Ben began to complain of occasional, mild, and transient headaches in mid-December,
2006. With a family history of childhood migraine, we began to investigate possible triggers. After two weeks
of making sure he was appropriately hydrated and eating regularly, we scheduled a headache consult with his pediatrician.
Before that scheduled appointment, Ben awoke during the night complaining of headache, which alarmed us. His pediatrician
advised a trip to urgent care; there, he was diagnosed with an ear infection, to our great relief. But days
later, at the scheduled headache consult, Ben's pediatrician disagreed with that diagnosis, and scheduled a CT scan -- first
available was February 8th, 2007. Three days later, Ben suffered a mild absence seizure while enjoying himself at gymnastics;
this time, his parents took him to the ER, where he was promptly scanned, and initially diagnosed. The following journal
entries are updates that were sent to family and friends in real time, as events were unfolding. Elapsed time from diagnosis
to death was just three weeks (actually two, as Ben was maintained on life support for his last week). He died peacefully,
cradled by both parents, with his father bravely and lovingly reciting Ben's favorite bedtime story.
At this time, our family is just embarking upon our grief process, and the struggle
is tremendous. As time passes and we explore resources, we hope to expand this website to include a list of resources
we have found most helpful. We also intend to honor Ben's birthday in August with some sort of philanthropic effort,
probably aimed at assisting families of seriously or terminal ill children. Please visit our site again in the near
future if these developments are of interest.
NOTE: This journal was hosted by CaringBridge.
JANUARY 22, 2007 03:38 PM, CST
We've recently learned that Benjamin has brain cancer -- six masses in his brain with an undisclosed number in his cervical
spine as well. We were transported by ambulance to Barrow's in Phoenix this past Friday night and will be here for an undetermined
period of time. His presentation is apparently extremely unusual, eg. so many tumors with basically no neurological impairment
(it was complaints of headache that led us to the investigation and discovery of his cancer), in a child so young. This is
positive in one sense -- his case has attracted considerable attention in the hospital among the resident experts, and we
do feel we have everyone available putting in time and effort to figure out what he has and what to do about it. It seems
they have narrowed down to three potential tumor types, one with a very positive prognosis, one with a very grim one, and
one in between. As I write, Ben is undergoing surgery to obtain a tissue sample for biopsy, and we hope to have some preliminary
diagnostic impression tonight (though definitive diagnosis will have to wait a few days).
This is as close to hell as I can imagine experiencing. Ben is managing okay, but is of course unsettled here and often
asks about home. He has asked remarkably little about why we are here or how long we will stay; he understands we are here
about his headaches and that the doctors will continue to look at him through different means until we can learn more. My
hope is that we can get him back home in a couple weeks. Meanwhile, people here are generally wonderful, are showering Ben
with gifts and attention, and are doing all they can to accommodate our family. We have both sets of grandparents here as
well as my sister-in-law on a constant basis, providing care for Matthew and support for the rest. Friends in our neighborhood
are looking after our animals. We are truly blessed.
I will send updates as I have them, and as I can free myself to get to the computers. Please think of us and send your
most positive and strengthening thoughts and wishes our way. And give your kids an extra hug tonight.
FRIDAY, FEBRUARY 02, 2007 03:46 PM, CST
that an update has been so long in coming. The last two weeks (two years?) have been busy in the worst ways -- I have not
even read all the e-mails we have received. Kevin and I would like to express our most heartfelt thank yous for all the offers
of support, prayers, gifts, favors, etc that we have received; we are truly touched.
When I last
wrote, Ben was in surgery. The biopsy and tumor debulking were basically successful. We did not receive the news we were hoping
for, but learned instead that Ben's cancer type (medullablastoma) is incredibly fast growing and aggressive. With a combinatoin
of chemotherapy, radiation, surgery, and bone marrow transplant, five-year survival rates are 30% epidemiologically speaking.
