CJOB interview link

Good evening, everyone.

As you know from the Sept 17 post, I had the opportunity to share some of Harry's story on Larry Updike's Morning Show on Winnipeg's CJOB radio station. Of particular interest to the folks at CJOB was the story about the Bus Stop sign. Simon was able to capture the interview and emailed the link to us.

Have a listen, if you wish.

(We're having difficulty establishing a direct link. Please copy and paste the following URL, and you should be able to hear it in Quicktime.)

http://www.homeontheland.ca/cjob_interview.mp3

Chattynanny - short address

A number of you have had difficulty finding the long address of S. Kelly's post regarding Harry.

Here's a easier way to get there: http://chattynanny.typepad.com

Harry's post is the second one under "recent posts".

Hope that works.

Thanks again to "Chatty Nanny" for her kind and perceptive words.

Discovering Harry's story

We’d like to draw your attention to another blog called Tales from the Tot Tamer. Siobhan reflects on the impact of discovering Harry’s story. Her reflections, filled with grace and gratitude, begin like this . . .

“I have a few posts in draft waiting to be completed, but this post is probably the most special and most important one I will ever post.

This is the story of Harry, and it's a true story, not from my imagination, and I don't believe I would ever have the wits to create a story as beautiful as Harry's.

Last month, I was searching the Free Press archives for an obituary of a friend from Winnipeg. In that search, I came across Harry. I never found the obituary of my friend, but I am incredibly thankful that Harry showed up to tell me about love and hope and the strength of a baby.”

Please read the whole post at

http://chattynanny.typepad.com/tales_from_the_tot_tamer/2008/09/hendrik.html

Interview on CJOB 68

Larry Updike, the host of the Morning Show on CJOB 68, heard about the "Bus Stop Sign" story through a colleague of mine. He has contacted me, and scheduled an interview about how the folks at Transit's Customer Services rose to the occasion, and marked Harry's love of the 10 Wolseley bus by producing his own personalized bus stop sign - and did so on very short notice.

You can hear it this morning (Wednesday, Sept 17) at about 8:30 on CJOB 680 on the AM band.

Gareth

Harry Venema Memorial Fun Fund

The following update from Henry provides further details regarding the Harry Venema Memorial Fun Fund:

The intention of the fund is to honour the major teaching of Harry's life for us, which is to live in joy, thankfullness and community and do so by helping present and future generations of children in the Wolseley community experience the joy of youth.

We envision two components of the HVMFF:

1. a program fund, which would improve the accessibility of underprivileged children to sports programs at RASCC, and
2. a capital fund to help replace the current skating rinks with a modern, safe facility including potentially interior basketball, volleyball, badminton courts etc.

In the event that someone wishes to contribute from abroad, the following information (from the Assiniboine Credit Union) explains how to wire funds to the HVMFF.

Institution:
Assiniboine Credit Union
1033 St. Marry's Road
Winnipeg, MB
CANADA
R2M 3S8

Account Number: 200120212189
Transit Number: 10587
Institution Number: 879
Routing Code (CAD, USD or Foreign): CUCXCATTVAN

Message from Cynthia and Henry

Dearest Family and Friends near and far --

Henry, Lydia and I want to extend our deepest thanks and gratitude to all of you who have held us in your love and care through out these past seven months as we walked our journey with Harry.

Of the many gifts and blessings we received through this journey with Harry, one of the most profound and the one for which I (Cynthia) am deeply grateful was the gift of community. I have so truly learned that we are never alone, we are surrounded by love, and we are all so deeply connected. Thank you all for giving us that gift. We thank Harry too, for without this experience with him, we might never have received such a profound teaching in this life.

Over the past month, we have been slowly decompressing and trying to start to make some sense of Harry's all-too-brief, beautiful, joyful, painful, and intense life. Henry and I know that we need to find the narrative of Harry's life that allows us to treasure the good, honour the beautiful and joyful, understand the pain, and find a place to hold the loss without slipping into the negative or letting it overcome us.

