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.

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."

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.

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.

"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