Regrettably, radiation and surgery are not options for Ben, so his chances are placed in the 15% range. We left Barrows on
Friday with the idea that we would return home, meet our oncologist, spend a week recovering, relaxing, and hopefully doing
some fun things, then begin chemo approximately a week later. The plan for chemo was five rounds, each round being a week
of treatment in hospital then 2 weeks at home, followed by a bone marrow transplant.
Ben did not do well at home. He ranged from somnolent to agitated, did not want to engage in enjoyable activities, complained
of pain regularly, shunned family, and insisted in having his momma wrapped around him at all times. We complained regularly
enough to his oncologist that our consult appointment was expedited. We attended clinic with Ben on Tuesday; at that time,
we felt he was becoming weaker, and had a nasty chest cold, but his oncologist, Dr. Krishnan, (who, fortunately, we really
like) felt he looked stable, and that his emotional difficutlies were related to the high doses of steroids he was being given
to manage swelling.
morning, Wednesday, Ben awoke from a fitful night's sleep with no motor function in his extremities. The clinic advised us
to bring him in, which we attempted, but he quit breathing in the car on the way to UMC. Kevin and Ben's Aunt Kathy resuscitated
him roadside while I got paramedics (regrettably, I pulled off the road in a Verizon dead spot, so none of our phones worked
-- took some frantic efforts to call paramedics). Once at UMC, he was intubated and remains so at this point. A drain was
placed into his brain to relieve pressue, and a monitor placed as well. MRI images were obtained, though only partially as
Ben has not been stable enough to tolerate a full course in the MRI machine. From obtained images, it is evident that one
of his larger masses has grown exponentially in the week since his first images were obtained, and is pressing on his brain
stem, resulting in depressed respiration, heart rate, etc. Further, several more masses are now visible, suggesting that his
disease is everywhere and in full swing. Complicating the situation, his chest cold has progressed into pneumonia.
are some bright spots worth noting. Because he is in the PICU and carefully monitored/maintained mechanically, we have been
able to proceed with chemotherapy and actually proceed a bit more aggressively than planned. And, he is sedated, so should
not notice the nausea, etc associated with chemo. The hope is that that within a week we will observe significant shrinkage
of at least the big mass, permitting him to stabilize in terms of his vitals. Also, the MRI images were able to clearly differentiate
white matter from gray matter, suggesting that he suffered no major permanent damage from his oxygen deprivation. The concern
expressed now is that since he has had no motor/sensory function for days, damage may be permanent even if tumor growth is
slowed. Sigh again.
We are surrounded
by family and very well supported. Nursing care has been fantastic. Our oncologist has remained steady, focused, and reasonably
optimistic. Ben has tolerated his first few doses of chemo wihtout evident reaction. We have had some regrettable power struggles
with Neurosurgery which will probably continue through the weekend, but that's to be expected -- they're surgeons, after all.
Neighbors are holding down the fort at home, and grandparents are surrogate-parenting our other son (who? Oh yes, Matthew...).
Emotions are everywhere and fluctuate randomly. We do welcome visitors, especially those who bring
to all for the support and well-wishes. Noelle
SUNDAY, FEBRUARY 04, 2007 07:02 PM, CST
today and night last night. Lots of desats and associated procedures to correct them. Ben has been stable all afternoon, though,
so we are hoping for an uneventful night. MRI is scheduled for tomorrow am, but Ben has to remain quite stable to be able
to go. Otherwise we will postpone for a couple days, which the oncologist asserts should be inconsequential as far as treatment
and outcome go, but may make us crazy waiting to see if there has been treatment effect. On a positive note, Ben's left lung
seems to be reinflating, and there may be some improvement in the right as well. And, Kevin and I are eating well! (Big thanks
to all the food donors!)
