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Wednesday, July 6, 2011 9:55 AM CDT
HAPPY 9th BIRTHDAY, OUR DEAR, SWEET, DARLING PENELOPE!!!!!
You are so beautifully grown-up now, wherever you are!!! We can just hear you laughing and giggling as the cake gets brought out to you with so many, many candles on it just waiting for you to make a wish and blow them all out, and we can just see you rip through the mountains of presents wrapped in pinks and purples with gold ribbons flying everywhere and feel you in our arms as we squeeze you and hold you so tightly with so much love and pride... We miss you so much, Penelope. We think of you every single day and send you thousands of kisses and big hugs all day long yet at the same time carry you in our hearts every moment of every single day.
We planted a big, beautiful deep pink gardenia at the beach house for you, in the garden that you love so much. It is almost as beautiful as the twinkle in your eye when you smile and the profound kindness in your soul.
Happy Birthday, Sweet Penelope!! Our hearts will always be connected.
Love always and forever,
Daddy, Mommy, Baba, and Oliver
Thursday, May 19, 2011 11:13 AM CDT
As we sit here and prepare this entry and soon leave to visit the cemetery we can see that the sun has broken through the clouds and the rain has stopped for the first time in days. Is there any doubt that Penelope has brought us sunshine today? She still looks out for us and over us as she did during her life.
It is unfathomable that four years ago today you left us. But you are always with us. We love you more than words can ever express. We think of all the time and the wonder and joy you brought us: your infectious laugh, your beautiful smile, your pursuit of happiness, your determination to "play,play,play" no matter the circumstances, the feeling of your hands in our hands, your body cradled on our hips or in our arms or sitting atop our shoulders, the love you shared with all of us.
And we miss you so much Penelope. Oliver came back from school the other day and said he cried in recess. When I asked him why he said he was running through the courtyard and noticed a big tree with bright pink petals in the corner. He thought of you Penelope because he knows pink is one of your favorite colors. He said that as he was running with his friends the wind picked up and blew the pink petals off the tree and many fell on his body. He said he started to cry because he thought it was so beautiful and said to himself "what would Penelope think of this?"
Penelope, we miss you because we love you so very much. You were and always will be so loved. You brought sunshine to everyone who was lucky enough to be in your presence...and you still bring us sunshine today.
Penelope, we love you forever and ever!!!!! Our hearts will always be connected!!!!!
Love,
Oliver, Baba, Mommy and Daddy
p.s. as we came back from our annual walk on this day around Central Park, we happened to glance down in the grass and found a four-leaf clover, and its bright, green leaves were in the shape of a butterfly!!! Thank you, Penelope!
Tuesday, July 6, 2010 8:37 PM CDT
Today, our dear, beautiful, sweet, sweet Penelope turned 8 in Heaven.
At the beach house – her favorite place in the world – we released 8 pink and purple balloons and watched them soar high up into the sky, up until the moment where we saw them no longer, the moment when we knew she had caught them and we could hear her unforgettable laughter in the rich, salty air and the rustling leaves around us, in the seagull's effortless and peaceful flight, in the swaying dune grass below, in the melodious clap-clap as each wave gently kissed the shore, in all the seashells gleaming with streaks of white, pink and purple, and in every single grain of sand as it sparkled under the bright sunlight.
Words will never describe how much we miss her.
John, Catherine, Isabelle and Oliver
HAPPY BIRTHDAY, PENELOPE!!! Our hearts will always be connected.
Love,
Daddy, Mommy, Baba and Oliver
Wednesday, May 19, 2010 3:27 PM CDT
Hello,
It has been a long time since we have placed an entry. Sometimes it is too painful to go somewhere that is so painful. Our love for Penelope has never been stronger and as a result our sorrow has grown too.
I asked Catherine "where do you think Penelope is?" She took a finger and pointed to the center of her chest. Of course. She is in our hearts. She will always fill our hearts.
And Penelope was all about the heart. Her courage was boundless. She faced her situation every day with a courage that we can never really explain. Her heart was also evident in the way she loved. She loved her family so dearly. She loved her brother and sister so deeply. She loved to "play, play, play" every day no matter if she was feeling well or not. And most of all she loved her life. She took every day and found a way to squeeze as much joy as she could from it. She did not have time to ponder her Fate or stop to ask why. That would only steal precious time from more important things like riding her bike with her brother, building a snowman with her sister, swimming at the beach house with her mom and dad, making cupcakes with her grandma, riding the swings at the park, petting her three cats, and laughing as much as possible. What a lesson for the rest of us.
We know that Penelope loved her life. I can remember her telling Catherine at the beach "mommy I am so happy". I can remember her lying in bed with me during her final days and saying "daddy I love you". She left us these gifts all along the road that marked her short life. She was the most amazing person we have ever known. And while we are anguished that her life was so short and their were many moments of suffering, we know that Penelope would tell us she was happy to be here.
Penelope we can still hear your deep belly laughs, we can still feel your body against us, we can still see the corners of your mouth turn up as you begin to send a beaming smile in our direction, we can still hear your beautiful voice tell us to look at the rainbow out the window, we can still feel your curly hair in our fingers. We will always have these memories and images. As Catherine said, they live in our hearts.
Penelope, we love you more than anything sweetheart. You are our beautiful daughter and we will always be your mommy and daddy. Our hearts will always be connected!!!!!
Love Mommy and Daddy
Monday, July 6, 2009 2:42 PM CDT
Today, Penelope turned 7 in Heaven.
HAPPY BIRTHDAY, Our Sweet, Sweet and Beautiful Girl!!!
This morning, we released 7 pink and purple balloons against the bright blue summer sky and over the glistening waters of the bay right in front of our beach house, her favorite place in the world. We watched them soar high through a few small white puffy clouds and way, way up into the air until we imagined her grabbing them all and giggling with utter delight as she always would on this special day. We also planted a tree in the garden that will flower pink and lavender later on in the summer for more butterflies and birds to rest on.
She would not have wanted tears and heartache, but they are so hard to hold back.
We miss you so much, brave, kind, loving, and adorable Penelope!!! Our hearts will always be connected.
Love,
Oliver, Babba, Daddy and Mommy
Tuesday, May 19, 2009 9:29 AM CDT
Can it really be? Can it really be two years? Can it really be two years that our beautiful girl has been gone? It is real and unfathomable at the same time. The pain of her absence pierces what is left of our hearts.
Penelope was the strongest life force I have ever felt. She practically glowed. No person I have ever met was more radiant, beautiful, courageous, or loving. To know her was to have your soul penetrated by pure goodness. Life was her canvas for us to watch her display such love and joy and beauty. And this was no empty canvas. It was a rainbow of colors, of life, of energy, of love. What a privelege to be able to say we knew her. What an honor to say I was and always will be her Daddy.
Penelope brightened every room she entered. I can see her now, walking through a door, making contact with my eyes and then seeing the corners of her mouth rise as that amazing smile crossed her face. Maybe we would play or laugh or talk. It did not matter. It was all perfection to me. Her thirst for life permeated her every move. She always wanted to play, to learn, to have fun, to be made to laugh (oh that huge belly laugh!). What I would do to feel her in my arms one more time, to kiss her soft cheek, to tell her how much I love her.
Today i remember Penelope riding bicycles with Oliver in circles in our living room. I remember her and Oliver flying through the air as I threw them on the pillows when we played "boom game". I remember her sitting in the bathroom as Isabelle put big girl makeup on her. And perhaps most of all I rmemeber her lying on Catherine's shoulder, one thumb in her mouth, the other hand stretched across Catherine's face with her fingers twirling Catherine's long hair. It was the safest and most comforting place in the world for Penelope...in her mother's arms.
Today I also think about jumping in the ocean waves while holding my daughter's hand. Penelope and I used to stand holding hands right where the waves crashed. We used to scream at the ocean and laugh and say "We are not scared of you! You are only water!" Well if Penelope was here today she would tell us not to think about this day. She would tell us it was not a good day for her or our family and not a day that should envelop us with sadness. Penelope used to lecture me towards the end of her life when she would see me filled with sadness. She would tell me "stop crying daddy. I am happy so you be happy!" I am trying my beautiful princess. I am really trying. We are all trying. We just love and miss you more than words can ever express.
Thank you for teaching us all so much about life. Thank you for showing us how to enjoy each day. Thank you for showing us what love is all about. Thank you for being the most wonderful sister to Baba and Oliver. Thank you for being the most wonderful child a parent could ever have.
We love you always Penelope. We love you super tons!!! Our hearts will always be connected!!!
Love Oliver, Baba, Mommy and Daddy
Friday, March 13, 2009 2:06 PM CDT
Hi,
I have wanted to update this journal for many weeks now. Each time I approach it something stops me short. It is just so hard, so painful to confront. How do you tell people that the pain of the loss of your daughter is still so searing that it hurts you physically as well. I fear that noone wants to hear those words. But it is true. Catherine and I miss Penelope more today than ever. It is so hard to believe it will be two years in May.
The flood of memories is always there. We try to always think of her beautiful smile, her infectious laugh, the happiness she experienced in her life. We will never forget the joy and perfection that existed when we held her in our arms, the softness of her cheek when we kissed her, the wonder of having her sleep in our bed. We remember her creativity, her thoughtfulness, her artistry, her intelligence, the pride she felt when she achieved something which she revealed by the corners of her mouth turning up.
Wonderful memories of Penelope dance through my head all day. They are gifts and punishment at the same time. But I am grateful for every one of them and I accept the pain that accompanies them. To remember that she was happy is the most important thing I can do. Penelope, you are with me every second of every hour of every day.
Life continues for our family. We are lucky to see Oliver so happy. He has clearly followed Penelope's lead and lives every day to the maximum, filled with joy and laughter. He is so thoughtful and loving too. His hugs and "I love you" is our salvation. He is a boy's boy, playing too many sports to count (soccer, hockey, baseball, karate....), loves to play "good guys vs. bad guys", wants to explore new corners of New York City, and has a daily thirst for knowledge, joy and laughter. I bought a scooter for each of us and we love to cruise around Central Park together and check out all the activity in the Park including dancers, magicians, and musicians. He also loves visitors to our apartment whether they are kids or adults...he just wants to play. His spirit reminds me so much of Penelope who said to me every morning when I asked her what we were going to do that day: "play, play, play!"
For Catherine, Isabelle and myself things have been more challenging. The pain, two years later, is still raw and the permanence of the loss becomes more real. I have been very involved with my charity Solving Kids' Cancer. For those interested in visiting the website it is www.kidcanceer.org . The charity is truly doing some amazing things for kids with cancer. I am also grateful for the friends I can rely on to listen to me when I feel at rock bottom.
Thanks to everyone who still follows this website and who remembers our beautiful Penelope. Penelope, Mommy and Daddy love you tons!!!! Our hearts will always be connected!!!!
Catherine and John
Wednesday, November 19, 2008 4:49 PM CST
Hi,
I dont know if I should share this because it is filled with sadness but it is true.
Last friday marked five years since we rushed Penelope to the hospital after a bath where we noticed something protruding from her stomach. It was just about this time in the early evening that I heard Catherine scream my name from the bathroom as she took Penelope out of the bath. I knew something was wrong but I never could have imagined just how wrong.
Life was perfect before that moment. I couldnt have been happier. And then in an instant everything changed and the descent into Hell began.
Yesterday was Oliver's fifth birthday. That day five years ago, only four days after Penelope's diagnosis, was a day that was filled with tears and sadness that should have been filled with joy. I am so proud of Oliver, so proud of his sweetness, generosity, and loving nature...but so angry that he no longer gets to play with Penelope.
A few days ago Oliver and I visited my mom who finally moved from her old apartment. Her old apartment was where Penelope died and for the first time since Penelope died I saw all the old furniture. I also saw the bed that Penelope died in again. I burst out crying in front of Oliver. I couldnt help it. I miss her so much and I am in so much pain. I guess I will just hope that the next five years will be better than the last five but I know that is impossible because Penelope will not be part of the next five years...only in my mind and in my heart.
Daddy loves you tons Penelope! Our hearts will always be connected!
Thank you to everyone that still thinks of my beautiful girl.
John
Friday, September 19, 2008 1:59 PM CDT
My heart absolutely ached today as I walked through Central Park kicking up the leaves. I could only think of Penelope, of course, and of all her friends who were with her in school, Sylvie, Noah, Morgan, Grey, Cara, Christy and William, and all the others, wondering how they're all doing, and hoping they still remember sweet, sweet Penelope.
Catherine
Friday, August 15, 2008 11:48 AM CDT
Hi,
Just a quick summer update. It is so hard to approach this website and make an entry but I am so grateful to the people that still follow the website and think about Penelope. She is in my every thought and missing her is something I feel almost every time I inhale.
As for our family, Oliver is having a great summer. He has been in a baseball camp in NYC which he loves and just went to a one week camp at our beach house where we were on vacation. Oliver was very proud to be picked up and dropped off on a school bus. I have a great photo of a beaming Oliver as we watched him come off the school bus one day. Oliver loves to swim at our beach house and I know Penelope would be so proud of his ability in the water. She loved her brother so much and he certainly loves her. He talks about her and ask me and Catherine what she is doing in heaven at any given moment. He misses her deeply but lives his life to the fullest. He makes us incredibly proud.
Isabelle just got back from being with her dad in California. And we now have a dog that she broght home with her. His name is Ace and he is a Shipoo, which means he is tiny and very cute. Our cats, Charlotte and Flower, are still getting used to the new addition. I think it is terrific and we hope it provides Isabelle with some happiness as she has lobbied us for a dog for many years!
Catherine and I are hanging in there, taking lots of time off from work and "stuff" this summer. I have been playing golf (I saw a "double rainbow" on the golf course last week that made me think of Penelope), teaching myself piano and generally trying to stay busy so that my mind does not always come back to the intense pain that lies below the surface. I have been very active with our charity, Solving Kids' Cancer, where we will be bringing sponsoring several clinical trials before the end of the year. This should provide a bit of "shock therapy" to the pediatric cancer community which operates at a glacial pace. We'll see. I have also gotten to know more amazing cancer kids and their families whom our charity strives to help. Sadly, some of these children have died in the past few months. It breaks what little is left of my heart and inspires me to do something, anything for the kids who are battling cancer today. We must all do more for these wonderful, brave kids.
Well thats basically it. Penelope, you are with me and mommy every second of every day. Mommy and daddy love you as much as is humanly possible. We love you tons!!! Our hearts will always be connected!!!
Catherine and John
Sunday, July 6, 2008 7:23 PM CDT
Happy Birthday Penelope!!!! Today would be your sixth birthday. We can only imagine how much fun today would have been....to watch you in some beautiful dress, playing with friends, eating lots of cake and ice cream, that amazing smile across your face, your belly laughs filling the room as you rip open presents. We only hope that you are somewhere today that is filled with smiles and laughter and joy. Although we miss you more than words can ever possibly describe, we just want for you to be happy and not worry about us. May you be catching beautiful butterflies, cooking some special master chef recipe, running effortlessly over lilypads, filling the air with the most wonderful laugh we have ever heard.
Penelope, I can remember when people would ask you how old you were and, even though you were four, you would look at me and say you were six. It always made me smile and pray to myself that you would reach that day. Well you are six today my sweet girl. You are always our beautiful girl. You are always our hero. You are always in our thoughts. You are always in our hearts. You are always the first and last thought of every day...and almost all the thoughts in between. You are always missed. You are always loved. You are always with us. You are always making us feel lucky that we got to be your mommy and daddy.
We love you forever. We love you tons. Our hearts are always connected.
Love,
Mommy and Daddy
Wednesday, June 25, 2008 12:25 AM CDT
Hi,
This is just a quick note to say hello to those that still read the website. It means a great deal to me that people still think of Penelope. She is in my thoughts all the time. July 6th would have been her 6th birthday and we will update at more length on that day. I think Catherine and I are still just trying to survive without her. The pain of her loss is relentless.
Oliver is doing very well and lives every day to the fullest. He loves to play and laugh and think...and ask lots of questions! Most of all he is as sweet as sugar and Penelope would be so proud of him. But of course so much of her is in him too...the laugh, the joy for life, the smile, the thoughtfulness, the caring...it heals my heart to see all these things in him.
Isabelle is a true teenager and very much involved with new friends. She will be going to horseback riding camp for a few weeks and then off to California to visit her dad the rest of the summer. Hopefully she will have a really fun summer.
Anyway, we will update more on July 6th. Penelope, I love you with all my heart. You are my hero, but most of all my little girl. Always my beautiful girl. I love you tons!!! Our hearts will always be connected!!!
Catherine and John
Monday, May 19, 2008 8:26 AM CDT
Hello,
Today is has been one year since Penelope was with us on this Earth. Both Catherine and I have written something today. Catherine has written the poem below and I have written the stream of consciousness that follows. These words cant possibly express the extent to which we miss and love Penelope. Such words do not exist.
If I were Penelope, I think I would say,
Do not cry for me, please, do not cry on this day.
But remember me, Sweet Penelope, happy and free,
Chasing butterflies, singing, building castles by the sea;
Remember me, Brave Penelope, soaring fast and so high
As I swing with Daddy and my feet kick the sky;
Remember me, Cuddly Penelope, my head on Mommy’s shoulder,
Sucking my thumb, holding Bear-Bear closer and tighter;
Remember me, Admiring Penelope, the best little sister
Who, with Baba, shared the miracle gift of laughter;
Remember me, Responsible Penelope, the loving big sister
Picking up Oliver’s pacifier—over and over;
Remember me, Sparkling Penelope, whose smile so luminous
Lead all of my friends on journeys so wondrous.
If I were Penelope, I think I would say,
No, do not cry for me, do not cry on this day.
Remember me in your heart where I’ll always be,
Wanting us both to be brave, safe and happy.
-- May 19th, 2008
I MISS...
I miss everything about you. Everything about you, every second of every day. That is the truth.
I miss holding you in my arms. Feeling your weight on my right hip, with your left arm bent over my right shoulder and your right arm pointing us to the next destination. I miss you sitting on my shoulders, maybe the happiest place in the world for me and hopefully it was for you too. I miss holding your hand and when you would wrap all your fingers around my pointer finger.
I miss you in the bed between me and mommy. I miss your beautiful feet against the side of my body. I miss watching you curl up in mommy's arms as you sucked your left thumb and twirled her hair with your other hand. I miss hearing your sweet sighs of comfort as you would fall asleep in mommy's coccoon like the litlle butterfly you were. I miss hearing you tell mommmy "I am so happy" right before you would fall asleep. I miss watching your eyes open when you were beginning to wake and you asking me for juice and while you would drink from the bottle I could see the corners of your mouth turn up as we looked at eachother and you thought about the fun activity we would do in the afternoon.
I miss our bedtime and morning rituals. No matter how you felt, when I would ask you how you were you would always say "good" and when I asked you what you wanted to do that day you would always say "play, play, play". I miss all the games we used to play on the bed too. Of course there was "Boom Game" where I would stack all the pillows against the head of the bed and you and Oliver would line up for me to throw you high in the air and land on the pillows. More than the game, I miss the excitement you both had when we would think of playing it and you and Oliver would run through the house into the bedroom screaming "boom game! boom game!" Of course, many games on the bed followed, including headstands, summer saults and swings in the blankets.
I miss our late night conversations. We were certainly night owls. You must have been the only three or four year old that went to sleep at midnight every night. I loved when you would not be ready to fall asleep and I would take you downstairs on the couch and we would look out the window at The Empire State Building, the stars, the planes going by, the moon. Most of all we would just talk. You would tell me stories about school, games you liked to play, ask questions that you had or request a silly story for me to make up. You were the most intelligent child and you understood people in the deepest of ways. To sit on the couch and talk with you was to feel your beauty, intelligence and magic all as one.
I miss watching you play with Oliver and Isabelle. Isabelle could really make you laugh and you loved to spend time with her and her friends. I imagine some of your favorite days were when we all went apple picking and her friends came. You were such a good big sister to Oliver too. He really loves you as you do him. I miss watching you two guys race around the livingroom on your bikes and every few laps stop over by me so I could fill up your bikes with pretend gas. I miss watching the two of you run full speed into our bean bags with those huge smiles on your face. I miss throwing the two of you straight up in the air, seeing those huge smiles on your face, catching you under the arms, and then you would both tell me "again Daddy, again!"
I miss you and Oliver laughing those huge belly laughs together. You two have the most incredible, from the gut, laughs. They are the expression of pure joy and they were fuel for me and mommy when we heard them. Sometimes it is hard to remember that those laughs used to fill our apartment around the clock. Oliver has your laugh. Just one of the many things you two share and will always share. He is you and you are him.
I miss going to our favorite places together. Of course we went to so many playgrounds. There was the Choo Choo park, the Bumpy Slide park, The Elephant park, the park by our beach house. I miss watching you and Oliver at those parks together, running from one area to another, telling me "High in the sky Daddy!" when I pushed you on the swings, watching you slide down the big red tube while I would wait for you at the bottom, having you prepare pretend food for me underneath one of the slides. And so many other places will always be ours too: The Gray's Papaya on 72nd Street where we would get hot dogs, dance to the great music on the radio, and you and Oliver would sit on the counter to eat and drink; our great vacations to Atlantis (you called it "our friend's beach house") where you would swim in the pool, have tea and cookies with mommy, play with your cousins and Isabelle and be the picture of happiness; all our apple and pumpkin picking trips where you would reach up and pluck apples from the tree and take a bite of every one.
I miss taking you to school with mommy. We could not have been more proud of you. For all you had been through, for you to make it to school and have that experience made me and mommy so proud. I can still see you on your very first day of school in your beautiful dress. I can see you walk over to the water table and start to wash the dolls. I can see it like it was yesterday. I remember when you came home all excited to tell me about where butterflies come from. I remember my mouth agape when you explained what a chrysalis was. And I was so happy to see you make friends, to see how proud you were when you were made the "helper of the day". I can still remember at the end of one day when the helper of the day got to talk about something special and you talked about Bear-Bear. That look of pride, modesty and happiness, somehow all mixed together that I saw that day is the one I will never forget. It is the same look on the front of the website. I miss it. I miss it. I miss it.
I miss you at our beach house. This was a place where you were so happy, a place of pure joy and nothing else. I miss swimming in the pool with you and you screaming "look mommy, look daddy, I'm swimming!" I miss chasing you around the shallow section of the pool trying to kiss you and hearing your beautiful laugh as you would run away. I miss watching you and mommy with your feet in the water of the bay looking for hermit crabs. I miss watching you and mommy and Oliver and Isabelle feed the swans. I miss crossing the street onto the beach and then running into the ocean waves holding hands with you and singing "we're not scared of you! Your only water!" And then when the waves would come we would run out as fast as we could laughing. I miss going for ice cream in town. I miss going to the supermarket where we would eat half the fruit before we got to the cashier. I miss watching you in your room at the beachouse where you would carefully select which outfits or bathing suits you wanted to wear. I miss playing games in your room, so many games, so much fun. I miss watching Sponge Bob and other cartoons in the den as mommy would you get you an icepop. I miss watching you on the back porch of our beachouse that magical day when you caught five monarch butterflies with your fingers.
I miss watching the care you took in getting dressed with all your beautiful outfits that you picked out and coordinated. I miss watching you take care of all your many baby dolls and get them all properly dressed and fed for bedtime. I miss playing doctor with you, but just the game and not the real thing. I miss seeing you in a bath with Oliver. I miss you and Oliver getting me and Wilma all wet with water and bubbles and laughing hysterically. I miss drying you with a towel when you got out of the bath and playing the "squirmy sausage" game as you tried to wriggle out of the towel I had you wrapped up in while we both laughed uncontrollably.
I miss hearing you tell me all your wishes and dreams, all the things you wanted to do when you grew up like be a chef, a doctor, a nurse, a painter and of course...a butterfly catcher.
Sweetheart, you are always my butterfly catcher, my little girl and my big girl, my daughter and my best friend, my princess and my hero. I miss you more than words can ever possibly express. We will always be your mommy and daddy and you will always be our beautiful girl. We are so lucky to be your mommy and daddy.
You are always with me Penelope. I love you tons! Our hearts are always connected!
Sunday, May 11, 2008 10:41 AM CDT
Hi,
Well today is Mother's Day and it is so painful for Catherine and me. May 19th will mark one year since Penelope passed away. The thought of updating this site is, to be honest, very difficult. These have been the hardest weeks as it is almost impossible to not be flooded with memories of what Penelope was going through at this point a year ago.
But I try to remember her words when she would see me get upset. She would practically order me and say "Daddy stop crying. When I tell you my legs hurt I want you to be happy. I am happy so you be happy". Oh my sweetheart you were the bravest person ever. We were so lucky to be your Mommy and Daddy. You soaked life up like a sponge. You showed everyone how to seize every day. I wish I could stop feeling so lost and empty without you. Our hearts will always be connected. We love you tons!!!
Thank you to all who still follow this website and think about Penelope. She will always be remembered.
Catherine and John
P.S. My one commitment is to do a lengththier update on May 19th.
Friday, April 11, 2008 4:38 PM CDT
Oh, gosh, is this difficult...
