On Monday, March 24th I took Liam to the hospital for a blood test. After you’ve spent a little time away from the hospital, it’s hard diving back into the belly of the beast. It feels familiarly uncomfortable and yet oddly friendly. Liam seems calm on the outside but I can tell he’s uncomfortable. “Mommy – Can I go to the playroom first before we go to the IV room?” “Mommy – What’s going to happen?” He has an arsenal of delay tactics to avoid going to the IV room. (Who could blame him?) He knows that a trip to the IV room either means a finger prick, blood draw, or accessing his mediport. None of the choices are pleasant ones. He also now understands and embraces the concept of “bad guys.” He immediately thinks he can identify a bad guy and even though he doesn’t really know what “bad guys” do, he knows they exist. The day’s blood test was to see if he had developed an antibody to the mouse antibody or HAMA. Liam has received seven rounds of 3F8 antibodies. Early on in the antibody process we were told that the goal was to receive a minimum of four rounds with each round consisting of five days. We reached that goal back in September. After the fourth round we thought we were in the “bonus rounds.” And then we found out that actually the goal is 6 – 10 rounds. I’ve heard that it doesn’t make a difference if it’s 6, 10 or any number between. Rounds 1 – 4 went by in a slow-motion blur with a feeling of relief when we completed the 4th round without a HAMA. Round five went by without a hitch. Round six was also “routine” and with it a new “whew” of “we made it to six.” And then round seven. Round seven was nothing like any other round. It was the difficult one…the one with Liam in nonstop, agonizing pain that lasted from one day of treatment to the next. Typically pain is good because it shows that the antibody is working. It’s when the pain stops that you need to worry that a HAMA has developed rendering the antibody ineffective. With so much pain during round seven, I wasn’t necessarily thinking “HAMA” but I also never take a-n-y-t-h-i-n-g for granted. So it was with the proper amount of caution and reverence to the cancer gods that I took Liam to the IV room to draw some of his precious O negative blood. Yes, he could be HAMA positive…but with all the pain how could he be?
The way the test works is that if you DON’T receive a call by 6 p.m. on the day the blood from children all over the U.S. is tested for a HAMA, it means the test came back negative allowing your child to advance to the next round. Like the past six rounds, we didn’t receive a phone call that day. I wasn’t surprised, but I also did what I always have done just to make sure and to not take anything for granted and called the hospital the next morning to confirm the phone didn’t ring. When I heard Dr. Kushner’s assistant say, “Liam’s HAMA positive,” I felt like I was going to spontaneously combust. How could this be? How? What do you mean he’s positive? Wait, seriously…he’s positive? That can’t be possible. It can’t be. No. That’s not good, right? It means he’s finished with 3F8 which surely can’t be a good thing, right? Don’t you want to keep getting it to act as an insurance policy? When I asked, “what’s next?” she said to come back in a month for retesting. And that was that…there were no other phone calls, no “congratulations – after 13 months you’re finished with active treatment!” No other phone calls offering an explanation. Nothing. Just a, “he’s HAMA positive.” The day was March 26th, exactly 13 months to the day Liam was diagnosed. 13 months since we started the odyssey - diagnosis, shock, three rounds of chemo, 11 ½ hours of surgery, two more rounds of chemo, 14 sessions of radiation, six rounds of Accutane, and seven rounds of monoclonal antibodies.
I spent the first two days after the news reeling and crying. The tears were almost nonstop…they were always there just spilling over the brim as I tried to come to grips with the news while still having more questions than answers. There were no sobs…just a constant, steady flow of tears. I was left with a feeling that the road less traveled we accidentally found ourselves traversing for the past 13 months came to an abrupt end and we were back on the right course. But, like so many aspects of this journey there were no signs along the way informing us of the change in conditions ahead. So now we’re in a phase I’m now thinking of as “The Gravy Days.” These are the days where, except for three days of invasive (nail biting, agonizing) tests every three months for the next 15 months, life is as normal as possible. These are the days we need to push, push, push to do everything we can to raise awareness and help fund research into more treatment options while we don’t have the time burden of being in active treatment. These are the days I look at both of my children and savor every moment. Isn’t it amazing how one’s perspective can change? Our Gravy Days are a gift of understanding the true value of good health and the opportunity to enjoy it. For Liam it means going to school and reveling being with his fellow musketeers in Pat’s Class. But I do think he on some level understands the value of good health and feeling well. He seems to be very open with his feelings of enthusiasm and affection and frequently greets a classmate with an unexpected hug, cheery “it’s nice to see you!” or similarly enthusiastic greeting, or by eagerly showing off his outfit of the day which could be any number of interesting combinations since he’s selecting what he wants to wear. He lives and loves openly and without any reservations. Sometimes it pains me when I see a classmate understandably being taken aback by Liam’s burst of affection. I hope Liam doesn’t notice and start curbing his enthusiasm. I wonder if he’s like this because he has received so much unabashed love. I hope he lives every day like a gravy day to be realized to it fullest potential. We have no reason to think that the gravy days are only here for a limited period but we are acutely aware of how quickly they can be taken away.
