Thank and Cry
12 hours ago
Tuesday, May 5, 2009
Saturday, May 2, 2009
Reinvent
With all good intentions, my parents had me tested when i was 5 years old. I went into a room with a two-way mirror, an old man, and a clay playset of a village in the mountains.
The man's white hair scared me and I cried for my parents. I couldn't see them through the magic window, only a reflection of myself, pinched and small with worry. The man smiled kindly, coaxing me to form puzzles, count blocks and put pictures in order. Then he brought out the playset. There were mountains sloping into the sea, small square houses and a river. He asked me, "How do you get from the sea to the mountains? What's the shortest way back home?" And I was momentarily distracted, losing myself in landscape.
These were the colors: indigo water, red mountains, blue grass. For some reason they burned themselves into my memory,
reappearing at the edges of dreams many years later. But I never saw real mountains like that, or grapey water.
Until I travelled to Eilat. There was something strange about the sea cutting a gash into moon-like desert. It took 3 days to locate the landscape, but when I dove into the Gulf of Aqaba, the sun slanted down on the red mountains, the water tasted like grapes and the playset came alive.
The colors were real after all. and I found a way to change what had scared me into something that delighted me. After 13 years I reclaimed the old memory and created a new one.
This is what I want for Toby. The time to grow beyond this moment, the chance to reimagine and reinvent his life. To find what he's looking for. Or even better, to create it.
Last week he came home from school with the plans and drawings for a REMOTE CONTROL TRAFFIC AVOIDER. He drew our house with a hatch in the roof. Alongside was a sketch for a backpack with propellor and control panel. The buttons and dials were labelled 1mile to 12miles; the touchscreen had a keyboard. He excitedly explained that each of us would have a backpack and we could enter a destination like "school," where i would drop him off, before punching in "work." The backpack
would remember where each place was located, so that we would never be late.
Or his plan for a PARTY TRAIN. One car has donuts and hot chocolate. Another car has a lending library of dvds. The entire train is computerized, and most importantly there's groovy music throughout.
And then yesterday, he pulled out some poems from his folder and said, "Mommy, this poem is for you. It is beautiful." He stood on the couch and read:
You love the roses -- so do I. I wish
The sky would rain down roses, as they rain
From off the shaken bush. Why will it not?
Then all the valley would be pink and white
And soft to tread on. They would fall as light
As feathers, smelling sweet; and it would be
Like sleeping and like waking, all at once!
--George Eliot
And then he said, "But this is my favorite. It is so funny:"
This is just to say
I have eaten
The plums
that were in
the icebox
and which
you were probably
saving
for breakfast
Forgive me
they were delicious
so sweet
and so cold
--William Carlos Williams
Oh, child of my heart! How did you know it was your mother's favorite too?
+++++
Things are going really well for Toby. He is playing soccer, riding his new bike, grooving to the music. In-between he has finished his 4th cycle of ABT-751, with minimal side effects. He has once-weekly visits to the hospital for blood counts and follow-up, with scans every 3 months. The day-to-day almost-ordinariness of our lives is a revelation and a joy. But we know that it can change in a moment. So many of our friends have recently relapsed; it happens every day and we watch helplessly as formerly vibrant children wither into frailty and despair. We worry.
Unfortunately, neuroblastoma doesn't go away, as so clearly spelled out by Will's Dad:
Neuroblastoma is the most common cancer in INFANTS. The average age is less than 3 years old at diagnosis. Five years after being diagnosed nearly half of these kids are dead. HALF.
Kids with high risk disease have to undergo the most intense chemo available and even after radiation, chemo, surgery, stem cell rescue, and immunotherapy, about 30% survive for 5 years. If neuroblastoma comes back (relapse) or stops responding to therapy (refractory, like Toby), it is usually viewed as a terminal illness.
Most children with neuroblastoma will be DEAD long before any government funding will be secured and utilized to create treatment options. Money for a cure is needed today to continue giving not just HOPE but real clinical options to save our kids from dying.
The five year survival for all kids with neuroblastoma is about 55%. This is when you include high risk kids and even the infants with tumors that self resolve and others who just have to have a tumor removed with no chemo.
55%.
What does that look like?
