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Monday, January 14, 2008

Early Morning January 8th


Where do I begin? It’s a New Year. I love the opening week of a New Year. There’s so much promise and hope and, well, newness. And while 2007 certainly was a year that proved challenging, it’s one that gave us a refresher course about many important life lessons. Would we prefer that cancer hadn’t entered our lives? Absolutely. Do we wish we were playing the role of Ebenezer Scrooge and finding ourselves just waking up from a horrible night of life-altering dreams? In a heartbeat. But we’re not and Liam has a stomach-churning week of scans commencing in just a few hours that will take him through this week. And next week, after a two month break, he is scheduled to receive his sixth round of antibody treatment. I broke the news to him that he needed to have some “pictures” taken and give some blood this week. Since the early days, we’ve referred to a CT and MIBG scans as pictures since…after all…that’s what a scan is, a picture, and having his picture taken is a concept he can understand. What’s amazing is how excited he was when he heard he had to have his picture taken. Since the day I mentioned it, he talked about it nonstop. He wanted to know exactly what day he’d be having his picture taken, how far away it was, and then wanted an explanation about how it’s possible to take a picture of your inside body. Ah, right…fire up the explanation about how it’s possible to take pictures on the inside. When I reminded him they take a picture of his whole body, not just his face, he wanted to know why there had to be a hole in his body…which led to a conversation about the difference in the meaning of hole and whole. With Liam, you constantly are on your toes…there always is a question to an explanation and an opportunity to learn. “Why” continues to be one of his favorite words but I feel like there’s a new edge to it. Sometimes I feel like he’s asking me a “why” question over and over to make sure I don’t change my explanation. It’s almost as if he’s a little wiser and more wary…which makes me sad. “Why does Dr. Kushner want to see my insides?”

Prince Liam is growing and maturing so quickly. I think the lack of socialization during the intense phase of treatment made him miss out on socialization with his peers, but he’s making up for lost time. He does, though, sometimes skeptically look at a group of children like he’s deciding how to jump in and play. And the lack of communication with other children during his intense treatment appeared to have an impact on his language skills, but he’s learning more words every day. He’s finally out of diapers and wearing “big boy underwear” which he loves. He now picks out his own clothing every morning and insists on getting dressed by himself and had his first haircut post-chemo. The haircut was tough for me. As much as I tried to treat it as just a “regular” haircut, I had to push away the impulse to drop to my hands and knees and pick up every strand of beautiful hair being cut from his head. True to Liam spirit, the prince was fascinated with everything that had a button or knob in the “hair cut store,” and insisted on drying his hair under the big hair dryer that comes down over your head. He also insisted on helping the person cutting his hair by holding her hand to help guide her. It was so nice to see him helping someone do something so routine as cutting hair instead of hooking up chemo or flushing a line with heparin.

The cookie project was incredibly rewarding and completely draining for all of us…me, Larry, Liam and Ella. It was a project that, quite frankly, never should have happened in the timeframe it was planned which was less than two months. It only happened because so many people shared the vision and the possibilities and decided to step up and get involved. The details that needed to be coordinated were dizzying and things that, for the most part, were completely new to us like navigating UPS software. Some of the random acts of kindness included people showing up with a stack of money collected at their work to go towards our cause; the owner of a crane company who heard we needed to rent a freezer truck for two weeks and sent a check on the spot to cover the cost; Sally Sampson who was always, always there with everything from incredible recipes to stalwart support; Jacqueline’s Bakery which spent weeks adapting Sally’s recipes from home use to 500 lb batches and then sold us the dough for literally nothing; Carl Tremblay, an incredible food photographer who donated his time and services to take mouth-watering photos of Sally’s delicious cookies; John at Big Apple Warehouse who housed our freezer truck and took care of fueling it every few days without being asked…just did it; Real Stores which built our website and spent until 4 a.m. one night getting it ready by our deadline; an office supply company that wants to remain anonymous that donated gift boxes and shipping boxes; Atlas Packaging which donated customized shipping boxes; the truck rental company that gave us a truck at no cost to transport 8 pallets of shipping supplies from a warehouse in Pennsylvania to Brooklyn; friends of my mother who made the trek with her to Brooklyn and then helped transfer those 8 pallets of supplies from one truck to another; and so many other people who came forward to do whatever they could to help us succeed.

