Dear Friends and Family,

 

Three months - thirteen days - eleven hours - a few minutes

 

...red-haired boys walking to school, Roger to work, Lisa   heading out for the day
...play dates and friends, schoolwork and family time
...multiple sports, multiple days, multiple times, multiple ways
...a cold night, an orange moon, kittens at the door
...a song, a laugh, a moment, a sigh
...sleepless nights, lonely hearts, the ache on a weekend
...wondering, questioning, wiping a tear
...crying, hating, wishing, loving
...missing front teeth, sparkle in her eyes, mommy-I love you
...a note, a card, a friend, a hug
...someday, one day.............

 

Three months - thirteen days - eleven hours - a few more minutes

 

Thank you for caring.

 

Love,
Roger and Lisa

 

Happy Thanksgiving.

 

Dear Friends and Family,

 

We wish to thank all of you again for your kind notes, meals, hugs, gifts and acknowledgements on the loss of our darling Quincy.  Your kindness has truly helped us and continues to help us through this difficult time.  Our family feels very blessed to be surrounded by such an incredible network of love.

 

Quincy has been gone for two months now and we still feel her loss every day and every night.  We try to comfort ourselves knowing she is no longer in any pain and she is safe and peaceful in heaven.  Maintaining daily routines seems the best way for us to function with our sadness.  Brody and Keenan are doing well and have settled into 5th and 3rd grades respectively, with good friends and good teachers.  Their after school hours and weekends are dominated by soccer, flag football, and basketball.  Roger started back to work a few weeks ago and hopes to keep an office in the East Bay.  Lisa has begun the process of turning the Quincy Lee Fund into the Quincy Lee Foundation and hopes to finalize the goals for the foundation by the year-end.   We plan to continue the website for posting information about the Foundation.  As broken as our hearts are, we want to honor her spirit and goodness by living our lives as best we can without her.  

 

“The best and most beautiful things in the world cannot be seen or even touched.  They must be felt with the heart.”
      -Helen Keller

Love,
Roger and Lisa

Dear Friends and Family,

 

We would like to express our sincere appreciation to everyone who participated, attended, and shared in Quincy's Memorial Service.  Our family has been blessed with so much love and kindness from so many both near and far, and we are deeply grateful.

 

A few days after Quincy's service we went to Southern California to see friends and then spent a week with just the boys in San Diego.  It was good to get away but it also became immediately apparent to all of us how much we miss Quincy.  Knowing she is safe, cancer-free and without pain is comforting; but it doesn't take away the sadness we feel.  Our daughter's passing has left a big whole in our family and a bigger whole in our hearts.  Coming home from the trip and having the boys start back to school has been difficult. We are trying our best to get back on a normal routine, but not having Quincy here is very hard for us and our healing will take a long time.

 

Many of you have asked if we could post what we said at Quincy's Memorial Service and we have done so below along with the words from Pastor Kathi McShane. 

 

Over the next weeks we will begin the process of turning the Quincy Lee Fund, which so many of you have so generously contributed to, into a foundation.  Our goal is to support pediatric cancer research and aid those families still fighting the battle.

 

Thank you and God Bless,

Roger and Lisa

 

FROM QUINCY'S MEMORIAL SERVICE - AUGUST 9, 2004

 

Words of Welcome - Kathi McShane
We are here today to share together a celebration of the short-but-grace-filled life of Quincy Aidan Lee, and to mourn together the end of the part of her life she spent on this earth.  “Blessed are those who mourn,” Jesus said, and so we are very blessed on this day.  We are blessed by a God who knows and understands our sorrow, a God who weeps with us; the same God who gave Quincy to Roger and Lisa, and to all of us, for six years. 

Many of you were here in this sanctuary almost two years ago, when we gathered for a healing service for Quincy.  This day continues that one.  Your prayers carried Quincy and her family through two more years, and will carry them through the next days and months.  Never once did we stop praying for her.  Quincy's death does not negate those prayers, or the God who heard them. There are many things we do not understand about why Quincy's life was so short.  There will be days to ask those questions, and to talk about what might be the answers.  But today is a day to celebrate Quincy's life, and to give thanks for the gifts we have received from her and through her.

It is also a day to share our sadness, to cry together and hold one another up, and to know that for all the tears, we wouldn't have given up one moment of Quincy's life.  Grief, it has been said, is the tax that we pay on the loves of our lives, and there is no love that is not worth the price of its loss. 

And so, in sadness, in gratitude for Quincy's life, and in our hope and faith in the God with whom she lives still, we gather today to worship.