everyone's continued thoughts, prayers, and well-wishes. We feel lots of positive energy coming our way! N
FEBRUARY 07, 2007 04:03 PM, CST
had the MRI late Monday with no solid results until late Tuesday. In a nut shell, good news was tumors had responded, bad
news was there were more tumors than they expected. We kind of heard the news we did not want to hear but had expected to
hear. The hope is not as positive as it once had been. We are now waiting to speak with a few more docs in Radiation and Neurolgy
to help us understand what the chances of "cure" and what the definetion of "cure" means in Bens situation and what kind of
quality of life he can expect. We will have some difficult decisions to make in the next few days and are thankful for all
the prayers and positive thoughts you all are sending our way. We want you to keep them coming to help us keep the strength
to make the best decision for Ben. It is so touching to hear from people, many of whom we have never met, and hear how much
they offer for Ben and the rest of our family. Thanks again for all your support, Kevin
FEBRUARY 08, 2007 11:25 AM, CST
Well, we spent yesterday having the hard talks with professionals
in different specialties, and the consensus is this. Ben's paralysis is permanent, is from the neck down, affects his breathing
areas, and may possibly affect his speech. His disease has metastasized to nearly every area of the brain and spinal cord;
where masses do not presently exist, active cancer cells are circulating. Cure is considered out of the question. Our oncologist
believes he could control the disease for about two years, with continued rounds of chemotherapy and bone marrow transplant.
Of course, this would occur while he was also quadriplegic and vent-dependent. We have decided that the gentlest thing we
can do for him given the compounding awfulness of the situation is to let him go, and to do so now, without further treatment,
so that his passing can hopefully be very peaceful.
Our hearts are shattered, but we take comfort in the observation
that disease progression has been so rapid and suffering has remained a small proportion of a beautiful and fully-lived life.
We feel blessed also to have an opportunity to intervene and end suffering of this child so dear to us. And we are comforted
by the incredible support we have had around us through such painful, painful circumstances. Thank you all so much.
FEBRUARY 09, 2007 12:25 PM, CST
I am Benjamin's Munya, his grandmother. He died yesterday
afternoon around 3:30 pm, about 15 minutes after his tubes were disconnected. Noelle and Kevin were with him, holding him.
We came home to their house last night and they are trying to begin the process of grieving and healing. Although they have
both of our families here, it has helped them to hear from all of you, to know how much each of you care. It is too hard for
them right now to write to you, but they are touched and strengthened by your messages, calls, visits, food, gifts. You have
all been wonderful.
Thank you, Sandra (Noelle's mom)
MARCH 26, 2007 04:30 PM, CDT
One more greeting from Kevin and Noelle, and then we will close this CaringBridge
site. We wanted to offer one last thank you to everyone who supported us during
our worst of times, to those who continue to support us, to those who reached out to us without knowing us well or even having
met us, and to those who have made donations in Benjamin’s memory. Each
warm gesture has given us another foothold into which we can dig in and push off, hopefully toward a place of greater peace
and less suffering. Grieving is unpleasant and overwhelming work, as many of
you have already experienced; having everyone’s support has made such a difference.
and I have been putting together a web site to honor Ben’s memory. The
creative process has been wildly therapeutic, and we are proud of the outcome. Of
course, given that we are perfectionists, and that we are still actively grieving, we’re certain this will not be the
final product, but we are ready at least to share it with others. Please visit
when you have a chance, and share it with anyone you know or come across who may find it meaningful. The address is www.benjaminsbugs.com.
We’ve posted the eulogy from Ben’s Celebration of Life service below; it brought us peace to hear it during
the ceremony, and has continued to do so as we have reread it during moments of private grieving. We decided we would like to share it with those who were unable to attend the celebration, and to allow
those who were there to read it in text, if desired. It also seemed a fitting
way to bring closure to this communication. (Note: The eulogy was thoughtfully
written by Susan Manker-Seale, minister at the Unitarian Universalist Congregation of Northwest Tucson, after spending generous
time getting to know Ben through the anecdotes of the family who knew him best. We’re
forever grateful for her time, energy, and compassion.)
Again, thanks to everyone. Take care.
CELEBRATION OF LIFE
BENJAMIN JACE ROHEN-TRAPP
Born August 6, 2003
Died February 8, 2007
February 17, 2007
Rev. Susan Manker-Seale
On behalf of Noelle and Kevin and their family, I want to thank you
all for being present with them this afternoon to remember Benjamin and to help celebrate his life. That life, though
brief, was very full, very beautiful, and his spirit lives on in our hearts and memories.