Let's say an average kindergarten class has 24 kids. Now assume that they are all diagnosed with neuroblastoma on the first day of school.
Five years later, when they are about to start 5th grade how many kids in that class would even be alive?
13 alive (13.2 to be exact)
11 dead
Now, lets assume that instead of those 24 kids being diagnosed with NB on the first day lets pretend that they all are diagnosed as relapsed/refractory neuroblastoma (like Toby) on the first day of school.
About how many kids would graduate high school?
1 student alive....maybe.
23 kids dead
Less than 5% long term survival of relapsed NB.
For that 1 student to even make it he/she would have had to undergo the most intense chemotherapy treatment imaginable. He/she would (most likely) be sterile, severely hearing impaired, bearing multiple scars from multiple surgeries, still on some form of therapy, receiving special services, and very UNLIKELY to live long enough to even make it to high school. If NB did not come back, the risk of a secondary cancer - FROM THE TREATMENT - would be high due to radiation and certain chemotherapy agents.
How is this acceptable? Where is the outrage? The action?
It is 2009 and we live in the greatest nation in the history of planet Earth and yet this disease that accounts for 7% of pediatric cancer cases ALSO accounts for 15% of pediatric cancer deaths???
It is the most common cancer in infants....in INFANTS...yet nothing has been done about survival. It would be pathetic if it were not so tragic.
I don't even know if a word exists to properly describe this absurd reality.
And now, as my son strives to be the 1 kid to survive treatment out of his relapsed NB classmates the one thing that stands in our way is, of all things, money.
++++++++
A week from today, on Saturday, May 9, we'll be walking in Central Park to raise funds for neuroblastoma research and treatment at Memorial Sloan-Kettering. If you are in the NY area and can join us on Toby's Team we would be thrilled and grateful. If you can add some money to the pot, well that would be amazing. Please visit www.walkforkidswithcancer.org to learn more or email Reva at walkwithtoby (at) gmail.com. And please consider making a donation to Band of Parents or MagicWater or CNCF or Solving Kids Cancer, organizations with a common cause to help save children's lives.
Thank you.
love,
Mooki + Stephen + Yoni + Toby
The man's white hair scared me and I cried for my parents. I couldn't see them through the magic window, only a reflection of myself, pinched and small with worry. The man smiled kindly, coaxing me to form puzzles, count blocks and put pictures in order. Then he brought out the playset. There were mountains sloping into the sea, small square houses and a river. He asked me, "How do you get from the sea to the mountains? What's the shortest way back home?" And I was momentarily distracted, losing myself in landscape.
These were the colors: indigo water, red mountains, blue grass. For some reason they burned themselves into my memory,
reappearing at the edges of dreams many years later. But I never saw real mountains like that, or grapey water.
Until I travelled to Eilat. There was something strange about the sea cutting a gash into moon-like desert. It took 3 days to locate the landscape, but when I dove into the Gulf of Aqaba, the sun slanted down on the red mountains, the water tasted like grapes and the playset came alive.
The colors were real after all. and I found a way to change what had scared me into something that delighted me. After 13 years I reclaimed the old memory and created a new one.
This is what I want for Toby. The time to grow beyond this moment, the chance to reimagine and reinvent his life. To find what he's looking for. Or even better, to create it.
Last week he came home from school with the plans and drawings for a REMOTE CONTROL TRAFFIC AVOIDER. He drew our house with a hatch in the roof. Alongside was a sketch for a backpack with propellor and control panel. The buttons and dials were labelled 1mile to 12miles; the touchscreen had a keyboard. He excitedly explained that each of us would have a backpack and we could enter a destination like "school," where i would drop him off, before punching in "work." The backpack
would remember where each place was located, so that we would never be late.
Or his plan for a PARTY TRAIN. One car has donuts and hot chocolate. Another car has a lending library of dvds. The entire train is computerized, and most importantly there's groovy music throughout.
And then yesterday, he pulled out some poems from his folder and said, "Mommy, this poem is for you. It is beautiful." He stood on the couch and read:
You love the roses -- so do I. I wish
The sky would rain down roses, as they rain
From off the shaken bush. Why will it not?
Then all the valley would be pink and white
And soft to tread on. They would fall as light
As feathers, smelling sweet; and it would be
Like sleeping and like waking, all at once!