 

Prayer - Kathi McShane
Compassionate God, you have promised to be with those who gather in your name.  Now hear the prayers of this community that has gathered to mourn.  Hear our cries, and let us hear yours; break through our wall of grief, and give us faith to cling to your love that passes our understanding.  As Jesus took the children in his arms and blessed them, bless Quincy and bless our memories of her.  Help us to remember the laughter and the tears of her life, the pleasures of loving and being loved by this child.  Give us grace to find meaning and hope in her life, that was as precious to you as it was to us; and to give you thanks, even as we protest death's unjustness.  Dear God, you grieved for your beloved Son, and still you grieve for sick and dying children everywhere.  Only you know how much Lisa and Roger have loved their daughter and love her still; comfort them with your readiness to receive Quincy from their arms into your own, and to keep her in your never-ending care.  We know you hold her already.  Amen.

Words of Remembrance - Kathi McShane
 Quincy Aidan Lee was born at 11:59 p.m., on March 5, 1998.  She was healthy, she was a girl; but most impressively, she had red hair, like her two brothers.  And from the moment she was born, this child knew she had a safe, secure and treasured place in the Lee family.  She was a round and happy baby, and she was the apple of her parents' and her big brothers' eyes.  From the moment she got home, Brody and Keenan entertained her constantly, and she rewarded them with her great laugh, which came readily and often.  She did whatever she needed to to keep up with them, including beginning to walk at 9 months, so that she wouldn't miss a thing.  She couldn't wait to go to school, so that she could put on her backpack and walk to Rancho with her brothers.
 And somehow, I think she found a way not to miss anything that might have come her way in the six short years of her life—wrestling with her dad, whiffle ball in the backyard with her brothers, riding a bike, learning to swim and read, ballet, trick-or-treating with the big kids, kindergarten.  She was the tomboy and athlete who loved to play hard with the boys, and she was all little girl.  She loved to cook and to dance and to try to be just like her mom.  She was able to mother all those stuffed animals and dolls, as well as Brody and Keenan and Aladdin and Jasmine, the two kittens.  She loved purple and butterflies. 
Quincy was a healthy baby and toddler.  When she was three, she suddenly began to have terrible back pains, and it was only after several visits to doctors that tests revealed that her body was already full of tumors.  On the same day Lisa and Roger learned that their daughter had cancer, Quincy was admitted to the hospital at UC San Francisco, where she spent much of the next year.  There were days of pain, and nights of worry, and predictions that her little broken body couldn't withstand even the first round of chemotherapy.  But it did.  The hope and persistence of the doctors, the practical support of friends and family members, and the prayers that seemed to come from all over the world sustained Quincy and her family, giving them strength for each next step they needed to take.  At the end of that year, in November 2002, Quincy was cancer-free, but its shadow hid just out of sight.
The following March the cancer was back, and from then on, it would advance and then retreat with each new treatment.  And still we hoped for a cure, and prayed for grace until it came.  The cure never came, but the grace came in abundant supply.  
  In an almost-magical ballerina party to celebrate Quincy's 5th birthday;
· In a Make-a-Wish trip to Disneyworld that seemed to come at just the right time, so that Quincy could laugh her way through it with joy;
· In the kindness and hope of the doctors and nurses who treated Quincy with love as well as skill;
· In the good humor and amazing self-sacrifice that came to Roger and Brody and Keenan, and then to the boys' friends, that inspired them to let Lisa and Quincy shave their heads in solidarity with Quincy's chemotherapy-caused baldness;
· In a full year of kindergarten, and the gift of classmates who were compassionate enough to follow Quincy's fashion-forward style of wearing colored bandanas;
· In an extraordinary group of family members and friends, some of whom identify themselves only as “agents”, who have gone to unimaginable lengths to make sure that every ounce of Roger and Lisa's time and strength was reserved for caring for their family;
· In the unfailing resources of stamina and wisdom and love that made Lisa and Roger able never to waiver in their vigilance, their hope, their energy or their commitment for this child who was entrusted to their care.
· And grace came in whatever vision or wisdom or determination came to Quincy—the depth of which we will probably never know—that allowed her never to complain, to learn to walk all over again after each surgery, to answer that “no, her leg didn't hurt,” no matter how badly she was limping; and to say to her dad that she knew heaven would be the prettiest place she would ever live. 

