The Story of the Cancer that Changed Us Forever

NOTE: This journal was hosted by CaringBridge.

MONDAY, JANUARY 22, 2007 03:38 PM, CST

Hi Friends,

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.

Noelle

FRIDAY, FEBRUARY 02, 2007 03:46 PM, CST

Hello Everyone,

I apologize 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.

Unfortunately, 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.

The next 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.

Sigh. There 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

food :)

Again, thanks to all for the support and well-wishes. Noelle

SUNDAY, FEBRUARY 04, 2007 07:02 PM, CST

Rough day 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!)

Thanks for everyone's continued thoughts, prayers, and well-wishes. We feel lots of positive energy coming our way! N

WEDNESDAY, FEBRUARY 07, 2007 04:03 PM, CST

Ben finally 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

THURSDAY, 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.

FRIDAY, 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)

MONDAY, MARCH 26, 2007 04:30 PM, CDT

Hello Everyone,

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.

Kevin 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

For

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 playfulness.

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.

---Ring bell---

Moment of silence

---Ring bell---

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 Thursday:

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:

Since 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.

I 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.

I'm 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.

With love,

MaryAnn Deminsky

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 2^nd 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.

Alisa Neave

Thoughts of Ben.

I 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!

I 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.

I 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.

Ben 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.

I 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.

And that to me was Ben - a force of life, and a life so richly and fully led. I will miss him so much.

My love to Noelle and Kevin and their family.

Heather Willis

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.”