But then the feeling surfaces of the safety net secured under the tightrope Liam has been walking the past 13 months was just yanked away. This is the safety net that still had us doing something, even if only every eight weeks, to scour his body for any cancer cells lurking in hidden recesses. He has done a beautiful job walking the tightrope. He could have fallen so many times along the way but he never so much as even hinted of losing his balance. As goofy as Liam is, and as I hear him make up pretend songs like a new ditty he calls Macaroni sung to the tune of the Hallelujah chorus, he also is incredibly focused. I think he, like me, was focused on the job at hand and getting through chunks of time which he did beautifully. We are so, so, so fortunate to have reached this point. I recently learned about a little girl with a smile that would melt your heart who was the same age as Liam and diagnosed on the same day, same year. Her battle took a different turn and, as of a few weeks ago, is no longer with us. It’s an awful, awful disease that steals children of their chance to live just when their worlds are beginning to open up, and robs families of happiness as they try to figure out what life is like without their child.
So what’s next? Is this the end of the road? Should we as a community of people who have so passionately come together to see Liam through this ordeal disband and resume our regularly scheduled lives? Wouldn’t that be great if it was over? But it’s not and we still have serious work ahead of us. For Liam it’s a transition period of not having his routine disrupted every 7 ½ weeks for injections and a week of painful treatment. It’s a time we rely on faith that everything thrown at his tiny body battling a gigantic beast worked. For us, it’s a time of adjustment, appreciation and “roll-up-your-sleeves” work. It would be nice to sit back and take a breather, but there are too many lives at stake and too much work to do. First and foremost we need to see Liam through every round of tests until June 2009 to carefully monitor him. A potential threat along the road is the dreaded “R” word: Relapse. More children relapse than don’t and let’s leave the statistic at that. I don’t want to talk about it except to say that we know more children who have relapsed than haven’t. The problem with relapsing is that the cancer cells are smarter the second time around and resistant to chemo.
The next round of tests that check him out head to toe is in early April. (My stomach is already gearing up for the waves of nausea and anxiety.) And what’s next on the agenda for kicking cancer’s proverbial behind? Continuing to build the Band of Parents reach and raise money for research to discover more treatment options. We’re not finished by a long shot and I’m still wearing the same earrings that Liam picked out for me to wear on the day he was diagnosed. I don’t have any plans to take them out...at least not until there are more treatment options available for him and every other child.
We’ll follow up on when his 3-month tests are scheduled and the plans for a fabulous fourth birthday party in mid-May which everyone is invited to help us celebrate. As I’m sure one can understand, the temptation to rent out a circus for the ultimate birthday party is certainly there and who could blame us? We’re trying to settle on a Go Diego Go, Curious George or Caillou theme. Right now Diego is winning but it depends on the day. We’ll definitely be serving gravy along with cake.
Monday, April 7, 2008
Monday, March 24, 2008
March 24th 2008 Update
Note: This entry is one that has taken a while to write. It was started the week 53 since diagnosis. The weeks leading up to the one-year mark were filled with many conflicting emotions. Should one be happy to note the milestone or somber thinking about the innocence lost? And on week 52, I found myself reliving every detail of week one day and night. My dreams were haunted with a constant replay of the week. My days were interrupted with reminders of the one-year mark. The shock. The disbelief. The fear. The horror. The smells. The sounds. The sounds were some of the most frightening. The words my ears heard. The sound of an ambulance siren. Hearing Liam’s cries as he was subjected to the first of many invasive, scary procedures. During that first week it took me a few days before I figured out how important it was for me to get my bearings in order to be a blanket of security for Liam. And it was a nurse named Reece who really shook me out of my daze and confused state. But it was Liam who gave me strength and who continues to give me strength every day. It is Liam who makes me confident and resolute in my conviction. He truly is my hero and I am the luckiest mother in the world to have him and his partner Ella as my children. We’re sorry for the long delay since an update. It has been a month filled with sadness for others, treatment for Liam, travel for work and the attempt to regain our life on this new frontier.