The last few weeks were not easy. The days were full of the things you do with a sick child.  Lisa and Roger and Lisa's parents, Geri and Ron, monitored her pain and did what they could to keep it at bay.  They made her the food she loved, and brought her paper plates with zoo animals on them to coax her to eat.  They watched movies and drew pictures and played cards and laughed at the kittens.  Brody and Keenan were as attentive and as full of care for their sister as had always been. 
 Quincy never went into a coma before she died.  She lived every minute of her little life.  On Wednesday morning, after a restless night, she told her mother she loved her, she asked if her brothers were awake, and then she breathed her last breath as she laid right in between Roger and Lisa, right where she had always felt safe and loved, right where she knew she would be taken care of. 
 The stories that have shaped our view of the world are often the ones that are short enough to know by heart:  The Good Samaritan, The Gift of the Magi, Cinderella.  Like many things we treasure, the measure of Quincy's life is not in its length, but in the love it drew forth, its power to move us.  Quincy's was a life that changed the world, because it is a life that has changed us.  For this—for the untradable grace of her life among us—we give thanks. 

 

Quincy was a determined little girl, full of hope and love, with many talents.

She loved to draw and enjoyed making pictures for everyone.  This past month of July was a very tough one for Quin, but she was determined to make birthday cards for Mommy, Daddy, and Nanny's July birthdays. Even in all of her pain and discomfort, she sat at the kitchen table with her head resting on the table and made three beautiful cards starting each one with her familiar phrase, “Love, Quincy” then writing to whom the cards were for.  She always started each picture she drew with her signature “Love, Quincy.” And love is what she had for life and living each day. 

Quincy had many short term and long- term goals.  In our family we have a tradition on New Years Eve of writing down our goals for the coming year.  Two years ago Quincy's goals were going to Kindergarten, learning to read, and walking to school with her big brothers.  She was so excited to strap on her Hello Kitty backpack and leave for school with Brody and Keenan when she could.  And her joy of reading grew with each day of Kindergarten.  This years goals were riding a bike without training wheels and learning to swim.  Over spring break she got on her bike and started pedaling away without any fear and didn't stop until it got too dark out.  Her swimming skills were mastered quickly too, after just a few lessons.  We started calling her Dory from the movie Finding Nemo and would sing to her, “just keep swimming, just keep swimming”

Quincy's long- term goals were also filled with ambition.  First and foremost she wanted to be a mommy.  She told me “even though you are a mommy you can still be other things.  So in addition to being a mommy, she wanted to be a veterinarian, a ballerina, and an artist.  She thought those occupations would keep her pretty busy during the week, but the weekends were another story.  She wanted to be a
clown only on the weekend and go to parties and make balloon animals to make people smile. 

And that was Quincy; she wanted to bring happiness to everyone.  My friend very appropriately named her the ‘lemonade' girl.  Once, while taking Quincy shopping with her daughters, her girls picked out very decorative hair bands for their ponytails.  Quincy, without missing a beat said, “ I can wear mine as a bracelet.”   The last few days of her life, she needed a lot of morphine, which, in addition to her pain, made her so groggy that the boys would ask if she was asleep or awake.  But that still did not stop her lemonade spirit from shining through.  While spending her last days lying on the couch watching cartoons together, she told me that she sleeps during the commercials and wakes-up for her shows.  Our little girl, dealt many lemons in her short life, but always able to make lemonade.

Quincy fought so hard those last days to stay with us.  She gave me an incredible gift her last night.  She was in a lot of pain and struggled to breathe, whimpering and mumbling the whole night.  Then not long before she passed away, in a very clear voice she said, “Mommy,” and I said “What Quin?” and she said, “I love you.”

When Quincy was diagnosed with cancer in November 2001 at the age of 3 ½, I think many of you remember how sick she was and we were unsure if she would ever see her 4th birthday.  But with great luck we did and on her 4th birthday when she was blowing out her candles she made a wish.  A little later Lisa asked Quincy what she wished for and Quincy said “Mommy, I have the best wish in the whole wide world.”  Lisa asked Quincy what the wish was and Quincy said “I wished that I would be all better.”  So from then on every time Quincy made a wish, either at a wishing well, or seeing the first star at night, or wherever a wish might be... we would smile at Quincy and ask did you make your wish?  And Quincy would smile and say, “I did,  I wished that I would be all better.”  Late last year after one of Quincy's chemotherapy treatments we were leaving the clinic at UCSF and it was one of those days where the clinic was really crowded with cancer kids getting their treatment and it was a day when there were some very, very sick kids there.  And as we left the clinic Quincy grabbed my hand and said “Daddy, I have a new wish.  And I said “You do, even better than the best wish in the whole wide world?”  Quincy said, “Daddy, this is the bestest wish in the whole wide world.”  I picked Quincy up into my arms and I asked “What is the bestest wish?”  Quincy smiled, leaned toward me and whispered in my ear...”Daddy, I wish that all the kids with cancer would get all better.” 

Well sweetheart, someday that is going to happen. 