If I may be so indulgent, I hope to continue to use the blog as a place to sort out my understanding of our experience with Harry on his journey of healing. We also hope to post more information about the "Harry Venema Memorial Fun Fund". As well, we have learned a great deal, especially in the last month of Harry's life, about complimentary natural healing approaches to treating cancer, which we would like to share with as many people as possible.

Love, light and blessings,
Cynthia

Cynthia read the following two poems at Harry's cremation service in Aubrey Park:

Nothing Gold Can Stay
Nature's first green is gold,
Her hardest hue to hold.
Her early leaf's a flower;
But only so an hour.
Then leaf subsides to leaf.
So Eden sank to grief,
So dawn goes down to day.
Nothing gold can stay.

-- Robert Frost

Do Not Stand By My Grave and Weep

Do not stand at my grave and weep,
I am not there, I do not sleep.

I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn rain.

When you awaken in the morning's hush,
I am the swift, uplifting rush
Of quiet birds in circling flight.
I am the soft stars that shine at night.

Do not stand at my grave and cry.
I am not there -- I did not die.

-- Mary Elizabeth Frye

Eulogy for Harry

Eulogy for Hendrik Thomas Neudoerffer Venema -- Harry
St. Mary's Road United Church, 10 August 2008

(Cynthia and Henry Neudoerffer Venema)

Cynthia: Harry’s story could be told many ways. The story we choose to tell is one of hope, transformation, and transcendence. A quote that I love tells us that we are not humans having a soulful experience in this life, rather we are souls having a human experience. Henry and I believe that all souls come from God for a particular human experience. Harry was sent from God to be a teacher and a healer and in his short life Harry taught us a lifetime’s worth about joy, happiness, courage, strength, and love. He taught us about living in pure joy in every moment of life, no matter what you are facing. He taught us the true meaning of strength and courage. He taught us about the unbounded nature of pure love.

There are two parts to Harry’s life. The first part of his life is a dream of hope – our hope for him in this world, our unrelenting love for him - the dream of watching him grow up.
Harry’s gifts to me began with his birth. Start to finish from the time my water broke, prophetically at about 9:00 pm on April 3rd, Harry’s birth took no more than four hours. I won’t say it was painless, but it was entirely manageable and exactly the birth experience I had hoped and prayed for.

Harry had many nicknames: “huggy pet,” “hugs-bugs,” “hares,” “hares-bears,” “boinga,” “love-bug”... He liked them all. Harry was quite simply a perfect baby. He was always smiling and happy – he was our Happy Harry. He hardly ever cried and was content just watching the world perched in the crook of his Daddy’s arm. Many of my friends would comment that they would have a third child in an instant if they could guarantee that they would have one like Harry.

Lydia adored her little brother; although she is more than three years older than Harry, she loved playing and cuddling with him and was oddly covetous of his trucks.

Henry: The second part of Harry’s life is also a dream of hope. His unrelenting love for us, his joy and courage and how this transformed our family and so many others who accompanied us on this journey. In late February, Harry was hospitalized with what turned out to be an extremely rare and aggressive Stage 4 cancer of the liver. There was some concern that he would live through the first weekend in hospital, the first round of chemotherapy, and would ever come home. He lived another 5 and a half months and came very close to becoming the first child in the world to ever beat this disease back from a stage 4 diagnosis. Harry had enough time to transform us and so many around us.

There are many words one could use to describe this phase of Harry’s journey – we chose the word exhilarating. The spontaneous outpouring of love and support from our family, friends and colleagues was overwhelming – that was Harry’s doing, his ever buoyant courage and optimism moved people - even people who didn’t know him but could see the infinite love of God in his eyes in the photos on the website so patiently and artfully maintained by his Auntie Kathleen and Uncle Gareth.

Words, meals, information, support, hope always arrived exactly when we needed it, we were held in the arms of a community that bonded around Harry and for that we are eternally and profoundly grateful.