--George Eliot
And then he said, "But this is my favorite. It is so funny:"
This is just to say
I have eaten
The plums
that were in
the icebox
and which
you were probably
saving
for breakfast
Forgive me
they were delicious
so sweet
and so cold
--William Carlos Williams
Oh, child of my heart! How did you know it was your mother's favorite too?
+++++
Things are going really well for Toby. He is playing soccer, riding his new bike, grooving to the music. In-between he has finished his 4th cycle of ABT-751, with minimal side effects. He has once-weekly visits to the hospital for blood counts and follow-up, with scans every 3 months. The day-to-day almost-ordinariness of our lives is a revelation and a joy. But we know that it can change in a moment. So many of our friends have recently relapsed; it happens every day and we watch helplessly as formerly vibrant children wither into frailty and despair. We worry.
Unfortunately, neuroblastoma doesn't go away, as so clearly spelled out by Will's Dad:
Neuroblastoma is the most common cancer in INFANTS. The average age is less than 3 years old at diagnosis. Five years after being diagnosed nearly half of these kids are dead. HALF.
Kids with high risk disease have to undergo the most intense chemo available and even after radiation, chemo, surgery, stem cell rescue, and immunotherapy, about 30% survive for 5 years. If neuroblastoma comes back (relapse) or stops responding to therapy (refractory, like Toby), it is usually viewed as a terminal illness.
Most children with neuroblastoma will be DEAD long before any government funding will be secured and utilized to create treatment options. Money for a cure is needed today to continue giving not just HOPE but real clinical options to save our kids from dying.
The five year survival for all kids with neuroblastoma is about 55%. This is when you include high risk kids and even the infants with tumors that self resolve and others who just have to have a tumor removed with no chemo.
55%.
What does that look like?
Let's say an average kindergarten class has 24 kids. Now assume that they are all diagnosed with neuroblastoma on the first day of school.
Five years later, when they are about to start 5th grade how many kids in that class would even be alive?
13 alive (13.2 to be exact)
11 dead
Now, lets assume that instead of those 24 kids being diagnosed with NB on the first day lets pretend that they all are diagnosed as relapsed/refractory neuroblastoma (like Toby) on the first day of school.
About how many kids would graduate high school?
1 student alive....maybe.
23 kids dead
Less than 5% long term survival of relapsed NB.
For that 1 student to even make it he/she would have had to undergo the most intense chemotherapy treatment imaginable. He/she would (most likely) be sterile, severely hearing impaired, bearing multiple scars from multiple surgeries, still on some form of therapy, receiving special services, and very UNLIKELY to live long enough to even make it to high school. If NB did not come back, the risk of a secondary cancer - FROM THE TREATMENT - would be high due to radiation and certain chemotherapy agents.
How is this acceptable? Where is the outrage? The action?
It is 2009 and we live in the greatest nation in the history of planet Earth and yet this disease that accounts for 7% of pediatric cancer cases ALSO accounts for 15% of pediatric cancer deaths???
It is the most common cancer in infants....in INFANTS...yet nothing has been done about survival. It would be pathetic if it were not so tragic.
I don't even know if a word exists to properly describe this absurd reality.
And now, as my son strives to be the 1 kid to survive treatment out of his relapsed NB classmates the one thing that stands in our way is, of all things, money.
++++++++
A week from today, on Saturday, May 9, we'll be walking in Central Park to raise funds for neuroblastoma research and treatment at Memorial Sloan-Kettering. If you are in the NY area and can join us on Toby's Team we would be thrilled and grateful. If you can add some money to the pot, well that would be amazing. Please visit www.walkforkidswithcancer.org to learn more or email Reva at walkwithtoby (at) gmail.com. And please consider making a donation to Band of Parents or MagicWater or CNCF or Solving Kids Cancer, organizations with a common cause to help save children's lives.
Thank you.
love,
Mooki + Stephen + Yoni + Toby
Saturday, April 11, 2009
Erin
The world lost a radiant child on Thursday. Erin Buenger, 11 years old and quite likely the first woman president of the U.S. She was brainy, compassionate, beautiful and absolutely crackling with energy and zest. Soon after Toby was diagnosed I found her mother's incredible blog and cannot tell you how many times Erin's attitude turned me around. She did great things in her short life. We grieve with her family.