We tried to play out every scenario we could think of but one scenario we never considered was ovens breaking. The project was exhausting both physically and mentally with 15+ hour days for 18 consecutive days. And some of the things we found ourselves doing were both comical and somewhat absurd…but Colleen, a new friend with no connection to the cancer world other than being a caring, compassionate person, jumped in full-force to make the fundraiser happen. Without her help, Cookies for Kids’ Cancer wouldn’t have happened. Many times we would just look at each other and shake our heads at some of the things we found ourselves doing. Who knew driving a commercial van through snowy Brooklyn streets en route to the spooky Brooklyn Naval Yards at 10:30 p.m., on a weekend night, to collect 25 28-lb cases of frozen cookie dough from the freezer truck that was 0 degrees and so cold it would make your lungs hurt just to breath in would be an experience added to all the other bizarre ones of 2007? There were so many details to keep track of on so many different levels from how many 40-pound boxes of paper shred were in inventory (inventory was stored a 17-foot rental truck sitting in a parking lot a few blocks away from the kitchen) to the special orders and requests coming in from all over the country, and perfecting the proper amount of packing material to protect the cookies from breaking. And, at times, it was stressful. (What do you mean the ovens are broken? How can that be? And how am I going to find another commercial kitchen to rent in the next few hours during the busiest baking season of the year?) We also were in a facility that had no heat except for two, small antiquated space heaters that threw off heat about three inches from the unit. At one point, I couldn’t believe our volunteers didn’t abandon us when the room they were in was so cold you could see your breath. Everyone that night looked like they were smoking up a storm. Most nights my body was so cold that when I finally got home, I slept in my jacket because I just couldn’t get warm. But somehow none of the stress of the situation really mattered because all I could see in my mind’s eye as we kept dealing with what seemed like issue after issue were the faces of the princes and princesses like Liam who are battling neuroblastoma, especially those who have already developed resistance to the current version of antibody and are in even more urgent need of the new version. Any of the stresses of the curve balls thrown at us during the odyssey paled in comparison to the responsibility I felt to make the cookie concept succeed. It had to succeed…too much was at stake. What I found so amazing during the process was the incredible camaraderie formed by the more then 350 volunteers to get the job done. Seeing people come back day after day to volunteer their time to our cause was inspiring. I don’t think one volunteer left without thanking us for the opportunity. And the people who passed through our little “project that could” included a wide range of people from professional chefs and photographers to professional firemen. Yes, Liam’s firemen were there in full force for several nights of baking, bagging and packaging. Liam’s firemen might be fire fighters by profession, but their hidden talent lies in the kitchen….they were wonderful and seeing the bonds they formed with friends from my BC (before cancer) life coming together for one cause was humbling. And then there were the people who had no connection to the cancer world but who heard about our effort and wanted to help like the finance person with the cool aprons who took several days of vacation to make sure we succeeded. Faith, a cooking school instructor, who volunteered five consecutive days to manage the finicky ovens with precision and accuracy that would have impressed any drill sergeant. Tina and the entire staff and student body at the French Culinary Institute which not only allowed us to have an emergency 6-hour Sunday baking session at their pristine facility but also answered question after question after question about all things relating to cookies. The staff and students at the Institute of Culinary Education who did supplemental baking for us when we initially realized a kitchen we thought had four working ovens only had two. Nicole Kaplan who rallied dozens of pastry chefs to donate baked goods for our auction. The staff of Gourmet Magazine…I think someone from Gourmet volunteered almost every day and on many days it was a team from the magazine to offer food and moral support. During one shift we had three people from The NY Times volunteering who had no connection to each other but had some connection to the cookie event. The list goes on and on and on...and on. It was just so amazing to see so many people who cared enough about what we were doing to want to get involved in, at times, less than ideal working conditions. And then there was the day the ovens broke. What a day. It was the seventh day of baking and the eighth day I hadn’t seen my family for more than 20 minutes. But the old adage about life giving you lemons came into play that day when amidst my tears of frustration, exhaustion, disappointment and stress a dear, dear friend remembered a gorgeous, new commercial kitchen in Manhattan she had recently seen that was going to be opening soon. After a few phone calls, we were set to visit the kitchen but I didn’t hold out much hope it truly would be available. It would just be too good to be true. But the amazing well-equipped, clean and new commercial kitchen at The Astor Center was available and the staff warmly welcomed us to use their stunning location to complete our project…at no cost. I have never been so happy to feel heat, see new ovens and clean bathrooms. The words, Taj Mahal of kitchens, kept running through my head during our time at the kitchen. And then there was the night we wound up baking until 4 a.m. in order to be finished by our deadline. Oh, and the last day of baking when we realized we were a few hundred dozen short of chocolate chip cookies and needed to recreate the recipe for home use to commercial use in order to fulfill orders. A food writer for the NY Times Magazine and a dear friend who is a recipe developer and cooking class instructor spent hour after hour calculating, adjusting, testing, recalculating, adjusting, and testing batches of cookie dough until they had it right. Jill and Marge had not met before but certainly got to know each other well as they passionately worked to develop the large batches of dough. They looked and sounded like mad scientists on a mission. How in the world do you ever thank someone enough for being so dedicated to ensuring our success and giving up the majority of a weekend to our cause? And, halfway through the massive bake-a-thon, there was the back-to-reality trip to Memorial Sloan-Kettering’s Urgent Care Center to address a 102 fever which required accessing our pumpkin’s medical port which is always difficult emotionally to deal with…it’s when he’s accessed that we are jolted into the reality of how serious the situation is. After a dose of high-powered antibiotics and blood samples to test for infection which is a constant threat with a medical port, we were home. In the end, Operation Cookie Fundraiser was a tremendous success but also a tremendous commitment of precious time and energy. I don’t think I realized just how precarious the balance of my life is until the project was underway. When I was a working mother with two children, that balance was fairly delicate. I always felt the challenge of giving the proper amount of energy to each of my “constituents”…children, husband, co-workers and friends. But when I became a mother of a child with cancer, that balance tipped and it has been a constant challenge to keep the scale in balance. It all stays together, somehow, but barely. The cookie project completely tipped the scale and the people who suffered, I’m afraid, were my family and friends. Christmas presents weren’t purchased until literally the last possible minute. Some presents were even purchased by Colleen while she shopped for her own children. Holiday cards to the hundreds of people who have kept us going throughout this past year weren’t sent which is something I still feel terrible about. (Look for a Valentine’s Day card!) The tree wasn’t decorated until December 22nd. Holiday meals weren’t planned ahead of time. And cookies for my family certainly weren’t baked! The week of Christmas was spent recovering and responding to questions from cookie purchasers or recipients. I learned two very practical but extremely important lessons during the cookie project: Always sign your last name on a gift card…unless it’s going to a very close friend…you wouldn’t believe how many people didn’t recognize the name of the gift giver. And always make sure you’re sending to the correct address which includes putting an apartment or suite number…there were many returned packages because someone had moved or the address didn’t have an apartment number and couldn’t be delivered.