Harry never cried or complained – only when he bumped his head or Mommy or Daddy was out of sight for a split second. Cynthia and I would alternate nights while Harry was hospitalized: you never got much sleep crammed into those narrow pull-out beds in the hospital, but it was easier to be with him there than at home. The closer you were to him, the better he made you feel. Harry’s courage was infectious: he pulled us through all the hard times. I remember saying many times that it was easy to stay so optimistic with Harry in charge; what a brilliant leader he was.

Harry slept through the first round of chemo, laughed through round 2, and danced and bounced through rounds 3 and 4. He learned to walk through rounds 5 and 6, pushing a favorite cart in a loop around the pediatric oncology ward at Children’s Hospital, while we raced to keep up pulling his IV pole – although he never quite gained the full confidence to let go of our hands.

He came home in late March after over 5 weeks straight in hospital, in time to celebrate his first birthday, and then his mommy's and his daddy’s birthdays. He watched many of big sister Lydia’s soccer games, and got to go with her to the wading pool. He loved playing at the Wolseley School playground on the swings and slides. He enjoyed his life and lived it richly, communicating with us through baby signs – "please," "thank you," "bye-bye," "milk," "more," and "where is" -- giving us all kisses, pushing his cars and trucks around, reveling in the sights and sounds of the neighbourhood, the kids, the buses, the playgrounds, the friends constantly dropping by.



We are stunned by the events of these past five and a half months; it’s very difficult to make sense of such an exceedingly rare and deadly disease until you realize that this radiant little angel came into our life to show us how to live.

Today we celebrate the life of our dear, sweet Prince Harry the Handsome. We promise to always honour Harry’s life by living as he taught us, full of hope, living in joy and happiness in each moment. Bless your children -- love them -- exhilarate knowing they love you. Love never, ever dies; Love is endless. God is Love.

Good night sweet Prince. Mommy loves you. Daddy loves you. Lyddie loves you. All your people love you. God loves you.

*********************************

Tribute to Harry’s family

(Kathleen Venema)

After the last intense five and a half months, it didn’t seem right to let this afternoon go by without a short tribute to Harry’s parents and his sister. I’m Harry’s Auntie Kathleen, and I’ve known Harry’s father Henry all of Henry’s life and almost all of mine. I was just a little older than Lydia is now when Henry was born and once I got over being annoyed that I wasn’t the baby anymore, I really got to like him quite a lot. I was, to tell the truth, fascinated by him, and I pestered my mother with questions about him from the moment she arrived home from the hospital:

“Mummy,” I’d ask, “what will the baby look like when he learns to walk? What will he look like when he learns to talk?” “What will the baby look like when he’s one?” “What will he look like when he goes to school?” And, “Mummy,” I asked once, astonished at the possibility, “what will the baby look like when he’s twenty?”

Twenty was as far as my little pre-school imagination could travel and I’m grateful for that now: it would have been grievous to have known already then to ask, “What will he look like when his own baby is desperately ill?”

I didn’t meet Harry’s mother Cynthia until much later. I didn’t meet Cynthia until twelve years ago, when she joined the women’s group that I belonged to at the University of Waterloo, but I was equally fascinated with Cynthia because on the afternoon that we met, Cynthia provided me with the single instance I’ve ever had of psychic match-making. It took me just thirty minutes that afternoon to realize that Cynthia was not just the kind of woman my brother should marry, Cynthia was the woman my brother should marry. Among all the reasons I could and couldn’t have put into words that afternoon, I knew that Henry and Cynthia should be together because Henry would need to learn the strength Cynthia had been honing already for years, the strength to walk life’s most harrowing paths holding fast and holding gently to the ones she loves. And Cynthia, it turned out, would need to learn the great, immeasurable, matchless love of the remarkable father that Henry has shown himself to be.

Since the moment Harry’s illness was first diagnosed, Cynthia and Henry and Lydia and Harry have modeled for all of us what it looks like to walk into the future with unbounded courage and unabashed love, holding tightly to one another’s hands, eyes wide open, and, what’s much harder, hearts wide open, as wide open as any of us could hope to be, to mysteries and miracles vaster than our best imaginations.