We have had many blessings over the past three years from so many people that became part of our lives.  I would first like to thank all the people at UCSF Medical Center.  I can't tell you how terrific, brilliant, kind, caring and compassionate all of the doctors, nurses, staff, technicians, counselors and everyone we came into contact with were to our daughter and our family.  I also would like to thank the people at John Muir who were wonderful too.  And Dr. Kate, even though you tried to get Quincy to talk to you for nearly three years with little success, you should know Quincy really loved you.

We have been blessed by so many reaching out to us over the last three years - people near and far, family and friends, friends of friends, friends of family, it's been quite remarkable.  We would like to thank all the people of the Rancho community and the Alamo/Danville area that have been so kind to our family. When we moved here nearly nine years ago we had no idea what a truly beautiful community this would be.  Lisa and I said many times along the road of Quincy's treatment that no matter what the outcome, you have shown us that people are good, people care, the world is a wonderful place. 

We would like to thank all the volunteers and members of San Ramon Valley United Methodist Church; and especially Kathi McShane who has supported us both emotionally and spiritually.  And for always being there, especially when we needed her most. 

We would like to thank our families and close friends who have been right by our side from the very beginning.  I especially want to thank the Julies.  I think anyone who knows of Quincy and our family also knows the Julies.  Julie Peck and Julie Tuckness have given our family so much help and support and taken care of so many details in our life during Quincy's treatment that we are forever grateful.

There is something dreadfully wrong when two young boys have to lose their little sister to cancer.  But our sons, Brody and Keenan were the greatest big brothers to Quincy that a mom and dad could ever hope for.  They made Quincy laugh, they sometimes made her mad and cry, but they always loved her.  And ‘Oh' did Quincy love her brothers.  Many years from now when Brody and Keenan fully understand what Quincy went through fighting this disease, they will be very proud and honored to have had their little sister be a part of their life and a part of them.

Quincy was such an incredible blessing to our family.  I am going to miss her with every breath of every day.  I am going to miss her sitting at the head of our dinner table barking orders, eating strawberries, running and jumping into my arms when I get home from work, the sparkle in her eyes, the never-ending smile on her face.  I guess when you are a parent there isn't a rule that says your children will outlive you.  On the day Quincy was born if God had said to Lisa and me “Here is your beautiful child, hold her and love her, but in six years I am going to want her back; without hesitation, we would do it and love and treasure each and every day.  I think this is a special gift Quincy gave to our family - loving and treasuring every day.

I would like to leave you with one thought.  Quincy fought cancer for half of her short life.  She never complained, it didn't bother her, she just wanted to be like any other child growing up.  She didn't really understand cancer - only that it was bad.  At the end before she died, when she was in so much pain and really suffering she kept fighting and fighting, never complaining, fighting for one more day, one more hour, one more minute, and then her cancer overwhelmed her.  If you come to a point in your life where you feel challenged, or tested, or need an extra boost of energy ...I ask you to think of a sweet little girl, this sweet little girl with the heart of a lion, who kept fighting and fighting against an invisible disease, because she knew how much she loved her family and how she loved each and every day.  I think her spirit is a gift our little angel would like to share with all of us.

Thank you and God Bless You. 

 

Words of Hope - Kathi McShane
 I want to say a few words first to you who are children, who knew Quincy as a sister, a classmate, a cousin, or a friend, or the sister of your friend. 
&nbspo you see this empty chair up here?  This particular chair wasn't Quincy's, but it's here to remind us of the chairs that are empty now because they were Quincy's place.  Her place at the table in her family's kitchen, her chair at school, her place in the games that maybe you used to play with her.  Her place in our hearts. 
 It's uncomfortable to have an empty place that's supposed to be filled.  Nothing works as well as it did before.  We feel sad. 
 But that empty chair is one of the ways we remember Quincy.  And it's important to let it stay empty for a while, even if it does make us sad and it looks like it ought to have someone sitting in it. 
 The Bible tells us that life is God's gift to us.  No one knows just how long each of our lives on earth will last. If we are lucky enough to know someone like Quincy, we can learn the lesson that it's important to appreciate every day and every minute we have with our friends and the people we love.
 We don't understand why Quincy had to die.  None of us do.  But we know this—and I know it as surely as I know myself—that Quincy's life is not over.  That she lives with God forever, and she is as loved and happy and healthy as she ever was on this earth.  We can't see her, and we can't see where she is.  We have to trust God to love her for us. 
 And God does that.  It's a good deal.  And in the meantime, our part of that deal is to notice the blessings that God gives us in this life, and to take care of them.  We have to treat the people who fill the chairs in our lives like treasures, and to remember with love the people who filled the chairs that are empty now. 
 For a while, and especially today, there will be a lot of sadness.  We are all very sorry that Quincy died.  One of the ways we remember her is to cry and be sad together.  But everyone will be OK.  Your mom and dad will be OK.  You will be OK.  God will take care of us all. 