Week 53 - Can one be Ordinary under Circumstances so Extraordinary?
Our days are filled trying to be ordinary and do the things that under, well, ordinary circumstances would just be ordinary. Taking Liam to school and talking about what he might learn that day. Listening to him exclaim as we head out the door, “Today is going to be a great day!” Watching him greet his classmates and easily assimilate into a room of precious 3 and 4 year olds who have their own special language. Overhearing conversations between Liam and Ella about likes and dislikes instead of being two atoms that bump into each other. Joyously hearing Liam make connections between letters and numbers showing he’s moving to the next phase of development. Seeing him hold a crayon the correct way and practicing coloring in a coloring book. Singing “Puff the Magic Dragon” who, in Liam’s version, lives behind the trees and not by the sea. Having Liam ask me what people are talking about when he overhears a conversation as he becomes more aware of the world around him. These are all glimpses of ordinary life but how can one go back to being ordinary after living under such extraordinary circumstances?
We take every moment of health as an amazing gift and savor it slowly and deliberately. In the morning I have to pry myself away from wanting to be a voyeur watching him being an ordinary almost 4-year-old as he goes about the routine of his day in school. I want to triumphantly watch his every move to acknowledge the heroics that went into making such ordinary moments possible. If any one of the hundreds and hundreds of people who have been a part of caring for Liam made any mistake along the way, we wouldn’t be where we are today. It takes a finely tuned medical team of so many people, many of whom we’ll never personally know but see their presence in Liam’s life via initials on scan reports, pharmacy orders double checked, and blood tests reviewed to make something as simple as saying Good Morning to his teachers a reality. I want to watch him every second. I want to drink in with him every experience of living such a gloriously ordinary life. But I don’t. He needs to be his own person because, after all, we need to make sure he’s a well-adjusted member of society so that in 10, 20, 30, 40, 50 years from now he can tackle any challenge in front of him. After all, he will be here since anything less simply isn’t an option.
And then I look around and realize that nothing is ordinary. There are thousands and thousands of Valentine’s Cards from near and far all with the same wishes of good health and love. Vials of medicine and syringes invade closets and cabinets. A thick folder of medical paperwork including information on the clinical trials Liam is a part of that is carried everywhere just in case they need to be referenced in an emergency. The serial number of the medical port buried underneath his skin that is carefully wrapped in a protective piece of plastic in my wallet. The reminders of the children who were in the same battle who were lost last month. Harrison. Eden. Carter. Three bright, vivacious, precious children who should still be here and whose deaths make me profoundly sad, incredibly angry and extremely determined.
Liam and Ella love their Valentine’s Cards. Liam makes us read every one of them and when he asks who sent them, we tell him they’re from friends of mommy and daddy. He has no idea that every child doesn’t receive thousands of cards. And you know what? Every child should. Why not? Why not tell people every chance you have how much they are loved and appreciated? The cards are little treasures that we look at over and over again. And they also bolster our determination and make me say, “see – people really do care about pediatric cancer. They do want to make a difference – they just need to know how.” It’s unfathomable that so many people responded to the call including the parents of a little boy who lost his cancer battle that were mentioned in the ESPN NASCAR story about Liam’s Valentine’s project. Their letter is one I keep in my purse and is read and reread. All of the letters are going into a scrap book for safekeeping to show Liam when he’s older. In fact every letter, card, and e-mail has been saved. One day they will help guide Liam as he makes decisions about what path in life to take. Today he says he wants to be a superhero, doctor and fireman. In our eyes he already is a superhero.