Henry and Cynthia’s capacity for love and hope, for patience and endurance, for celebration and laughter, for keeping Lydia safe and secure and full of play but not sheltered from the fact of Harry’s illness – that capacity has stretched open all our hearts and our imaginations, has helped us remember and muse and act on the potential for transformation in each of our own lives. Harry arrived among us already dazzled with joy, and in every moment of his living, he reflected back the spacious, capacious, unbounded love in which his family held him. For every moment of the sixteen months he spent with us, Cynthia and Henry and Lydia matched Harry’s courage in equal measure, and because they could and because they did, he was able, when he needed to, to “walk on,” to what some of us call “heaven” and what Lydia simply calls, “the next place.”

To walk on ourselves, we search for and nourish various forms of consolation. Among the consolations I treasure is the conviction that in the “next place,” Harry is driving the transit buses of heaven, Harry’s driving Route 10 in heaven, Harry’s driving with his trademark grin and his thousand-watt smile, and people who had no idea where they were before he arrived are turning to one another with relief and saying,

“Oh I get it now: we’re in heaven!”

Over the last five and a half months, in what we sometimes think of as a blindly materialistic, coldly computerized, friendless, frightening, and fragmented world, Cynthia and Henry and Lydia and Harry have received support from friends and family, colleagues and neighbours, strangers, weavers, doctors, and bakers, list-makers, note-takers, and play-daters, healers, singers, drummers, pray-ers, and many, many others …

They’ve received more support than any of us could have guessed or hoped for, and everyone here is part of that unpredictable and immeasurable circle, choir, and orchestra of love. In the days and weeks and months and years that follow this one, Cynthia and Henry and Lydia will continue to need what you’ve shown are the unfathomable depths of your support, and I thank you in advance, because I know they will find everything that will be necessary.

Aubrey Park, Sunday, 10 August 2008

Gathering at Aubrey Park on a perfect summer day ...

Order of Service, 10 am Sunday, August 10, 2008.

Welcome (Henry and Cynthia): Thank you for joining us in the celebrations of Harry’s life. We’re honoured to have you here sharing this time and this special place. Harry loved to play here, particularly the swings over there, where we could also enjoy watching the buses turn around.

Opening Prayer: Thanks to the Creator for bringing us all together on this beautiful morning. Thanks to the Creator for the community of support that has sustained our family through this journey with Harry. We ask for guidance and inspiration as we celebrate Harry’s life and mark his cremation this morning at 10.30.

Singing: “Oh the Lord is Good to Me”
Cynthia: "Nothing Gold Can Stay"
Henry: Susan Virginia Hall poem
Music: Gary and Jim
Toni: Story of Prince Harry
Henry: Message from Claude
Cynthia: "Do Not Stand At My Grave and Weep"
Free time for sharing of readings and stories
Candle lighting and bubble blowing
Music: Judith, Simon and Sara
Words to mark Harry’s cremation

Rejoice over everything.
Exult. Exhilarate.
Be glad. Be delighted, elated,
And bowled over with joy!
Frolic freely, hop, hope,
Dance on the dare, cheer,
Champion the little ones.
Revel in the riotous light.
Invoke God without ceasing.
Pray with passion.
Whatever you do,
Do not quench the Spirit.
Take care not to douse
Or dampen the bold blaze
In your depths.
Jump into life.
Hold fast to it.
Give thanks for everything.
For everything,
Even the most misshapen and misunderstood,
Is the disguise of the divine.

- Susan Virginia Hall

Toni's story of Prince Harry

Candle lighting

Lydia and friends on their way to the play structure

Words to mark Harry's cremation ...