Hello.
The cherry trees, magnolias, daffodils, and crocuses are starting to bloom. If you walk South down the Poet's Walk in Central Park and cross over the road, you'll get to a beautiful grove of pink and white magnolia trees. At the bottom of the grove, there is a "stone" in Penelope's honor. Oh, how she loved watching the purple, white and pink buds transform into glorious flowers before her very eyes!
My words cannot do justice to the intensity of emotions in our house.
My darling angel, we will always be connected.
Mommy, Daddy, Baba, and Oliver
Saturday, February 2, 2008 2:50 PM CST
Hi,
It has certainly been a while since we updated the site. Updating the site is incredibly hard and emotional and often filled with tremendous sadness. In addition, I am often struck by how little I have to say outside the fact that the pain of Penelope being gone rings louder than ever. And we think people may not want to hear that, or maybe they are expecting we are "better", or should be getting better. It does not work that way for us. All I can think is that the amount we miss her and the pain we feel is a reflection of how much we love her....they are all infinite.
And we are flooded by so many memories of our beautiful Princess Penelope. I was just thinking about one of her last days when she was doing very poorly but wanted me to hold her outside on the terrace. I cradled her in one arm with pain medicine slung over my other arm. Oliver was out there playing and she asked me to turn my body while holding her so she could see him better. She said to me "Daddy, I like to watch Oliver run". Here was a child that used to run and play with her brother all the time, but now she was stripped of all her physical abilities. Was she mad? Did she feel sorry for herself? No. She just wanted to watch her brother run. I can think of nothing more beautiful and loving and I will be sure to tell Oliver this story when he grows older.
Oliver is clearly doing the best of us all. He is very happy and healthy and loves to "play,play,play", an expression he got from Penelope who said those words every morning no matter how she felt. He is enjoying school and all his activities which include baseball, ice skating, karate and talking endlessly about super heroes.
Isabelle is doing well in school and beginning to enjoy the social part of being a teenager. She is a great kid with a very big heart. But I can feel her sadness without Penelope. I wish I could take it away for her. I cant imagine being a teenager and losing a sibling and seeing all the things she had to see. She didnt deserve this fate either.
As for Catherine and I....well...the emotional pain and daily suffering is beyond words. Penelope is with us every moment. Thinking of her is like breathing...you do it every second.
Anyway, back to Penelope. I am often struck by just how much she loved life. Every day she felt well was a thing of beauty for her and watching her soak up every second was a gift for me to watch. So much laughter, so much playing, so much beautiful conversation, so much affection, so much care, so much insight into people, so much originality, so much comfort in who she was. She was very secure in herself and in the love we all had for her (and always will). Oh what I would do to be able to spend a few minutes with her, hold her in my arms and tell her how much I love her. I walk down the street and see places she would love to go to, games she would love to play, clothes she would love to try on, smiles that would be filling the air.
Penelope used to talk about what she wanted to be when she grew up. She would say "I want to be everything when I grow up". "Everything" included being a chef, an artist, a nurse, and a doctor. But most of all I remember it included wanting to be a butterfly catcher. She would often talk about being a butterfly catcher and how she would run after them and play with them. She even told me she would dream about it. She loved butterflies and we had the joy of watching her actually catch Monarch butterflies with her fingers on the back porch of our beach house. I hope my beautiful girl is catching butterflies all the time now, and running like the wind with big belly laughs filling the air.
We love you so much Penelope Jane London. You are always our hero and our shining star. Our hearts will always be connected.
Love,
Mommy and Daddy and Oliver and Isabelle
Sunday, December 9, 2007 4:11 PM CST
Hi,
Every week I tell myself I will update the website and each week I cant seem to find the courage to do it. It takes all my strength to type the words on this page. The wound from Penelope's loss is everywhere, it has not lessened, it has not dissipated. Each day I think how marvelous, incredible, brave, fun and beauiful she was. The question that always comes into my head is "how can she be gone?". The question that comes from my heart at all times is "Do you know how much I love and miss you my princess?" Penelope and I used to always have a game where I would say "how much do I love you?" and she would smile back at me and say "Tons!!!". It is so true Penelope, I love you "tons" and I love you forever.
The holiday season, as most parents in our situation would tell you, is beyond difficult. All the things Penelope loved, including Halloween, Thanksgiving and soon Christmas, are so painfully piercing in her absence. We spent a few days as a family in Nevis over Thanksgiving in a wonderful villa on the ocean. I took Oliver and Isabelle on a golf course (Isabelle loves driving the cart)located in a rain forest with monkeys playing all over the course! We spent hours down by the green ocean playing in the water. Isabelle and Catherine went horseback riding on the beach. What I have come to realize very quickly, however, is that there is no escape. Anyplace beautiful and fun only makes me think how much Penelope would have loved it. Catherine and I do our best to get through the days and keep ourselves "moving" but it is so hard.
I am spending a lot of time with Scott Kennedy (he lost his beautiful son Hazen to NB also) on our charity Solving Kids' Cancer. We will start to fund research projects in the next few weeks. Our website should be up within two weeks also. It is good for us to do this, to honor our kids memories and wishes and to try and prevent other families from experiencing our tragedy.
The good news is that Oliver and Isabelle are doing well. Oliver's smile and laugh are infectious (just like Penelope) and Isabelle is doing great in school, very social, but also starting efforts to raise awareness about kids cancer.
As I finish this note I am lying on my bed wishing my beautiful Penelope was lying next to me so I could tickle her, or that she was playing with her stuffed animals and baby dolls next to me, or I could see her suck her thumb while petting our cats in perfect peace, or she was asking me to play "Boom" game (where I would throw her high into the air and onto the pillows on the bed). We had so much fun and so many laughs. What I would do to experience it just one more time.
Well sorry it has been so long between updates. We will make it through these holidays somehow even if we have to "white knuckle" it as Catherine so rightly says. Thank you all for checking in on us and most of all for remembering Penelope, the most amazing person I will ever know.
John
Friday, October 19, 2007 3:18 PM CDT
Hello,
Just a quick update. It is 5 months to the day that Penelope passed away. We still cant believe she is really gone. Her personality, smile, laugh and love for life were so large that it is terrifying to really think about the fact that we will not see them again. It is also very difficult to know that she will not grow up. We only know how happy she would have been had she had the good fortune to have been healthy.
There is not a day that goes by that she does not dominate our thoughts. We have moments where we function ok but they can be few and far between. We were so incredibly lucky to be her parents. It is the greatest honor and privelege that could ever be. We will love her every day and forever.
We are trying to focus on Oliver and Isabelle. Oliver is doing quite well. He asks about Penelope often wanting to know things like "does she have a bed in heaven?" "Is she up in the clouds?" "when will she come back?" But despite all these questions and the difficulty of understanding that she is really gone, he shares Penelope's love for life, huge belly laughs, desire to "play, play, play" and gentle, warm nature. He is very concerned about his parents and like Penelope wants us to be happy. He is sweet beyond words. Isabelle has gotten off to a very good start in school and was the star of the volleyball team until she broke her elbow 2 days ago! It is more of a chip than a break but has ended her season. She has also provided much comfort to us both.
We are facing Halloween and Thanksgiving and Christmas with much trepidation. Last year Penelope alternated between a cat, ladybug and butterfly costume. She really loved the holidays and we will try to travel on thanksgiving and Christmas just to be in a different place.
We will be starting a new charity very soon called Solving Kids' Cancer. Scott Kennedy, who lost his beautiful son Hazen to neuroblastoma a year ago, is co-founding the charity with us. We really want to change the face of pediatric cancer with this charity so no kids suffer like our kids did. More on this charity in the months to come.
Thank you to those who still read this site and remember our sweet Penelope, the most wonderful, courageous, beautiful person we have ever had the honor of knowing. Our hearts will always be connected Penelope!!!
Catherine and John
Friday, August 24, 2007 11:29 AM CDT
HI,
Well it has been a while since we updated the website. I have thought about making an entry often but it is so hard to write down what we are feeling. We miss Penelope beyond words and I cant imagine that ever changing. I am filled with so many memories of her and of the closeness we felt while she was here with us. It is still hard to really acknowledge that she is gone and we will not see her on this Earth. With each day I marvel more and more at how incredible she was. She lived her life seizing each moment, never complaining about what was happening and always wanting to laugh and play. She will always be my hero.
We have been going through the motions of life this summer. I have been back at work and we have moved into a new apartment. We have spent every weekend at the beach, a place that Penelope loved with all her heart. It is hard to be there and not be flooded with memories of her swimming in the pool, catching butterflies with her fingers, playing in the ocean, eating ice pops out of the freezer, playing with Oliver...and just filling the house with her voice, her energy, her love for life. This summer Oliver has learned how to swim on his own and he loves having the waves crash on him at the beach. He laughs with such delight and his belly laughs are just like Penelope's were. It is all so bittersweet.
Isabelle has come back from California where she had spent the summer with her dad. It is so nice to have her back and to have more noise in the house. She has been terrific and plays with Oliver often. He just worships her, just like he did with Penelope.
Oliver does make me feel better at times. He is so affectionate and is constantly telling me and Catherine how much he loves us and gives us hugs. He also has the sweetest disposition is always in a good mood and loves to laugh at anything goofy. It is hard to believe he is only three.
I am glad that we rescheduled Penelope's memorial in Central Park from September to May. Frankly, we are just not ready. In may the magnolia trees will be in bloom at penelope's grove and hopefully we will be in a better emotional place to have the memorial.
Penelope, I miss you so much and love you with all my heart. I am trying to listen to your beautiful words where you told us you wanted us to be happy. I am really trying. You are in my thoughts every second. Everywhere I look I am reminded of you or some memories of us together. I was blessed beyond words to be your Dad. Our hearts will always be connected.
Catherine and John
Friday, August 3, 2007 8:31 AM CDT
After much thought, we have decided to postpone Penelope's Memorial to early next May when the magnolia trees will be in bloom. We are just not emotionally equipped to do anything right now, and sincerely hope you understand.
Information on the momorial service will be posted primarily at the bottom of the "Introduction" part of the page so that people can refer to one part of the site as opposed to scrolling though entry dates for more details.
Thank you and be well.
John and Catherine
Tuesday, July 31, 2007 11:20 AM CDT
Thank you for your continued entries, thoughts and prayers, and of course for your generous support of the Penelope & Sam Fund. I haven't been able to visit Penelope's website in a while; it's just been too painful and continues to be so,
John and I struggle with the details of the memorial service on September 8th. We will keep you updated when we can.
Thank you for understanding,
Catherine and John
Wednesday, July 18, 2007 3:08 PM CDT
Hi,
We just wanted to let people know that we are having a memorial service for Penelope on SATURDAY SEPTEMBER 8th. We have not worked out all the details yet but if you are interested please save the date. It will be in New York City and we will be unveiling a plaque in Penelope's honor at the foot of a grove of magnolia trees in Central Park. Penelope loved magnolia trees and loved Central Park too.
Anyway, we will share more details when we figure them out but we are settled on the date.
We continue to miss Penelope so deeply and the pain of her loss is still so raw. It is so hard to be without her beautiful smile, laugh, voice and to know how much she would be loving her summer swimming and playing and eating popsicles and taking bubble baths with Oliver, hanging out with Isabelle and on and on.
We love you forever sweetheart. Our hearts are always connected.
Catherine (Mommy) and John (Daddy)
Friday, July 6, 2007 7:14 PM CDT
Hi,
Penelope would have turned five today. She really loved her birthdays and celebrating, playing, opening presents, laughing, blowing out candles and being with her family. She would talk about her birthday all the time. She would say how many cakes she wanted, what flavors, what toys. It was special for her. Since it has only been seven weeks since she died, Catherine and I continue to feel the very acute pain of her loss. Will this pain last forever? Will it ever subside? We try and remember how important it was to Penelope that her family is happy and that "nobody should feel yukkie", but it is still so hard.
We came to our beach house this week, the place that Penelope loved as much as anywhere. It has been a struggle as visions of her in this house, on the beach, in the pool, picking up hermit crabs on the bay, feeding the swans...they all dance in my head and right now evoke mostly the painful feeling of her loss. To celebrate her birthday we bought five pink balloons and released them into the sky one at a time. After about a minute they were way up in the sky and somehow had formed a perfect pentagon. Pentagon was a word that Penelope knew and was quite proud of. I can still hear her saying it with a smile on her face. We told Oliver the balloons were for Penelope up in heaven. He asked us if she would grab them through the clouds. It sounded good to us.
There were some other interesting "signs" in the past 24 hours too. I don’t know if I believe in "signs" or anything else right now for that matter but today has me thinking more about the possibilities. The first thing you need to know is that three of Penelope's favorite things in the world were animals, butterflies and rainbows. Anyway, it started last night when we went to a friend's house who made us dinner in his back yard. While we were eating a beautiful deer jumped over a fence and came right next to us while eating flowers in the garden. The deer stayed for 45 minutes standing 15 feet from us the whole time. I have never seen a deer so comfortable around people. It kept staring at us. Finally after eating all the flowers it hopped back over the fence.
Then this morning I got up early and opened the door of the beach house and was welcomed by hundreds of Painted Lady butterflies. As you guys might remember, Penelope loved butterflies and Painted Lady butterflies were her favorite. The interesting thing was that yesterday there were no butterflies near our house.
Finally, I went to visit Penelope's gravesite today. It was brutally difficult to be there and my emotions just poured out. On the way back to the beach house there was a sunshower and as I looked out the rearview mirror I saw these brilliant sunrays shine through a hole in the clouds. I thought to myself this is the kind of weather where you see a rainbow and literally as I finished the sentence in my head I looked up in the sky in front of me and saw the most brilliant rainbow I have ever seen in my life. I called back to our house to tell them to look outside and they saw it too. It was huge, spanned the whole sky and radiated with color.
Well, I just wanted to share some of this day with the group. Life continues to be excruciating on the whole and the loss of Penelope dominates our emotions all day. I wish it were otherwise but right now it is what it is. In my heart I hope these "signs" were Penelope's way of telling us she is happy and playing and wanting us to try our best to live and be happy too. Penelope, Mommy and Daddy love you forever. As do Oliver and Isabelle. Our hearts are always connected. Happy birthday our little princess.
Catherine (Mommy) and John (Daddy)
Wednesday, July 4, 2007 4:37 PM CDT
Hi,
It is July 4th today and in two days it would have been Penelope's 5th birthday. We have come to our beach house because it is a place that Penelope truly loved and it seemed like the right place to be on her birthday. However, it has been so difficult. The memories of her are everywhere and right now memories are so painful. It is hard to escape the quiet and loneliness and emptiness that remain where Penelope used to be. I miss her so much and love her with all my heart. I wish I had more positive things to say but life is very hard right now. I spend my days flooded with images of Penelope, many beautiful, some quite painful, but all making me long to have her back as a healthy and happy and beautiful girl...the way she deserved to be.
I always try and think of Penelope's words about wanting "mommy and daddy to be happy", wanting "nobody to feel yukky" and of course her telling me she loved me. She was amazing in her wishes and the gifts she left us. I hope, with time, I can gain more strength to fulfill her wishes. It is the only way to honor her memory.
I hope everyone has a nice 4th of July and is enjoying the summer.
John
Monday, June 18, 2007 12:15 AM CDT
Hi,
Well its been over 4 weeks since Penelope passed away and the pain and emptiness of her loss are only bigger. It is indescribable to be without her. She was such a life force and soulmate to Catherine and me that the world seems totally lifeless without her. Yesterday was Father's Day and my birthday and both of those things did not help me. We are trying to function but it hurts so much not to be with her that it seems like all we want to do is find a place to cry.
Anyway, we try and remember her words about wanting us to be happy and hopefully that can happen one day but right now the pain of her loss is more intense than anything I have ever experienced. We are trying to focus on Oliver and Isabelle but it has been very difficult so far. We miss you so much Penelope and we love you forever. Our hearts will always be connected sweetheart!
We are still planning on a memorial service in September in Central Park. We will give out more details when we set a firm date. Thank you for your support.
JOhn and Catherine
Friday, June 1, 2007 2:37 PM CDT
Hi,
I dont even know what to say. The pain of Penelope's passing is so painful and so piercing that it is hard to breathe let alone write an entry. We do want to let people know that we will be having a memorial for Penelope later than we at first thought. We are thinking maybe in September when everyone is back from the summer. It will take us a while to get a tree in Central Park and also we are not in an emotionally good position and we want to make it a really nice testimony to Penelope's life.
Forgive us for not going into detail about Penelope's funeral or the end of her life or what is going on right now. It is all too painful. It is excruciating. Thank you all for your support. We will update more again soon.
Please keep Penelope in your thoughts and prayers.
Catherine and John
Wednesday, May 23, 2007 8:05 AM CDT
Hi,
It is really too painful right now to write in depth but Catherine and I wanted to let people know that we buried Penelope on Monday in a beautiful, small ceremony.
While this is all excruciating beyond words, we are happy that Penelope is no longer in pain. She was in so much pain in the end and nothing is worse than that. She is finally at peace.
We will have a memorial in a few weeks to celebrate her life and maybe plant a tree in Central Park. She would have liked that very much. We will post the details when we get more organized.
Thanks to everyone for all their wonderful support.
Catherine and John
Saturday, May 19, 2007 7:22 AM CDT
Penelope passed away at 5:30 this morning. Just before she died, I held her in my arms and then Catherine held her in her arms and then we both held her together as she took her last breath.
Please keep her in your prayers.
Catherine and John
Friday, May 18, 2007 1:49 PM CDT
Things We need to remember:
Penelope hasn't opened her eyes more all day
Penelope must be blind in her left eye as it is purple and shut
Penelope hasn't moved an inch on her own in four days
Penelope has not eaten or had anything to drink in five days
Penelope has lost the ability to use her left hand and her right hand is starting to fail too
Penelope has a lesion coming out of her skull and keeps complaining of dizziness
Penelope's legs have been hurting all the time
Penelope's left leg is believed to be fractured and she is believed to have internal bleeding in her leg
Penelope's abdomen is very distended and making her very uncomfortable
Penelope can no longer suck her thumb or hold her "Bear Bear"
Penelope can barely find the strength to utter a word and we desperately try to decipher the sounds coming out of her mouth
Penelope is on more methadone than can be believed
Penelope still nods when asked if she want to be told stories
Penelope has told everyone she wants them to be happy
Penelope told Daddy "I am not crying, so you don't cry" (I am trying but it is so hard)
Penelope is told "We love you" by her mommy and daddy about 1,000 times a day
Penelope has not complained ONCE about what is happening to her
Penelope, when told that there is a place called heaven that waits for her, told me "I know. I will go when I am ready"
PENELOPE, WE LOVE YOU MORE THAN WORDS CAN DESCRIBE, YOU ARE OUR BEST FRIEND, OUR PRINCESS, OUR HERO! OUR HEARTS WILL ALWAYS BE CONNECTED!
Tuesday, May 15, 2007 2:25 PM CDT
We know it has been a while since we updated people. Frankly, it has just been too painful. Penelope is suffering more than words can accurately describe. She has become immobile due to uncontrollable pain in her leg. Additionally tumors are growing everywhere on her beautiful little body.
Catherine and I are trying our best to manage Penelope's pain with the assistance of hospice and her doctors, but for some awful reason things continue to be very painful for Penelope. We will keep increasing her pain medication.
She is awake parts of the day and we tell her stories or caress her when she allows us. We always tell her how much we love her and how she is loved by so many people. But her days are miserable and filled with pain. She insists she is happy but she probably does not want to let us down. She could never let us down. Her life has been a gift to us.
Why must she suffer so much? How could this be happening to our princess? It has now been months of progressive disease, pain and suffering. As her parents this is tearing us up. There is nothing worse than watching your child in pain and Penelope has been shouldering more than any person we have ever met. She is showing us courage that we have never witnessed before. We want her to know it is ok to let go. It will always be the greatest honor in the world to say we were her mom and dad and brother and sister. We just dont want her to suffer anymore.
Catherine and John
Sunday, April 29, 2007 11:48 AM CDT
Sunday afternoon and we're still in-patient. It's been quite a challenge finding the right methadone dose for Penelope: high enough so that the pain is more manageable, but not so high that the side-effects become insurmountable. As with every drug, methadone has a zillion side effects, some of which we have been able to control with other drugs, who in turn also have a zillion side effects, and so on, and so on. In general though, Penelope does seem more comfortable, although still very, very irritable. On occasion she requests relief for sporadic pain that breaks through the methadone, relief which we try to provide with another narcotic. Her days and nights are flipped so we were up until about 4 a.m. watching vintage Tom and Jerry cartoons. Boy, are those violent!!
Tomorrow after blood products, the plan is to go home once everything is set up there with medication and equipment. It will have been 6 days of in-patient stay, which sometimes seems like six months and at other times seems like six hours, since the days and nights blur into one.
It will be great to get back home.
The one last thing that I would like to add is that on Friday we witnessed one of the most unbelievable and awe-inspiring feats of strength, determination and courage. That evening, Penelope received a visit from her big sister Isabelle who had been out of town for a few days on a school trip. Penelope had done very little more in the previous weeks than stir in bed on her own. She actually needed assistance to sit up whenever we needed to change her pyjama top. Adjacent to Penelope's bed is a lower cot where John sleeps (I sleep in bed with her). Isabelle walked into the room and sat on the floor next to the lower cot. Penelope used all of her strength to sit herself up in bed and crawled towards the edge of it to lower herself onto the cot so as to be closer to her sister, all the while carefully and meticulously pulling behind her the mutiple wires and i.v. lines connected to her body. When we offered to help, she got very upset. After a while, she eventually managed to get herself onto the cot where she and Isabelle shared a piece of cantaloupe.
Several days later, tears still stream down my face as I think about this. It's just one of those moments that I know we will carry with us forever.
Thursday, April 26, 2007 4:45 PM CDT
After being in clinic for most of the day yesterday, we decided that with Penelope's disease progressing so rapidly and with the increased difficulty we were having managing her pain at home, to go in-patient in order to start her on methadone. Because Penelope has been on such a heavy duty i.v. narcotic for at least three weeks, we were told that the only way to safely switch her over to methadone was to do it in-patient over a 3 day period so that she could be closely monitored. Needless to say, any time that we need to be in-patient at this point is just a nightmare.
At 7 p.m. last night, we started the methadone. At 8 p.m., Penelope had such an adverse reaction to the dose that she stopped breathing for a few seconds, enough to scare the wits out of us and to have all the emergency tools whipped out in front of her. Nothing like being put under the gun and being asked then and there if we want to rescuscitate (sp?) if she were to stop breathing altogether. To make a long story short, she basically overdosed. We then had to wait another 8 hours until 4 a.m. to start her again on a much, much, much lower dose (1/10 of the original amount), all the while being completely without pain relief. After Penelope tolerated the new dose, she then received blood and platelets, coupled with some pre-transfusion meds. Penelope then developed THE worst reaction we have ever seen to the platelets. In a matter of moments, her eyes became almost swollen shut and her little body was covered with hives. She was hysterical with pain, itching, and fear of what was happening to her skin. After a dose of i.v. benedryl, the allergic reaction started to subside. Unfortunately, we now have to wait another 6 hours until the Benedryl is completely out of her system to start her on the next dose of methadone, this next one a fraction higher than the last. Hopefully, the plan is that by Saturday morning, we will have titrated her to the right methadone dose so that we can continue to do it at home.
It's been hell.
But to end things on a lighter note: last night at 3:00 a.m., Penelope roused from her drug-induced sleep and asked that we turn on the t.v. A musical show came on and she started kicking her legs in the air, keeping time with the beat. She's very annoyed with being in-patient, but as always, she's being a trooper.
Sunday, April 22, 2007 0:06 AM CDT
The past few days for Penelope have been extremely difficult. On Thursday, after being under anaesthesia for about 4 hours, she received radiation to her hip to hopefully alleviate some of the pain in her legs. Although the body scan showed numerous, numerous tumors, we decided to hold off on other areas for now to avoid adding radiation side-effects to the list of what is currently making Penlope so uncomfortable. Unfortunately though, she has been complaining of alot of pain in the past 48 hours, with new pain spots surfacing almost faster than we can keep track. We're pretty much maxed out on her current i.v. narcotics, and keeping her comfortable has become quite a challenge as her pain manifests itself in anger, frustration, and often what appear to be irrational bouts of screaming.
We are scheduled to return to the clinic on Monday for blood, platelets and Zometa (more i.v meds to help with pain), and to discuss what, if anything, we can do.
John and I are having a difficult time "keeping it together." With days and nights all mixed into one, complete sleep deprivation, isolation, and such an excruciating feeling of powerlessness and helplessness, not to mention overwhelming sadness, we are digging in deep for some extra strength and courage from within.
Please keep Penelope in your thoughts and prayers.
Monday, April 16, 2007 6:25 PM CDT
Penelope's disease seems to be progressing rapidly as is apparent from nut-size tumors that are popping up on her chest, neck and jaw. We are really trying our best to keep her pain-free and comfortable. While she had a difficult and long day at the clinic for blood and platelets (thank you, donors!!), she seems to be in better spirits at the moment with John carrying her around the apartment. She's sucking a HUGE coconut lollipop and looks so incredibly adorable.