 I have carried for years in the calendar that holds all my most important reminders a letter from a father whose son was killed accidentally just before his 15th birthday.  After his son's funeral, this father said in the letter, he bought a crucifix and put it on the wall above his son's empty chair at their dinner table.  Now for this man, and for me, a crucifix is not part of our regular spiritual practice—we Protestants don't really do crucifixes.  But, he said, every evening at dinner, when he was most conscious of his son's empty chair in front of him, he could lift his eyes to the crucifix and remember that God too knows what it means to lose a child.  Remember that God has suffered grief like this one.  It was somehow comforting to him, and it is to me too, to know that God is not only the God of the sufferers, but the God who suffers with us.  And in the end, that is even more important to our well-being than thinking that God could cure cancer with the snap of a finger or make the people we love live forever. 
This is a God we can trust.  This is a God whom we ought to take seriously when he said, “I go to prepare a place for you;” and “I am the resurrection and the life; because I live, you also will live.”
I often think that at times like this, the purpose of our faith is not to answer the question “Why?” but to answer the question, “What shall we do next?”  In Quincy's life, Roger and Lisa and all of you who have supported them have always known, somehow, what to do next.  You have been motivated by love and energized by compassion.  And now your faith—and if you don't have any of your own, take mine—now our faith says, “Choose life.”  Choose to believe that there is new life for Quincy and a restored life for Roger and Lisa and healing all around us. 
Let Quincy's legacy be the way we live our lives, now that we have been touched by the hope of hers.  You have learned valuable lessons of compassion from her life and death; don't let those lessons go.  As a community of friends and supporters to Quincy's family, you have marshaled resources that you probably didn't know you had. 
Remember that there are lots of places and people in the world where all of that is still needed.  We can make things easier for one another.  That too is Quincy's legacy, one more way she will live forever. 

 

Prayer - Kathi McShane
Let us pray.  We commit to your care, loving God, the soul of Quincy Aidan Lee, our daughter, sister, granddaughter, and friend.  We trust that her days with you will be long and full of joy.  And we know that you commit to our care the memory and legacy of her spirit, through which she lives in our hearts.  Amen.

 

Blessing - Kathi McShane
Go forth in peace, in hope, and in the sure knowledge that Quincy is held in the strong and loving arms of the One who has brought her to her final healing. 
The grace of the Lord Jesus Christ, the love of God, and the communion of the Holy Spirit be with you all.  Amen.

Quincy's Memorial Service will be:

 

Monday - August 9, 2004 - 1:00pm

San Ramon Valley United Methodist Church

902 Danville Blvd.

Alamo, CA  94507

(925) 837-5243

 

Any questions call:

Julie Peck (925) 820-1922

Julie Tuckness (925) 838-9150

 

In lieu of flowers, donations may be made to:

 

The Quincy Lee Fund

P.O. Box 815

Danville, CA  94526

 

All proceeds of the Quincy Lee Fund go to pediatric cancer.

Dear Friends and Family,

 

Sadly, we report that Quincy passed away shortly before 6:00am this morning.

 

We will post about her funeral service soon.

 

Love,

Roger and Lisa

Dear Friends and Family,

 

The past few days have been very difficult for Quincy as her cancer continues to consume her.  Her pain has been significant and we are still trying to find an effective combination of medication.  The challenge is trying to control her pain without completely knocking her out, but that may not be an option fairly soon.  We spend our days on the couch with Quincy trying our best to keep her comfortable and letting her know how much we love her.

 

Thank you for your thoughts, prayers, and kindness.

 

Love,
Roger and Lisa

Dear Friends and Family,

 

Thank you for all of the cards, notes, gifts, webpostings, and meals.  We feel very blessed by your generous outpouring of love and kindness. 

 

Quincy returned home on July 18 from UCSF after her intestinal bypass surgery.  It was probably a day or two earlier than we should have and Quincy was pretty sore, but we felt home was the best place to be.  The procedure was a success and Quincy is able to drink and eat again without getting sick and that is good news.

 

Over the past week Quincy's abdominal tumor has progressed and is now causing her a lot of pain and discomfort.  We are trying to find the right combination of medication to keep her comfortable.  She doesn't have much energy and her days now consist of lying on the couch and watching cartoons and movies and petting her kitties.