Every life has its lifetime. Even though we hope and wish that
every person might live a long and healthy life, this doesn’t happen to everyone. Even so, the death of a child
touches us all deeply, and calls us to come together in love and support for those who feel the loss most keenly. Noelle
and Kevin, their parents Bob and Sandra, Jack and Jackie, feel our love right now, a love which will help them to heal over
time and fill the hole Benjamin left in their lives.
We gather together to share memories, stories which might make us
laugh as much as cry. The laughter is as healing as the tears, so let them come however and whenever they rise up within
us. This is how we grieve and heal, through allowing the tears to be swept away in laughter and to come back round to
tears and a healthy smile.
Children know how to make us smile. Benjamin certainly did.
His parents and grandparents remember his joy and intensity, his tendency to delve deeply into whatever he was doing at the
time and his desire, no, his demand that everyone give him their full and undivided attention. He lived every minute
of life from the day he was born, which, by the way, was in the middle of summer, August 6, 2003, and he wanted those around
him to be fully present with him in that life.
Benjamin had a terrific sense of humor and lived by ritual and routine.
Every time he arrived at his grandparents’ house he would tear apart the couch pillows and pile them up in the middle
of the floor, then stand back with a big grin. Every time. Every time he visited he would take all the clips off
the patio table and throw them in the yard. Every time. It’s fun to be three years old, he might have been
saying. He was certainly showing it.
He had an incredible imagination, and loved bugs and animals and nature.
He loved words, used some long ones, and often would say, “I have a clever idea!” He was enthusiastic, excited
about everything. “Let’s do that!” he would say to Kevin.
He loved books and would ask to be read to often. His favorite
topic was Dinosaurs, but he was moving up to frogs and lizards. Ice cream? Definitely! But his grandparents would
only give him a teaspoonful. “That’s not enough!” he would say indignantly, so they’d give him
a tiny bit more, and a tiny bit more until he was satisfied, not only with the ice cream but with the game and the fun of
Noelle called him her “remora,” after those little fish
that attach themselves to sharks and live off them. Benjamin attached himself to Mom. He imitated her nurturing
by comforting his animals and even “nursed” his lizards like his mom nursed his little brother Matthew.
Ben loved Matthew and was going to be a great big brother.
Ben’s cancer was a surprise to everyone. He had only complained
a little about his head, saying “I think I have a headache.” For a three-year old, what is normal is what
is real, and Ben’s life was just the way it was. The cancer took that life away, but his love, his presence is
very real and remains in the hearts of all who knew and loved him.
Those people are you. You hold the stories of this beautiful
child in your hearts. In a moment, we will ask you to share some of those with us this afternoon. But first let
us all have a brief moment of silence to gather those memories and cherish the life that was Benjamin Jace Rohen-Trapp.
Moment of silence
There were many touching stories posted on the Caringbridge website.
We picked out just a few as examples to share. But first, here is a letter Grandpa Bob and Munya wrote to Benjamin on
February 15, 2007
Dear Benjamin (Grandpa Bob’s Benny Boy and Munya’s Sweetie-pie),
Yesterday, which is usually our day to get to baby-sit you and Matthew,
we were reminiscing with your momma and daddy, your Grandpa Jack and Grandma Jackie, and your Aunt Kathy about our memories
of you. We were going to add some more memories today and send them for Susan to read at the Celebration of your Life,
but we felt an overwhelming need to write to you instead.
How do we tell you good-bye? How do we tell you what a void we
feel in our hearts now that you are gone? How do we tell you one last time how much we love you, how much we enjoyed
your happy presence in our lives? Every day Grandpa Bob says, “I really love that little guy”, or “I
really miss that little guy”.