I'm signing off now to hang out with them.
Sunday, April 15, 2007 9:50 PM CDT
Hi,
Somehow people on the guestbook seem to think that Penelope died. THIS IS NOT TRUE. I dont know who started this but I am not happy about having to deal with it. As we know this is something we will be writing about soon so it is very painful for my family to have to write this email now.
Penelope is in a very bad place but she is very much alive today, struggling with the pain and disformity this disease has created, but also enjoying the loving, tickling, kissing and story telling she receives from her family.
Catherine and John
Sunday, April 8, 2007 10:04 PM CDT
Hi,
I will keep this short as I am lying in bed next to Penelope watching "Clifford the Big Red Dog." She is comfortable at the moment but her days, in general, have been filled with pain, lack of energy, and she is basically flat on her back 24 hours a day. Her right eye is totally swollen with red, blue and yellow coloring her eyelid. Her tumors are literally everywhere now. She can no longer walk, get up on her own, or even go to the bathroom on her own.
However, her mind has never been sharper and we tell many stories (some true, some made up), have an occasional laugh and really pass time lying next to her, cuddling her and tickling her.
Her quality of life is so poor. I dont think people have any idea what she is going through, weeks on end only comfortable in a horizontal position on the bed, pain meds dripping into her body around the clock, pain a constant in her life. AND SHE NEVER COMPLAINS ABOUT IT. She is amazing, and we are so lucky to be able to be in bed next to her, talk to her, giggle with her, smell her, tickle her and look at her and realize that cancer can not take her amazing beauty away.
Catherine and John
Thursday, March 29, 2007 7:07 PM CDT
I am writing this entry so that I remember it in the future. I am hoping it will help Catherine and me and our family one day....
Penelope is doing very, very poorly. Tumors are protruding from her skull, eye socket, spine, abdomen and are in every bone of her body. We know her time with us is so very short. She is in extreme pain, her vision is impaired and we have her on pain medication around the clock.
I was just lying in bed with her, holding her in my arms and I told her "I know you feel very yucky right now. Daddy wishes he could feel yucky instead of you". Penelope shook her head and said to me "I want nobody to feel yucky". Her eyes were closed and she went back to sleep. I squeezed her a little tighter and with tears coming down my face I said "thank you so much for saying that Penelope". She wants us to be happy. She doesnt want us to suffer. She is an angel as she seeks to keep her family from pain. We are so amazingly blessed to know her, to have her as a member of our family. We just want her to be as comfortable as possible in the period to come. I pray she is spared more suffering. Catherine and I tell her soon she will have no more pain and she will be chasing butterflies and laughing and singing. We love you so much Penelope.
Please keep her in your prayers.
Catherine and John
Sunday, March 25, 2007 6:10 PM CDT
I am lying in bed next to Penelope as she naps. She is so beautiful that it is not possible to find the words to describe her. She is being bathed in love every day.
Catherine and I know that our role now is to keep her as comfortable as possible, find a way for her to smile if possible, and always let her feel secure in the fact that no one could be loved more. We tell her that soon all the pain will be gone and she will be chasing butterflies. I so desperately dont want her to go, she is everything to our family, her life should just be beginning and all her days should be filled with joy and playing...but we dont want her to suffer any more. Her quality of life is terrible as this disease has her in so much pain and we are trying to find a way to alleviate it through pain meds but it is quite difficult. She is also completely sapped of energy and her body reflects how ravaging this disease is. We are also very concerned about the potential of her losing her vision as the disease is appearing around and above her eyes and on her skull.
But through it all, and you can not truly appreciate this unless your child has gone through this, Penelope manages to play and laugh and sing. While mostly confined to bed, she does not feel sorry for herself for a second. When she is awake, she listens to books being read to her, watches her favorite cartoons, writes letters with her fingers in the air, eats BBQ baby back ribs with her hands, asks for made up stories from her mom and dad, sings beautiful songs with her wonderful voice, and also laughs whenever the opportunity presents itself. She is more and more heroic by the minute. We can not imagine life without her and the strength of our love for her is the strongest feeling a human being can have.
Please pray for Penelope and that this part of her life's voyage is as peaceful and pain free as possible.
Thank you.
Isabelle, Oliver, Catherine and John
Friday, March 23, 2007 4:06 PM CDT
At the moment, Penelope is lying comfortably in bed underneath her leopard-print blanket, chomping on a few pieces of apple while John is reading her and Bear-Bear Curious George stories. She looks very, very happy.
This morning, John and I spent a few hours with a nurse from hospice care, reviewing information and going through endless paperwork. Signing the "No Rescucitation" consent form was one of the most painful things we've ever had to do.
Hopefully, we'll soon have the pain issue fully under control, and enjoy whatever the weekend has in store.
Please keep her in your thoughts and prayers.
John and Catherine
Monday, March 12, 2007 4:09 PM CDT
Sorry it's taken so long to update. Sometimes, the days just merge into each other and we quickly lose track of time.
One week ago, Penelope was in too much pain to walk. But yesterday, she was comfortable enough to cross the Lillypad Bridge at the Children's Zoo in Central Park all by herself, and to do a quick ride on her tricycle on the terrace! Although her disease is progressing, the various chemo agents and meds are thankfully helping with managing some of the pain.
There are more giggles and laughter, than not. That's all that counts.
John and Catherine
Friday, February 23, 2007 1:45 PM CST
Hi,
Today Penelope received her 4th stem cell rescue so I thought a top 10 list was appropriate...
Top 10 Ways You Know It Is Your Child's 4th Stem Cell Rescue Today:
1) When you see how busy the doctor is you say "Just give me the cells, I can infuse them myself"
2) You debate whether to read the sports or business section during the infusion
3) Your wife wakes up from her nap on the couch and says "Is it over?"
4) The smell of the preservatives, which made you sick the first time, now actually makes you wonder what you are going to have for lunch
5) Instead of it actually depressing you, you beam with pride when the doctor tells you your daughter will set the record for most rescues she has performed.
6) You inquire as to whether home health care can do the infusion so you can stay at home.
7) You are so bored that you actually decide to make a top 10 list
8) You realize why your doctor was so excited 3 years ago that she was able to collect 4 bags
9) You think that Lance Armstrong's cancer treatment story, while very difficult, doesn't hold a candle to what your 4 year old kid has been through.
10) You look at your child on the bed and realize you are in the presence of a real life hero.
Penelope remains playful and laughing and curious and generally comfortable. We are looking forward to a weekend at home as we have been at the hospital every day this week. We are of course doing our best to manage her pain and hoping that she can hold off the disease for as long as possible as every day in her presence is a gift beyond words.
Please keep Penelope in your thoughts and prayers.
Catherine and John
Thursday, February 15, 2007 7:19 PM CST
Hi,
Here is something Penelope said a few minutes ago. She was referring to the moment she received anasthesia right before we laid her on a table on tuesday to radiate her legs again to reduce pain. She said:
"You know when they gave me the magic liquid that was white and it went in my port and it made me tired and I fell asleep and I dreamed I was holding a flower and butterflies were coming and eating from my flower. It was also very warm. Do you know what I am going to be when I grow up? I am going to be a butterfly catcher!"
Not much else to say. Penelope is having lots of leg pain which we are trying to help her with but it is preventing her from walking. We hope the radiation will soon take effect and alleviate her pain. She still remains playful and always looking for a good laugh. We are taking many photos and videos and audio recordings of her singing and playing. She is spending much time playing with Oliver and Isabelle and us. We go to clinic tomorrow for blood and platelets and to see what else, if anything, we can do for her.
Please keep Penelope in your thoughts and prayers.
Catherine and John
Friday, February 9, 2007 12:41 AM CST
So what do you do if you only have weeks to live? Well if you are Penelope you don't listen to that (she of course does not know this but we do) and you spend your afternoon with your shoes off dancing on the giant piano at FAO Schwarz. Then you pick out twenty toys which your mom and dad lug back home and then you stay up until 2am singing songs and laughing into a voice recorder.
That was yesterday after spending the first 6 hours of the day at the hospital getting blood and platelet transfusions and being in a drug induced sleep. Penelope continues to have pain in her legs which she NEVER complains about. We see her hobble at times and she is unable to bend over and so only when we ask if she hurts will she describe her pain. She also refuses to take pain medicine and rips off her pain patches when she can feel them on her back. This defines courage in a way we have never seen. Where does she get this inner strength, valor, thirst for life, and incredible inner beauty? What a gift it is to be in her presence. What a gift it is to say we are her mom and dad. We are just trying our best not to crumble around her and instead to bathe her in all the love we feel for her.
Please keep Penelope in your thoughts and prayers.
Catherine and John
Sunday, February 4, 2007 8:13 AM CST
It is excruciating to watch your child in pain. Penelope is not sleeping well. She moans, twitches, and cant seem to get comfortable. While she is asleep right now, I fear what her pain level will be when she awakens.
But before she fell asleep she was playful in her own way. Since she almost completely stopped walking in one day's time she has decided to just deal with it. Even during the course of last night, prior to falling asleep, she finds ways to enjoy her life. We told stories in bed last night about my dog Max from childhood, she pretended her blanket was a scary ghost that kept trying to frighten me, she laid on her back and showed Catherine and I how she could spell Penelope in the air with her finger, she had Catherine carry her to the kitchen for ice pops and other treats. At about 5am when Penelope was struggling to sleep I touched her arm and she said "Hi" in the sweetest voice while keeping her eyes closed. I asked her if anything hurt and she shook her head no. Would she tell us the truth at this point? I dont know. Maybe she is really trying to protect us in some way. Or maybe she is just trying to will herself through everything. Or maybe she just does not want to go back in the scary radiation room for more "pictures" or be in the hospital. She really loves being home with family, various visitors,her dolls, the cats, her toys and all the comforts that must feel safe and warm. We will try to do everything to keep her out of pain and smiling as much as possible.
Catherine and John
Saturday, February 3, 2007 3:03 PM CST
Well I guess I posted too soon this morning. Penelope woke up with pain in both her legs and is limping badly. This disease clenches Hope by its throat and squeezes. But Penelope takes whatever comes her way and adjusts and now is watching a Straberry Shortcake DVD while eating squash soup and a bagel and drinking Sprite out of a 20oz bottle. Earlier we went for Pizza (we had to carry her) and then bought over a dozen cupcakes and a birthday cake.
In terms of what lies ahead now for Penelope it is very scary. When will the pain get worse? Will she stop being able to use her legs soon? Will she be symptomatic in other places? Should we radiate both her legs soon? And many other questions that I do not even want to put in words.
Please keep her in your thoughts and prayers.
John
Saturday, February 3, 2007 11:38 AM CST
Hi,
Well I cant say what today will bring (Penelope is still asleep) but yesterday was a wondeful day for Penelope. She did not have to got to the hospital (only the second time this week) and she made the most of it. She was playful in bed in the morning and then went to The Natural History Museum with Catherine where they saw the dinosaurs and of course visited Penelope's favorite exhibit...the butterflies! After that they went up and down the stairs (yes Penelope was walking up and down stairs...a miracle in its own right) had a hot dog at the museum cafeteria and bought about twenty lollipops at the candy shop. Last night was all about "play, play, play" as Penelope likes to say and Oliver and Penelope and me played various chasing games throughout the house, including hide and seek, steal the balloon, scary tickle monster and "Boom" game (Tom Giovine and Brett Spector you guys know this one all too well). While Catherine was putting Oliver to sleep, Penelope and I played songs on the computer and danced. Penelope enjoyed hearing some Elvis songs she had never heard before (including laughing at my terrible singing) and she patiently waited for one one of her favorites which is Johnny Cash's Fulsom County Blues. She then spent time putting many of her dolls in their pajamas and talkes to them and sang songs to them. She finally fell asleep around 1am.
But as a nervous dad I now type this note but wonder if Penelope will feel ok today. Every day is such a mystery and we pray she will continue to feel well. But the worries are always there....why is she sleeping so late? why are some of her blood tests not looking right? Will her pain return soon and how will we comfort her? We are trying to take one day at a time and nothing coats our fear like the sight of Penelope feeling well. And so we hope and pray that today will be a day like yesterday. So very precious. Just wishing I could freeze time.
Thank you all for your thoughts and prayers.
John
Saturday, January 27, 2007 2:45 PM CST
Hi,
Well the weekend has gotten off to a nice start. Penelope had Maya, her friend from NYU, come visit and help her make beautiful crafts of wood flowers that they painted and put photos of Penelope in the center. They are quite beautiful and Penelope was quite proud. Now grandma Alice is here and Penelope and Oliver are having a bowling competition in the living room.
We also have a plan for tomorrow. Since Penelope now loves The Food Channel she has decided she wants me to film her tomorrow while she debuts her food show which she has decided to call Penelope's Place. Rumor has it she will be teaching her viewers how to make cupcakes as well as macaroni and cheese. It should be fun.
Penelope has finished chemo this week (sort of a medium level chemo) and next week will be hard as we will be inpatient to restart her on TPN (IV nutrition), give her a stem cell rescue, and generally expect the effects of chemo to make her have a fever, feel fatigued and potentially fairly sick. So we are staying in the moment and enjoying the weekend.
We will check back in soon.
John and Catherine
Wednesday, January 24, 2007 8:13 AM CST
Hi,
We know it has been a while since we updated this site. Please forgive us as we have been incredibly busy caring for Penelope, moving apartments and, frankly, sometimes just not being in the mood to relive hard days in words again.
Penelope is doing pretty well right now. Most importantly she has been free of the leg and arm pain that had immobilized her and made her miserable. We dont know if this is from the radition or the virus therapy but we are just so relieved not to see her in exquisite pain.
We also started a lower dose chemo yesterday which was 2 days of IV infusion and five days of pills. Penelope has been a champion and agreed to take pills again.
She has generally been in good spirits and playful and even nibbling at her favorite foods like goat chees, hearts of palm, artichokes, Swedish Fish, Sun Chips, lamb chops and, of course, Chinese food. She has been busy with various art projects, playing with her dolls, making us take her to the local cupcake store where she gets at least a dozen cupcakes. We have had visitors come which she always enjoys but there is noone she enjoys more than Maya, the wonderful social worker for NYU, who always arrives with goodies to play with and nibble on.
She is walking with a slight limp, but the important thing is she can walk and that gives her some of the independence she craves. However, she is frightfully thin and we are working on various nutrition ideas and praying that these treatments do not debilitate her any further.
We will update again soon. Thanks for all your incredible thoughts and prayers.
Catherine and John
Sunday, January 14, 2007 12:23 AM CST
Hi,
We have obtained and have started giving Penelope an oncolytic virus. This is a live virus injected into her body. It is unproven and dangerous but is something we think is worth trying and something we think Penelope would definitely support. Unlike chemo, it is not supposed to have debilitating side effects but again we dont know and obviously this is putting her at risk. While the chances of this helping might be quite low we pray that it helps her in some way. We would certainly appreciate your positive thoughts and prayers too. Thank you.
Catherine and John
Thursday, January 11, 2007 2:58 PM CST
Penelope is declining very quickly. She can no longer walk and needs to be carried around at all times. She has intense pain in her right leg and left arm and she is presently wearing a pain patch on her back. We scanned her today and the disease is in every one of her bones it seems. We have been told that she does not have more than weeks to live.
We did make it to the toy store and she pointed to afew things she wanted. Now she is sleeping but even this seems quite uneasy as she is twitching a lot.
We love her so much and she is the greatest gift we as parents could have ever hoped for. We want to try and keep her as comfortable as possible for this part of her journey but all we want to do is scream to see her begin to suffer so much, to watch her want to live so desperately, to see the happiness being stripped from her days.
Please pray for peace for our beautiful girl, that she is still allowed somehappiness and smiles in her life, that she is spared as much pain as possible.
John and Catherine
Wednesday, January 3, 2007 1:02 PM CST
Hi,
Sadly, Penelope has been experiencing pain in her legs and now is walking with a limp. It is brutal for us to watch her go through this. However, she has kept her incredible spirit and continues to be playful and finds smiles throughout the day.
Clearly we are very concerned that this treatment is not working for her. We will scan her next thursday if things dont get much worse between now and then. Our options are clearly very few if any at this point. We are taking things one day at a time.
Please keep her in your prayers. Thank you.
Catherine and John
Wednesday, December 27, 2006 12:06 AM CST
Hi,
Happy holidays to everyone! Sorry it has been a while since we updated but we have been busy with Penelope's care and, frankly, we are pretty exhausted.
Penelope received hot antibodies eight days ago. We were in the hopital for two days for this treatment and discharged a week ago. We were told over and over that it would be "extremely painful" during the infusion and despite being pre-medicated and put on opiods she would feel tremendous pain during the last twenty minutes of the infusion. Well clearly they don't know Penelope very well!
She was kept in a lead enclosed bed (due to the radiation) and while laying there kept looking across the room at Catherine and me very calmly. Every minute or so we would ask her "are you feeling ok?" and she would nod yes. Then we would say "does anything hurt you?" and she would shake her head no. The doctor kept saying the pain would come any second...but it never did! She had no pain at all. Catherine and I were thrilled that Penelope was spared any pain. Of course the flip side is that the treatment "might not have taken up" but we did a scan on friday that showed that the antibodies and radiation are taken up in her areas of disease...now we just have to pray that these agents will do their job and this treatment will surprise everyone and be of benefit to her.
I have also spent a lot of time recently looking into other forms of therapy including oncolytic viruses but these are very unproven, may involve traveling outside the United States for treatment and might not make sense for Penelope anyway. We'll see.
Thankfully, Penelope has been feeling pretty well the past ten days. She has been happy and playful and had a wonderful Christmas as did her brother Oliver. Oliver and Penelope got to open presents at my mom's on Christmas Eve (including a surprise visit from Santa who quickly dropped off presents on my mom's terrace!), and a fun dinner on Christmas Day with Catherine's family, including cousins Charlie and Alec who our kids just adore.
We have been told to expect Penelope's blood counts to drop dramatically from the treatment she received. Very soon she will likely begin to need regular blood and platelet transfusions (i.e. several a week). She is also at risk of fever and infection which would mean being inpatient in the hospital and put back on multiple intravenous antibiotics. We are hoping to get lucky and duck a fever for as long as possible so Penelope can really enjoy her days at home with family, cats and so many Christmas toys!
We are enjoying every moment and feel blessed that Penelope is not only with us, but generally feeling well. We certainly know how quickly this can change and so we are trying to stay in the moment (very hard for me and my anxiety drives everone nuts!).
Our hopes for a happy and healthy holiday season to everyone. Thanks so much for all your prayers and support.
Catherine and John
Friday, December 15, 2006 12:30 AM CST
Hi,
We just finished Penelope's scans and the results were very bad. Basically, Penelope's scan looked almost the same as the last MIBG at the end of August at CHOP. The only improvement was her lymph node area which did not light up. But overall it still looks terrible with lots of bone and bone marrow disease apparent on MIBG.
Her LDH was actually still normal today so we were disappointed her MIBG did not look better as was Dr. Modak. The only positive we can think of is that her MIBG must have actually looked even worse a month ago when her LDH was 700 (it is now 187).
Dr. Modak again asked us if we wanted to continue to treat Penelope. Since she has made it through the worst part (i.e. high dose chemo) we will start hot antibodies on tuesday and hope it does not compromise her quality of life much.
For what its worth, her fevers are gone, her appetite has returned and she is feeling somewhat better overall.
Anyway, just wanted to update everyone.
Catherine and John
Tuesday, December 12, 2006 2:14 PM CST
So far, today has been a good day: a hospital-free kind of a good day. Penelope was eager for an outing, a first in a while, despite the fact that she is still very tired and frail. We chose to see an IMAX movie at the Museum of Natural History, a movie about cowboys and the traditions and history of cowboyhood. We traveled to Morocco, Spain, Argentina, Chile, Ecuador, Mexico, Texas, and Canada, all on horseback, and all in 40 minutes. Although Penelope enjoyed the movie, her favorite part was going to the museum store for rock candy lollipops. We had originally agreed on getting 5 (4 for Penelope and one for Oliver), but somehow ended up with 19 and a couple of bags of sour worms. Gee, how did that happen...After our purchase, Penelope wanted to visit the cafeteria where we had a couple of French fries. She suddenly got cold and very tired, so we headed back home for a nap.
The rest of this week is going to be very, very tough. Tomorrow, Penelope has an eccocardiogram, followed by a CT scan and an MIBG injection of Thursday. Friday, she gets back-to-back general anaesthesia for bone marrow aspirates (front and back) in the morning and an MIBG scan in the afternoon. I am terribly worried about what the aneasthesia is going to do to her already weakened body, but it's a must to help determine the next path.
Her fevers remain a mystery, but they don't seem to be as high. Her blood count is good, with platelets finally coming back on their own. Her appetite has increased ever so slightly so she is off TPN, but her energy remains very low and she has a hard time walking.
She continues to be one of the most adorable little girls on this planet. ( :
Thank you for your thoughts and prayers.
Saturday, December 9, 2006 11:37 AM CST
Sorry it's been a while since we've updated, but the week was very difficult. After being discharged from the hospital on Monday afternoon, we ended up in the e.r. on Tuesday evening. Penelope has been having high fevers on and off, has been feeling yucky, very tired, not eating much, and sleeping alot. She actually asked to go to the hospital and said that she wanted the doctors to make her feel better. She was immediately put back on more antibiotics (last night I counted that she is supposed to take 7 different medications every day this week, some oral some i.v., which breaks my heart considering that very little else goes into her system right now).
Much against the hospital's comfort level, John managed to convince the docs to let us go home every night(yeah!), even if it means spending just a few hours in our apartment. We promised to continue to give Penelope her scheduled i.v. meds during the night, and we watch her fevers very closely. It's definately better than remaining in-patient and in isolation!
Penelope has been on all of the top gun antibiotics for a while, and the fever still doesn't go away. The doctors are puzzled about what could possibly be the source of infection. At this point, we're almost hoping that it would be a blood infection so that at least we would know the cause of the fevers, and know how to treat the source.
Until we find the cause of infection, everything else -- scans and possible antibodies -- remains on hold.
We're really hoping that this holiday will bring us what we so desperately hope and wish for. Please keep praying for her.
Thank you!
Thursday, November 30, 2006 10:11 AM CST
Hi,
Sometimes hospitals make no sense at all. My latest example is here at Sloan where Penelope gets daily visits from "The Pain Team". That usually means that that two doctors walk in and say "HI, where Dr. So-and-So and Dr. So-and-So and we are with the pain team". So today I finally asked them why dont you guys change your name to "The Pain Relief Team"? They, of course, looked at me like I was from Mars!
Anyway, Penelope is hanging in there. She has been in a drug induced sleep a lot because of the chemo related pain she was having. She has wanted the lights in the room off all the time and doesn't want to hear anyone talking.
This morning was a little better. She was up for a few hours and she ate a little yogurt, which was a change from her previous strict diet of rainbow sprinkles and strawberry ice pops. She also made sure we signed up for tonights activity which is make your own "slime". She insisted on wanting to make only pink or purple slime. I agreed with her that those are the best looking slimes and the other slimes are really gross.
She is on 5 antibiotics and still with fever, although down from 105 the other night to 102 now. She is also receiving intravenous nutrition and almost daily blood and platelet transfusions which force her to be pre-medicated with more sleep inducing medicine. Her shaking, which was very violent a few days ago, has also decreased as we switched the pain meds she seemed to be having bad reactions to. Now the key is to get her counts back up. Her WBC rose for the first time today from a whopping 0.1 to 0.2 but still no ANC.
Thanks to everybody for your prayers and good thoughts. It means so much to Catherine and me.
Lastly, we just have to say that there are no words to accurately describe the heroism that Penelpope displays. She is fighting with everything she has and she is enduring more than I have ever seen another person endure. And she never complains about her pain. Never. She is stoic, determined and always beautiful in her will to overcome her adversity. She teaches us every day what it really means to be courageous.
Catherine and John
Tuesday, November 28, 2006 7:42 AM CST
Hi-
We've been in-patient at Sloan since Saturday morning, and it's been a very, very difficult few days since. Penelope is in allot of pain from her internal sores, and it took three days to find the right pain medication that wouldn't give her severe side effects. For a while, she was shaking so much that we weren't sure if she have having seisures or not. It turns out that the shaking (which prevented her from falling alseep for a couple of days) was a side effect of the opiates, so we switched to a different group altogether.
With a fever and no counts, Penelope is on four different i.v. antibiotics as well as i.v. nutrition, remains in isolation, and gets blood and platelets on a regular basis. She has lost an incredible amount of weight and is so frail that she spends her days on her back in bed. She refuses to sit up, to eat or drink, is not much interested in doing anything else but simply lying in bed. It is so difficult to look at her tiny little arms and legs, her bones sticking out of her back, and the skin hanging off her stomach, and not cry. And of course, it didn't help when the nutrition specialist and his team said that she was "severely undernourished and underweight." It took all I had to not say "duh!"
We'll remain in-patient until the fever is gone and her counts go up, hopefully in the not-too-distant future.