 

A few weeks ago we did have conversations with Brody and Keenan about Quincy's terminal condition.  Over the course of her treatment these past three years they have seen Quincy being very sick and then recovering and feeling better a couple of times.  It was difficult explaining and probably harder for them to accept that Quincy wasn't going to get better this time.  Both of them took this very hard.  They have been very kind and sweet to Quincy but we can tell they are clearly uncomfortable seeing their little sister having her serious bouts of pain.  We have been trying to keep the boys busy with their baseball, soccer and summer activities and really appreciate everyone's help in trying to keep their lives as normal as possible.  Nanny and Pop-Pop are staying here for the time being and we are grateful for their help.

 

Everyday seems to be more precious than the previous and even with her pain increasing, we usually find something that will make Quincy smile and laugh.  This is probably the best medicine of all.

 

Thank you for keeping our little one and family in your thoughts and prayers.

 

Love,
Roger and Lisa

Dear Friends and Family,

 

Early yesterday morning Quincy had surgery here at UCSF Hospital.  For the past week, Quincy has been vomiting every few hours, unable to keep down any food or liquids.  Her expanding abdominal tumor has caused a complete blockage of her upper intestinal track.  This has resulted in all food, liquids, stomach and liver acids having no place to go but back up.  She had a very tough week.

 

Our doctors recommended surgery to bypass the blockage.  The procedure, a laproscopic gastro-jejunostomy, was performed yesterday.  The surgeon was pleased with the way the operation went, as it was uncertain he would be able to do this due to her advanced disease.

 

We went forward with this palliative surgery to improve Quincy's quality-of-life.  We are hoping her body will begin healing and functioning better in a few days, so we may see many more smiles on her face at home.

 

Love,

Roger and Lisa

Dear Friends and Family,

 

In November 2001, Quincy was diagnosed with stage 4 Alveolar Rhabdomyosarcoma, a rare and extremely aggressive childhood cancer.  After nearly three years of treatment she has been through multiple chemotherapy regimens, surgeries, radiation treatments, 130+ days in the hospital, biopsies, transfusions, ER visits, outpatient infusions, experimental treatments, boundless numbers of scans, countless medicines, and continuous doctor consultations in attempting to beat this disease.  Through all this treatment our little one has shown an incredibly positive spirit and never a complaint.  Today, we left UCSF Hospital for the very last time.  Quincy's cancer is out-of-control and her health is in a downward spiral.  There will be no more treatment for Quincy.

 

We took Quincy into the hospital two days ago due to uncontrolled vomiting.  This started on Wednesday night.  Quincy's doctors feel the cause for her vomiting is from the abdominal tumor at her pancreas that is expanding and pressing against her stomach and additionally causing some blockage.  A CT Scan on Friday showed that this tumor has tripled in size from one month ago and also showed there is significant tumor activity in her liver.  In addition to the growth of the sizable lump above her left knee, we can feel several more tumors on both legs.  As far as the metastasis to her brain, neurological exams show the radiation treatment to that area has been effective to date. 

 

Home health and hospice care has been arranged and will start on Monday.  Our goal is to make Quincy as comfortable as possible in these final days.  We are hoping we can have a few weeks of special family time with our little girl.

 

Thank you for your kind thoughts and prayers.

 

Love,

Roger and Lisa

Dear Friends and Family,

 

The bad news keeps coming in.  We were scheduled to start another Phase I Clinical Trial at Stanford next Wednesday but that has been cancelled.   On Thursday June 10, as one of the pre-trial exams to qualify for this study, Quincy had a CT scan of her head.  Sadly, the scan shows her cancer has now spread to her brain. 

 

We have a meeting Monday morning at UCSF with the radiation oncology team and will start radiation treatment immediately.  Hopefully, with radiation she can remain pain free for a while, as she has yet to show signs of her rapidly spreading cancer.

 

Meanwhile, the twinkle in her eye is a little brighter with the addition of two new kitties at our house.  She gave them the names of Aladdin and Jasmine.  It's wonderful to watch how two furry little creatures can bring so much joy to a very sick little girl.

 

Thank you for your kind thoughts and prayers.

 

Love,

Roger and Lisa

 

 

Dear Friends and Family,

These monthly updates are getting harder and harder for us to write.  At the end of May, Quincy finished her Phase I Clinical Trial at Stanford without any complications.  On June 3rd, as part of the follow up protocol to the experimental drug Quincy had taken, she had an MRI and a CT Scan. The results were very depressing.  In addition to the lump on her leg increasing in size, there is a new lump below her knee, multiple lesions in her thigh, and worst-of-all, a sizeable tumor on her pancreas measuring 6 cm.  This tumor was undetected 5 weeks ago. 