You were such an intense and happy little grandson living each moment
to the fullest. You demanded constant attention of either Munya or Grandpa Bob when you were baking cookies, playing
dinosaurs, looking for bugs and toads, or reading the several books you picked out each week. We remember that early
on Grandpa Jack and Grandma Jackie nicknamed you the “Little Dictator” – perfect. Sometimes you even
called Grandpa Bob “Wobert!” or just “Bob!”. You never allowed partial attention to the game
at hand and by naptime on the days we had you, we were often exhausted, but so looking forward to doing it again.
Of course, sometimes you were a rascal. Remember when you and
Munya were at the Dollar Store and she was spending too much time looking for a picture frame instead of looking at toys? You
told her to hurry up, but when she didn’t, you said very quietly, “Git over here; I’m tired of waitin for
you.” She thought at first that someone else must have said it, but when she looked at you, you had what’s
known as a Mona Lisa smile and were staring straight at her, waiting to see what her reaction would be. Luckily she was
so stunned that she didn’t start laughing until you were on your way to the toys.
You were always a joy, always. Your life seemed to be on fast-forward
from the instant you were born and you weren’t about to spend one minute of it alone or not be busy doing something. You
were always “upping the ante”. When you played dinosaurs with Grandpa Bob you wanted to know what one said,
then what another replied, what they ate, each one’s name and habits. You wanted every water bug in our pool (yelling
to Grandpa Bob, “Git it! Git it!”), every tiny toad in our yard, every lizard in the desert.
Ben, in thirty-seven years of marriage, Munya never saw Grandpa Bob
cry until your momma told us how sick you were. We adored you and treasured you, as did the rest of your family, every
one of them. The only consolation – which we have to tell you isn’t enough right now – is that we’ll
someday get to hold you and enjoy you again. Until then, we’ll cherish every moment we had with you.
We’ll love you forever,
Grandpa Bob and Munya
The next three are from the Caringbridge website:
Noelle first emailed about Ben's illness, my mind has been full of thoughts of the handful of times I was able to spend with
Ben, as well as memories of growing up with Noelle. This loss is not only deeply sad to me because of how special and innocent
Ben was, but because of how special Noelle is to me.
feel very lucky to have had time with Ben. I will always remember his big exuberant smile, his love of water bugs and horses
(so like his mother), and his enthusiastic dancing at Winterhaven. This last fall, it was so sweet to see how caring and helpful
he was to his little brother, Matthew. I'll remember what wonderful parents Noelle and Kevin were to him--so patient, attentive,
and respectful. They treated Ben like the full-fledged person he was, with opinions and ideas and asking for what he needed.
so sorry to be saying goodbye to Ben today. I want to join in the many voices telling Noelle, Kevin, Matthew and their family,
that Ben is OK now and that you will all be OK too.
Some of my memories of Ben I wanted to share:
I first met Ben and Noelle at First Steps – a parenting group for new Mom’s
with infants. Ben was about 4 months old. We soon became friends outside the group when Noelle (or maybe it was Akiko) asked
if I was interested in joining an informal Mom’s group that had formed with women from another support group from TMC.
There were 6 of us who regularly met with our new babies at various outings to the park, zoo, and desert museum, a Spring
Training game, at Parent Connection playgroups, library story-times or at each other’s homes during the first few years
of our kid’s lives. We shared what we were learning about becoming new Moms and what our kids were doing and most of
all enjoyed watching each other’s children grow up and just being together!
Some of my more vivid memories of Ben are when he started to walk, I remember
I was amazed at how well balanced and confident he was. On one trip to the zoo, I can picture him walking confidently in his
little hiking sandals all over the zoo while the other kids close to his age were still mostly in their strollers. While he
loved to explore, Ben never seemed to just wander away though – always keeping close to Noelle and the group. He was
a well-behaved, mindful little boy – even at that age.
I remember Ben’s great smile and watchful eyes (always taking it all in)!
He was always good-natured with my son, Christian, who is a month younger than Ben. My son was born premature, so he wasn’t
quite up to Ben’s stage of development till closer to 2 years old. When we went to Ben’s house or were at the
playgrounds, Ben didn’t seem to have a problem sharing his toys with Christian or the other kids.