And hopefully, we'll proceed to the Hot3F8 treatment from there.
The good news (and you HAVE to find some good news somewhere!) is that the doctors agreed to forgo the daily GCSF injections for two daily i.v. doses of GCSF. It's not as effective in i.v. form but the shots are just way too traumatic and painful at this point. The other good news is that we got to spend Thanksgiving at home, while we thought for sure we would be in-patient by then.
We're hoping for some better days ahead...
Please keep Penelope is your thoughts and prayers. She is fighting very, very hard!
John and Catherine
Tuesday, November 21, 2006 3:56 PM CST
We finished the last of the four days of high dose chemo on Sunday. We were fortunate the entire four days of chemo were on an out-patient basis, with continous i.v. hydration, even at home. It was a terribly, terribly difficult weekend nevertheless. Penelope had no appetite, no interest in anything, was extremely uncomfortable (pain? nausea? fatigue? it was hard to tell...) and extremely listless. She maintained a low grade fever throughout most of the weekend. It was all very, very scary and heartbraking. The doctors are not sure if these are all symptoms of disease progression, or early side effects of chemo.
On Monday, we returned to the clinic for blood and platelets, a breeze compared to the four days of chemo. After a nice two hour nap, Penelope seemed to feel a bit better, her appetite ever so slowly coming back. We made it home for our "Thanksgiving dinner" which we planned for Monday because we don't know where we'll be on Thursday. Penelope perked up at the site of her extended family, especially her cousins, and even enjoyed a few pieces of turkey in cranberry sauce, and a couple of bites of apple pie.
This afternoon, after playing and resting at home all day, she insisted on picking Isabelle up at school. She was so proud and happy to meet up with her big sister! "The cold air feels good!," she said as we left school, and then asked to go for a swing at the playground, which we did. What an unbelievable and courageous little girl!
As we headed home, the sun was setting over Manhattan and the golden rays warmed her face. "I love the swings," she said, and burried her face in my neck. She's just so delicious.
Tomorrow, we return to the hospital for her stem cell transplant. Hopefully, it will go smoothly, and hopefully, we'll have a second Thanksgiving dinner on Thursday!
Happy Thanksgiving everyone!
John and Catherine
Wednesday, November 15, 2006 6:53 PM CST
Hi,
Unless something changes between now and the morning, we will be starting high dose chemo tomorrow. It will be Cytoxan, Topo, Vincristine. This is obviously an enormous risk for Penelope as she will be receiving more than four times the amount of cytoxan she has been receiving the past two months. We are aware that she could develop a lethal infection or her disease could continue to progress and if this were the case the end of her life would be brutal. At the least we should expect the next month to be in the hospital dealing with side effects of treatment.
Frankly, she is in pain in her leg now and we believe if we do nothing there will be little if any quality time for her and she will be enduring a lot of pain very soon. We look in Penelope's eyes and we see someone that still wants to fight. We feel her spirit and it is still strong. Obviously we are biased but others that watch Penelope say the same thing and the docs at Sloan think she "looks good".
We wish there were easier choices or even a less toxic therapy but we believe Penelope's disease is taking off and either we do something VERY aggressive or we should just manage her pain...we believe a middle road does not exist for Penelope..We wish so much that it did.
Anyway, we just want to let everyone know what we are doing. Please keep her in your thoughts and prayers.
Catherine and John
Tuesday, November 14, 2006 9:28 AM CST
Hello,
The news is very bad. Penelope's disease has unquestionably taken off in the past few days. In the last 24 hours she has developed severe pain in her left leg and can no longer walk. It is unfathomable how fast this is happening. Yet Penelope does not complain at this point. I don't know how she does it. How does she absorb this horrible fate and not scream out? She teaches lessons about life through her actions, her heroism, her desire to move forward and not look back.
It now appears that Penelope's time with us is quite short. We are trying to figure out if there is anything to do but are being advised to stop any treatment. We want to minimize her pain first and foremost. She does not deserve this pain that is taking over her body. She is the most wonderful person we have ever had the blessing to experience. It is amazing that we have the honor to say we are her mom and dad.
Today marks exactly 3 years since Penelope was diagnosed. It is a miracle that she has made it this far given how bad her disease biology is. The fact that she is alive almost two years after relapse with NMYC disease status is also nothing short of incredible.
Please pray for Penelope, that she is spared as much pain as possible, that she is given mercy for all she has been through, that we can keep a few smiles on her face in the time ahead.....thank you.
Catherine and John
Tuesday, October 31, 2006 11:06 AM CST
Hi,
It has been a while since we updated. Penelope has finished her second cycle of chemo and we were in the hospital this weekend for side effects which included fever, neutropenia and worst of all some terrible internal sores which have caused excrutiating pain for Penelope. Thankfully, we are home now and Penelope is gearing up for Halloween tonight with Isabelle and Oliver. She will, of course, be alternating costumes which include a ladybug, a cat, a butterfly and a witch. She is so excited!!!
Her LDH and node continue to show that she is responding to the combo of nifurtimox and topotecan and cytoxan she is receiving. We are keeping our fingers crossed that she will have a good couple of weeks before she is scheduled to start chemo again. It is so tough to put her through this chemo but we know it is having a benefit for her and we are so thankful that she has still enjoyed a good quality of life when she is not in the hospital.
We hope everyone has a great Halloween! Thanks for your love and support.
Catherine and John
Wednesday, October 11, 2006 3:05 PM CDT
Hi,
We have completed one cycle of topotecan/cytoxan and Nifurtimox and we went to the clinic for blood tests and received some surprisingly good news. Her LDH (a marker for her disease burden), which was 3,400 three weeks ago, has fallen to 625 (upper limit of normal is 618). We are now ABSOLUTELY CONVINCED that Nifurtimox is having a positive effect (at least in the short term) for Penelope. She feels great, the node in her neck is down by 75%, and her other labs look good.
We are also writing to those of us out there who may be "looking into the abyss" and reading this to say DON'T GIVE UP!!!! There is always hope...noone can take that away. We are incredibly thankful for this piece of good news today. Our warrior princess seems to be taking things in stride and playing in a cardboard box with her brother Oliver. Just another day for her!
Some more exciting news is that Dr. Giselle Sholler (who is the lead researcher behind Nifurtimox effects on Neuroblastoma) at The University of Vermont is organizing a trial with nifurtimox for relapsed neuroblastoma kids so all sick kids with relapsed neuroblastoma will get to participate in the potential benefits this drug may bring. We are so thankful to her for all her cutting edge work and help in getting this drug for Penelope and all the other relapsed kids!
While we have no idea if this is just a short term benefit or something more, we are just so happy that Penelope is thriving today and as playful as ever.
Take care.
Catherine and John
Tuesday, October 3, 2006 10:36 PM CDT
Hi,
Every once in a while you catch a moment you know you will never forget. Tonight I had one of those moments. It started about 3 hours ago when Penelope realized that two of her bottles for her baby doll were missing. Well Penelope worked herself into a bit of a fit and soon had our whole house looking for one Strawberry milk and one regular milk plastic bottle.
She kept insisting that she had left them at the "Choo Choo" train park (a park for kids with a "choo choo" train in the middle of it)but I knew that was impossible since I was with her and collected everything before we left the park this afternoon. Well after an hour of searching I had the brilliant realization that I had left the bottles in my car when we left the hospital earlier today. So when I said I was going down to the garage in our building, Penelope insisted on going too. Clearly she did not trust my ability to inspect the car without her!
So at 10:45pm I went downstairs with my beautiful girl on my shoulders in pink pajamas and black dress shoes (yes, she also dresses to the beat of her own drummer). Of course, the bottles were not in the car and when I told Penelope we would continue the search tomorrow she looked me in the eyes and said "choo choo park daddy....NOW!". Well that was scary enough for me and we trekked the quarter mile in the dark to the "choo choo" train park. As we passed several groups of adults on the street I had to laugh as they stared at my hairless four year old child in pajamas and dress shoes perched on my shoulders like Christopher Columbus in search of America. I wonder what they were thinking. Or maybe they just chalked it up to "only in New York!".
Anyway, it was a beautiful night and a surreal experience and when we finally arrived at the park there was no sight of the bottles. But my Captain was much more perservering than me and she sauntered up to the choo choo train and had the sense to actually look UNDER it where the bottles had some how ended up. The smile on her face as she turned to me was almost as big as mine when I saw the bottles!!!! Anyway, she just amazes me with her will, spirit and intelligence. She just keeps pushing forward and wont let anyone stop her...in more ways than one. As we walked home both laughing I felt so lucky to be her dad and that I really treasure the time I get to spend with her. It is a gift.
John and Catherine
Saturday, September 23, 2006 6:37 PM CDT
We finally finished the last dose of chemotherapy today. Penelope was receiving it all week at the day clinic (making for very long days), but on Saturday the clinic is closed, so we were in-patient at NYU for a day. It's been a really, really, really long week for everyone. There was a piece of plastic steak amongst the "pretend food" in the hospital's playroom; it was beginning to look very tasty. I think the only one who is not hallucinating at this point is Penelope. Despite everything, she continues to be an incredibly playful big and little sister, and brings a huge smile to everyone's face.
We are so looking forward to tomorrow, a day without hospital or clinic (yeah!!!!), so that we can take some more wagon rides.
Have a nice weekend.
Tuesday, September 19, 2006 0:38 AM CDT
Hello-
We went to the hospital today with the hopes of starting Penelope on 5 days of chemotherapy to slow down her disease progression. In order to start chemo though, urine "gravity" needs to be at a certain level ("gravity" is a way to measure the urine's concentration, and hence an individual's level of hydration). Despite the fact that Penelope was on i.v. fluids for most of the day to try to get her sufficiently hydrated, her urine gravity remained too high to start chemo. So we'll be returning to the hospital tomorrow to try again. At the clinic, we met a very nice woman whose son has leukemia. We bonded quickly and shared stories about how a family's life completely changes after a young child (or anyone, for that matter) is diagnosed with a very serious illness. We were talking about things that no parent should ever even have to think about. At one point, I imagined being a fly on the ceiling and listening to our conversation. It was all just so surreal.
We didn't make it to the beach this weekend, but it was a good one nevertheless. Oliver and Penelope love to be pulled around the streets of NYC in a big, red plastic wagon with two seats facing each other, similar to the one they use at CHOP to transport the kids in. It's actually so much easier to handle than a stroller, and there's so much luggage room that the kids can pack blankets, toys, drinks, and snacks, with plenty of room left for Bear Bear and Bunny, and them of course. We hit the playground at least five times, pet a few farm animals at a street fair, tried hoolahooping in the park with a bunch of other hoolahoopers, took late evening walks along the pier (with the wagon), watched people fish in the Hudson and give us strange looks when we asked them if they eat what they catch, went swimming in our building's pool, bike riding in the living room (rules? what rules?), and splashed around alot in the bathtub. Unfortunately, there were a couple of very scary moments when Penelope complained of pain in her neck and hip, two of the many areas that have disease. Since she never ever complains of pain and since we also know through doctors and other parents that NB pain is beyond excrutiating when it comes, we were very worried. Fortunately, on both occasions, the pain subsided within fifteen minutes or so and we breathed a huge sigh of relief.
Hopefully tomorrow we'll be able to start the chemo. If we get home before dark, our plan is to take everyone out in the wagon again. There's nothing funnier than watching the two little ones facing each other and licking ice cream cones, while Isabelle pulls.
Please keep the beautiful Christi and her amazing parents in your thoughts and prayers.
Thank you.
Friday, September 15, 2006 2:50 PM CDT
Hi,
Penelope did go to school for the first day last week! It was quite an achievement and she seemed quite happy to see her teachers from last year. She even volunteered answers to questions which she really never did last year.
She has not returned to school since then not because she is feeling poorly but because she stays up all night playing! She literally has been keeping Catherine up until about 3am playing (I usually pass out arond 1am!). So she is getting up around noon. Catherine and I have been spending most of our time playing with her and doing the things she likes to do...going to the park, playing with her toys in the house, picking up her big sister from school. Additionally, she loves being dragged around with her brother in a new red wagon we bought. We take them out on the pier by the water and they laugh and giggle as we go up and down hills. Catherine is taking Penelope and Oliver swimming in the pool in our apartment building as I write this.
We are so lucky that she has continued to feel well. While we know this could change VERY quickly, we recognize that it is actually humane to keep treating her at this point so that we can try to keep her feeling well for as long as possible. With that in mind we went down to CHOP (without Penelope) to speak to Dr. Maris about treatment options that wont compromise her quality of life too much. Two weeks ago we were told to "let her die with dignity". Since he always starts every meeting by asking "How is Penelope feeling?" I brought a video down from the night before showing her running through the park, going down slides, playing on the seesaw with her brother and sister. Dr. Maris said that her physical condition was "exceptional" considering her heavy disease burden and he seemed outright surprised that she is feeling as well as the video showed. Is she a little bull or what?
Dr. Maris agreed with us that since she was still feeling well it was quite reasonable to continue to try and treat her with the aim of holding off the disease for as long as possible (of course we always keep a drop of hope for more than that). We are looking into some Phase 1 investigationl trials but since they are a few weeks away (if Penelope is even eligible at that time) we will be starting a round of lower dose chemo on monday. Additionally we will continue to keep giving her the Nifurtimox which she calls "Super Penelope Power Pills" which she swallows after dipping them in sugar and then having a candy corn "chaser".
We are hoping to go to the beach this weekend before the chemo starts again. We just wanted to let everyone know that Penelope has been smiling, laughing, and pain free these past two weeks and we are very thankful for that. Please keep her in your thoughts and that she stays feeling well for as long as possible.
We would also like to mention a beautiful 9 year old girl named Christi Thomas who has been an inspiration to us. She also has neuroblastoma and is facing the most difficult of times. We pray for peace for her and her amazing parents Shayne and Angela who we have shared so much time at CHOP with over these past two years. They have inspired literally thousands of people and Christi is one of the most amazing, smart, thoughtful, courageous children we have ever met.
Anyway, we hope everyone has a nice weekend.
Catherine and John
Catherine and John
Wednesday, September 6, 2006 9:51 PM CDT
Hi,
Despite signs that her disease is progressing (rising LDH, a large node in her neck), Penelope continues to feel well and live life to the fullest. With any luck Catherine and I will actually be taking her to the first day of school tomorrow!
Her days are filled with laughter, playing games, running around with her brother and sister and soaking up life like nobody we have ever known. She is a miracle to watch, filled with courage, determination,smiles, affection, and love (to name a few qualities!). We are following her lead and trying to make the most of every day.
We were able to obtain a very experimental drug called Nifurtimox through the help of a great many friends who convinced the FDA, the Center for Disease Control, and Bayer (the manufacturer) to release this drug to us depite the fact that it is only supposed to be used for Chagas disease. We even had a doctor from the CDC drive 90 minutes to an airport in Atlanta to put the drug on a plane to New York. To see so many people work so hard to get this drug for Penelope (most of which have never met her) makes you feel good about the human spirit and we are so thankful to so many people for their efforts. While clearly this drug is a million to one shot, we are thankful that we are giving it to Penelope and doing something "outside the box" since there is nothing really left to try at this point.
Anyway, Penelope is as active as we have seen her in months so this whole experience is beyond surreal and tragic. We are taking things one day at a time and focusing on keeping all three of our kids laughing and happy. In the end, its the only thing that matters.
Catherine and John
Wednesday, August 30, 2006 8:53 PM CDT
Hi,
We will keep this short. Penelope's scan was terrible with disease everywhere. Dr. Maris believes we should be focused on letting her die with dignity. We are obviously destroyed as a family. It is even surreal given how active she is and how well she seems to feel. I think Dr. Maris would have been comfortable stopping anti-tumor therapy altogether but we convinced him to start low dose doxirubicin and try to obtain the drug Nifurtimox which is actually used for Chagas disease and one child reportedly had a response with it. Since it is only given out by the Center for Disease Control it may be hard to obtain. It is probably a million to one shot it would help her anyway but we are so frustrated by the terrible choices for our relapsed kids we figured we would try something different and hopefully non-toxic. In any event, Dr. Maris believes Penelope has weeks/maybe months.
Please keep our hero, our beautiful, courageous, smiling daughter Penelope, in your prayers in these coming weeks.
Catherine and John
P.S. The good news is we raided the Toys R Us store on the way home and brought back 8 large bags filled with toys that Oliver and Penelope are having a blast with. We will try our best to make every day filled with love, laughter and comfort.
Sunday, August 27, 2006 7:31 PM CDT
Hi,
Sorry for the late update but we got back home late on Thursday and had a nice weekend sleeping in our beds and playing a lot around the house. Penelope is in good spirits and back to her old self staying up to 2am and insisting on playing with every doll, toy, game we have. She and Oliver had lots of laughs together. They really love each other and its so nice to see. This afternoon they shared a bean bag and were both eating popsicles looking out the window and telling the other one what they were seeing.
We are back at CHOP tuesday and wednesday for scans, to see if the 2nd cycle of high dose chemo helped and to decide on what, if any, treatment plan we will pursue. We are just trying to maximize Penelope's happiness and we want to do everything we can to keep her out of pain(if only it were in our control). Right now she is feeling pretty well and for that we are grateful.
Please keep Penelope in your thoughts and prayers.
Catherine and John
Sunday, August 20, 2006 9:50 PM CDT
Hi,
Well we have landed in the ER at CHOP in Philadelphia as Penelope has spiked a fever. We drove back from the beach to NYC at 2am this morning and then down to Philadelphia this evening. Penelope is getting 3 antibiotics in the ER before they will move her to the inpatient floor where hopefully we will all go to sleep. Catherine is reading books to Penelope who has already played two hours worth of video games on my computer. We dont know how long we will stay here but suspect it will be most of the week since they will not release Penelope until she has recovered from her most recent chemo and her neutrophil count has risen.
Penelope did not want to go to the hospital at all today (does anybody?) and kept telling Catherine and I that she was "feeling all better". Unfortunately her temperature and body language were telling another story and, with no ability to fight infection, we drove down to CHOP. When I told her that we were going to the hospital to make her feel better she finally nodded and said "ok Daddy". She has had so much to deal with and is cheated of so much "normal" kid time and yet still cooperates with us.
We have spent a few days at the beach the past week (had to come back to NYC for a platelet transfusion) and the kids had a great time swimming, playing soccer, eating ice cream and popsicles, etc. We hope to spend some more time out there when we get the opportunity.
Please keep Penelope in your thoughts and prayers.
Catherine and John
Monday, August 14, 2006 10:13 AM CDT
Thank you all so very much for your kind words and priceless support.
We had a very nice weekend in NYC. We couldn't go out of town because Penelope has been constantly "accessed" since her surgery and needed daily chemo administered by a home care nurse. So we made the best of it and thoroughly enjoyed the weather. On Saturday, we went for a picnic in Central Park and played with lots of toys, met some friends, stayed in the shade, snuck in a few French fries and ice pops here and there, and then splashed around (waist down) in a mini water park. No one took any naps, but we still managed to stay up until 12:30 a.m. to watch Dragons Tales (or was it Arthur?), and to have a late night picnic on the kitchen floor. Sunday, after the chemo, we went for another picnic in the park where Oliver and Penelope learned how to play softball, ate some watermelon, splashed around some more, played "doctor" on the cats, ate lots of chicken soup, and then took a nap from 6 to 8:20 p.m, which means that we were up until 3 a.m. this morning. All of Penelope's toy cats were invited for a sleepover in our bedroom and we had to make sure that each and every one of them was fed, put in their p.j.'s, read a story to, and well tucked in.
Today, we will be going to Mt. Sinai for the last dose of chemo, a very strong one. Last time, it made her sick to her stomach right away. We're hoping that if she feels better by tonight, we'll be able to go to the beach house for 24-48 hours. After today, it will be the first time in a week that Penelope's port will be de-accessed so we would like to take advantage of some swimming opportunities, if possible. And no place better to do that than at our beach house. We're also due for some butterfly catching and hermit crab races.
We're trying to hang in there as a family. It's very, very hard. But the kids are smiling, and that's all that seems to matter at this point.
Love,
Catherine and John
Thursday, August 10, 2006 7:33 PM CDT
This entry will be brief, as we're sure you will understand.
Penelope's disease is back. The doctors basically told us that the "chances of saving her life at this point are very very remote". She had surgery yesterday for port placement (she will need medications administered to help her deal with pain when the time comes)and is having a tough time recovering from that, as well as from the cumulative effects of everything she has gone through. We are doing one last round of chemo in the hope of stabilizing her disease. That was an agonizing decision but we felt like it ultimately could give her more time.
Nevertheless, John was able to get her outside and in the car so that she could drive. And she did. Really. John was doing the pedals and she was steering. She was extremely proud to be driving around the streets of NYC. Of course, Oliver had a turn too, but he's a bit more distracted at the wheel.
Our goal is to make every day a happy one for her.
Thank you for your thoughts.
Catherine and John
Monday, July 31, 2006 11:15 PM CDT
After a sleepy and very low key sunday (most likely due to the morphine, benadryl, and cumulation of events), Penelope had a good day today. Practically overnight, her neutrophil count went from 0 to 1,032, and her blood and platelets are hanging in there. So, Penelope painted, read, played games on the computer, ate lots of blueberries, drank, laughed, jumped, tickled, was tickled, licked icing off cupcakes, got mad, sang songs, walked around, ran around, ate some more, napped, watched Lilo & Stitch, took a bath and fell asleep at an early record time of 11 p.m.
If all goes well, we hope to be back home by Wednesday night, port- and i.v.-free for the first time in almost 3 years!!!! Yeah!!!! Hopefully, we will be home for a few days until Monday or Wednesday of next week, when we have to come back in-patient for port-placement and more chemo.
We are soooooooooooooooooo looking forward to going home and seeing Oliver (Isabelle is still in California with her dad), to eating "normal" food and sleeping in a bed.
It's been a long week...
Monday, July 31, 2006 11:15 PM CDT
After a sleepy and very low key sunday (most likely due to the morphine, benadryl, and cumulation of events), Penelope had a good day today. Practically overnight, her neutrophil count went from 0 to 1,032, and her blood and platelets are hanging in there. So, Penelope painted, read, played games on the computer, ate lots of blueberries, drank, laughed, jumped, tickled, was tickled, licked icing off cupcakes, got mad, sang songs, walked around, ran around, ate some more, napped, watched Lilo & Stitch, took a bath and fell asleep at an early record time of 11 p.m.
If all goes well, we hope to be back home by Wednesday night, port- and i.v.-free for the first time in almost 3 years!!!! Yeah!!!! Hopefully, we will be home for a few days until Monday or Wednesday of next week, when we have to come back in-patient for port-placement and more chemo.
We are soooooooooooooooooo looking forward to going home and seeing Oliver (Isabelle is still in California with her dad), to eating "normal" food and sleeping in a bed.
It's been a long week...
Monday, July 31, 2006 11:15 PM CDT
After a sleepy and very low key sunday (most likely due to the morphine, benadryl, and cumulation of events), Penelope had a good day today. Practically overnight, her neutrophil count went from 0 to 1,032, and her blood and platelets are hanging in there. So, Penelope painted, read, played games on the computer, ate lots of blueberries, drank, laughed, jumped, tickled, was tickled, licked icing off cupcakes, got mad, sang songs, walked around, ran around, ate some more, napped, watched Lilo & Stitch, took a bath and fell asleep at an early record time of 11 p.m.
If all goes well, we hope to be back home by Wednesday night, port- and i.v.-free for the first time in almost 3 years!!!! Yeah!!!! Hopefully, we will be home for a few days until Monday or Wednesday of next week, when we have to come back in-patient for port-placement and more chemo.
We are soooooooooooooooooo looking forward to going home and seeing Oliver (Isabelle is still in California with her dad), to eating "normal" food and sleeping in a bed.
It's been a long week...
Sunday, July 30, 2006 7:37 AM CDT
Good morning-
Could Penelope be turning the corner just a tiny little bit? Last night, she seemed like she was up to her old tricks, having us run down the hall to the kitchen every 5 minutes up until 3:30 a.m. to get her something to eat. It wasn't much, but she did take a few bites here and there: yogurt, oatmeal, grapes, ice cream, chocolate and rice cakes. Either the mucositis is improving slightly or we've gotten better at dosing the morphine.
Yesterday was off to a rough start, though. She had to have blood drawn the conventional way. Unbeknownst to us, one cannot have blood drawn from an i.v. and she doesn't have her new port in yet. The doctors wanted to have her blood drawn at 4:30 a.m. (to give them enough time to process the labs and order blood and platelets) but we managed to have them hold off until 11 when she woke up. There's nothing more excrutiating than pinning your child down and hearing them scream and beg to have it all stopped. Her counts are still low (ANC is 0) and she will need more transfusions today.
Penelope lost all of her hair in one night. It brought us back to the very first time it all fell out, almost 3 years ago now. We remember thinking that we would miss her beautiful bald head once the fuzz had starting growing in. The sweet warm smell of her little bald head reminds us of when she was an infant. She's already annoyed by our incessant kisses so we'll just have to show some restraint.