 

With all of this bad news, Quincy is still doing fine and has yet to feel any pain.  Quincy's doctor has suggested we try one last Phase I Clinical Trial.  The particular drug in this new study has shown to have some effect in various adult cancers.  The treatment schedule and side effects seem manageable, so we have reserved a spot and will start next week at Stanford. 

 

School is over this week and we are looking forward to a happy summer with Quincy.  Thank you to all of you who helped kick off our summer with our Memorial weekend trip to Lake Tahoe.  We haven't had many opportunities over the past 2 ½ years to get out of town so this trip was very special for all of us.

 

Love,

Roger and Lisa

 

 

Dear Friends and Family,

 

Last week we had another major setback.  On Thursday, April 29, Quincy was scheduled to start round four of her new chemo regimen that she has been on since the lump on her leg appeared in February.  Early that morning we had an ultrasound on her left leg before her chemo was scheduled to begin.  The results were very disappointing.  The lump has increased in size, which means that this chemo regimen has now failed. 

At this point, our options are very limited.  We have used all the chemotherapy drugs that have proven to have any effect on Quincy's cancer.  The doctors told us that any choice of treatments we are now considering for Quincy should be completely focused on “quality-of-life.” 

After many serious discussions with the team of doctors at UCSF, we have decided to enroll Quincy into a Phase I clinical trial of a new drug being tested at Stanford University Children's Hospital.  The potential of this drug as well as any Phase I study having positive results are low; but through our research and discussions we feel we have to try.  Quincy is not yet in any pain, the drug protocol is manageable, and the drug side effects seem to be minimal. 

In preparation for the clinical trial at Stanford, this past week has been a whirlwind of exams, scans, and tests.  On Monday Quincy had a MRI (her first one without any anesthesia).  Tuesday was a bi-lateral bone marrow biopsy and aspiration.  On Wednesday we spent the entire day at Stanford in discussions with the pediatric oncologists.  Thursday and Friday were filled with arm pokes, blood draws, EKG's and nuclear medicine scans, along with much communication between UCSF and Stanford in order to qualify for this clinical trial.

 We received word late Friday that Quincy was accepted into the study and that we will start on Monday.  In this Phase I clinical trial Quincy will be monitored very closely and have numerous tests, labs, and scans weekly.  We can only hope and pray her little body has some response to this study and that her spirit remains high, as it has been throughout these past weeks. 

Quincy truly keeps us going.  On every hospital trip we listen to her favorite CD, which is the sound track to her favorite movie “Brother Bear”.  We've grown fond of all the songs on the CD and we can't help but think of Quincy on the song with the line ... “with blue skies ahead, I'm on my way and I can't keep this smile off my face.”  Our little girl keeps moving forward living her life - with a smile on her face and a twinkle in her eye. 

Thank you for all of your prayers and kind thoughts.

 

Love,
Roger & Lisa

Dear Friends and Family,
Happy Belated Easter.  Ours was indeed a happy one followed by a much-needed spring break.  Quincy could not wait to go to bed the night before Easter so that the Easter Bunny could hop to our house.  She, Brody and Keenan, were up early to find all the eggs the Easter Bunny had hidden in the house along with the many goodies in their Easter baskets.  It was a great family day and week at our house.  Quincy had quite a memorable spring break as she learned to ride her bike without training wheels.  Given her many brittle bones from her radiation treatments, combined with her low blood counts from her recent chemo, we were two pretty nervous parents.  She however, showed no fear and picked up riding a "two-wheeler" very quickly.  She spent hours each day perfecting her new skill.  While her brothers raced around her yelling encouragement, she was quite content with her new talent and had only a few minor bruises to show for it.
Quincy also enjoyed a whole month of birthday celebrations.  We finally had her "Butterfly/Spongebob Squarepants" birthday party at the beginning of April.  A Spongebob jump house was set up in the back yard and Quincy and her girlfriends jumped the afternoon away while working on butterfly crafts and munching on butterfly cookies and cupcakes.  She received many great gifts and cards, but her favorite one was something she and her brothers have wanted for a long time - a family pet.  She is now the proud owner of a Russian Tortoise, whom she named Mickey.  He is a vegetarian so he fits in nicely with our family.
 