And as life turns to the ordinary, the stresses of the extraordinary life we’ve been living inch away from being ever present, ever top-of-mind. And then just as we’re getting in the groove of a routine, we’re plunged back into that world of bright lights, fears, tears, trepidation, the smell of alcohol and other sights, sounds and emotions associated with the hospital. After six rounds of antibodies, I thought I had the routine down. I was lulled into thinking I knew what to expect and when. But this was a round different than any other. It started with having a very frank conversation with Liam about whether he wanted to receive the painful morning injections that begin five days before treatment and continue for the five days of treatment via a small catheter that is inserted in his arm or as a shot. He chose a shot. He hates the catheter with a passion and fights it with every ounce of his little body, something that becomes more difficult as he becomes stronger. Accessing the catheter is similar to having to thread the eye of a small sewing needle as you line up the tip of the injection and insert it into the equally small opening of the catheter. It’s a wretched experience with Larry tightly restraining Liam as I clean the catheter with alcohol and then carefully insert the needle into the catheter opening to inject the medication. Liam screams and thrashes the entire time and then insists on being held by the person who administered the injection to be consoled. He never rejects me even though I’m the one who is inflicting the pain. But if he wanted to forgo the insuflon, it meant I needed to learn how to give an injection. I learned by practicing on nurse Connie’s arm. She showed me what to do, but she didn’t really need to show me. It’s something I’ve watched countless times over the past year. When it came time to inject Connie, I was sweating and queasy with anticipation. Me? Give someone an injection? I told her I couldn’t. She asked me if I wanted to practice on her or have Liam be my first injection. I opted to practice on her. And when it came time to give Liam the injection, it was much more difficult and easier than I anticipated. I hated piercing his unblemished, delicate skin that is so warm and soft. I hated being the one inflicting the pain. I wrestled with wanting to push the medicine in as quickly as possible and trying to do it slowly so that it wouldn’t burn. As soon as it was done, he wanted me to wrap his soft yellow blankie around him and buried himself into my neck while he wrestled with what I’m sure were feelings of personal invasion. And for the next nine days, I repeated the dreaded task of giving him a painful injection.
The seventh week of antibodies was tough. Liam has never needed all of the narcotics available per session. He has never had residual pain that prevented him from sleeping at night. This week he did but it took until Wednesday to figure out the right amount of pain medication to keep him comfortable. From Monday until Wednesday, he was in agony wanting to be held, carried to the bathroom to throw up, held, carried from one place to another he thought he would have more comfort. And after rejecting yucky liquid pain medication, he was finally convinced to take pain medication via pill form. It wasn’t until I explained to him that the pill was the same as “Vitamin B”, the pill he was familiar with taking to ward off a particularly nasty pneumonia people with compromised immune systems are susceptible, that he started taking two narcotics and a third “feel good” medicine at night for relief. The good news is that the pain means the antibody is still effective. The bad news is you have to watch your child suffer. Of course as a vigilant parent searching for explanations, I wanted to understand the meaning behind the extreme pain. After all, after six rounds of antibodies I considered myself familiar with the process. But why was this one so extremely different? What did it mean? Was it good? Was it bad? But there was no explanation other than it just is what it is. And again during this tough week, we were reminded about the importance of friends and family support. Meals that were brought were inhaled in the three minutes we had available between cries of pain, and special packages like the one from a family in Canada sent to our Petit Prince served an incredible boost of support. Their letter is also one that is carried in my purse along with postcards from our London friends. The week is over, Liam is back at school, and we are trying to live “normal” life. But the calendar shows we have three weeks left until the next round of scans where his body is scoured for cancer. As far as we have come, we still take life one day at a time and try to live each day as gloriously ordinary as possible.
Week 53 - Can one be Ordinary under Circumstances so Extraordinary?
Our days are filled trying to be ordinary and do the things that under, well, ordinary circumstances would just be ordinary. Taking Liam to school and talking about what he might learn that day. Listening to him exclaim as we head out the door, “Today is going to be a great day!” Watching him greet his classmates and easily assimilate into a room of precious 3 and 4 year olds who have their own special language. Overhearing conversations between Liam and Ella about likes and dislikes instead of being two atoms that bump into each other. Joyously hearing Liam make connections between letters and numbers showing he’s moving to the next phase of development. Seeing him hold a crayon the correct way and practicing coloring in a coloring book. Singing “Puff the Magic Dragon” who, in Liam’s version, lives behind the trees and not by the sea. Having Liam ask me what people are talking about when he overhears a conversation as he becomes more aware of the world around him. These are all glimpses of ordinary life but how can one go back to being ordinary after living under such extraordinary circumstances?