Yesterday, we also found a new lump close to her neck, but it's hard at this point to tell if it's disease or just a "normal" node, swollen because of the infection.
Last night was Saturday night on the floor, usually when there's the most action. There were lots of sibblings of all sizes running around. Some of the kids piled into the big green plastic wagon (the one that has a caboose attached to it) and were being pulled around the ward. Bear-Bear took part in the festivities too. At times, it was hard to differentiate the patients from their brothers and sisters. That's the way it should be all the time.
Have a nice weekend everyone!
John and Catherine
Thursday, July 27, 2006 7:41 PM CDT
Penelope had her port removed today and the surgery went o.k. Never fun for a 4 year-old to be prohibited from drinking or eating 8 hours prior to surgery, to get general anaethesia and get a tube placed down her throat despite the nasty mucositis (i.e. sores thast run from her mouth to her butt), and certainly not fun to wake up in a recovery room surrounded by strange people and lights, and with an i.v. sticking out of her right hand. The i.v. will stay in her right hand (there were very specific instructions to try to get it into the right hand because she sucks her left thumb) during our stay here, which looks like it might be at least 7 more days. Despite the board that has been placed to keep her i.v. hand as motionless as possible, she managed to pile up a few Leggos and to play a short computer game using her left hand on the mouse.
But Penelope has pretty much been completely sedated or with morphine thoughout the day, the latter to help alleviate mucositis pain. She has lost most of her voice and is pretty darn tired. Our mission tonight is to try to get her to eat and drink a bit, and to get a few smiles in here and there. It might be tough as she's pretty cranky. But who wouldn't be.
Whenever we're in-patient, we often meet other families going through similar, if not the same, journey. Some of the families have just started, others have been down the road for a while now. Most of the children, regardless of which part of the world they're from, are undergoing or have undergone the same protocol, have been operated on by the same (and one and only) neuroblastoma surgeon at Sloan; their parents have spoken to the same doctors and specialists here, in New York, in California, in Texas, and elsewhere, and have completely exhausted NB research on the internet with the hope of finding a cure. You actually begin to know what cycle a child on the floor is undergoing based on the amount of times you bump into the child's parent in the laundry room: repeated loads of laundry usually indicate stem cell transplant, when germs have to be kept to an absolute minimum.
When I was waiting on line for the microwave to heat some chicken soup for Penelope, the woman in front of me was heating up what smelled like Indian food. Despite the language barrier, we shared the difficulties of getting our kids to eat during the treatments. In a desperate attempt at trying to get them to eat something, ANYTHING, we often fill our mini hospital fridges with as many different types of food as posssible, hoping that something might be appealing. She was probably wondering what I had stacked in our fridge as much as I was wondering about hers. Ice cream always seems to be the common denominator no matter what.
Penelope fell asleep early tonight at 11 p.m. That's pretty early considering her usual bedtime is between 1 and 3 a.m., and sometimes even later on the first in-patient night. Tomorrow morning, she'll probably wake up with even more mucosotis pain and certainly with less hair. She will probably be completely bald in one or two more days. We've been trying to prepare her that her hair would be getting "shorter" as a result of the "special water" used to make her feel better.
Before she fell asleep tonight, she asked: "Do you think when we go home Oliver will say 'You don't look like Penelope'?" Gosh, we didn't think of that one...
Catherine and John
Wednesday, July 26, 2006 10:02 PM CDT
The good news is that the latest round of chemo seems to have had a positive effects in that for the first time in a while, Penelope's LDH is within normal range. For Penelope, her LDH is usually a pretty good marker of the disease progession: the higher it is, the more active the disease; the lower it is, the better. Our hope is to do another round of chemo once she has fully recovered from this last one.
The not-so-good news is that we are back at the hospital. Penelope got a fever last night despite the fact that she was trying to assure us that she was fine. The fever was not a surprise since her counts were knocked out by the chemo (her ANC is now 0). After the E.R., we spent one night at Mt. Sinai. She received blood and platelets this morning, then we drove to Philadelphia to be in-patient at CHOP. Unfortunately, her blood infection is back for the third time which means that it is most likely lodged in her port. Tomorrow, she needs to have surgery to remove the current port. Once her counts are high enough, she will then have another surgery to put a new port back in. In the meantime, she'll have an i.v. placed in her arm (5,6,7 days?) so that she can continue getting antibiotics, fluids, pain medicine, etc. Her mouth sores are pretty bad now, making it painful for her to eat and drink. We started her one morphine to relieve some of the discomfort. At least now she is drinking a little more.
THe next few days are going to be tough as things will probably get worse before they start getting better. But we are right where we should be, and at the moment Penelope seems comfortable as she lounges in her hospital bed with thumb in mouth while watching Care Bear DVDs.
Thank you for thinking of her.
John and Catherine
Sunday, July 23, 2006 9:49 PM CDT
As expected, Penelope is beginning to feel the side effects of the chemotherapy. She started having mouth sores which run throughout her digestive track, making it very painful to eat and to poop. She was once told that if she eats chicken soup, it will make her feel better, so she's trying so hard to spoon some down with the hopes of not having to go to the hospital. She also knows that if she spikes a fever (which we are anticipating as well) we will be in-patient for a while, so she keeps telling us that she's feeling better and doesn't have a fever, even though we know that her temperature is rising. It's absolutely heart-breaking to hear and to watch, but it's simply amazing how brave she truly is. She is also completely wiped, complains of nausea and basically has no immune system, again, expected side-effects. So far, she's gotten one blood and one platelet transfusion (thank you thank you thank you donors!!!) and will most likely need one tomorrow. She received a shot of Neulesta (sp?)on Thursday, something which will help boost the production of white blood cells. In the past, she would have to endure nightly shots of GCSF but this new drug (not yet used on children but we managed to get some anyway) reduces the number of shots to, hopefully, one.
Despite all of this and the lovely weather that we have not been having, we all went to the Central Park Zoo this weekend (we know at this point how to handle her compromised immunity with petting zoo animals), had about five zillion ice pops, made whipped cream and vanilla pudding, watched many episodes of Dragon Tales, went down the slide a few times in the playground, and finally (FINALLY!!!) stopped the i.v. antibiotic for her blood infection. John pulled the port needle out of her chest yesterday so she was also able to enjoy a nice bubble bath with Oliver, the first in a while. Before she fell asleep tonight, she told us how happy she is that her "port" is out. For today.
The next few days will probably continue to be very difficult as the sores get worse, her counts drop and her temperature continues to rise. We have our bags packed in the event that we end up rushing to the hospital in the middle of the night.
Penelope is keeping her head up high, her feet on the ground, her smiles intact, her courage in full force and her spirits unwavering. Absolutely amazing.
Thank you for the continued kind words and thoughts.
John and Catherine
Monday, July 17, 2006 11:25 AM CDT
Hi,
We often wake up in the morning wishing that the web site had updated itself with all positive information, that overnight a cure for all incurable diseases was discovered, or that this ugly nitghmare proves to be just a long, long bad dream.
We are in-patient at CHOP and have been since last Thursday, planning on going home tomorrow (Tuesday). The night we checked in, Penenelope got her first dose of high dose chemo (a combination of Topotecan, Vincristine, and Doxirubicin) and continues to be on antibiotics to fight off the blood infection. The purpose of this chemo is to try to beat the odds and push the disease back. If we are so fortunate, we would do another high dose cycle of chemo and add an agent called cytoxin in order to completely overrun her immune system so that we might try to then treat her with a mouse antibody. If she has any immune system at all she would have an "anti-mouse" response and the purpose of the antibody would be defeated. There are many mountains to climb before we could even be in a position to try the antibody.
Additionally, starting in a few days she will experience many difficult side effects from this chemotherapy including, fever, neutropenia, mouth sores, exhaustion, vomiting, constipation, etc. We wish it would be easier for her and the decision to continue to try therapy and compromise her quality of life is the most difficult one we have ever had to make. We can only hope that we have made the right decision for Penelope. Knowing Penelope we feel that this is what she would want us to do at this point. She is a fighter with the heart of a lion.
Our stay here has been pretty good. Because the chemo is administered in the morniong and the antiobiotics every 8 hours, we actually have some "down" time during the day, and have been able to get "hall passes" to leave the hospital. We've been to some fun places, including playgrounds, bookstores and a great "touch and feel" museum.
Please keep her in your thoughts and prayers.
Catherine and John
Friday, June 30, 2006 1:59 PM CDT
Hi,
Well things have gone from bad to worse. Much worse. Penelope's MIBG scan at CHOP was terrible, the worst it has ever been with disease disseminated throughout her body. The fact that she is not in pain today is a small miracle. We have switched therapy to a combination of Avastin and Gemcitabine, two agents that have not been combined before in children with neuroblastoma. We have also doubled her dose of Vitamin C. We are certainly running out of options and we are trying to keep Penelope's quality of life as good as possible. It is so hard for Catherine and I to hold back the tears. Sometimes I can't help crying and she turns to me and says "Daddy, why are you crying?" I just tell her I am tired but something in her eyes tells me she knows what is going on and she wants everyone to be ok. We have to remember to try and make things happy and comfortable for Penelope.
As I have said before, she is the most amazing person we have ever known. There are not words to describe her courage, beauty, love for life, caring....I could go on and on.
We hope this new therapy will stabilize her rapidly progressing disease. The odds are certainly stacked way against us but Penelope has surprised us before. We just hope to maximize her happiness, laughter and time with her family and friends...and somehow let her contiunue to feel like a kid despite what is going on.
She is our hero.
Please keep her in your thoughts and prayers.
John and Catherine
Wednesday, June 28, 2006 0:42 AM CDT
Hello-
Saturday took us by surprise with a trip to the E.R. The blood culture that had been collected from Penelope via her port the day before had grown a bacteria overnight, which meant that she had an infection in her blood. As we've unfortunately been down this road before, we knew that she needed to be put on several i.v. antibiotics right away, until the bacteria could be identified and the treatment reduced to one i.v. antibiotic around the clock every eight hours.
Going to the E.R. was extremely painful as it brought back many unpleasant memories of our very first trip to that same E.R. on November 14th, 2003, when Penelope was diagnosed.
In any event, Penelope received a strong dose of antibiotics in the E.R. and we were able to convince the doctors to let us go home. The next morning, on Sunday, we received another call from the hospital. The doctor told us that we needed to come in again because the culture was growing very fast. We had to be in-patient. I think that the last time we were in-patient, Oliver was just starting to talk. One year later, as we are walking out the door with Penelope and our "hospital" bags, Oliver is crying and begging us to take him along. That was simply heart-wrenching.
Being back on P4, the pediatric floor, was like a sequence from a movie where everyone is moving in fast motion except for one charater who is moving very, very slowly. Over the past year, some nurses had gotten married, some had had babies, others had cut their hair, and others still had moved to different jobs, or switched to different shifts. Some rooms had gotten repainted, toys replaced, and maybe even some new items were added to the hospital's "menu." But I couldn't help but feel that we, on the other hand, had simply remained stuck. Stuck in time. As we exited the elevator doors to approach the registration desk, my feet started to drag and my shoulders shrugged down and low. How quickly I had reverted back to in-patient demeanor.
Today, Penelope is a different person in so many ways than she was one year ago. She is a big girl now, she can help the nurses with flushing her own port, she takes her own temperature, raises the bed and headboard by herself, lets everyone know that the food at home is better than the food at the hospital, and even pushes her i.v. pole by herself. I forget that when we were first in-patient, she knew only a few words and had just started walking. The truth is that she had learned to talk in these hospital rooms and to skip and run on these floors. And she had managed to aquire much more strength than all of us put together.
During this visit, she discovered the world of Mario Brothers games on those machines that have a pod-like screen and two consoles. I forget what they're called. Thank God for Mario as he helped us through part of the night. John and I took turns challenging Penelope to a race on the split screen. On several occasions, we saw her fierce competitive edge creep out from behind that sometimes shy exterior. A few times I was yelled at: "No, no, Mom, I am the duckie and YOU and the gorilla!!!" I guess I couldn't get my consoles straight.
Penelope was having an O.K. time with it all until she realized we were going to be in-patient. She had decided that by not falling asleep in the hospital, there was no way we would be deemed "in-patient." She eventually fell asleep at 2:45 a.m. And anyone who's ever been in a hospital overnight knows how much sleep you don't get there, even after the patient falls asleep. At the thought of spending another 9 days in-patient (the antibiotic's course is at least 10 days), John and I became delirious. Fortunately, with the help and determination of Penelope's wonderful doctor (and a large fire under the home-care provider company's butt), we managed to be discharged on Monday night, provided we continue to administer the i.v. antibiotics ourselves 3 times a day around the clock. Anything, ANYTHING, beats being in-patient. Sometimes I wonder how we ever managed to keep it together on those endless hospital stays. Clearly, we are running on a much shorter fuse these days.
Arriving home on Monday night was like coming home to a party. The relief and joy of all of us being back together and reunited under the same roof cannot be desribed.
So far, the home care has been running relatively smoothly. This evening, Penelope and Oliver were running around the house with water pistols and piling up on the beanbags, pretending to be Humpty Dumpty.
Tomorrow morning, we leave for CHOP for an MIBG injection, followed by scans on Thursday. The scans were moved up a week because of the lump we found in her neck. We will also be meeting with her doctor there to discuss "what's next."
We'll keep you posted as best we could.
John and Catherine
Wednesday, June 21, 2006 6:44 AM CDT
Hi everyone-
We hope you're all having a good summer so far. Ours started very well as we had a chance to see some wonderful friends and family at Penelope's early birthday party a couple of weeks ago. You can check out and order photos at
www.imaginationphoto.net
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Thank you all so very much for sharing that wonderful day with us, and of course for the fabulous gifts which remain sprinkled throughout the apartment.
Father's Day was nice. Penelope and Oliver made a cute cookie jar with handprints for John (Isabelle is already in L.A. with her dad). We filled it up with John's favorite chocolate chip cookies; gone in less than an afternoon. We spent the weekend at the beach house, testing out the ocean waters and looking for more crabs.
Most of our week days are spent at the hospital with daily chemo and high dose vitamin c treatments. In fact, we will be starting a new round of chemo on Monday, after having a week "off." "Off" means that we're off the chemo but we still go to the hospital three times a week for the vitamin c. Because Penelope's immunity is very low and the weather has been so hot, we've been spending some free time indoors, finger and foot painting and jumping on the bean bags. Penelope enjoys that too.
Last night, we found another lump in her clavical area. We're not sure if it's a new one, or one that has been there for a while but didn't pick up on any manual exams. Scans aren't scheduled until July 10th-11th, so needless to say, we are nervous.
As always, we appreciate your thoughts and prayers.
Stay cool.
John and Catherine
Wednesday, June 7, 2006 9:05 PM CDT
Hi,
Just wanted to say that today was Penelope's last day of school. What a triumph for her to make it through this year. We are so proud of her. Catherine and I were very emotional and we are hopeful she will be back in school in September. How she managed to got to school this year with all the treatments, hospital visits, and side effects is a testament to her courage and spirit. Words can not express how proud we are of her.
Of course as soon as school was over we went to the hospital where Penelope received two chemotherapies including taking three pills which has become very difficult suddenly as she has developed a gag reflex. It is so hard for us to feel like we are torturing her. To see the sadness and fear in her face is beyond excruciating. We hope she knows how much we love her and we hope she forgives us for all the "yucky" medicine.
She has been doing well at times while tired at other times. We have done three infusions of Vitamin C but I am convinced we need to increase the dosage significantly. We are waiting for the PK results to make that determination.
Most importantly, Penelope will be having a BIG birthday party on Sunday (even though her real birthday is July 6th) filled with pony rides, a petting zoo, carousel, photo booth, cotton candy, cupcakes, ice cream, music, etc. We went a little nuts but it should be a blast for her. Let's hope the weather is ok!
Thanks again for all the support.
Catherine and John
Tuesday, May 30, 2006 4:35 PM CDT
Hi,
Penelope will begin high dose intravenous Vitamin C tomorrow at CHOP. She will receive two Grams which we suspect will turn out to be too low a dose and we will escalate her dosage over time . We have five hours of total travelling time for a four minute infusion! Let's hope it is an uneventful day.
Penelope is feeling well these days and is very playful and thankfully pain free. She spent the whole weekend playing in the ice cold ocean or heated pool and she loved it. Her LDH, which was elevated 2 weeks ago, has come down to the normal range but we know how quickly that can change.
Anyway, I will keep the group posted about our Vitamin C experience. Thanks for all your support!
John and Catherine
Friday, May 19, 2006 9:47 AM CDT
Unfortunately, Penelope's blood results have gotten bad again and her LDH has spiked up well above normal. Not really much more to say right now. We are pretty nervous.
Thanks for your support.
John and Catherine
Monday, May 15, 2006 3:55 PM CDT
Hi,
Without getting too excited, we wanted to let everyone know that Penelope seems to be responding to the VOIT. Today is the first day of the second cycle and her counts are good. Most notably, her LDH which was at 509 at our local hospital two weeks ago is now at 254 (normal is 150 to 260). Additionally the large, hard nodes in her left neck can barely be felt at all. Not bad for one cycle of chemo! We are realistic about the situation but very thankful that Penelope is feeling so well.
We are continuing to pursue high dose Vitamin C as a therapy to be ADDED to her chemo and I think we will be starting in about two weeks. We are pushing the elephant (i.e.conventional medicine/oncologists/hospitals) uphill But I think we can see the finish line (or should I say "starting line" in sight). Still working on all the details, including whether we will be administering the vitamin C at CHOP or in New York City (please let it be New York!)
Most of all, Penelope seems to feel very well, plays all day and night, goes to school, laughs all the time, swims in the pool with her little brother, stays up to midnight like she is a freshman in college (I remind you she is three!)...and is bossy and stubborn as a kid fighting cancer needs to be. She even bathes herself these days, including running the water, putting in the bubbles, washing herself with soap, toweling off, and putting on her pajamas. If we try and help we are told in no uncertain terms "I can do it myself". That's the attitude that doesn't let cancer or chemo or hospitals or needles or scary machines get in her way. No matter what happens she keeps that fiesty, independent, fun seeking spirit alive and well. Truly an inspiration.
Well, just wanted to share a piece of good news with everyone since it has mostly been bad news we have been sharing recently. Thanks for all the warm thoughts and support.
Catheine and John
Thursday, May 11, 2006 3:52 PM CDT
Even I got tired of looking at the latest entry, so it's definately time for an update.
Penelope starts another round of VOIT on Monday morning (3 different types of chemo). We're desperately trying to figure out a way to encapsulate Irinotecan so that she can take it at home. It's a beyond-horrible-horrible tasting chemo usually administered i.v. but has been found to be more effective by mouth. We used to give it to her by mouth in a syringe but the taste now makes her throw up. We're hoping that by encapsulating it, it might be more tolerable. Of course the alternative, which we did on the last round, is to go to clinic every single day so that her port can be accessed and then she would get the chemo there. But that's really no fun, it takes alot of time especially when the playground is calling.
After much, much research, John and I have finally been able to contact a pharmaceutical company who is willing to send us all of their different types of capsule casings so that we can chose the best one to fill. Some of them are plant-based, others are chemical-based, transparent ones, oval ones, round ones, you name it. We'll be practicing all weekend until we find one that will not be too large (she'll probably need to swallow at least 3 to 4 of them, in addition to all the other pills she needs to take), that won't melt when filled with chemo, and that will dissolve before reaching her stomach. The woman who has been helping us at the pharmaceutical company -- not supposed to reveal the name of the person or the company -- has been truly incredible. Thank you so very much.
John has been making tremendous progress with his research on i.v. Vitamin C as a way to get rid of cancer cells. As it would be an alternative form of medecine never tested on in vivo neuroblastoma patients, you can imagine the red tape. If you've seen the movie "Lorenzo's Oil" with Nick Nolte and Susan Sarandon, you might get a better idea of what I am talking about.
Penelope is very lucky to have John as a father.
On another note, I took Penelope and Oliver swimming yesterday. We are fortunate enough to have a lap pool in our building. Penelope did 9 laps by herself (with a tubbie)!!! And they're long laps too! (Oliver still prefers to lounge in the hot tub.) I was hoping that all the exercise would have made for an early night, but at 1:30 a.m. we were eating salami and goat cheese in the kitchen. Go figure.
Isabelle has a school dance on Friday night. If only we could be there to watch...
Happy Mother's Day!
John and Catherine
Wednesday, May 3, 2006 7:00 PM CDT
Hi,
Well we just got back from CHOP and our fears were confirmed as Penelope's NB has progressed very aggressively. The MIBG showed disease all over her bones (too much and too depressing to list) as well as in her neck and a small amount in her skull. We knew the scan would not look good but we were hoping it had not gotten this bad. When we looked at the scan we were amazed that Penelope has not been in pain.
When we met with Dr. Maris he said that, despite the scan, he still believed Penelope was beginning to respond to the VOIT chemo. We hope he is right and there are some signs that he may be correct, including 1) her LDH has started to go down 2) her platelets have bumped up (121,000 after being as low as 90,000) 3) the nodes in her left neck which felt large, immobile and hard now feel softer, amaller and mobile. We are only one week into cycle 1 of VOIT so the plan is to do two cycles and watch her counts/LDH/nodes to evaluate if she is responding. We pray she will respond but there is no doubt this beast is back and madder than ever.
We also spoke about intravenous, high dose Vitamin C, something we have done extensive research on in the past two weeks and think might be of some benefit to Penelope (even if its a longshot). Dr. Maris is continuing to explore its merit and the potential of us starting in a few weeks. We will see. We sure hope so.
Please keep Penelope in your thoughts and prayers as she faces this monster. She is about to put on a puppet show so we must go. Thank you.
John and Catherine
Monday, May 1, 2006 11:37 PM CDT
Tomorrow (Tuesday), we return to CHOP for Penelope's MIBG injection, with scans on Wednesday. She's been back on the previous chemo treatment (VOIT) for a week now, and other than having to adjust one of the daily oral chemos (the "yucky" medecine) to a daily i.v chemo (which makes for daily visits to the hospital), Penelope is tolerating everything well.
This weekend was our first at the beach house in a while. All three kids had a great time making castles, pies and cookies in the sand; Oliver even walked into the bay fully clothed, while Penelope and Isabelle watched and laughed hysterically.
Please keep her in your thoughts over the next few days. And send lots of positive vibes.
Catherine and John
Saturday, April 22, 2006 9:46 AM CDT
Penelope's neuroblastoma markers have been increasing which indicates that her disease is progressing and that Fenretinide is not working for her. Her platelet count has dropped, sujesting that the disease is back in her bone marrow as well. We have decided to go back to the previous treatment consisting of daily oral chemo and weekly I.V. chemo(Ironotecan/Temodor/Vincristin). Our hope is that she will respond to it as well as she did last time.
We have not yet told her that we will be starting the "yucky medecine" on Monday, and that there will be continued hair loss, among other side effects.
After a full breaskfast of oatmeal with lots of maple syrup, though, she is very happily chewing gum and playing with Oliver.
We continue to have strength and hope for many fun-filled days ahead.
Have a nice weekend everyone.
John and Catherine
Wednesday, April 19, 2006 7:58 PM CDT
Unfortunately Penelope's LDH, a marker for her disease, has become quite elevated again. After speaking with Dr. Maris, we have decided to keep trying Fenretinide for another cycle and then do scans in three weeks. We are pretty uncomfortable about the situation and will be watching Penelope closely. If her blood tests get worse we will probably scan her sooner and change treatments. This disease is so awful.
The good news is Penelope seems to be feeling well and enjoying each day...she doesn't miss a beat.
Please keep her in your thoughts and prayers.
John and Catherine
Wednesday, April 19, 2006 0:55 AM CDT
Hi,
We are heading down to Philadelphia in a few hours. NOt surprisingly I can't sleep! We have a big group going down tomorrow including Penelope (no kidding!), Catherine, Oliver, Wilma, me and my Dad. If everything goes according to plan we will restart the Fenretinide and then have six hours of blood draws before we can come home. Penelope whispered in my ear that she wants to go to the toy store down there so that will surely be one activity to keep us busy! I really hope we can continue on Fenretinide because it is so wonderful from a "quality of life" standpoint for Penelope. It will depend on what her blood counts look like and whether her LDH (a marker for disease) remains elevated or is normal. It jumped a few weeks ago but was hopefully due to the effect of the medication and not her disease becoming more active but we should have a better sense tomorrow.
Penelope has been feeling very well these days. She is as active, happy, playful and hungry as I have seen her in a very long time. She and Oliver play more together than ever and their laughing and squealing fills the house constantly. She has been going to school regularly and gaining confidence with her peers. The teachers say she participates more and more. Her mouth is pain free and getting her teeth fixed/pulled was one of the best decisions Catherine and I have made. She loves to eat "hard" food now and say "Daddy, guess what, my teeth don't hurt anymore". It sounds funny to say, but those words are music to my ears.
Well I have tons of pictures I will try to put on her other website soon ( www.penelopelondon.com ).
We hope everyone is doing well and thanks again for keeping Penelope in your thoughts and prayers.