Onto Christmas…This year Liam “got” the whole Santa thing. He couldn’t wait for Santa to arrive. He didn’t have a specific item he wanted…he just wanted Santa to bring him “lots of presents.” The night before Christmas, he left some of his precious “yellow cookies” (aka Sally’s citrus shortbread) out, a glass of milk, and spent time drawing a map for Santa of how to get from our house to his house. He was very specific with what he wanted his map to have on it which was precious to watch. Christmas morning truly was magical watching Liam and Ella open presents. But what kept flashing through my head were the names of the children who were lost to cancer this past year who we either knew or knew of since Liam was diagnosed. I kept thinking about the pain those families must be feeling on Christmas morning. The wish that our cookie fundraiser made millions or that more research funding would be directed towards pediatric cancer, especially those cancers with the worst odds that need the most help, was another kept popping into my head as I watched Liam. I tried to stay focused in the moment, but it was difficult. The other flash that kept going into my head was the number of days until our 90-day scans. It’s so hard knowing what I know and trying to keep the façade up for Liam. Yes, I’m happy and so, so appreciative of every second, minute, hour and day with him…but sometimes those thoughts that distract me from the present creep in. Liam, though, enjoyed wearing his new firefighter jacket and helmet while working on his Bob the Builder workbench. His best present was a new fire truck that he loves driving around the parking area. I am convinced Liam is the best 3-year old driver…he amazes me at how well he can steer and do complicated driving moves like park his truck in a very tight space. And Ella was beside herself with joy when she received four baby dolls for Christmas and a collection of Beanie Babies. She loves her babies…and now insists on sleeping with them at night.

We also finally found out the address of Liam’s London pen pal. The postcards we receive from someone who learned about our plight and decided to start writing to us have been a tremendous support. We love the postcards and have saved every one. The strength and comfort they offer knowing that someone is thinking about you is incalculable. We now have a picture of Liam’s pen pal prominently displayed in our kitchen and Liam wants to know when they can get together to play.

Liam’s new favorite phrases are, “I Love you, and you Love me!”, “Are you happy?”, “I always do it that way,” and “That’s a great idea!” The “I always do it that way” is my favorite…he talks as if he has been doing things a specific way for decades. Then again the life he has lived the past year probably makes him feel like he has been living for decades and not 43 months. The “I always do it that way” phrase is used with everything from eating to the way he takes pills. He loves it. He also sings…a lot….and usually while he’s playing or just going about doing his thing. His two favorite songs continue to be “Mr. Sun, Sun, Mr. Golden Sun, Please shine down on me” and “Twinkle, Twinkle, Little Star.” Curious George is still tops with Caillou a close second. At one point while we were home over the holidays, I pulled out the Curious George DVD a supporter of Liam’s sent. I wish I had an instant way of communicating with the people who have been so supportive to let them know how often their thoughtful gift is used or appreciated. Those thank you notes will get written this year…they have to…it’s another one of those things that keeps me up at night.

Our wish for everyone is for a very happy and healthy New Year. Our wish for Liam is that 2007 was the tough year and that every year from here on out is one that sees him growing, learning, discovering and laughing.

Thank you, everyone, who has been a part of the journey so far. Your support means more to us than words can explain.

Gretchen, Larry, Liam and Ella