Thursday, December 4, 2008
Death and Cookies
In the 20 months since Toby got sick, Stephen and I have watched 30 children die. They are children we shared rooms with and children we came to love through their parents’ writings. Their names are Gus, Jack, Max, Katie, Lillie, Lucas, Penelope, Brody. Their parents cope with unfathomable grief.
We think about death a lot, over here. It is forever knocking at our door, lingering in corners, forcing us to ask, “is today the day?”
Death has come into our life in an unnatural way, through the wide eyes of a beautiful child, disguised in creamy skin and laughter that sounds like bells. Death winks at the most horrifying moments. Like when Toby says, “Next August 26th, I want to come back here (the beach in Sanary-sur-Mer, France) and do exactly what we’re doing now, ok mommy?”
Recently I saw an old, dear friend. We haven’t been in touch since Toby got sick, she lives overseas, but she reads this blog. She was the first person in 20 months to ask if we think about Toby’s death. It took my breath away and I laughed with relief. Yes, we do.
But we also focus on the joy of each day. We stare death in the face, make tea, eat chocolate, plant flowers, tickle each other and spend a lot of time playing with trains on the playroom floor. We are fully present, grateful for our children, our family, our community. Death be damned.
So now you know what we think about. And if I haven’t scared you away yet, perhaps you want to help. I have a simple way, and I’m not kidding: Buy Cookies.
Cancer kills more children than any other disease. I’ve said it before, but time is running out for our kids. Every 16 hours a child with neuroblastoma dies. And lack of research dollars bars the way to a potential cure. By buying cookies, you can help to level the playing field. Please visit cookiesforkidscancer.org, order something delicious, and give our children a chance at life.
Thank you.
Love,
mooki+stephen+yoni+toby
We think about death a lot, over here. It is forever knocking at our door, lingering in corners, forcing us to ask, “is today the day?”
Death has come into our life in an unnatural way, through the wide eyes of a beautiful child, disguised in creamy skin and laughter that sounds like bells. Death winks at the most horrifying moments. Like when Toby says, “Next August 26th, I want to come back here (the beach in Sanary-sur-Mer, France) and do exactly what we’re doing now, ok mommy?”
Recently I saw an old, dear friend. We haven’t been in touch since Toby got sick, she lives overseas, but she reads this blog. She was the first person in 20 months to ask if we think about Toby’s death. It took my breath away and I laughed with relief. Yes, we do.
But we also focus on the joy of each day. We stare death in the face, make tea, eat chocolate, plant flowers, tickle each other and spend a lot of time playing with trains on the playroom floor. We are fully present, grateful for our children, our family, our community. Death be damned.
So now you know what we think about. And if I haven’t scared you away yet, perhaps you want to help. I have a simple way, and I’m not kidding: Buy Cookies.
Cancer kills more children than any other disease. I’ve said it before, but time is running out for our kids. Every 16 hours a child with neuroblastoma dies. And lack of research dollars bars the way to a potential cure. By buying cookies, you can help to level the playing field. Please visit cookiesforkidscancer.org, order something delicious, and give our children a chance at life.
Thank you.
Love,
mooki+stephen+yoni+toby
Monday, November 24, 2008
Experiments
One of Toby’s favorite projects is making concoctions. Sometimes this means squeezing tiny vials of food coloring into glasses of water, watching as the dyes swirl into each other. Most days though, we make semi-edible, made-up recipes for our invisible bug friends. These are the ultimate free-form meals, experiments really, determined not by cuisine or season, but simply by ingredients foraged and found. That sad, wizened mushroom with a bit of sheen that’s been rolling around the crisper drawer for weeks? Perfection. The coffee grounds from yesterday’s breakfast? Yes. How about a few shakes of cinnamon, melted butter and a can of diet coke? Mmmm. Cornstarch and its properties are much admired, so we add a few scoops "to make it creamy." Water and oil are measured, then dispensed, as are sugar, chocolate syrup, beans and ketchup. We never know what we’re going to end up with, but we always spread it into a loafpan and bake at 350 for about 35 minutes. And no matter the taste or color or smell, Toby’s imaginary bugs are always happy with the results. Our experiments are masterpieces.