Catherine and John
Thursday, April 13, 2006 3:41 PM CDT
Honestly, I don't know what's more amazing...the amount of food that Penelope is now consuming because her teeth don't hurt anymore, or the fact that she never complained about the pain in the past. She actually says: "Look!!! I can eat broccoli and my teeth don't hurt!!!" It's heartbreaking, yet positively heartwarming at the same time.
Penelope is doing well. This week was a treat in that, with the exception of a short trip to the local clinic on Monday, we have not had to go out of town. It is like a mini vacation for everyone.
The Easter Bunny has also been busy making numerous surprise guest appearances, and with the weather getting nicer and it staying lighter out later, sometimes it actually feels that Life is o.k. for today.
Next Wednesday, we head back to Philadelphia to start the second cycle of Fenretinide for 7 days, and we'll take it from there.
Happy and healthy holidays to everyone!
Catherine and John
Tuesday, April 4, 2006 9:19 PM CDT
Hi everyone-
The dental procedure on friday went well. Penelope had general anaesthesia to have 6 teeth pulled (the four top ones and two back bottom molars that were completely infected), 5 cavities filled, and two silver caps (a.k.a. "sparkly teeth") put on. She was extraordinary in that after the procedure, she never complained of pain once. In fact, a few days later, she is finding it much more enjoyable and pain free to eat (probably for the first time in a while), despite all the missing teeth. It makes my heart sick to know that there must have been times when she was turning down food because she was in too much pain to eat. We see it now as she gobbles down hard pretzels and manages to crunch them on what she has left. Amazing.
Sunday night, big sister Isabelle came back from France. Despite the time change and jetlag, everyone managed to stay up really really late having fun and catching up.
Monday, school started again after a two week break. All the kids, including Penelope, seemed very happy to be back. It was probably the gooey lime-green playdo they made, 'cause we don't make anything nearly as fun as that at our house!
Today, we were at CHOP all day for the every-two-hour-blood-monitoring thing. Somehow, John was able to get us there despite the rain and the fact that it was six in the morning, and got us back home at about eight tonight. He did all the driving (thank you!), managed to conduct some business from the hospital, and kept it together when Penelope suddenly broke out in a rash all over her body. For a moment we thought it was chicken pox, which would have been a nightmare. Thankfully, after a few hours, the spots started to fade. Who knows what it was.
Penelope has finished her first round of Fenretinide today. Her blood counts are dropping, and her liver functions have skyrocketed, which always makes us nervous. She gets two weeks off, then we start again for seven days. And so it goes. Scans are planned for after the second round and the blood monitoring are over.
The great news is that we don't have to go to Philadelphia for two whole weeks. It's not that we don't love the people there, it's that we now know all the highway billboards by heart, and the food at the cafeteria gets kind of tedious. Yes, even the King Kones.
All in all, Penelope is doing well and is happy. She thinks the Tooth Fairy lives with us now, since she's been over so many times.
Thanks for reading the update.
Catherine and John
Thursday, March 30, 2006 12:38 AM CST
Before I get into what happened at CHOP yesterday, I need to share an exquisite moment. For the past 4-5 days, Penelope has been sleeping without Bear-Bear. She now puts Bear-Bear to sleep in a very comfy bed next to ours. It takes her about 30 minutes to get her (Bear-Bear is a she and a mother of one) to go to bed as the nightlight and blanket situation needs to be just right. Anyway, for those of you who know Penelope personally, not sleeping with Bear-Bear is a REALLY BIG DEAL. As John was assisting Penelope last night in tucking Bear-Bear into bed, he asked her something to the effect of whether or not she realizes that Bear-Bear sleeping in a different bed means Bear-Bear will not be sleeping next to her, to which she replied: "That's o.k., as long as I know where she is."
Yesterday we started Penelope on Fenretinide. We got up very early in the morning and drove to Philadelphia, this time taking Oliver and Wilma (our babysitter) with us, which was -- dare I say? -- really fun. Oliver has never been to Philadelphia before, and up until yesterday, he has always imagined it as a place that takes "Mommy, Daddy and Pipi" away from him, so it was wonderful for him to spend the day there with his sister.
We checked in, Penelope had her blood taken and we gave her a dose of medicine. Fenretinide is bright yellow and granular, and needs to be mixed in with Slim Fast. It doesn't disolve, so I imagine that it's kind of like drinking sand. John (who tastes all of Penelope's meds) said that it wasn't so bad compared to alot of the other stuff she's had to take. (Personally, I can't stomach the smell of Slim Fast.) Anyway, after some convincing, Penelope ingested the Fenretinide, and then her blood counts needed to be monitored every 2 hours for 6 times after that to make sure that the toxicity level of the drug isn't too high. Penelope is the first patient to receive this new elevated dose of Ferentinide so the doctors need to make sure that it's not too much for her system to handle. We had 2 hour intervals in between each blood draw and tried to make the best of them. We managed to escape the hospital for a bit and took the kids to the "Please Touch Me" museum nearby which has a miniature supermarket and farm for kids to play in. (Need I say more?) We also got to meet the "other" parent of patients whom we have started to know over the years, and it's always nice to put a face on a name. And the kids received wonderful gifts from a tremendous "friend of experience."
Right before the last blood draw, we were in the waiting room waiting for the nurse. It was after hours, so the place was completely deserted. Fortunately, we found one of those big plastic wagons and pulled Oliver and Penelope around the whole floor. I have never seen such sincere and intense belly-laughs in my life!
Tomorrow (or tonight? we don't know yet. It depends on the time of the procedure, which we won't know until later this afternoon), we are going back to CHOP for Penelope's dental procedure. Although John and I are extremely apprehensive about the after effects of the procedure, we both feel comfortable with the fact that it's the right thing to do.
Isabelle comes home from Paris on Sunday. The intensity of the atmosphere will shift to someting else, but the desire to make the most of every single moment never dissipates.
All the best,
John and Catherine
Monday, March 27, 2006 9:36 AM CST
Hello,
We spent an anxious weekend waiting for test results and were rewarded this morning with a call from Pat Brophy, the wonderful nurse practitioner at CHOP, with the beautiful words "her scans were negative". In the world of cancer, negative is a GOOD thing! What this means is that as far as we know Penelope has some "spots" of disease which we already knew about from the MIBG scan two weeks ago, but thankfully her bone marrow and CT scan performed last week showed no evidence of disease. In addition, we were practically shocked to learn that the tumor sitting on the dura of her brain also disappeared. In sum, Penelope has had a pretty amazing response to the two doses of experimental chemotherapy she started seven weeks ago. Although we know what the "statistics" are for relapsed neuroblastoma, we also know that today is a good day and for that we are incredibly thankful!
Our next plan is to go to CHOP on wednesday to start a new oral chemo powder called Fenretinide. Then on Friday we will be back at CHOP for Penelope to finally get her dental surgery in which at least six teeth will be removed. Another set of hurdles for our hero.
We have to say a few words about Penelope's courage last week in Philadelphia. She endured being NPO for two nights and mornings, blood tests, physical exams, needle biopsies in her pelvis for bone marrow biopsies, anasthesia, Echocardiogram, EKG and a full body CT scan.
She was valiant through all of it but the CT scan was truly something. Basically, we opted not to use sedation because of the toll it takes on Penelope. This meant that they put her in a full body and head immobilizer as they slid her inside a giant circular scanner while infrared lights were projected onto her face as a noising, swirling machine scanned her over 40 minutes. After 20 minutes she was getting quite scared and began crying so we took a break, not knowing if or how we would get her to resume. Catherine read her a book and when she was finished we had a conversation with her about why we needed to go back in the room. After saying "not yet" a few times I could see her collect herself, look me in the eyes and say "Ok I'm ready now". She stopped crying, let us put her back in the machine and finish the exam. She did not shed another tear and when she was finished everyone in the room received high fives (actually I think it might have been fist pounds). Its awful to have to make your 3 year old go through that sort of experience but it is also inspiring beyond words to see her courage.
We thank everyone for their support and love this past week and we will keep everyone updated on our next visits to Philadelphia.
Catherine and John
Wednesday, March 22, 2006 2:34 PM CST
Hello-
Tomorrow morning early we leave for CHOP until Friday afternoon. The purpose of the trip is to do various scans and procedures (bone marrow aspirates, CT scan, EKG, etc.) to have a baseline to work with when (and if) we start the new treatment next week. The tests will also give us an idea as to where the disease is at this point, and if it has changed significantly since the last tests. Some of the procedures require general anaesthesia, some not; and some require swallowing large quantities of contrast liquid and not being allowed to eat or drink for extended periods of time. Basically, it's going to be a stressful 48 hours. We were unable to schedule the dental procedure for the same time, so we'll have to do that next week.
The new medication is called Fenretinide and is very experimental. So far, there are only a handful of patients who are taking it. There is no significant data out there to show what its success rate is (or really what the side effects are), but we have to try something. Up until very recently, children Penelope's age were not even eligible for Fenretinide because it required swallowing 30 pills a day. But somehow, they have come up with a way to make it in powder form. To be ingested, the powder (a significant amount) can ONLY be mixed with Slim Fast Meals, which is beyond ironic because Slim Fast is an appetite suppressant (a "diet" drink, so to speak) and we're always so desperately trying to get Penelope to eat. Oy. Hopefully, Penelope won't mind the taste too much.
As you can imagine, the next few days are going to be tough, especially on Penelope. We'll keep you updated as best we can.
But for today, Penelope is happy and smiling. She had a really nice playdate with her friend Morgan this morning and is now napping to recover from all of the activity. Along with her brother Oliver, she has also discovered "Hello Kitty" DVDs, which means that for now, Sponge Bob and Dora are getting a much needed rest. Phewww...
Catherine and John
Thursday, March 16, 2006 1:05 PM CST
Hello-
The news from Philadelphia was pretty good. Penelope's scan cleared up considerably with the exception of two spots on her thighs, a faint spot in the pelvic area and one on the neck. The doctor was nevertheless impressed with the results after just two rounds of Irinotecan and Temedor.
Despite the fact that this treatment seems to work, we hope to be moving to another one because if we continue on the same, the disease might get used to it and begin to build up reserves to strike back. We are therefore keeping it in our back pocket for future use.
Next week, we plan on going back to CHOP to deal with the brutal dental procedures that had to be postponed several weeks ago, and to find out if Penelope's counts are "normal" enough to move onto a different therapy.
Thank you for your support in thoughts and prayers.
Catherine and John
Monday, March 13, 2006 11:51 AM CST
Hi,
Well tomorrow we go to CHOP where Penelope will be injected for an MIBG scan on Tuesday morning and have the scan itself on wednesday morning. Then on Friday she will have a brain scan back in New York. So, it goes without saying that we are just a little anxious.
Now for the good news. Penelope and the kids had a great weekend. Oliver and Penelope had a great playdate with Morgan (from Penelope's class) and her little brother. They had pizza, ran around the house, went out on their bikes and played in the park. It was really fun. Yesterday, Catherine and I had more kids over and we all went swimming at the gym in our building. Oliver and Penelope loved it. Penelope was pretending she was a dolphin and Oliver, after screaming his lungs out in the beginning, did not want to leave the pool area in the end. When he began to look like a prune and I told him we should leave the pool he just kept repeating the phrase "one minute Dad!" I had to laugh. They were quite proud of themselves. Then yesterday afternoon I took Isabelle to a Ranger game (her new passion and one of my old passions). We had a blast. Finally, Penelope is the "helper of the day" at school today where she gets to lead all the lines and turn out the lights and make announcements like "five minutes to clean up time!" She is having a great day which she deserves considering the week ahead for her.
Please keep Penelope in your thoughts and prayers this week.
Thank you.
John and Catherine
Tuesday, March 7, 2006 1:54 PM CST
Hello everyone-
Not a whole lot to report except that Penelope is finishing her second cycle of chemotherapy today (Irinotecan, Temedor and Vincristin). Her blood counts are o.k. and she is in great spirits. "Orange Day" at school was a very big hit, especially with the orange popcorn and orange face painting (thank you Cara and Christy!). She can't wait to see what tomorrow's "Green Day" has in store for the class. We'll be bringing some pickles.
Oliver has managed to lock himself inside his own bedroom (alone) which added a bit of spice to the day, and Isabelle is greatly looking forward to her trip to Paris next Friday with her grandmother. Charlotte The Cat is eating for two.
But next week is going to be a tough one...
Scans on Tuesday and Wednesday at CHOP, then a brain scan with anaesthesia on Friday the 17th at Mt. Sinai. I hate hate hate the days with anaesthesia because Penelope cannot eat or drink for 8 hours before the procedure, and I'm afraid she will go into hypoglycemic "shock" like she did last time.
Next week's results will help us determine what to do next. As you can imagine, stress and anxiety levels will be high.
Please continue to keep her in your thoughts.
Catherine
Wednesday, March 1, 2006 12:11 AM CST
Hello everyone-
Penelope is in the middle of her second cycle of chemo (vincristin, temodor, irinotecan) and we are scheduled to go back to CHOP in Philadelphia on March 14th and 15th for some more scans. Despite the fact that she has started to lose her hair as a result of the teatment, she seems fine and happy, but perhaps a bit tired. Her latest urine test showed low levels of cathecolamine, which is a good thing.
Her big sister Isabelle just turned 12, so there have been a lot of festivities at our house, birthday cake as often as possible, and deflated helium balloons everywhere. Oliver is also doing very well, talking up a storm and bossing everyone around.
On a sad note, we had to put our very sick 3-year old cat to sleep last week. It was extremely difficult emotionally because one couldn't help but consider the symbolism: Cheshire came to our house shortly after Penelope was born. Her illness was very serious and very sudden. Penelope now thinks that Cheshire is on vacation. Thank goodness our other cat, Charlotte, seems to be doing well. And to top it all off, our Japanese fighting fish, Cedric, fluttered his fin for the last time yesterday.
But we're hanging in there. For right now, anyway.
Please don't forget to check out the photos at www.penelopelondon.com
I hope everyone is well.
Catherine
Tuesday, February 21, 2006 7:36 PM CST
Hi,
Just want to let everyone know that I have downloaded lots of photos to Penelope's new photo website at www.penelopelondon.com I admit I got a bit carried away!
John
Monday, February 20, 2006 9:44 AM CST
Hi,
I wanted to let everyone know that Penelope completed her first cycle of vincristine,oral irinotecan and temador. She handled it well and her diarrhea was minimal (a bad side effect of the irinotecan). Her LDH levels and liver enzymes have come down but are still outside the normal range. She is generally feeling very well and continues to soak up each day and live it to the fullest.
Last night in New York it was sub-zero and she insisted we go get ice cream. There was no saying "no". So we bundled up and went to the market and bought ice cream cones which I put in a bag until we walked back home (about 6 freezing blocks). Not good enough. She had a fit and insisted on eating the ice cream on the way home, sitting on my shoulders with freezing 60 mph winds in our face. When we got home I was numb. I put her down from my shoulders and saw a big smile covered with frozen ice cream. She has more guts than anyone I know.
Our plan is to do one more cycle of the vinc/irino/temador and than scan her down at CHOP and then make a further treatmnent decision at that point. I hope this stuff is helping.
If anyone is interested we have started a site with just photos of Penelope. Because I am a dummy at downloading photos to the site there are presently only two pictures. The site is www.penelopelondon.com . Please ignore the stuff on the other pages...I still have to clean it up! I will be adding more pictures in the next week. Hope all is well with everyone!
John
Sunday, February 12, 2006 5:48 PM CST
Hi,
Sometimes it is just too hard to describe what life is like for my family. The last two weeks have been one of those periods. So rather than dwell on that, I just want to let people know that Penelope is generally feeling well today, she is more playful than the previous few days and , thankfully, she is in no pain. We are trying to do all we can to keep her happy and playful despite trips to the hospital, taking chemotherapy, being stuck with needles, lying in big scary machines, etc. She is an amazing, resilient, courageous and beautiful girl and cancer will never strip her of those qualities.
We are hoping the chemo slows down/reverses this horrible disease. We recognize that the odds are not even worth mentioning but we keep telling ourselves that everday is a good day for Penelope and we are blessed to be with her.
Take care. Please keep her in your thoughts and prayers.
John
Saturday, February 11, 2006 3:44 PM CST
An MRI scan revealed that there is a tumor and tumor-like prongs emanating from the skull and pressing against the brain, which is somewhat of a relief as opposed to the tumor penetrating directly into the brain. We are planning on continuing the oral daily chemo with weekly i.v doses of vincristine.
Off to the clinic on Monday.
Today, carrots with ranch dressing seemed to go good.
Tuesday, February 7, 2006 10:24 PM CST
Most likely this is an inappropriate entry, so I want to apologize ahead of time to John, to our immediate and extended families, and to our friends.
But sometimes the rules don't seem to apply or exist anymore.
Maybe this is a cyberspace equivalent to opening the window wide -- very, very wide -- and screaming from the top of my lungs "I'm as mad as he** and I'm not going to take it anymore." But doing that from the 49th floor is not very safe. Not for anyone I suppose.
Yesterday, Monday: a fairly typical day for Penelope, with the exception of the latter part.
Morning:
- first dose of bactrim, an antibiotic to help prevent pneumonia (pill crushed and mixed into chocolate milk)
- thyroid medication to compensate for thyroid damaged by previous rounds of extensive radiation therapy (pill crushed and mixed with chocolate milk)
- antibiotic to work in conjunction with oral chemotherapy (liquid mixed in with Diet Coke)
- anti-diarrheal medication to counteract side effects of chemo (pill crushed and mixed with something)
- anti-nausea medication for chemotherapy (pill taken with pineapple juice)
- 3 chemo pills larger than Tylenol caplets to be taken whole. They cannot be crushed, broken or chewed.
- no more eating or drinking because of test later on in the day
Late Morning:
- visit to clinic, physical exam, access to port with needle through chest to draw vials of blood for blood count monitoring. Port flushed and taped up for future access.
- while waiting for results, i.v. placed in hand for injection of dye for brain scan
Early Afternoon:
- switch floors to radiology
- dye injected, head and body mobilized in scanner, and subsequent brain scan; i.v. flushed
- return to clinic; i.v. from hand removed; blood counts are back and far from great
- administration of third chemo through chest port; port flushed and finally de-accessed
- reports of brain scan are back and they're not good either
Late Afternoon:
- on the way home, stop by a toy store while listening to parents' frenetic but timely cell-phone discussions with doctors about what to do next
- arrive home, some of the toys work; some don't
Early Evening:
- administer oral chemo directly from a syringe into the mouth. The most vial substance known to all of humanity.
- fever spikes to 101.4, accompanied by ear aches
Late Evening:
- ongoing telephone conversations with the doctors as to whether or not we should go to the E.R. and check in. A high fever could mean a possible blood infection through the port, an infection which in Penelope's case could be fatal.
- the fever brakes slightly so we decide to stay home
- second daily dose of antibiotic to help prevent pneumonia (pill crushed and mixed in chocolate milk).
Through all of this, where does one put all the anger? Where does one put pain, frustration, confusion, incomprehension, suffering and unfairness? Where does all the sadness go? Where is the strength supposed to come from?
But, most important, through all of this, HOW does one so precious manage to be a "normal" 3 year old kid, to be a teasing big sister to a devilish little brother, or an admiring little sister to the big, big sister? How does she manage to enjoy bubble baths as though she's slicing through a sumptuous chocolate layered cake she's about to devour? How does she continue to laugh so hard that everyone cracks up just from listening to her laughter? Or scream so loud when she can't get the tights on her baby dolls that the cats hide in fear?
That is where the strength MUST come from.
It's a bit after midnight, and this was much better than opening the window.
Catherine
Wednesday, February 1, 2006 8:48 PM CST
We just got back from Philadelphia with terrible news. Penelope's disease has returned and it is widespread throughout her precious body. We are completely devestated and trying hard to keep it together for her. We will start her on 2 new oral chemos in the next few days and we are praying it will slow down the disease. We are lost and without words, especially for Penelope and Oliver and Isabelle.
Please keep her in your prayers. We really need a miracle at this point.
Catherine and John
Monday, January 30, 2006 5:15 PM CST
Hi,
We are going to keep this short because we are tired and the news is not good. Penelope's LDH, an indicator for cancer, has gone up dramatically. We are rushing down to Philadelphia tomorrow for tests on Tuesday and Wednesday. We have great fear that her cancer has returned but we are trying to stay positive. Please pray for our beautiful, courageous, inspirational and heroic girl.Thank you.
Catherine and John
Monday, January 16, 2006 2:41 PM CST
Hi,
Well we are overdue for an update on Penelope (it has been a month). We started with Christmas vacation for the kids and a quick (five day) trip to Atlantis. We had 7 adults and 6 kids. Everyone had a blast. I will update with some pictures soon. It already seems like years ago!
Penelope seems to be feeling well and aside from some clinginess is generally in good spirits. Unfortunately, one of her blood tests called LDH has been rising of late. We are hoping it is due from the combination of chemo and an antibiotic she took to help get rid of an infection. The good news is we just tested her urine and it was normal.
On Friday we are moving to a new apartment that should give us all some more room (we have been packed in tight for three years). We visited the place today and the kids seemed to love it. They were running around and laughing the whole time. Next week we will be back to Philadelphia where Penelope will need oral surgery and probably require about 5 or 6 teeth to be pulled. They were ruined from all the cancer treatments. It is awful but we will deal with it.
Anyway, there is crying in the background so I must go. Hope everyone is well and we will post again soon!
John
Thursday, December 15, 2005 3:30 PM CST
Hi,
We just wanted to share a piece of good news with everyone. Penelope had an MIBG scan at CHOP yesterday and according to Dr. Maris "it is normal". She has no evidence of disease. As many of you know, Penelope has been battling relapse since January and she has had some previous scans that were difficult to interpret. So when we got the news yesterday we were stunned and incredibly grateful. She is a "bull" that just keeps moving forward.
She will continue on ABT-751 and we will go back to CHOP for a pysical exam in 6 weeks and more scans in 12 weeks. Penelope is feeling really well and going to school and laughing all the time. We are taking our first vacation in what feels like forever (going to Atlantis with a group of 6 adults and 7 kids) and Penelope can't wait. It will make us so happy to see those kids playing for five days.
Unfortunately, we also visited the dentist who said that many of Penelope's teeth have basically rotted away from all the treatment and she will need surgery and probably have to get the top four teeth and some of the molars pulled (they will try to do baby root canals but are not optimistic they will be able to save a lot of teeth). Just another obstacle for her to overcome.
We have to say that going to CHOP gets harder and harder emotionally. Yesterday we were in a small play room at the clinic and could not help overhearing a nurse talk to a young (maybe 10 or 11), beautiful, healthy looking girl. She had just been told she relapsed and they were telling her that they wanted to put in a broviac. When she asked why she needed a broviac, the nurse responded "it is so you can get chemo and pain medication at the same time". Her expression never changed and she just went back to coloring her book. We don't know how these kids do it. Their courage is the most amazing thing we have ever seen. When will we find a cure?
We hope everyone has a happy, healthy holiday season. Thanks for all your prayers and positive thoughts for Penelope.
John and Catherine
Wednesday, December 7, 2005 7:32 PM CST
A few days ago, Penelope finished her fifth treatment of experimental oral chemotherapy. She continues to be doing well despite a cold that all three children are having a hard time getting rid of.
On December 12th and 13th, we will be back at the Children's Hospital of Philadelphia for another post-chemo scan and various other procedures.
We will keep you posted.
...did somebody say 18 days until Christmas??!!???
Sunday, November 20, 2005 5:08 PM CST
Hi,
I just wanted to share a piece of good news with the group. We got Penelope's catecholomines back on Friday and her HVA and VMA were both normal (these are markers for Neuroblastoma). This is the first time they have been totally normal since she relapsed at the beginning of the year. This is just one data point, but it was a good one and we will take every little victory that comes Penelope's way.
I also have to say that two years ago this week was the most difficult week of my life, and Catherine's life, and Isabelle's life. On November 14th 2003, Penelope was rushed to the emergency room and diagnosed with neuroblastoma and four days later on November 18th our son Oliver was born. I was spending my time running between the oncology ward and the maternity ward. I can't describe how difficult that time was for our family and in some ways I would rather not think about it at all, but on these "anniversaries" it is hard to escape the series of memories and flashbacks that pop into our head.
We had no idea how brutally difficult the next two years would be for everyone. Catherine and I often ask how have we all survived? Because we did not have a choice is the first answer that comes to mind. But also because Penelope's courage, joy, and stubborness in the face of this disease has cleared a path for us all to travel down. She is a wonder.
Although we certainly don't know what the future holds, I can say that on Friday we celebrated Oliver's 2nd birthday and Penelope stood right next to him and helped him blow out the candles. It was a beautiful sight for Catherine and I to see. I can't think of a better gift for two very tired parents than that.
All my best to everyone.
John
Monday, November 7, 2005 7:22 PM CST
THANK GOD Penelope's liver functions lowered enough so that we could continue the ABT therapy on a smaller dose for the next cycle!!! It was just too soon to contemplate the human antibody treatment, which is a treatment "down the road" that is very difficult and will involve staying in an Intensive Care Unit one week a month for four months.