All is Well
- Henry Scott-Holland (Canon of England)

Death is nothing at all.
I have only slipped away into the next room.
I am I, and you are you.
Whatever we were to each other, that we still are.
Call me by my old familiar name,
Speak to me in the easy way which you always used.
Put no difference in your tone,
Wear no forced air of solemnity or sorrow.
Laugh as we always laughed at the little jokes we enjoyed together.
Play, smile, think of me, pray for me.
Let my name be ever the household word that it always was.
Let it be spoken without affect,
without the trace of a shadow on it.
Life means all that it ever meant.
It is the same as it ever was.
There is absolutely unbroken continuity.
Why should I be out of mind because I am out of sight?
I am waiting for you,
for an interval,
somewhere very near,
just around the corner.
All is well.

Into your hands O God, beloved Creator of all,
We commend our dear Harry.
And we commit his body to be consumed by fire,
Earth to earth, ashes to ashes, dust to dust.
God bless him and keep him and give him everlasting peace.
Amen.

Some of Harry's extended family

Cynthia's Uncle Ernie and her cousin Mike arrived just in time to join us on Sunday morning. Also pictured here with Cynthia and Henry are Harry's Oma, Norma Neudoerffer from Guelph, Auntie Cecelia from Warsaw, and Auntie Sarah and cousin Roland from Paris.

Roland, Auntie Sarah, Oma Norma, and Auntie Cecelia

Harry's Beppe and Pake, Grace and Dave Venema, with Auntie Kathleen

Harry's Uncle Gary, cousin Gwyneth, Auntie Sandy, and Beppe

Harry's cousins, Judith and Simon and Matthew and Sara

Sara and Simon and Judith also provided music at the playground. Simon and Sara's dad is Harry's Uncle Gareth, who, unfortunately, isn't in any of the pictures because he was busy taking them.

Celebrating Harry's life, 10 August 2008

Dear friends and family,

Over the next little while, we'll be posting pictures and stories and poems and prayers and tributes from the two celebrations that marked our beloved Harry's life. Both celebrations were held on Sunday, August 10th. The first one marked Harry's cremation and began at 10 am at Aubrey Park playground, just a few blocks from Harry's home and a place he loved to play ...

On the way to Aubrey Park ...

Aubrey Park was especially appealing to Harry because it's right next to the loop where the #10 Wolseley bus turns around. That meant that Harry could play on the swings and in the grass and revel in the sight of buses waiting to leave at their scheduled times ...


Harry's love of buses began when he'd wait at the front window with Mummy and Lydia at the end of the day, watching for Daddy to get off the bus. It grew from there to an intense and infectious delight any time he'd catch sight of a bus on the Wolseley route.

When Uncle Gareth told Harry's story to the lovely people at Winnipeg Transit, they put their heads together and took just three hours to produce the authentic and personalized bus stop sign that Henry and Cynthia and Lydia are holding in this picture. The sign has all the components of a regular bus stop: a name right at the top, in this case, "Harry's Stop," and in the bottom left hand corner, where you'd otherwise find the number to call to determine when the next bus will arrive, the Winnipeg Transit folks have inserted Harry's own arrival time, April 4/07.

Henry and Cynthia are deeply appreciative of the wonderful reminder this sign will be, of Harry's undiminished joy each time he saw the bus.



More than a hundred friends and neighbours and family members (some who'd arrived in Winnipeg just in time) joined us for the celebration itself. Among other moments:

Mariah smudging ...

Geir and Jim playing and singing while the youngsters blow bubbles.

Preparing for Sunday's service of celebration

Dear family and friends,

Apparently very little can be done to keep the sanctuary at St. Mary's Road United Church cool, so please dress for very warm conditions. You may want to bring some water to stay hydrated.

There will be pictures of Harry on display in the foyer of the church, and, because a number of people have asked, we'll also have information explaining how you can order a permanent photo of Harry if you would like to do so.

Information about parking and bringing food to the church appears in a previous post.