This week we experiment on Toby.
Since February, the team at MSK has treated Toby with what is essentially a relapse protocol: 9 cycles of irinotecan/temozolomide, punctuated by two doses of rituxan and cyclophosphamide, in an effort to lower his HAMA (human anti-mouse antibody) level. Scans have thankfully been clean. Kindergarten began, as visits to the hospital dwindled. Toby started drawing charts and challenging us to races through the house. He built an elevator out of boxes and string, and wrote letters to his friends on an old banged-up typewriter. There have been lots and lots of belly laughs, a mohawk haircut and a G-train costume for Halloween.
But recently our doctors decided that further chemotherapy might pose a substantial risk of secondary leukemia. Since then, Toby has been taking accutane as a stopgap measure, waiting until he can receive more 3F8 antibodies.
Now Stephen and I are not medical professionals, but we know that without transplant and with only 2 cycles of 3F8 under his belt, the chances of accutane being effective are slim. Just last month we had a horrible scare with sudden onset of severe neck pain, just like at diagnosis.
Refractory Neuroblastoma is famously difficult to treat. There is no single accepted course of treatment and parents are generally expected to participate in determining the best therapy for their child. It’s an excruciating process and Will’s Dad has written about it much more eloquently than me.
So after much research and many questions, tomorrow we drive to the Children’s Hospital of Philadelphia where Toby will start a clinical trial with an investigational drug called ABT-751. We don’t know if it will work, but we hope it can keep the cancer away and prevent tumor growth until further antibody therapy becomes possible.
We hope and pray that the results will be as good as our kitchen concoctions.
This week we experiment on Toby.
Since February, the team at MSK has treated Toby with what is essentially a relapse protocol: 9 cycles of irinotecan/temozolomide, punctuated by two doses of rituxan and cyclophosphamide, in an effort to lower his HAMA (human anti-mouse antibody) level. Scans have thankfully been clean. Kindergarten began, as visits to the hospital dwindled. Toby started drawing charts and challenging us to races through the house. He built an elevator out of boxes and string, and wrote letters to his friends on an old banged-up typewriter. There have been lots and lots of belly laughs, a mohawk haircut and a G-train costume for Halloween.
But recently our doctors decided that further chemotherapy might pose a substantial risk of secondary leukemia. Since then, Toby has been taking accutane as a stopgap measure, waiting until he can receive more 3F8 antibodies.
Now Stephen and I are not medical professionals, but we know that without transplant and with only 2 cycles of 3F8 under his belt, the chances of accutane being effective are slim. Just last month we had a horrible scare with sudden onset of severe neck pain, just like at diagnosis.
Refractory Neuroblastoma is famously difficult to treat. There is no single accepted course of treatment and parents are generally expected to participate in determining the best therapy for their child. It’s an excruciating process and Will’s Dad has written about it much more eloquently than me.
So after much research and many questions, tomorrow we drive to the Children’s Hospital of Philadelphia where Toby will start a clinical trial with an investigational drug called ABT-751. We don’t know if it will work, but we hope it can keep the cancer away and prevent tumor growth until further antibody therapy becomes possible.
We hope and pray that the results will be as good as our kitchen concoctions.
Sunday, September 14, 2008
Three Wishes
Oh, hi. I’m so glad you’re still here.
The combination of glorious summer, massive writer’s block and too much death has kept me away. But I’m back, and will try to update with more regularity. I’m sorry for any worry I caused. And honestly, you deserve better. You’ve been so kind and good to us over the last 17 months, and then I go AWOL on you. Not nice. So are we still friends?
Wish 1
In July, we spent a few days in God’s square mile at the Jersey shore. Ocean Grove is home to the Methodist Camp Meeting Association and a slice of delicious bona-fide Americana, if you like ice cream, religion and beach. Thanks to a dear and astute friend (hi Martha!), we revived ourselves with salt spray and spiritual intent.
My aim was profane: get a tan, come hell or high water. But the beach was closed during church, which meant all the time. And I was mesmerized by the Great Auditorium, a beautiful and huge house of prayer, made totally out of wood, with sliding barn doors, curved ceilings and seats for 6000. On Sunday evening at sunset, Toby and I found ourselves inside, where “so be ye holy” blinked in old-timey lights above the altar and a rock band played on stage.