Isabelle gave her the ABT tonight with some chocolate syrup. It's just amazing how she is able to swallow these 3 horse-size pills (no breaking them, no chewing them)without complaining.
Everyone is doing great at school. Oliver turns two in 11 days. Wow, how time flies!
We hope everyone is well.
John and Catherine
P.S. We added some new photos on the photo page.
Thursday, November 3, 2005 4:56 PM CST
Hi,
Well we just got back from CHOP and unfortunately the news was not perfect. Basically, Penelope had an MIBG scan which now showed a "tiny" spot in the area where she had previously relapsed. The rest of the scan remained clean. Dr. Maris was actually confused about how to interpret this result. We probably would have been very excited about this result if not for the fact that Penelope's scan was clean three weeks ago (which was a surprise at that time). Dr. Maris said it is unclear whether this tiny spot represents disease progression or whether the spot was actually there 3 weeks ago but due to a slightly different technique it did not show up. Also,Dr. Maris commented that she may have received more of the isotope this time because the whole image appeared brighter than 3 weeks ago. He also said that the size of the spot is so small that he doesn't know if it is active disease or possibly the benign ganglioneuroma.
So in sum, we dont know if Penelope's disease has progressed or if it is unchanged AND we dont know if it is active or dead. The plan now is to restart her on ABT once her liver enzymes get lower (hopefully next week), do 2 cycles and re-scan her in six weeks.
I guess the good news is that if there is something going on it is very tiny and we are on top of it. I usually try not to get too optimistic about these things but I tend to believe the scan 3 weeks ago was not as precise as today's scan and I am hopeful this tiny spot is just the benign remains of all the treatment. Please keep Penelope in your thoughts.
John
Thursday, October 27, 2005 3:07 PM CDT
Hi everyone,
Penelope is doing well, loving life and school, but we had to discontinue her second round of ABT due to very high liver function numbers in her blood count. The doctors believe the high numbers are probably a result of the ABT combined with some residual side-effects of the second MIBG treatment. It's been about a week since we stopped giving her the daily dosage and her liver counts are fortunately coming back down. Slowly.
Next Tuesday and Wednesday we will be at CHOP in Philadelphia for another set of scans. We are hoping to start Penelope on a lower dose of ABT, one which hopefully won't cause quite as much toxicity as the first.
If you come across Tinkerbell, a honey pot with bees on his head, and a five foot three Goofy over the weekend or on Halloween, please remember that Mom and Dad could use some sweets too, especially anything milk chocolate!
Happy Halloween!!
Friday, October 14, 2005 3:49 AM CDT
Hi,
Well we have a piece of good news today. Penelope's MIBG scan showed no evidence of disease!!! The spot in her head is totally gone. I was watching the scan results myself and could not believe it. I kept waiting for the area in her skull to light up and it never did. And everything else looked normal.
To say we are grateful today is a huge understatement. I was trying to prepare myself for very different news (the truth is we can never prepare ourselves for bad news). It just goes to show that for those of us whose kids or spouses are battling this monster called relapsed neuroblastoma that we are allowed to have a piece of good news. It is possible. And I know that there is "no cure" for relapsed NB but today we are thrilled that Penelope has gotten to this point.
We will start the second cycle of ABT today (if we can get her to take the pills again!). Hopefully she will continue to tolerate it reasonably well.
I want to thank everyone for their support and kind words the past few days. It is very meaningful to hear such kindness when it is the night before your daughter's scans and it is 3am and your heart won't stop racing.
Lastly, I just want to say that when you go to CHOP and sit in the oncology clinic and see all the beautiful children battling this monster it is so hard, so sad and so maddening. These kids are all heros. Every one of them. The angels and the warriors. Being around these kids, their courage, their hope, their playfulness...it changes you forever. I just want to see the day when we cure this beast for all of them.
John and Catherine
Monday, October 10, 2005 8:15 AM CDT
In the last 48 hours, Penelope has absolutely, definately, positively wanted to be a bumble bee, Sandy (the squirrel from Sponge Bob), a snake, Cedric the Fish, and a grown-up for Halloween. Oliver remains consistent as "Boots" from "Dora the Explorer" -- not that he has that much say in the matter -- and the jury is still out as to whether or not Isabelle will go as anyone other than her beautiful self.
We are taking Penelope to Philadelphia this week for scans, and to figure out if we should continue the experimental oral chemotherapy. As always, we are very apprehensive about the scan results, despite the fact that Penelope seems to be doing well and that her counts are hanging in there. Please keep her in your thoughts and prayers.
Thank you!
Thursday, October 6, 2005 3:51 AM CDT
Hi,
It has been a little while since we updated the site. Just wanted to let everyone know that Penelope is feeling well and really enjoying herself. She loves school and talks about it often although the early start and long days are sometimes a bit much for her. She usually hits her stride post-nap in the afternoon and of course is full of energy when the rest of us are ready for sleep!
She had her first play date ever two days ago with a girl from her class named Lauren. Rumor has it they rode every horse at the Central Park carousel. Yesterday she spent the day at her grandma Alice's apartment with her big sister Isabelle where, among other things, they baked cupcakes for Penelope's class. I want to say that Isabelle has been the most wonderful big sister anyone could imagine. Penelope and Oliver adore her and Isabelle's love and patience and playfulness with them is truly a joy to watch. While our situation has been so difficult, I can only imagine how hard this must all be for Isabelle. But she is wonderfully positive, helpful, thoughtful and emotionally mature far beyond her years. She does not even realize how much she gives us strength to continue on.
Penelope's liver tests have remained elevated and an area for "close watching" although the doctors (in New York and Philadelphia) believe the most likely culprit is that it is a side effect of treatment rather than disease. Penelope has finished her first cycle of a Phase 1 oral chemotherapy called ABT-751 which she has tolerated very well. Amazingly, she was able to swallow four large pills a day which she was not allowed to chew. She would dip them in chocolate syrup, put them on her tongue, takeabout 30 seconds to position the pill in the right place, and then swallow. When she finished she would beam with pride. We are so proud of her and for her willingness and courage to do all these scary and uncomfortable thing and to keep a smile on her face every day. Next Wednesday and Thursday we will be back in Philadelphia to do a scan to check the status of her disease and to pick up the next cycle of ABT-751.
Please keep her in your thoughts and prayers.
Catherine and John
Thursday, September 22, 2005 2:46 AM CDT
Just a quick update since it is late. Penelope is doing well and really enjoying school which has become a safe (and fun) haven for her. It is so rewarding to see her playing and laughing with other children.
Today (in abou 5 hours) we will leave to Philadelphia to hopefully start the next treatment. I say hopefully because her liver tests reamain elevated which could potentially delay us from starting the treatment. It is an oral chemo which requires Penelope to swallow capsules (she cannot chew them or break them up)..Many of you can imagine how difficult this is for a 3 year old. The ggood news is that she has been practicing with spearmint tictacs which she rolls in chocolate syrup and swallows with no problem. In fact, she thinks it is so much fun she begs me foir more! sHE IS amazing!
Otherwise, we are all hanging in there with Isabelle enjoying school (and track and fielsd) and Oliver running around like the Energizer bunny.
Please keep Penelope in your thoughts that she qulifies for this next treatment and does not have any serious side effects (always a significant risk with a Phase 1 medication like this). Thank you.
Take care
John
Tuesday, September 13, 2005 1:13 PM CDT
Hi,
We apologize for not updating sooner but it has taken a while to get the final results of her scans back. Generally, the doctors were very pleased with Penelope's scan results. Specifically, her bone marrow and CT were both clear of disease and the MIBG (the most sensitive test) showed improvement from the last scan with only a very mild uptake in her skull (the rest was clear of disease). They are not sure whether this represents a minimal amount of remaining disease or scar tissue from the bone healing. So all in all we were very happy with penelope's scan results.
Unfortunately, some of her blood results are still a little out of whack and we don't have a great explanation but the doctors do not seem too worried given her excellent scan results. We will keep an eye on them.
We go to Philadelphia tomorrow to talk to the doctors about Penelope's next treatment steps. We are hoping to do something that will not affect Penelope's counts or quality of life in any significant way. She has already been through so much.
Also, Penelope has finished her third day of school and she is really beginning to love it. It is a joy to see her in a classroom and fills us with so much pride to see how far she has come despite all the hurdles she has had to leap. We will try and post some photos in the next few days (once we catch our breath!)
Finally, Penelope has gotten to the point where she needs almost no transfusions. This will be the first week she does not get blood or platelets. We are so thankful for this and thank you to all you generous donors!
Take care.
John and Catherine
Thursday, September 8, 2005 8:16 AM CDT
Hi,
As Catherine mentioned in her note yesterday, emotions are running high. While certainly tomorrow (scan day) is scary beyond words, today is a day of triumph for Penelope. This is the first day of school for Penelope. For Penelope to make it to this day, when so many obstacles stood in her way, is a testament to her courage, determination and love of life. I only hope Catherine and I will be able to keep it together today because it is so meaningful to us to see her reach this day. Obviously, we hope this is just the beginning of many, many fun filled school days. We will be sure to take and post many photographs of the day!
As Catherine also mentioned, some of Penelope's liver tests have become abnormally elevated. While there may be several possible explanations for this, we are naturally petrified at one of the possibilities. Please keep Penelope in your thoughts and prayers on Friday as she gets her scans.
Thank you for your love and support.
P.S. I wish you all coud see Penelope now as she is getting ready for school by strrumming on a guitar and singing " I'm gonna be a big girl soon"
Wednesday, September 7, 2005 2:22 PM CDT
Emotions are running high for so many reasons this week...
Both Isabelle and Penelope start school tomorrow: Isabelle (6th grade), a full day; and Penelope (3's program), one hour. And Oliver will have ALL THE TOYS TO HIMSELF in the morning for the first time ever!!! We met with all the teachers in the last two days, and we couldn't have asked for a better bunch.
After Penelope's day at school, we then have to go to the clinic for blood counts before the procedures/scans scheduled for Friday. The day on Friday will start at 6:30 a.m. -- approximately 6 hours after Penelope finally agrees to go to sleep -- and it's going to be a very long day, with anaesthesia and what not. Yuck.
Penelope's last counts have shown abnormally high levels for her liver functions, something which the doctors are trying to figure out. Her hemoglobin and platelets are coming down a bit, but at a much slower pace since the stem cell transplant kicked in.
The next set of scans weighs heavily on us. We are hoping that the last treatment in Philadelphia had a positive impact. We are praying for clean scans because we have essentially run out of treatment options, even trial ones at this point.
John and I are very much looking forward to meeting Penelope's college advisor.
Much love to everyone.
Monday, August 29, 2005 5:07 PM CDT
Hi,
Just wanted to give everyone a quick update. Penelope is doing well and enjoying summer. We just got back from the beach where she and Oliver have spent enough time in the pool to officially be classified as fish. They both really love it there and we have been trying to spend as many "long" weekends there as possible. But the best part of the weekend, without a doubt, is that Isabelle came back from her summer in California. She had a great time with her Dad, stepmom and brother. Penelope and Oliver were so thrilled to see her and could not stop referring to her by her various nicknames, including "BaBa" and "Izzzzzyyyy!!!". It was also a great pickup for Catherine and I to see her and have her back home.
Penelope continues to need transfusions but thankfully they are starting to be a little less often. We think her reinfused stem cells are really starting to kick in and help her fight infection.
On an exciting note, Catherine and I went to school to meet with Penelope's teachers today. If all goes well she will start school in 10 days. We know that at the very least she will only be a "part-time student" (due to transfusions, treatment, scans, etc.) but we think the experience will be wonderful for her. Unfortunately, Penelope has spent almost all her time with adults due to her illness (i.e. doctors, nurses, family). We think she will love being around other three year olds and we hope that school will be a place that feels fun and safe for her. She deserves that kind of experience.
Of course the day after her first day of school she will have to miss because she will be getting a full set of scans (a week from Friday). Please keep her in your thoughts and prayers that she gets good results.
We hope everyone is having a nice, relaxing summer.
Monday, August 22, 2005 5:48 PM CDT
Monday is one of the clinic days and....
NO TRANSFUSIONS TODAY!!! YEAH!!!!!
Penelope is doing great. We're hoping that her counts are hanging in there because the stem cells are grafting. That would minimize the number of transfusions, which would be fantastic.
We are very very very much hoping that Penelope will start school at Calhoun (where her sister is a 6th grader) on September 8th. Think positive thoughts.
And one day at a time.....
Thursday, August 18, 2005 2:06 AM CDT
It must be something about the nightly GCSF injections and the fact that Penelope's counts are all over the map that is making her so wired at night.
We finished watching Disney's "Dinosaurs" for the second time tonight. The time posted for this entry is 2:06 a.m., but it's actually 3:06 a.m., and I can hear from the active thumb sucking sounds behind me that Penelope is (finally!) almost asleep.
But maybe Penelope is just a phenomenal night owl, like her dad. And her big sister.
Back to the clinic on friday for more transfusions. Since Penelope was exposed to chicken pox, she must remain in isolation when we go to the clinic, which makes for very looooooong days because the room is pretty small and there's only so many times you can watch the same DVD over and over and over again. But as long as Penelope has her Minute Maid Frozen Lemonade, she's always the incredible trooper.
Monday, August 15, 2005 5:56 AM CDT
A somewhat uneventful weekend is always a good weekend for us! Penelope got some really nice Pippi Longstocking clothes that one of her grandmothers brought back from Sweden. Her absolute favorite is the T-shirt where Pippi is carrying a horse.
Today, we return to the clinic for more transfusions. A relatively "light" week (thank goodness!!) with no scans, no transplants, no radiation; just the usual blood tests, transfusions, G shots, and oral meds. (I can't believe I used "usual" and "transfusion" in the same sentence.)
From this past sunday's Philadelphia Enquirer: an article about the extraordinary Alex Scott, her lemonade stand and the money she helped raise for neuroblastoma research. The article also mentions Penelope and John.
http://www.philly.com/mld/inquirer/news/local/12376848.htm
Everyone is doing well, although we all miss Isabelle who has been in California for the summer. Come home soon!
Friday, August 12, 2005 2:04 PM CDT
Thank goodness, the stem cell transplant went smoothly yesterday. We were back in clinic today for a platelet tansfusion.
Penelope is doing great. She is looking forward to collecting some more hermit crabs this weekend, and then setting them free again.
We're trying to add new pictures to the site, but our technology is not yet up to speed. So keep checking...
Have a nice weekend everyone!
Wednesday, August 10, 2005 9:54 AM CDT
Tomorrow, Penelope will be getting her second stem cell transplant; the first one was a year ago this past May. Before any of this happened, I used to imagine a stem cell or bone marrow transplant was like a kidney or a heart transplant. Actually the procedure itself is pretty quick, about 5 minutes. It literally involves injecting stem cells cased in a large syringe back into the bloodstream. What is time consuming is hydration before the injection (4 hours) and monitoring of vital signs every fifteen minutes or so after the injection for about 3-4 hours to make sure there is no immediate adverse reaction.
It takes about 10 to 14 days for the cells to "graft." It then takes a few weeks more for their effects to be felt and for Penelope's counts to start going back up on their own. Until then, she will remain transfusion and GCSF shot-dependant, about 5 or 6 weeks.
Although the procedure is fairly straightforward, like all procedures, it carries substantial risks. What if she gets an allergic reaction during the transplant? What if her body rejects her own stem cells and the stem cells don't graft? What if the stem cells that are being reinfused into her body are contaminated with disease, like they were at diagnosis? We're doing our best to bannish these scenarios from our heads.
It's going to be a long day at the hospital tomorrow, so any positive vibes sent our way will be greatly appreciated.
On another note, Penelope is doing well and is as happy and playful as always. Her new passion now is helping to clean out the fish bowl. She loves the part where she gets to catch Cedric The Orignal with her bare hands to put him into a temporary home while his is being rinsed out.
As I am writing this, the phone rings. I have learned to hold my breath whenever a "241" exchange appears on "Incoming Calls" because it is the hospital's.
When Penelope was in clinic on Monday for platelets and blood, she was inadvertently exposed to a child who has since developped chicken pox. Because Penelope is immuno-compromised, chicken pox can become a deadly disease for her. As a result, before the transplant tomorrow, she needs to get a pseudo chicken pox vaccine, and needs to be in isolation for the next 3 weeks whenever we go to clinic.
But I guess you gotta do what you gotta do. And she is such an amazing fighter!!
Please keep her in your thoughts tomorrow!
Thanks.
Tuesday, August 2, 2005 4:51 PM CDT
We have a new addition to the family. His name is Cedric.
Cedric comes on the tail of Penelope seing a fabulous IMAX movie at the Museum of Natural History, a movie about the sea and its many creatures.
Cedric is a Japanese Fighting Fish. He is strong, stubborn, and determined. He'll fit right in with the rest of us.
Penelope had blood and platelet transfusions yesterday, and she's expected to get them again on Thursday. She is happy but a little tired post-treatment, and the disgusting drops that she gets every four hours seems to be affecting her appetite. So we have six small birthday cakes tonight. Hopefully, one of them will be enticing to her.
Saturday, July 30, 2005 1:47 PM CDT
We're back.
In record time, Penelope cleared enough radioactivity from her system that we were able to come home earlier than expected. Always a treat.
We are keeping Oliver and Penelope separated for a while (he is at the beach house enjoying the pool) until her levels of radioactivity are more "tolerable."
Needless to say, John and I are EXTREMELY relieved to have the treatment (and the difficult decision leading up to it) behind us. Penelope is doing well, playing with her birds and making some concoction for dinner. The tough side effects of the treatment won't really kick in for another couple of weeks, but we will hopefully pre-empt some of the harshness when she gets her stem cells back in 10 days.
Living and appreciating each moment at a time takes a while to get used to, but it also makes for some very colorful and interestingly intense days. Sometimes the gamut of emotions that we experience in one day is greater than what we used to feel in a year, if that makes any sense at all.
Monday, we go back to the clinic for more blood and platelet transfusions. Thank you again so much to each and every one of you who have helped with facilitating that process.
Please keep on writing your entries. They mean very much to us.
Thursday, July 28, 2005 6:29 PM CDT
Excrutiating is having to sit outside your child's hospital room (and desperately looking for distractions--like updating a web site) because the amount of radiation you've been exposed to is already too high for your own safety, while your child is in the room receiving and emitting the ultra high doses of radioactivity you're been told to stay away from.
Unfathomable is not knowing if the radioactive treatment itself is going to make any difference at all.
Today has certainly been -- and continues to be -- one of the hardest days for so many reasons: second-guessing ourselves, things going wrong, miscommunications, misunderstandings, despite all the best intentions on everyone's part.
I walked down the long hall to get to the Family Lounge so that I could make some popcorn. The journey felt like an eternity as I passed by so many rooms filled with so many sick children stricken with inexcusable forms of cancer, and so many families immersed in sadness yet surviving on Hope.
If we could just bottle this Hope, and bottle the courage of these children, we would be pretty close to becoming eternally happy and possibly immortal.
Penelope is asleep after a very rough day. She is on a constant Verset drip which, when she is awake, makes SpongeBob look like Orlando Bloom, or even Brigitte Bardot for that matter.
We hope to be out of here soon...
Wednesday, July 27, 2005 3:54 PM CDT
Although Penelope's response to the last treatment was good, today's scans in Philadelphia show that she still has active disease in her skull. It's been a very agonizing decision for us, but we've decided to go ahead with a second MIBG treatment, starting tomorrow morning, followed by a stem cell transplant 2 weeks later.
But let's talk about the good stuff...
Penelope is doing great. We took her to her first movie yesterday (in between appointments with doctors)and she absolutely loved it. She sat so quietly for two hours, munching on her popcorn and candy, in total awe of the penguins in "Madagascar." At one point, when I looked over, I saw her and John sipping their sodas at the very same time. It was too funny. Then, we went to one of those photo booths and had a blast posing for goofy pictures.
Anyway, please keep Penelope in your thoughts tomorrow and over the next few weeks with the hope that everything goes smoothly.
Bye for now.
Tuesday, July 26, 2005 6:28 AM CDT
In just a few hours, we'll be headed towards Philadelphia. With rabit foot and four-leaf clover in hand, we are looking for a miracle: that the scans will come back clean, that we don't have to go ahead with the treatment and that we'll be back in New York on Wednesday night.
On a seperate note, Penelope has now asked us to give her the nightly GCSF shots in her arm instead of her leg. She carefully watches the needle as it punctures her skin, and the syringe as it releases the medication.
Not a cry, not a flintch, not a peep.
Incredible.
Wednesday, July 20, 2005 11:49 AM CDT
Hi,
Just a note to let everyone know that we are presently planning to go to Philadelphia next Tuesday and potentially do another MIBG treatment. Our schedule is to go down on Tuesday where Penelope will get an infusion for a detailed scan which will be done on Wednesday. Depending on the results of that scan (i.e. if there is still detectable disease which is very likely), we will do another MIBG treatment on Thursday. If all goes well, we will be able to leave after the weekend.
This is obviously a big and very difficult decision for us. Although the first treatment worked very well for Penelope, there is no guarantee that the second treatment will add anything and we know there are significant risk factors, including an increased risk of developing a second cancer, long term bone marrow suppression that will mean she will be blood and platelet transfusion dependent for a very long time, risk of serious infection, diminished quality of life, etc. Additionally, if we do the MIBG treatment, Penelope will definitely need a bone marrow transplant (i.e. stem cells) 10 days after her infusion.
Anyway, we are all trying to take things one day at a time and enjoy the moment. Penelope is truly flourishing, happy and loving life, her family and all her other caregivers. She is, as always, the greatest inspiration imaginable.
On a separate topic, I am attaching a link to an article in The USA Today that talks about MIBG treatment, quotes Penelope's great doctor in Philadelphia Dr. Maris, and highlights the huge lack of money and effort being spent on childhood cancer. To this end, we remind everybody about The Penelope London Fund which has been designed to fund research towards curing neuroblastoma. You can find the mailing details above if you are so inclined.
The link to the article is:
http://www.usatoday.com/news/health/2005-07-19-children-cancer x.htm
I have pasted the full text of the article below:
Who's fighting cancer in kids?
By Liz Szabo, USA TODAY
Fourteen-year-old Max Levine owes his life to experimental cancer therapies. Yet a drug that helped keep him alive might never reach the market.
Cancer survivor Deonzelow Watson, 3, has his face painted at a picnic for CHILD Cancer Fund in Florida on Tuesday.
The Florida Times-Union
University pharmacists mix the medication, called 131I-MIBG, for patients who have no other options, says his doctor, John Maris, an associate professor at The Children's Hospital of Philadelphia. Max's disease — neuroblastoma, a tumor of the nervous system — afflicts just 650 children a year and is too rare to attract drug developers, Maris says. The tumor, like all childhood cancers, is considered an "orphan" disease.
"If our trial is successful, and we prove this drug cures patients, there is no guarantee that anyone is going to make it," Maris says. "We could say, 'We've proved this drug works, but we don't have any.' " (Related story: Kids' cancer drugs run short)
Maris is one of many doctors who are frustrated by the lack of interest in developing drugs for young cancer patients. A government report in April found a "near absence" of research into pediatric cancer drugs. About half of the oncology drugs used to treat children are at least 20 years old, according to the report by the Institute of Medicine, a non-profit group that advises the government on health policy.
Most drugs given to children were developed for adults, then passed down to children. In the past 10 years, only one cancer drug, Clolar, has received initial approval for children.
Stephen Sallan, chief of staff at Dana-Farber Cancer Institute in Boston, says adults attract more cancer research than children because they are a far larger and more lucrative market. Patients younger than 20 make up 12,400 of the nearly 1.4 million Americans stricken with cancer each year. Drug companies are generally unwilling to invest hundreds of millions of dollars into such a small market, he says.
Why adults instead of kids
Drug companies say there are sound reasons to focus on adults. Susan Desmond-Hellman, president of product development at Genentech, says she's compelled by the opportunity to help large numbers of patients. Not only does cancer strike far more adults, but their disease is less curable: 64% of adult cancer patients can be cured, compared with 80% of kids.
Organizing clinical trials for children also is difficult, Desmond-Hellman says. Because doctors are reluctant to try experimental drugs in kids who might be cured by standard ones, only a fraction of pediatric patients are eligible for early clinical trials. Enrolling enough kids to test a new drug can take years.
There are financial risks, as well. Companies typically invest more than 10 years and $800 million to bring new medicines to market, according to the Tufts Center for the Study of Drug Development.
Companies fear that if problems surface during pediatric trials, an otherwise promising drug might never be approved at all, even in adults. "It's a big risk for a small reward," Sallan says.
Because new, patented drugs are the most profitable, relatively few companies are interested in the older, generic drugs on which young patients depend, says Mary Relling, pharmaceutical department chair at St. Jude Children's Research Hospital in Memphis.
Production problems at one plant can disrupt the entire supply of a drug. Recently, doctors have struggled with shortages of at least five key oncology drugs. In one case, some children have had to go without a leukemia drug.