We take every moment of health as an amazing gift and savor it slowly and deliberately. In the morning I have to pry myself away from wanting to be a voyeur watching him being an ordinary almost 4-year-old as he goes about the routine of his day in school. I want to triumphantly watch his every move to acknowledge the heroics that went into making such ordinary moments possible. If any one of the hundreds and hundreds of people who have been a part of caring for Liam made any mistake along the way, we wouldn’t be where we are today. It takes a finely tuned medical team of so many people, many of whom we’ll never personally know but see their presence in Liam’s life via initials on scan reports, pharmacy orders double checked, and blood tests reviewed to make something as simple as saying Good Morning to his teachers a reality. I want to watch him every second. I want to drink in with him every experience of living such a gloriously ordinary life. But I don’t. He needs to be his own person because, after all, we need to make sure he’s a well-adjusted member of society so that in 10, 20, 30, 40, 50 years from now he can tackle any challenge in front of him. After all, he will be here since anything less simply isn’t an option.
And then I look around and realize that nothing is ordinary. There are thousands and thousands of Valentine’s Cards from near and far all with the same wishes of good health and love. Vials of medicine and syringes invade closets and cabinets. A thick folder of medical paperwork including information on the clinical trials Liam is a part of that is carried everywhere just in case they need to be referenced in an emergency. The serial number of the medical port buried underneath his skin that is carefully wrapped in a protective piece of plastic in my wallet. The reminders of the children who were in the same battle who were lost last month. Harrison. Eden. Carter. Three bright, vivacious, precious children who should still be here and whose deaths make me profoundly sad, incredibly angry and extremely determined.
Liam and Ella love their Valentine’s Cards. Liam makes us read every one of them and when he asks who sent them, we tell him they’re from friends of mommy and daddy. He has no idea that every child doesn’t receive thousands of cards. And you know what? Every child should. Why not? Why not tell people every chance you have how much they are loved and appreciated? The cards are little treasures that we look at over and over again. And they also bolster our determination and make me say, “see – people really do care about pediatric cancer. They do want to make a difference – they just need to know how.” It’s unfathomable that so many people responded to the call including the parents of a little boy who lost his cancer battle that were mentioned in the ESPN NASCAR story about Liam’s Valentine’s project. Their letter is one I keep in my purse and is read and reread. All of the letters are going into a scrap book for safekeeping to show Liam when he’s older. In fact every letter, card, and e-mail has been saved. One day they will help guide Liam as he makes decisions about what path in life to take. Today he says he wants to be a superhero, doctor and fireman. In our eyes he already is a superhero.
And as life turns to the ordinary, the stresses of the extraordinary life we’ve been living inch away from being ever present, ever top-of-mind. And then just as we’re getting in the groove of a routine, we’re plunged back into that world of bright lights, fears, tears, trepidation, the smell of alcohol and other sights, sounds and emotions associated with the hospital. After six rounds of antibodies, I thought I had the routine down. I was lulled into thinking I knew what to expect and when. But this was a round different than any other. It started with having a very frank conversation with Liam about whether he wanted to receive the painful morning injections that begin five days before treatment and continue for the five days of treatment via a small catheter that is inserted in his arm or as a shot. He chose a shot. He hates the catheter with a passion and fights it with every ounce of his little body, something that becomes more difficult as he becomes stronger. Accessing the catheter is similar to having to thread the eye of a small sewing needle as you line up the tip of the injection and insert it into the equally small opening of the catheter. It’s a wretched experience with Larry tightly restraining Liam as I clean the catheter with alcohol and then carefully insert the needle into the catheter opening to inject the medication. Liam screams and thrashes the entire time and then insists on being held by the person who administered the injection to be consoled. He never rejects me even though I’m the one who is inflicting the pain. But if he wanted to forgo the insuflon, it meant I needed to learn how to give an injection. I learned by practicing on nurse Connie’s arm. She showed me what to do, but she didn’t really need to show me. It’s something I’ve watched countless times over the past year. When it came time to inject Connie, I was sweating and queasy with anticipation. Me? Give someone an injection? I told her I couldn’t. She asked me if I wanted to practice on her or have Liam be my first injection. I opted to practice on her. And when it came time to give Liam the injection, it was much more difficult and easier than I anticipated. I hated piercing his unblemished, delicate skin that is so warm and soft. I hated being the one inflicting the pain. I wrestled with wanting to push the medicine in as quickly as possible and trying to do it slowly so that it wouldn’t burn. As soon as it was done, he wanted me to wrap his soft yellow blankie around him and buried himself into my neck while he wrestled with what I’m sure were feelings of personal invasion. And for the next nine days, I repeated the dreaded task of giving him a painful injection.