The service was unlike anything I’ve ever experienced: accessible, immediate, simple and incredibly emotional. There were no prayer books, but there was a huge video screen with lyrics and sweeping photos. People stood or sat, some danced. And there were many, many swaying hands in the air. Toby grooved to the constant music. And he said, “Mommy, do it like that,” pointing to the family in the front row who were raising their hands to God. So I did.
The doors were wide open, the sun spilled in. And then this:
And then the band left the altar/stage, and things quieted down. Toby wasn’t in any rush to leave, so I settled back. The minister introduced the time of silent prayer with heartfelt and intimate words. But first the video screen faded to black with white type. It said (and this is from memory, so I’m not doing it justice):
Quiet, so quiet.
And then time and space opened up for me at that liminal moment, when all is possible. I let the prayer wash over me, hungrily, gratefully, putting my heart and words together before the moment passed. And there was Toby with Gus and Max and Liam, and all the children with neuroblastoma who have become my children. And I asked the God that I don’t always believe in to please lighten their load.
As I blinked away the tears, I stole a glance at Toby. His eyes were shining, his lips curved into the tiniest smile.
And then he said,
*****
Toby is still in treatment. Since my last post he has endured 4 more cycles of chemo. He was the third child at Memorial Sloan-Kettering to undergo an experimental treatment utilizing Rituxamab and Cyclophosphamide, in an effort to knock down his HAMA (the immunity he developed to the 3F8 monoclonal antibody treatment). We made two visits to the urgent care center with fevers, and spent four days inpatient. He has become almost completely comfortable with having his port accessed and de-accessed. He has had more hearing loss. And he scared everyone last week with a very high LDH level, which resulted in emergency scans. Thank God, on Wednesday we found out that all scans were negative for neuroblastoma.
Oh, and he celebrated his 5th birthday (wish #2)
and spent a week in France on his make-a-wish trip (wish #3, more to come in next post!)
and started kindergarten(!!!). He has hair the color of sun-kissed wheat, and is up to 48 pounds. He reads SpongeBob comic books, takes showers by himself and eats at least 2 italian ices a day. He has a new invisible bug friend named Mercator, and he’s learning Spanish at school. He is an awesome little boy.
The NB team wants to stop the irinotecan/temozolomide chemo, because of the risk of Toby developing a secondary cancer. They will meet on Tuesday to come up with a new plan. I promise to keep you updated.
Love,
mooki
The combination of glorious summer, massive writer’s block and too much death has kept me away. But I’m back, and will try to update with more regularity. I’m sorry for any worry I caused. And honestly, you deserve better. You’ve been so kind and good to us over the last 17 months, and then I go AWOL on you. Not nice. So are we still friends?
Wish 1
In July, we spent a few days in God’s square mile at the Jersey shore. Ocean Grove is home to the Methodist Camp Meeting Association and a slice of delicious bona-fide Americana, if you like ice cream, religion and beach. Thanks to a dear and astute friend (hi Martha!), we revived ourselves with salt spray and spiritual intent.
My aim was profane: get a tan, come hell or high water. But the beach was closed during church, which meant all the time. And I was mesmerized by the Great Auditorium, a beautiful and huge house of prayer, made totally out of wood, with sliding barn doors, curved ceilings and seats for 6000. On Sunday evening at sunset, Toby and I found ourselves inside, where “so be ye holy” blinked in old-timey lights above the altar and a rock band played on stage.
The service was unlike anything I’ve ever experienced: accessible, immediate, simple and incredibly emotional. There were no prayer books, but there was a huge video screen with lyrics and sweeping photos. People stood or sat, some danced. And there were many, many swaying hands in the air. Toby grooved to the constant music. And he said, “Mommy, do it like that,” pointing to the family in the front row who were raising their hands to God. So I did.
The doors were wide open, the sun spilled in. And then this:
“Mommy, you know what?”
(OK, what have I done? He’s about to accept Jesus as his personal savior.)
“What, sweetie?”
Pause.
(Here it comes. How do I respond?)
“I really like the drummer.”