Doctors such as Sallan say they don't want to give up on children with cancer, who have perhaps more to lose from the disease than other patients. Young survivors pay a high price, their bodies scorched for up to three years with therapies so toxic that many are left permanently disabled.
New "targeted" therapies, which mostly spare patients from the ravages of conventional chemotherapy, might allow young survivors to lead normal, healthy lives, Sallan says. These breakthrough drugs are being tested almost exclusively in adults, however. Only one, Gleevec, has been tested in children and approved for their use.
Targeted drugs developed for adults might not help children, says Mitchell Cairo, chief of pediatric hematology and bone-marrow transplantation at the Morgan Stanley Children's Hospital at Columbia University.
Chemotherapy works for all ages because the drugs act broadly, poisoning growing cells — healthy and malignant — throughout the body. Today's "smart drugs" target only cells with particular genes, Cairo says. But the genes targeted in common adult cancers may not be the same ones that drive pediatric tumors. And targeted therapies often work for only a fraction of patients with particular types of cancer, which could shrink the market even further.
Maris says what children really need are drugs designed just for them.
The Food and Drug Administration has created a number of incentives to encourage companies to make pediatric drugs.
Through its orphan drug program, the FDA awarded Genzyme seven years to sell Clolar without competition from generics. Because Genzyme tested the drug in children, the FDA extended that exclusivity by six months. The FDA also gave Clolar "accelerated approval" in December, based on a study of 49 patients.
Yet such incentives haven't done enough to promote new pediatric drugs, according to the IOM report. Businesses have no incentive to test drugs in children early, because they receive the same benefits if they conduct trials before or after approval, the report concludes.
"There's a reason these drugs haven't gone forward," says David Parkinson, who collaborated on the report and heads the oncology development at Amgen. "They cost more to develop than they will potentially earn."
Promising strategies
Some doctors say they're starting to see progress. Researchers are testing more than 20 targeted therapies in children, says Malcolm Smith, associate branch chief of pediatrics for the National Cancer Institute's cancer therapy evaluation program. Several medications such as Velcade, Rituxan and Iressa already have been on the market for adults for several years. Many doctors would like to see drugs tested in children earlier.
That's why the NCI recently created a program to screen 10 to 15 promising drugs in the lab against common pediatric tumors.
Advances in molecular biology also may help. At Dana-Farber, scientists enroll patients in studies based on the biology of their tumors, not on their age, Sallan says. Doctors are planning to test a drug in adults and children with a type of leukemia.
St. Jude has launched a $10 million effort to begin testing drugs earlier. The hospital's director, William Evans, hopes industry eventually will collaborate with St. Jude, which recently opened a drug-making facility, to develop new therapies.
More coordination is needed
While such steps are encouraging, they are still far too rare, Parkinson says.
He suggests a more systematic approach: Government, university scientists, industry leaders and patient advocates could form a "public-private partnership" to jump-start drug development. Through this kind of partnership, biotech firms might share their "libraries" of experimental compounds, Parkinson says.
The NCI could help coordinate trials, and companies could keep the right to sell successful products. The partnership, acting like a non-profit corporation, could shepherd drugs through the approval process, then commercialize them.
"We will need someone to drive this process, to say, 'Our mission is to develop new cancer drugs for children,' " says Peter Adamson, an editor of the IOM report and chairman of the developmental therapeutics program of the Children's Oncology Group, a national research consortium. In the case of abandoned drugs, the IOM report calls on the NCI to step in as "developer of last resort."
Families say they are willing to do their part. Nearly half of child cancer patients participate in NCI-sponsored clinical trials, compared with only about 4% of adults, Smith says.
Max's mother, Sue Levine, says she's counting on scientists to come up with new drugs. Experimental therapies have given Max two years. Although 131I-MIBG stopped working after six months, it kept the Cherry Hill, N.J., boy alive long enough to become eligible for another experimental drug, which has controlled his cancer for a year and a half.
"The fact that my son is here playing with his GameBoy is a miracle," Levine says. "If my son can give these doctors some knowledge, he's willing to try it."
Monday, July 18, 2005 4:28 AM CDT
Penelope is currently sleeping diagonally across our bed, hogging all the space, so what better time to write an update...
The weekend was delicious despite the weather, with Penelope and Oliver running around in circles and giggling with their cousins. We jumped waves, decorated sand patties, looked for shrimp and hermit crabs, and got really upset when we couldn't find any beatles to catch.
Today will be another clinic day. We're so hoping that her counts are starting to come up on their own.
Apparently, when you see a Praying Mantis, it's good luck. We saw three this weekend.
Wednesday, July 13, 2005 3:00 PM CDT
"Radiation is bad. Neuroblastoma is worse." (Dr. John Maris, Oncologist, Children's Hospital in Philadelphia)
These were the words that kept resonating in my head as John and I headed back to NYC from our appointment with Dr. Maris at CHOP.
It looks like Bear-Bear (the original one that has been in solitary confinement for detox since her first MIBG treatment in May) will be coming out of the closet for a second round.
Because Penelope's response to her first MIBG treatment was so positive, we have tentatively decided to do a second one on July 29th (it will depend partly on whether her blood counts rise to certain minimum levels in the next week...if they don't we will have to give her a stem cell transplant next week and will no longer be eligible for another MIBG treatment). Boy, that sounds so much easier on paper than it does in reality! Anyway,complete remission after a second treatment is rare, but it happens, and that's what we'll be hoping for. Shortly after the second treatment, Penelope will have another stem cell transplant to help boost her counts.
In light of all of this, we are recruiting additional blood and platelet donors. Penelope is currently receiving an average of 2 blood and 2 platelet donations a week, and after the second MIBG, she'll need at least that much for, well....quite a while.
Neither John nor I are qualified to give blood. The criteria is pretty strict, as it is for platelets. If you are willing to donate (it takes about 1/2 hour for blood and 2 hours for platelets, but by appointment only) and think you can meet the criteria (check out the New York Blood Donor site at http://www.nybloodcenter.org/framesets/FS-1B.htm), then please contact Carol Bale who is in charge of keeping track of all donations. Her work number is (212) 588-6601 and her e-mail address is carolb@suttonbrook.com. She'll send you an info sheet and head you in the right direction. She's totally awesome. F.Y.I., you need to be A Positive for platelets and A or O for blood.
On a much lighter note, Penelope continues to do well despite her very low counts. In her usual form, she has been staying up until 1:00 a.m., enjoying the wide variety of frozen goods in the freezer department. After transfusion tomorrow, we are hoping to go to the beach to look for some more horseshoe crabs. Or to just hang ten.
Thanks again for all the support!
Tuesday, July 5, 2005 12:59 AM CDT
Hi everyone,
Well we have some good news to report! Penelope's scans showed that she had a very good response to the MIBG therapy in Phialdelphia!! The most sensitive test showed that the disease in her neck had totally disappeared and the disease in her skull had "decreased significantly". It was an amazing thing to watch the tests and visibly see the difference. We recognize that relapsed neuroblastoma is considered "uncurable" but we are just thankful that Penelope continues to battle against this monster and enjoy her life to the fullest.
Penelope has been through so much, and Friday was no exception. She had blood drawn in the morning, then received anesthesia for her scans, she was under for two hours while she had a CT scan and MIBG scan. After she woke up, we learned she needed a blood and a platelet transfusion. At the end of the day (really night!) she was running a fever and had an accelerated heart beat so we had to stay overnight in the hospital. The doctors were worried she had an infection but Penelope rebounded the next morning, we were discharged, and we went to the beach where Penelope (and the rest of us) had a great weekend. The highlight was watching Penelope find a ladybug (which she loves) then delicately put it on her finger where it crawled up and down her arm for 20 minutes. She couldn't stop smiling!
Penelope continues to need blood and platelet transfusions and her ability to fight infection is still near zero. We also need to consult with the doctors in New York and Philadelphia about next treatment steps. Another big decision awaits. In the meantime, we are so thankful that our last decision turned out to be the right one for Penelope. She continues to amaze us every day. Have we mentioned that she is our hero?
We are trying to catch our breath and enjoy a little bit of summer. Thanks to everyone for their blood, platelets, love, support and hope. We are lucky to have such great friends and family who literally have given Penelope parts of their body and soul!
Talk to you soon.
Catherine and John
P.S. We will be updating some of the photos soon so keep an eye out for them!
Tuesday, June 28, 2005 6:39 AM CDT
This morning, Penelope is scheduled for her first scan (in a series of three over the course of the week) since her MIBG treatment in Philadelphia. It's going to be a long week and an especially long weekend since we won't get final results until after the Holiday weekend (probably on July 5th, the day before Penelope's 3rd birthday).
But Penelope is doing well and had a nice weekend with her sibblings. She helped rescue about a dozen horse shoe crabs who were washed up on the sand and couldn't get back into the bay on their own. She also saved a few miserable bugs from an ugly fate in the pool. Her curls are getting lighter and her smile wider every day.
We'll keep you posted.
Tuesday, June 21, 2005 2:35 PM CDT
One thing we've learned through all of this is that we have absolutely no control over the fastforward, instant replay, or pause buttons; so when each frame goes by, and when it's a good one, we tend to hold onto it for as long as we can.
Sunday, Father's Day, Penelope convinced John for one last swim before heading back home. In they went.
With Oliver on my hip and Isabelle on my mind, I was busy doing "stuff" in the house when something in the pool caught my eye. I stopped in my tracks, like someone was pulling me from the back of my collar, and looked out. And there they were...like father, like daughter...splashing around and giggling in front of a spectacular sunset. The jury is still out as to whom had the more colorful bathing suit.
Unfortunately, tonight we start giving Penelope her nightly GCSF shots once again, until her white blood cells are able to recover on their own. Thursday, we return to the clinic for probable transfusions. But this is all expected post MIBG treatment in Philadelphia.
In a week from today, Penelope will get her first of a series on three scans since the treatment almost 6 weeks ago. Needless to say, the anxiety is building... Please keep her in your thoughts and prayers.
We hope everyone is well and enjoying their summer.
Thursday, June 16, 2005 11:17 AM CDT
Hi,
Just a quick story about how much we all love our kids. Last night Catherine and I took Penelope to a party at the Central Park Zoo. Penelope, after 2 helpings of cotton candy, decided she had to have an "ice pop". When we arrived at the Good Humor truck Penelope was set on 1 type of treat...The Bomb Pop. Unfortunately, the woman working at the truck informed me that she had 1 Bomb Pop but it was way too frozen to eat. I attempted to interest Penelope in an ice cream sandwich but she would have no part of it. "Bomb Pop Daddy..Bomb Pop Daddy!". Ok, no problem. I asked the woman for the Bomb Pop and in my infinite wisdom decided I would just lick the top half of it so it would begin to defrost. Well two seconds later I had my tongue and lips stuck to the Bomb Pop. Have you ever seen the scene in Dumb and Dumber when Jeff Daniels gets his tongue stuck on the chair lift when skiing? Well suffice it to say, he has nothing on me. Several minutes later I was able to separate myself from the Bomb Pop...the bleeding, however, did not stop for 2 hours. What we do for our kids!!!
Anyway, Penelope is feeling well and very playful. We go to the clinic tomorrow where she will probably need platelets (and maybe blood). Then we will go to the beach for the weekend where Penelope will continue to train for the 2024 Olympic swimming team!
Have a nice weekend!
Friday, June 10, 2005 5:04 PM CDT
Hello everyone,
Yesterday was a loooooooong day for Penelope as she needed a platelet and a blood transfusion, and we were in the clinic for 8 or 9 hours. (Now that her blood has developped antibodies as a result of multiple transfusions, it takes much longer to "prepare" the blood. But Kind Donors please note: it DOES NOT mean you should cut down on M&M intake before donating...)
Penelope is doing great today. I took her on one of the rides at the mini amusement park at Wollman rink, and she absolutely adored it! We are looking forward to escaping the heat this weekend and going to the beach.
Have a nice and cool weekend everybody!
p.s. thank you for all the new entries. They always make us smile.
Wednesday, June 8, 2005 12:20 AM CDT
Hi everyone,
Just wanted to let everyone know that Penelope is very happy and enjoying each day to the maximum. Although we are expecting her to need blood and platelet transfusions as a result of the MIBG treatment in Philadelphia, it has been over three weeks since her infusion and she has not needed one yet. However, based on the trend of her recent counts, we expect she will need transfusions tomorrow. So thanks to everyone who has donated blood and platelets!!!
Penelope had a great achievement this weekend. For the first time since her diagnosis in November 2003 Penelope got in the pool and swam!!!!! And she loved it!!! You could see the pride on her face as she held on to a float and said "look at me...I'm swimming!" I was so happy for her.
In general Penelope seems to be feeling well and is full of energy. She swims, plays on every swing and slide in the New York City/Westhampton city limits, eats tons of ice cream, paints pictures, reads (memorizes) books, calls pretend friends on her pretend cell phone, plays/wrestles with her brother Oliver, has pillow fights with her Dad, plays with Catherine's hair, worships her big sister Isabelle...I could go on. Catherine and Isabelle and all of our family members and friends do so much to fill her life with joy and in turn she fills the room with her smiles and laughter.
In about 2 to 3 weeks we will scan Penelope to see if the treatment has helped to reduce her tumor burden. Depending on the results, Catherine and I will face more decisions about her treatment options. We are so thankful that we have wonderful oncologists to lean on for these impossible decisions.
Anyway, just wanted to let everyone know that we are all hanging in there. Please say a prayer/think positive thoughts for Penelope with her scans upcoming. Thank you!
Friday, June 3, 2005 10:15 AM CDT
Penelope is doing o.k., her counts are still hanging in there, and her spirits are great. Unfortunately, we just found out that she has a thyroid problem, most likely the result of radiation and MIBG therapy. She is hypothyroidic, which means that she could be feeling tired and weak, and just plain yucky. We saw a fantastic endocrinologist (Dr. Larson) who reassured us that it is a very treatable condition with a small, daily pill. We just don't know yet if it's a long term or short term condition.
After we left the doctor, we went to a supermarket around the corner to buy bagels and gumballs, and Penelope insisted on paying. Before handing the bill to the cashier, Penelope started talking about Mr. Krabs (from Spongebob) who is obsessed with money. So of course, everyone on line got to hear about the episode in which Mr. Krabs loses his millionth dollar because it gets eaten by a giant clam, how Sqwidward and Spongebob end up tied to a mast on a boat and that they're crying, and how Mr. Krabs goes nuts, and how the big giant clam returns so Mr. Krabs manages to get his millionth dollar back but ends up losing a few claws in the process.
I guess the cashier had already seen the episode because she got pretty impatient and ended up grabbing the money out of Penelope's hand. Itcould have been worse; she could have grabbed the gumballs instead.
Have a nice weekend and thanks again for all the Spongebob stuff.
Wednesday, May 25, 2005 3:42 PM CDT
Penelope is doing well. We are closely monitoring her counts and counting down the days until the next set of scans (5 weeks from now) which will tell us if there was success with the MIBG treatment. She is currently on medication to help preserve her thyroid from the treatment. It used to be one drop every 4 hours, now it's one drop every day. I had a taste of it (again) in the kitchen the other night, and I almost threw up. Boy oh boy, the strength these kids have; it's truly amazing.
Happy Memorial Day Weekend to all!
Thursday, May 19, 2005 12:20 AM CDT
Hello,
We are back from Philadelphia!!!! Penelope set the record for quickest time from infusion to discharge (only 28 hours!!!). She is truly amazing. Her radiation levels got to the magic number "7" so we were able to leave. Also, Penelope tolerated the treatment very well and we are glad we kept her sedated so she would remain in the lead enclosed bed and forget about the discomfort created by the catheter.
Catherine (doing her best Hercules impression), who basically stayed up 2 nights straight, is trying to finally get some rest. I am just thankful to have some strong women in the family!
For now Penelope will have to go to the clinic twice a week to check her blood counts will will drop in a few weeks. We will be giving daily oral medications (that taste horrible) to protect her thyroid and soon have to start her on GMCSF shots (to stimulate her white blood cell and protect against infection). If her counts stay down for too long we will have to give her another stem cell transplant but hopefully this will not be the case. In 6 weeks we will scan her again to figure out what her disease status is. Of course, we will face more treatment decisions at that point.
For now, we are happy to have the 6 weeks without treatments and we hope/pray Penelope will continue to feel well.
Thanks for everyone's support during this time!
John
Tuesday, May 17, 2005 4:35 PM CDT
Hi,
Just a quick note. Penelope just finished her MIBG infusion. She also had a catheter placed earlier today. She tolerated both procedures well. We now have to wait for her radiation levels to come down. It should take several days. She stays in a lead enclosed bed. She is cranky but in general doing as well as we could expect. She is amazing.
one day when Catherine and I get the energy we will better describe this surreal experience. One thing I can say is that CHOP is an incredible hospital and they are taking great care of Penelope.
Bye for now.
Friday, May 13, 2005 8:25 AM CDT
Hi everyone-
We have decided to try the 131 I-MIBG radioactive treatment offered by CHOP, the Children's Hospital in Philadelphia. Of course, the goal is to get rid of residual disease and to get Penelope back into remission. We are leaving Monday morning and expected back on Thursday or Friday, if all goes well, which it will. From what we know, it's going to be a tough week though. If you have any interest in finding out more about the treatment, here's the link:
http://stokes.chop.edu/programs/marislab/MIBG.pdf
Otherwise, things are O.K. We are looking forward to spending a fun weekend at out beach house, most likely in the rain. As usual, Penelope is full of energy, love, laughter, bossiness, hope, humor, and strength. Her brother and sister try to keep up with her level of activity. We've pretty much abdicated the remote to her after we go to sleep. She seems hooked on late-night TV.
Thank you again for all your posts. Have a nice weekend.
Monday, May 9, 2005 11:46 AM CDT
A small piece of good news this morning. Penelope's re-scan showed no disease in her abdomen (unofficially) and so the concern from Friday's test has been removed. We will take what we can get at this point!
Penelope was so brave this morning as she and Catherine lay down on the MIBG machine and she stayed still as they slid into this big, scary machine. I played several Sponge Bob episodes on the DVD right next to her and she really seemed content. We are so proud of her and her constant courage!
This afternoon Catherine and I will meet with our oncologists and discuss next steps for treatment. We are also waiting for final results of her bone marrow and other tests so please keep Penelope in your thoughts.
Have a nice day!
Saturday, May 7, 2005 5:58 PM CDT
Hello to all-
We finished scan week yesterday. As a result of the last two rounds of chemo since relapse, the doctors have detected a slight improvement in the skull and clavicular areas. Unfortunately, we need to go back on Monday for another MIBG scan to rule out the possibility that Penelope has developped a new mass in her abdomen. Once we get all the test results (including the final bone marrow one), we will then sit down with her doctors and figure out the next step. As always, Penelope did great after general anaethesia, demanding raspberry sorbet and Orangina shortly after she woke up.
Penelope, Isabelle and Oliver had a great day today. We took them to Isabelle's school carnival where all three of them went on rides, ate junk, and asked for more. The best Mother's Day gift ever...
Thursday, May 5, 2005 3:21 PM CDT
We're in the middle of "scan" week, with most major tests tomorrow. Just wanted to thank you so much for all the Sponge Bob bandaids. They are very, very much appreciated by all.
Monday, April 25, 2005 3:14 PM CDT
Nothing -- absolutely nothing -- makes a nightly GCSF shot to Penelope tolerable (it helps produce lymphocites). The only thing that makes it bearable is that John is a pro at it, and we top the whole thing off with a SpongeBob bandaid. But currently, there's a shortage of SpongeBob bandaids in the tri-state area. Forget Dora the Explorer or Shrek. Penelope finally settled on Elmo bandaids (he's on the cover of the box.) I am too scared to open the box to find out if it's only Elmo or if some other suspicious characters are mixed in there too.
Penelope is doing fine. As I type this, she tells me that she is going to jump in the bathtub. I better go....
Friday, April 22, 2005 4:33 PM CDT
Penelope received a platelet transfusion in clinic today. She's doing fine, her spirits are good, and her energy abounding, despite the fact that she is neutropenic or close to it. During her transfusion, she had a conversation and shared chocolate chip cookies with the wonderful woman who lovingly donated her platelets. She also made the cookies, too. It's true that if you take the time to look around, there are amazing things that happen every single day.
Saturday, April 16, 2005 6:28 PM CDT
Hi,
Well we finished day 4 of Cycle 2 of chemo. Basically, we had to spend a beautiful Saturday in the hospital as Penelope got chemo. But she absolutely made the most of it. Her friends Jack and Will (and their parents Brett and Becky) came over and we had a great pizza party in the hospital! My mom came over too and played with Penelope in the afternoon.
Then after 8 hours in the hospital we got to leave and Penelope and I went to the park. She spent a few minutes on the swings before going down the different slides about 100 times. As it was getting cold and dark and since she had a long day and we have another long day tomorrow, I told her we had to go and she said "Daddy I want a hot dog" so we went to her favorite restaurant in New York City...Gray's Papaya...where she wolfed down a hot dog with sauerkraut and mustard (of course Dad had two!) and a Sprite. As we started home, Penelope said " Daddy I want an ice cream cone" so we went to the market and stocked up on ice cream cones. About 5 minutes ago, Penelope polished off the first of the group.
Even though Penelope only got to spend one hour outside today, she was happy and playful the whole day. She is giggling on the bed and playing with Catherine as I write this. She makes the most of every minute, no matter what environment she is in, and continues to thrive each day.
Thursday, April 14, 2005 7:43 AM CDT
Yesterday, April 13th
1st Day/2nd Cycle topo/cytox:
After discovering the positioning pedals on the clinic's stretcher, Penelope gives Bear-Bear "up and down" rides and takes a nap. (Not a breeze by a long shot; just trying to stay positive and focused.) Hopefully, today we'll learn how to operate a blood pressure machine...
Monday, April 11, 2005 12:29 AM CDT
It was a no-go in clinic today because Penelope's platelets were too low to start the second round of topo/cytox chemo. We'll try again on Wednesday, and if they're still too low then, we'll shoot for Monday. Not a big setback and certainly not one for Penelope because she just sees it as two extra days in which she can play in the sunshine, climb rocks, go on the carousel, see the polar bears, eat chocolate, kick the ball, eat more chocolate, pop balloons, go on the swings, spy on her sister, suck on some lollipops, argue with her brother, boss the cats around, down some ice cream, look for rocks, and quote Spongebob, and more, while NOT in clinic.
Saturday, April 2, 2005 4:06 PM CST
Hi,
Its a rainy Saturday afternoon in New York City. Penelope had been feeling pretty lousy the past few days, very tired and cranky. The chemo was taking its toll on her blood counts and in turn on her. However, today she is full of energy and our house is once again filled with her big smiles and belly laughs.
She is one brave little girl. Every night I have to give her an injection in her leg while Catherine and Wilma (Oliver's nurse and basically a member of our family) hold her arms and legs. The injection is called a GMCSF shot and it stimulates her White Blood Cells to return so she can fight infection. It is not fun but she is valiant and does not flinch. She cries for a minute and then gets to have the lollipop of her choice and her smile returns.
Tomorrow we pick up her sister Isabelle at the airport who has been in California for 2 weks. Nothing puts a smile on Penelope's face like being with her big sister. We all can't wait to see her.
Hopefully Penelope will have a good week next week before chemo starts again. That's the way chemo works...once you recover from the previous cycle and feel good they hit you with the next cycle. But Penelope is a "bull" as I like to call her....she just keeps coming and will not let anything deny her from happiness, laughter and life.
I hope everyone has a good weekend!
Monday, March 28, 2005 7:53 PM CST
Hi,
Today was clinic day which meant that we basically camped out at the clinic watching Spongebob Squarepants while Penelope had a much needed blood transfusion post chemo (thank you donors!). John and I were both a bit anxious because it meant accessing her new port for the first time while not under anaesthesia. O.K., picture an inch-long nail and picture that nail going straight into your chest: that's how they access the port. All the nurses had warned us that we should prepare ourselves for a rough ride, with plenty of crying and tears, struggles, etc. Well, when it came time to do it, Penelope casually pulled up her shirt so the nurse would have access to the area; the nurse put the "nail" in (thank goodness John had turned on the cartoon channel so that I wouldn't pass out!); Penelope just sighed, pulled down her shirt, and we headed towards the play kitchen to play with plastic food. She never ever ceases to amaze us...
Saturday, March 26, 2005 7:27 PM CST
Hi,
It is Saturday and Penelope has finished her first cycle of new chemotherapy. Basically, she had surgery to put in a port on Monday and then had chemo from Monday thru Friday. She has been so courageous all week and has not let the chemo make her sick or slow her down. She filled her week like every week, with laughter, play and love. She is beyond inspirational. Let's all hope/pray that the chemo gets her disease under control.
We will be going to the clinic on Monday to check her counts. We think she will need a blood transfusion as her counts have already begun to drop. Otherwise, we hope she does not run a fever and therefore we can all avoid spending extended time at the hospital. Tomorrow we are having an Easter egg hunt and Penelope can't wait to collect as much chocolate as possible!
Please keep her in your thoughts and prayers.
Thank you.
John
Thursday, March 17, 2005 9:02 AM CST
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