The seventh week of antibodies was tough. Liam has never needed all of the narcotics available per session. He has never had residual pain that prevented him from sleeping at night. This week he did but it took until Wednesday to figure out the right amount of pain medication to keep him comfortable. From Monday until Wednesday, he was in agony wanting to be held, carried to the bathroom to throw up, held, carried from one place to another he thought he would have more comfort. And after rejecting yucky liquid pain medication, he was finally convinced to take pain medication via pill form. It wasn’t until I explained to him that the pill was the same as “Vitamin B”, the pill he was familiar with taking to ward off a particularly nasty pneumonia people with compromised immune systems are susceptible, that he started taking two narcotics and a third “feel good” medicine at night for relief. The good news is that the pain means the antibody is still effective. The bad news is you have to watch your child suffer. Of course as a vigilant parent searching for explanations, I wanted to understand the meaning behind the extreme pain. After all, after six rounds of antibodies I considered myself familiar with the process. But why was this one so extremely different? What did it mean? Was it good? Was it bad? But there was no explanation other than it just is what it is. And again during this tough week, we were reminded about the importance of friends and family support. Meals that were brought were inhaled in the three minutes we had available between cries of pain, and special packages like the one from a family in Canada sent to our Petit Prince served an incredible boost of support. Their letter is also one that is carried in my purse along with postcards from our London friends. The week is over, Liam is back at school, and we are trying to live “normal” life. But the calendar shows we have three weeks left until the next round of scans where his body is scoured for cancer. As far as we have come, we still take life one day at a time and try to live each day as gloriously ordinary as possible.
Thursday, February 14, 2008
Happy Valentines and Thank You
Roses are Red
Violets are Blue
Thank you for your support
It means the world to us two.
Happy Valentine’s Day!
Love and Kisses,
Prince Liam and Princess Ella
As we approach the one year mark since the day our lives turned upside down, we wanted to send you a special Valentine’s greeting to thank you for your support. While we know you’re familiar with Liam, you might not know as much about his sister Ella. Ella’s sun rises and sets on her big brother. It’s Ella who greets Liam with a huge, “’Wee-Um’ is Home!” when we walk in the door from the hospital. It’s Ella who rubs Liam’s feet when he’s dealing with residual pain. And it’s Ella who is always asking, “Are you OK ‘Wee-um’? Are you OK?”
If it takes a village to raise a child, it takes the world to get involved to fight pediatric cancer. Thank you for everything you have done on our behalf and for all families battling pediatric cancer. Together we truly can and are making a difference.
Happy Valentine’s Day,
Gretchen, Larry, Prince Liam and Princess Ella
Monday, February 11, 2008
Valentines Effort Makes News in Tampa
http://www.tampabays10.com/news/national/article.aspx?storyid=73619
The link above is to a story about the University of South Florida's Ice Bulls (Hockey Team) and how they along with family and friends have created over 2,000 Valentines for Liam. The Ice Bulls have supported various pediatric cancer initiatives over the last few years and we want to personal thank them for their efforts on behalf of our son. What a wonderful team of caring young men. Thank You!
The link above is to a story about the University of South Florida's Ice Bulls (Hockey Team) and how they along with family and friends have created over 2,000 Valentines for Liam. The Ice Bulls have supported various pediatric cancer initiatives over the last few years and we want to personal thank them for their efforts on behalf of our son. What a wonderful team of caring young men. Thank You!