On Thursday, April 8, we met with Quincy's doctor and also started round three of the new chemo regimen, which was completed on April 12.  The good news is that the lump on Quincy's leg has not grown any larger since its initial appearance and has probably even shrunk a little bit.  It looks like the new chemo has at least stabilized the advancement of her tumor.  Quincy handles this treatment well, although the new chemo is a lot harsher on her system.  Unfortunately this past Saturday night Quincy had a bad earache and high fever so we had to take her into UCSF where we spent a couple days, but thanks to intravenous antibiotics, it was not a long a stay. 
Next week Quincy will have another set of scans: a CT of her chest/abdomen/pelvis and an ultrasound of her leg.  The results of the scans will give us a report on the effectiveness of her current treatment.  We are at the point were Quincy is evaluated every couple of weeks to determine the next step.  If the scans show the recurrence of her cancer is still localized in her leg, it is likely she will have radiation therapy on her leg to buy us more time.  Seeing how happy she is these days, in spite of all she is going through, we desperately want to keep buying as much time as we possibly can.  In the meantime, we continue to hope and pray and find a smile in each day.  This past week was very easy to find that happiness.  As parents, there is nothing sweeter than hearing your kids camped out together on their bedroom floor in sleeping bags laughing the night away.
Good Blessings to all.
 
Love,
 
Roger and Lisa

Dear Friends and Family

Early last week we met with Quincy's doctors to discuss options for battling her cancer again.  A new five- day chemo protocol was decided upon and scheduled for later that week.  The doctors wanted her hospitalized for this chemo in order to see how she would react to these stronger drugs.  So Thursday morning we headed back to UCSF, quietly sobbing, wishing this day had never come.  Meanwhile in the back seat, Quincy was singing and laughing, looking forward to seeing some of her favorite nurses again.

Everything went well in the hospital and we were able to get home Saturday afternoon.    Over the next few weeks we will watch and evaluate to see if this chemo is working.  The lump on her leg is our marker so it will be rather evident if something is happening.  If the chemo is working the regimen will be three full days of chemo, skip one day, and then one day more.  The good news is that we will be able to do these treatments outpatient; the bad news is that these drugs are much harsher on her system than Quincy's most recent chemo.  Therefore, her blood counts stand a much higher chance of being knocked down, thus making her more susceptible to infections and fevers.

Quincy is once again our little hero, and has taken everything in stride.  She is focused right now like any other 5-year-old would be, on celebrating her 6th birthday on Friday, March 5th.  Will it be a pony, princess or butterfly party?  These are the important questions at our house now.

Thanks to everyone for your kindness and help to our family these past two weeks.

Love,

Roger and Lisa

Dear Friends and Family,

Many of you have already heard the difficult news we have to report.  Last Sunday we found a lump on Quincy's leg right above her left knee.  Tuesday we spent all day at UCSF seeing our doctors and having exams.  An ultrasound and biopsy of the lump were both positive, showing that Quincy's cancer is back and spreading.  We knew in the back of our minds that this day was supposed to come but the reality is tough to accept.

We are scheduled for more scans on Monday, February 23 and then will meet with our doctors to discuss the next step.  Quincy has only complained slightly of the pain so far and her spirits are as great as always.  In fact, this was supposed to be another chemo week and she thinks it is pretty cool that she gets to skip it.  Thank God for the unending exuberance of five-year-olds.

Thank you for your concern and we will keep you posted.

Love,

Roger and Lisa

Dear Friends and Family,

It seems like Thanksgiving just flew right into Christmas this year without much time in between.  Quincy was so excited about the holiday season that she made Roger put up the Christmas lights before Thanksgiving (a definite first at our house!)  On Christmas morning Quincy could hardly contain herself, she was so happy with all of her presents.  After telling us she must have been very good this year, she stuck her little head near the fireplace and yelled up “Thank you Santa, I love you!”  Quincy thought the boys were also good, because Santa brought them some very nice baseball equipment.  We all had a great day, but it was the karaoke machine that provided us with the most humor.  Nanny and Pop-Pop, along with Aunt Karen and cousins Bryan and Evan, came out to ring in the New Year with us.  It was a lot of laughs, a lot of Nintendo, and a lot of chocolate...just the way every school break should be.

Our New Year started off with good news.  On January 5th, before she started her next round of chemo, Quincy had a CT scan of her chest, abdomen and pelvis that showed her cancer is still in remission.  We were certain her scans would be clean because she has been doing great, but it is always a relief to have the official report in black and white.  She is without any pain and a very happy and active little girl.  The doctors are still amazed at how well she is doing on this chemo, but as usual there is a footnote.  If all keeps going well, April will mark the one-year anniversary on this regimen.  With the unpredicted length of Quincy's remarkable response to this chemo, we are now sailing in uncharted waters.  At the one-year mark we will have serious discussions with our doctors about the course of her treatment.  At this point the path is unclear, but as we have over the past two-plus years, will cross that bridge when we come to it.

So now it's back to school, basketball, and ballet.  Quincy started a new dance class and was very excited to put on her ballet slippers and leotard again.  It's amazing for us to even be able to write about it.

Thank you for all your wonderful holiday greetings and prayers.

Love,

Roger and Lisa