the feeling of torturing your child. But the fourth night he surprised us. While Larry and Ella were out picking up a pizza, Liam’s latest passion, he let me give him an injection alone. We discussed where I was going to give it to him, how I was going to insert the needle, how I was going to push in the medicine (s-l-o-w-l-y) and how I was going to remove the needle. And then, he stood in the center of the playroom without flinching or crying and received his injection with no complaints.

After two glorious weeks of just being, it was time to return to New York. I’d be lying if I said I escaped the thought of cancer. I never can. It’s always there. It’s the monkey that rides on my back wherever I am and whatever I’m doing. The monkey was heavier knowing that friends of ours were dealing with tough news. I kept thinking of them and looking at sales of cookies and feeling like I failed because we didn’t sell as many cookies as we hoped. I kept feeling the need to live for every moment, something we all should do anyway, but with an added sense of urgency. I have not lost faith or changed my belief that Liam will be here for a very long time. He’s a lucky kid. We taught him how to flip a coin over the holiday break and over and over and over again he correctly called if the coin was a head or tail. He didn’t miss. But I know just how tough and relentless our cancer is and that it doesn’t like to give up easily which makes me more focused than ever to not only dedicate myself to raising money for pediatric cancer research but also balancing it with loving and living.

The round of antibodies at the “regular” dosage went well. He despised the finger prick on Monday, but knew there was no way around it. He didn’t like the temporary line which is now a necessity since he is “port free,” but he dealt with the experience. I had to grab him and bring him to the chair in the IV room where it took two of us to restrain him while he kicked and screamed at the top of his lungs. A third nurse skillfully pierced a vein to insert the line over screams, kicks, and attempts to pull his arm away. The good news is he is really strong, a great sign after being pummeled with high doses of chemo. The bad news is it takes more to restrain him which makes you feel awful. Once it was in, he was OK. I felt like I was violating him and let’s face it, I was. I hate having to grab him. Hate it. It’s the one time that I always feel the tears welling up and a wave of anger bubbles up to the surface. But then it’s over and he’s OK. I’m always amazed he doesn’t completely reject me for putting him through the experience, but whether it’s restraining him to put in an IV or giving him an injection, I’m the one he wants to have hold and comfort him afterwards.

He went to school every day during the week except Tuesday. It takes a while to recover from the first day of antibodies. The schedule each day went something like this: wake Liam up early to ask him if he wants to go to school; take him and his hospital paraphenalia to school; work while sitting on a bench outside his classroom; collect him and his hospital stuff including stroller and catch a cab to the hospital; ask him if he wants pizza from the pizza place next to the hospital; maneuver him, the stroller, his hospital bag and my portable office to the pizza place; get him in the stroller (he’s usually exhausted after school) up two steps and into the pizza parlor; order two slices with extra, extra cheese; balance the box of pizza on the top of the stroller cover and walk to the hospital while pushing the stroller; go to the 9th floor and check in; get to our treatment room and encourage Liam to eat his pizza as quickly as possible so that it will stay in him and he won’t throw it up after the antibody infusion; collect a vial of blood for a CBC from the temporary line and hope and pray it works and stays in place; start the premedication process which includes anti-nausea medicine and pain killers; give him an injection of GMCSF; wait an hour to start the infusion; go through the typical and troubling antibody infusion which includes screams of pain; wait for him to pass out which he does while draping himself on me and instructing me not to move; and then waiting for him to recover to the point he feels he can be moved to go home, the point that if he’s going to throw up, he usually does. As a human being and parent, your natural instinct is to try to make a child suffering more comfortable by doing anything you can to alleviate pain. I would want to rub him, caress him or do something that I thought would bring relief. As he was dealing with his pain, he would quietly tell me, “Mommy – Just be. Just be.” And I would just be…be whatever he needed me to be to help him bridge the canyon between being blinded from pain and being able to cope. His words have become my mantra as I try so hard to just be. Early in the week I saw a mom I have met a few times and who I adore talking excitedly with several of the nurse practitioners. I assumed she was in the clinic for 90-day scans. On Friday, I saw her again which didn’t make sense to me since she would only be there for two or maybe three days dealing with scans. And then she broke the news. She told me that on the day of her son’s five year anniversary of diagnosis, she found out he had relapsed. Dr. LaQuaglia did an exploratory surgery on Monday and discovered a mass in her son’s original tumor location. Her news made my head spin. I felt like I was floating above my body listening to a conversation between two people that was almost implausible. Are you kidding? Almost five years to the date of his diagnosis? Are you kidding? He was gearing up for the start of chemo which this time would be challenging because he lost a kidney during his first go around with neuroblastoma. He only had one kidney to help filter the toxic chemotherapy agents from his blood. And the thing that has happened so, so many times happened again. I felt like I was running through a haunted house with scary monsters on the other side of every door trying to find the one door that would lead me out.

That weekend we booked a trip to Disney World for the following week.

We went to Disney World on Thursday, January 22nd under the auspices of celebrating Ella’s 3rd birthday. Liam played the role of mayor. Ella was Liam’s loyal side kick. He introduced himself to the pilot. He thanked the pilot for a safe flight and told the flight attendants he’d see them soon. Ella and Liam had breakfast with the Disney princesses. While meeting Cinderella, Liam invited her to join him for breakfast. When she told him she was busy greeting other knights and princesses, he invited her back to his pretty hotel room to play. Ella was completely enthralled with the princesses and other characters. Liam rode the Thunder Mountain roller coaster 12 times. Yes, 12 times. Ella was too terrified to ride it but after Liam’s 9th trip, Ella worked up the courage to go on the scary roller coaster. She did great safely nestled next to Daddy but also chose not to ride the Coaster again. Once was enough for our very sensitive little princess. They were randomly selected to be junior casting directors in the Indiana Jones show. In front of an audience of more than 1,000 people, they stood on stage and said, “Lights, Camera, Action!” They did a fantastic job! We thought for sure Ella would be too shy to stand up in front of a large crowd, but with Liam at her side she did it (http://www.youtube.com/watch?v=Maa3AJ4RnbQ). Of course less than three minutes into the show, we needed to leave the theater because Ella was terrified of the fire on sate. We rode rides; watched parades; marveled at elephants, zebras and giraffes within a few hundred feet of our hotel balcony; and enjoyed being pampered by the Disney staff and warm weather. Liam and Ella had so much fun. Small World was a big hit as well as the Buzz Lightyear rides. But Liam’s favorite by far was riding the super fast, gut wrenching, dizzying Thunder Mountain roller coaster. He would laugh nonstop, hold his arms up in the air, and embrace the experience…the same way he has approached life. He would make his presence known wherever we went whether on our early morning safari with George the guide (“Oh George! I have another question for you! George! Come eat breakfast with us at our table!” And George, unable to resist the charms of Liam, did) or with the hotel staff (“Mommy – I need to go see my friend Jack and see how he’s doing today.”)

The evening we returned from Disney, we received the news that Liam’s blood which was drawn on the day we left for Disney (nothing like a quick trip to the hospital before we could escape town) was HAMA negative and we could proceed to another round of antibodies. The injections started on Wednesday. We’re gearing up for round two which begins 2/2 and worrying about two more friends who recently received difficult news. It makes my heart physically ache.

So how are we? We’re good. Living in the moment and trying to do what we can to make a difference and doing our best to accommodate the monkey living on our backs. It hasn’t gotten any easier in nearly two years of him living there and we’ve learned the more you fight him, the harder the burden is to carry. Just be. Just be.

http://www.cookiemag.com/homefront/2008/12/gretchen-holt