Thursday, February 7, 2008
Valentines and Nascar
Our dear friend Julie Yenichek, who dreamed up Valentines for Liam (post below), is also responsible for Liam appearing on ESPN.com on the NASCAR page! Marty Smith, a writer for ESPN and good friend of Julies, heard about Liam's story and has written a beautiful piece that I am sure all of you will enjoy. We were touched by the way he captured our world.
http://sports.espn.go.com/rpm/columns/story?seriesId=2&columnist=smith_marty&page=DoorToDoor080206
http://sports.espn.go.com/rpm/columns/story?seriesId=2&columnist=smith_marty&page=DoorToDoor080206
Wednesday, February 6, 2008
Valentines for Liam
Dear Gretchen, Larry, Liam and Ella,
You have truly been an inspiration to people worldwide. In not even a year's time, you have moved mountains - you have helped launch a new non-profit that has already raised over $1.5 million, baked 96,000 cookies, educated us and the list goes on and on. We know that you will not stop until there is a cure! And we want you to know that we will not stop either!
In honor of you, we would like to recognize your huge hearts and have launched a campaign called: Valentine's for HOPE - Fight Cancer - Set a Record. This Valentine's Day - we are going to set a record by sending Liam valentines and help raise additional funds.
We are asking that people make valentines and mail them to:
Valentines for Liam
PO Box 2701
Cornelius, NC 28031.
We are also encouraging people to make donations to http://www.bandofparents.org/.
There are so many lives that you have touched including church groups, classrooms, playgroups, families, etc. who will be sending cards to Liam.
The link below shows some of Liam's buddies including our kids (although he has not met them before but they all talk and pray for him every day!)
http://www.youtube.com/watch?v=4lpo3zxHVEQ
Love always,
Julie, Tony, Jack and Katie Yenichek
You have truly been an inspiration to people worldwide. In not even a year's time, you have moved mountains - you have helped launch a new non-profit that has already raised over $1.5 million, baked 96,000 cookies, educated us and the list goes on and on. We know that you will not stop until there is a cure! And we want you to know that we will not stop either!
In honor of you, we would like to recognize your huge hearts and have launched a campaign called: Valentine's for HOPE - Fight Cancer - Set a Record. This Valentine's Day - we are going to set a record by sending Liam valentines and help raise additional funds.
We are asking that people make valentines and mail them to:
Valentines for LiamPO Box 2701
Cornelius, NC 28031.
We are also encouraging people to make donations to http://www.bandofparents.org/.
There are so many lives that you have touched including church groups, classrooms, playgroups, families, etc. who will be sending cards to Liam.
The link below shows some of Liam's buddies including our kids (although he has not met them before but they all talk and pray for him every day!)
http://www.youtube.com/watch?v=4lpo3zxHVEQ
Love always,
Julie, Tony, Jack and Katie Yenichek
Tuesday, February 5, 2008
Sunday, February 3rd
I made panini sandwiches for lunch today. It’s one of our favorite weekend lunches. It was the first time in a year I’ve made them. I pulled out the panini grill, cooked some chicken, sliced some delicious rosemary bread, cut leaves of fresh basil, and assembled the sandwiches. While I was cooking, Liam happily ate a grilled cheese sandwich with no protests…he ate like any 3 ½-year old would do with no cajoling, begging, or pleading. Larry was reading a magazine and talking with Liam. Ella was taking a nap. Liam was talking about how he’ll ride a school bus when he gets bigger. It was a totally normal scene, except for the fact that I couldn’t initially find the panini grill because my kitchen was rearranged by my mother to deal with her nervous energy after Liam was diagnosed!
It’s a beautiful day, this Super Bowl Sunday. And it is so, so, so great to have a just a typical day. Everything from the outside looked “normal.” It could have been except for the little gremlin that is permanently mounted on my shoulder whispering the words, “cancer….cancer….don’t take anything for granted….cancer…cancer…live in the moment…cancer…cancer…bloody, awful cancer.” The gremlin is always there. Always. No matter where I am, what I’m doing, if I’m with Liam or not, that gremlin is there. We haven’t talked about it, but I’m pretty sure Larry carries that gremlin too. It’s what makes us determined to keep doing whatever we can to raise awareness and money and make sure that progress is made. It also in a strange way has strengthened our relationship…we are on the same page of needing to effect change in any and every way we can. We have to. Too many precious lives are at stake, including my own precious son’s.