With continuing gratitude for your support and the many ways in which it's being shown,

The Harry Venema Memorial Fun Fund

Dear family and friends,

In lieu of flowers, please consider making a contribution to the "Harry Venema Memorial Fun Fund," which will support children's sports activities at the Robert H. Steen Community Centre (just down at the end of Henry & Cynthia's street), a place Harry loved and where he made many, many friends.

Please make cheques payable to "Harry Venema Memorial Fun Fund," 21 Glenview Avenue, Winnipeg, Manitoba, R2M 1W3.

Food and parking for Harry's service on Sunday

Dear family and friends,

Many of you have been asking how you can help as Cynthia and Henry and Lydia prepare for Sunday's celebration of Harry's life. We'd like to serve a light buffet lunch after the service and if you could contribute food for that (fruit and vegetable trays, sandwiches, cold cuts, cheese, buns, dainties), it would be very much appreciated.

People from St. Mary's Road United Church (613 St. Mary's Road) will be available to take in and organize the food by 1 pm on Sunday. Deliveries can be made to the St. Anne's Road entrance of the church (there's a sign for the Montessori school on that side), or (if you know where to go) to the kitchen entrance off the back lane that runs off Mager Drive E.

Unfortunately, parking is not available on St. Mary's Road due to ongoing construction.

Parking is available on both sides of St. Anne's Road, as well as on nearby side streets. Note that if you intend to park on side streets between St. Anne's and St. Mary's, it is advisable to enter the street from St. Anne's Road.

Parking is also available:

a. behind the civic buildings on the west side of St. Mary's Road (this is a fairly large lot)
b. along Mager Drive West
c. in the insurance office parking lot at the junction of St. Anne's and St. Mary's
d. in the Global TV parking lot, which is closest to the church (this parking should probably be reserved for anyone with mobility issues)

Thank you all so much,

Harry's obituary

Harry (Hendrik Thomas) Neudoerffer Venema
4 April 2007 – 3 August 2008

After a valiant journey, our beloved Prince Harry passed on peacefully and quickly in the evening of August 3rd. He was surrounded by the love of family and friends in every moment of his life and in every moment of his passing.

Harry was a young boy and a dazzling spirit who loved the Wolseley neighbourhood and the activities at the Robert A. Steen Community Centre. He loved the #10 bus and he delighted in watching the kids at Laura Secord School. He loved Family Fun Night at the community centre and made many friends there. He enjoyed watching his big sister Lydia at dance class and soccer; he played in the wading pool, and thoroughly enjoyed the annual soccer Jamboree, especially the bouncy castle.

Harry loved the Laura Secord and Aubrey Street playgrounds and was an avid Kindermusik participant. He approached each day with a sense of joy, love, courage, and accomplishment. He touched us deeply with the wisdom of his soul, and his powerful courage drew us forward with him into a future full of hope. His struggle with illness brought many people in the community together, forging lasting bonds of love.

Harry will be held forever in the hearts of his parents, Cynthia and Henry, his big sister Lydia, his grandparents Norma Neudoerffer and Grace and Dave Venema, his aunts Cecelia (Jan), Sarah (Christophe), Alexandra (Gary), and Kathleen (Gareth), and by his cousins Stas, Thomas, Sophie, Luisa, Roland, Gwyneth, Simon (Judith), and Sara (Matt), as well as by all the members of his large, extended family, and innumerable friends around the world.

His family would like to thank all the many healers who accompanied Harry on his journey.

In lieu of flowers, a fund in Harry’s name is being set up to support youth sports activities at the Robert A. Steen Community Centre. Please check for details at hendriksjourney.blogspot.com.

A celebratory gathering marking Harry’s cremation will be held at Aubrey Park playground (Aubrey Street south of Wolseley Avenue) at 10 am on Sunday August 10th. A celebration of Harry’s life will then be held at St. Mary’s Road United Church (613 St. Mary’s Road) at 3 pm on Sunday August 10th. Everyone is welcome to join us at both celebrations.

Arrangements by Seasons Funeral Service, 444-5444.