I remember at Ben’s 2nd Birthday party, how excited he was about
his farm cake. We arrived to the party a little early and I remember how Ben got up on a chair and carefully looked at the
cake, sitting on the dining room table, with a look of anticipation in his eyes, for that moment when he’d get to have
a little taste of it. He was patient though, minding his Mom, knowing that he had to wait. I took a great picture of Ben when
he finally had his moment of glory, after blowing out the candles, when the cake was finally ready to eat!
Ben was a sweet, mindful, happy little boy. My family and I will miss him dearly.
remember the first time I met Ben, at 4 months of age, how bright-eyed he was. Even at such a young age, he was a force of
life. It's silly, but he was fascinated by my teeth, purposefully reaching out again and again to touch these large white
things in front of him. I'll never forget that. I've been around quite a few babies now, and have met very few who wanted
to reach out and interact with the world that much, and that purposefully, at just 4 months old!
once described Noelle and Kevin as intrepid parents. When Ben was about 9 months old, they fearlessly tucked him into his
sling and travelled half way across the world to England and Scotland (wonder where he got his sense of adventure from?).
Noelle told me that on the flight over, he crawled across the aisle and untied the shoestrings of the not-so-amused man in
the next seat. There was that ever present purposeful curiosity! I have fond memories of Ben intently listening to bagpipe
music, and we have video footage of Ben looking around a 13th century castle, amazed - calling out "mommy." He always seemed
to want to share the wonders he saw with people.
didn't get to see Ben until he was 16 months old, but remember a trip we all made to the Saguaro National Monument. Ben was walking
so well at that point, and toddled confidently along in front of us. Suddenly he stopped abruptly in front of a pretty large
Saguaro. Hands at his side, he little head went back.... back.... back.... until he could see the top of the Saguaro. I was
completely enamored with that little boy - he was a ball full of personality.
was delightful. By 2 1/2 he'd developed his mother's vocabulary and her ability to describe things in the most exquisite detail.
(Noelle, I mean that in a GOOD way). On that visit, my little boy, 6 months of age, was pretty sick with a stomach virus.
Ben was so sweet and respectful of him, but also very curious about Trystan - particularly the fact that he had to wear diapers
(Ben proudly announced that HE could "hold it." - what a big boy!) On our way to the Desert
Museum, I loved listening to his running commentary about everything
he saw and wondered about.
could never wait to get to see Ben. He was constantly amazing me, and was always so much fun to be with. My mother, saddened
by the news of his death, relayed a story to me. When she went to drop off the pack-n-play Noelle had loaned us, Ben wouldn't
let her merely make the drop-off and run. Oh no! He was so excited about his new swing/climbing structure that he had to show
her and describe it to her. My mom was enchanted.
that to me was Ben - a force of life, and a life so richly and fully led. I will miss him so much.
love to Noelle and Kevin and their family.
Thank you for sharing your memories of Benjamin.
There is a mysterious presence which moves within and around us all.
Some call that presence God, some call it the Spirit of Life, some call it Love. Whatever its name, it binds us together
in our humanity, gives us the strength to hold on to what is good in life, and sustains us in our darkest hours. It
also is what reminds us that we are not alone, and that life is just as it is, allowing us to move beyond our grief back into
a place of peace and eventually toward reconnecting with the joy that is the power of a life well-lived. Benjamin lived
his life well, full of joy. Let us honor his life with joy in the life which each of us has yet to live.
May Peace abide in your hearts. May Love always be your guide.
To conclude our memory-sharing time today, we will release a flock of doves to flight, because Ben would have just
loved to watch them go. We quote friends of ours, Jennifer and Alana, as we say
goodbye; “We will forever keep Benjamin safe and loved in our hearts and hold tight to our precious memories. Our grief knows no boundaries, but neither does our love. May
each day bring a little more peace to us all, and warmest memories of our special little fella. God Speed, Little Ben.”