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Sunday, May 3, 2009

Jet Packs and Grass Stains

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

4/09 - Glorious Hair

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

Jet Packs and Grass Stains

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

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

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

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

What’s next?

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

Liam and Ella Stories:

I love you

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

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

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

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


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

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

Who Let the Dogs Out?

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

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

State of the Union - 24 months and more than 200 injections later.

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

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