I don’t normally do this. I don’t normally talk about the other warriors...not because they aren’t constantly on my mind and with me…they are…constantly. But cancer is a very personal thing and I would never want to violate another family’s personal space by saying anything about their child. At the same time, it’s the names and faces of all the children we have met along the way that literally puts fire in my belly. I can feel the fierce Leo coming out in me and a desire to do everything I can to protect those children by shaking every tree I can to raise awareness. At times I’m angry…very angry that pediatric cancer doesn’t receive more support from either drug companies or the government. Can we not catch a break anywhere? But I try to kept those feelings to a minimum…they don’t do me or anyone else any good. And then I think about the mother who I’ve known since the early days who I recently saw and had a silent communication with as she excitedly pointed to her daughter’s new hair. I know how she feels. Every time I kiss Liam’s hair, I let the softness of his “new” hair brush my lips and drink in the feeling.
The faces of every child we’ve met are permanently etched in my memory. When I haven’t seen a child for too long or hear of another one who is in Vermont receiving a different treatment option, I worry and wait and grow even more determined and also sad that I can’t do enough, fast enough. Many nights I awake with a start realizing I’ve been dreaming about one of the children I know who is in the battle that I often refer to as D-Day. And the nights I awake in a cold sweat are the ones I know I was dreaming about Lillie, Grace, Beau, Lucas, James or one of the other precious children the world lost the privilege of knowing in the past few months. There are so many others…other people whose faces I recognize but don’t know the names of but know they’re on the same cancer “team.” One little boy who we have heard of but have not met is now at home with no treatment options remaining. My heart aches and breaks for him and his family. Please honor him by reading about him and while you’re reading, you’ll understand why we are determined to fight. Carter, I hope your days are free of pain and discomfort. Carter’s Mommy and Daddy, I would do anything to take this pain away…anything.
http://www.caringbridge.org/visit/cartermoore
It’s a beautiful day, this Super Bowl Sunday. And it is so, so, so great to have a just a typical day. Everything from the outside looked “normal.” It could have been except for the little gremlin that is permanently mounted on my shoulder whispering the words, “cancer….cancer….don’t take anything for granted….cancer…cancer…live in the moment…cancer…cancer…bloody, awful cancer.” The gremlin is always there. Always. No matter where I am, what I’m doing, if I’m with Liam or not, that gremlin is there. We haven’t talked about it, but I’m pretty sure Larry carries that gremlin too. It’s what makes us determined to keep doing whatever we can to raise awareness and money and make sure that progress is made. It also in a strange way has strengthened our relationship…we are on the same page of needing to effect change in any and every way we can. We have to. Too many precious lives are at stake, including my own precious son’s.
I don’t normally do this. I don’t normally talk about the other warriors...not because they aren’t constantly on my mind and with me…they are…constantly. But cancer is a very personal thing and I would never want to violate another family’s personal space by saying anything about their child. At the same time, it’s the names and faces of all the children we have met along the way that literally puts fire in my belly. I can feel the fierce Leo coming out in me and a desire to do everything I can to protect those children by shaking every tree I can to raise awareness. At times I’m angry…very angry that pediatric cancer doesn’t receive more support from either drug companies or the government. Can we not catch a break anywhere? But I try to kept those feelings to a minimum…they don’t do me or anyone else any good. And then I think about the mother who I’ve known since the early days who I recently saw and had a silent communication with as she excitedly pointed to her daughter’s new hair. I know how she feels. Every time I kiss Liam’s hair, I let the softness of his “new” hair brush my lips and drink in the feeling.
The faces of every child we’ve met are permanently etched in my memory. When I haven’t seen a child for too long or hear of another one who is in Vermont receiving a different treatment option, I worry and wait and grow even more determined and also sad that I can’t do enough, fast enough. Many nights I awake with a start realizing I’ve been dreaming about one of the children I know who is in the battle that I often refer to as D-Day. And the nights I awake in a cold sweat are the ones I know I was dreaming about Lillie, Grace, Beau, Lucas, James or one of the other precious children the world lost the privilege of knowing in the past few months. There are so many others…other people whose faces I recognize but don’t know the names of but know they’re on the same cancer “team.” One little boy who we have heard of but have not met is now at home with no treatment options remaining. My heart aches and breaks for him and his family. Please honor him by reading about him and while you’re reading, you’ll understand why we are determined to fight. Carter, I hope your days are free of pain and discomfort. Carter’s Mommy and Daddy, I would do anything to take this pain away…anything.
http://www.caringbridge.org/visit/cartermoore
Subscribe to:
Posts (Atom)