(Ba-da-dum.)
“Me too, sweetie.”
(Whew)
And then the band left the altar/stage, and things quieted down. Toby wasn’t in any rush to leave, so I settled back. The minister introduced the time of silent prayer with heartfelt and intimate words. But first the video screen faded to black with white type. It said (and this is from memory, so I’m not doing it justice):
“Are you here?
Really here?
Do you think the music was too loud?
Are you thinking about your day tomorrow?
Maybe you don’t feel comfortable.
Maybe you’re tired. Maybe you’re ready to go home.
God is here. Are you?”
Quiet, so quiet.
And then time and space opened up for me at that liminal moment, when all is possible. I let the prayer wash over me, hungrily, gratefully, putting my heart and words together before the moment passed. And there was Toby with Gus and Max and Liam, and all the children with neuroblastoma who have become my children. And I asked the God that I don’t always believe in to please lighten their load.
As I blinked away the tears, I stole a glance at Toby. His eyes were shining, his lips curved into the tiniest smile.
And then he said,
“Mommy, do you know what I wished for?”
And I thought to myself, yes a prayer IS a wish.
“I’m going to tell you my wish even though you’re not supposed to tell wishes. Because I want you to remember it.”
“OK. But you don’t have to tell me if you don’t want to.”
“Mommy, listen. I wished to live four times on earth. I want to live four times."
And then he paused, thinking about it, checking to see if he had put the right words to his deepest, most private yearning. I had my heart in my throat, afraid to breathe, willing myself to remember every second. And then my almost-5-year-old continued:
“Yes, Mommy. I wish to live. Because I really like it here.”
*****
Toby is still in treatment. Since my last post he has endured 4 more cycles of chemo. He was the third child at Memorial Sloan-Kettering to undergo an experimental treatment utilizing Rituxamab and Cyclophosphamide, in an effort to knock down his HAMA (the immunity he developed to the 3F8 monoclonal antibody treatment). We made two visits to the urgent care center with fevers, and spent four days inpatient. He has become almost completely comfortable with having his port accessed and de-accessed. He has had more hearing loss. And he scared everyone last week with a very high LDH level, which resulted in emergency scans. Thank God, on Wednesday we found out that all scans were negative for neuroblastoma.
Oh, and he celebrated his 5th birthday (wish #2)
and spent a week in France on his make-a-wish trip (wish #3, more to come in next post!)
and started kindergarten(!!!). He has hair the color of sun-kissed wheat, and is up to 48 pounds. He reads SpongeBob comic books, takes showers by himself and eats at least 2 italian ices a day. He has a new invisible bug friend named Mercator, and he’s learning Spanish at school. He is an awesome little boy.
The NB team wants to stop the irinotecan/temozolomide chemo, because of the risk of Toby developing a secondary cancer. They will meet on Tuesday to come up with a new plan. I promise to keep you updated.
Love,
mooki
Wednesday, June 25, 2008
If it's Thursday, it must be surgery
Tomorrow morning at 7 am, Toby will be anesthesized and have the central line taken out of his chest, where it has lived for the last 14 months. We've gotten used to his tubies and Toby plans to ask Dr. Laquaglia if he can take them home in a little plastic bag.
More than a year ago as we sat in the nuclear medicine basement at NYU my brother tried to explain what a central line looked like. I remember his strange words, gently falling on uncomprehending ears: "it's like spaghetti noodles, coming out of his chest." With noodles gone, Toby will be able to shower and swim, he won't have to endure painful bandage changes, and we'll finally be able to retire the safety pins that have riddled all his shirts with crazy patterns of holes.
The line will be replaced by an under-the-skin mediport, and a few hours later Toby will receive chemo through a new delivery system.
More than a year ago as we sat in the nuclear medicine basement at NYU my brother tried to explain what a central line looked like. I remember his strange words, gently falling on uncomprehending ears: "it's like spaghetti noodles, coming out of his chest." With noodles gone, Toby will be able to shower and swim, he won't have to endure painful bandage changes, and we'll finally be able to retire the safety pins that have riddled all his shirts with crazy patterns of holes.
The line will be replaced by an under-the-skin mediport, and a few hours later Toby will receive chemo through a new delivery system.
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