Just for today, I will not get angry
Just for today, I will not worry
Just for today, I will be grateful to my neighbor and every living thing
Just for today, I will work hard
Just for today, I will be kind to others

-The Reiki Principles

Harry (Hendrik Thomas) Neudoerffer Venema (4 April 2007 - 3 August 2008)

After a courageous struggle, our Prince Harry passed away at home peacefully and quickly at 9 pm Sunday night. He was surrounded by family and friends and was loved every moment. A memorial service is being planned for later this week. Details will follow.

In lieu of flowers, please consider supporting a memorial fund which we're in the process of setting up. Details on that will also follow.

Cynthia, Henry, and Lydia

Look for a new post on August 12th

Dear Friends and Family,

This is just to let you know that we will be away from Winnipeg and computers for the next while, returning on the evening of Aug 11. Our next post will likely be on Aug 12, after we've checked in with Cynthia and Henry.

Cynthia and Henry are looking forward to the arrival Saturday morning of a good friend from Ontario (you've no doubt read JRechsteiner's comments here in the blog) who is staying until next week, and Cynthia's mother is coming on Thursday (Aug 7), and staying for an extended visit.

Harry is continuing on the naturopathic treatment plan that's been developed for him, and Henry and Cynthia are thankful for all prayers and expressions of hope directed their way. Just this evening Henry spoke of the extended "orchestra of love" surrounding Harry.

Take good care of yourselves and each other,

Monday morning update

Dear friends and family,

Gareth and I wanted to send you a quick update on Harry's situation, which Cynthia and Henry will elaborate on as soon as they're able. After doing further research on the experimental treatment that was mentioned in earlier posts, Henry was able to alert Harry's oncology team to the disadvantages that that treatment poses for a child with a compromised liver.

As a result of Henry's research, the oncologists determined that it wouldn't be advisable to proceed with the treatment. As a result, Henry and Cynthia are now following a treatment plan for Harry that our Winnipeg-based naturopath is directing in partnership with a naturopath in New Mexico.

Harry is sleeping a great deal, clearly conserving and harnessing his energies in this extensive healing process. Cynthia and Henry continue to be profoundly hopeful and deeply grateful for your prayers and meditations of gratitude and for healing, and we are as well.

Message from Cynthia and Henry

Dear Family and Friends --

Last Friday we received news that we really were not expecting. Harry is doing so amazingly well, we honestly thought the CT scan was going to show he was in remission or at the very least that we were ready to start our journey seriously exploring the transplant option at Sick Kids in Toronto.

You can imagine our shock at finding out that the cancer is no longer responding to the ICE/VAC chemotherapy combination.

The scan revealed that the one spot in his lungs has grown, not shrunk and there is an additional nodule. As well, there are several new spots in his liver and new clusters in his lymph nodes in his chest and stomach. So we are not back at the beginning but this is certainly a setback. No journey worth taking is without its challenges.

After regrouping on the weekend, we are feeling very strong and positive and full of hope and ready to face this next step in our journey of healing with Harry.

Now, more than ever, we need your most positive thoughts, prayers and meditations for Harry's complete recovery. We firmly believe that there is LOTS of room for God to work a miracle. We also believe that we are working in partnership with God on this and that the Divine responds to our most positive thoughts, intentions and prayers.

Please, no negative thoughts about Harry - he is such a strong little boy with a fierce will to live among us for a very long time. If you find yourself having a negative thought, please immediately cancel it and replace it with a wonderful, positive thought of Harry learning to ride a trike next summer, chasing his sister, or whatever positive image you can summon!

From the start we have known that we are dealing with such a rare cancer (there has been only one other Rhabdoid Liver Tumour treated in Winnipeg in 20 years) that we have been in the realm of the unknown from the start. That also means we are in the realm of unlimited possibilities - included unlimited POSITIVE possibilties.

Henry and I also strongly believe that while allopathic ('modern'/western) medicine is very powerful, it is not the only path to healing. There is so much that allopathic medicine does not know - especially in Harry's case.

We are pursuing several different new treatment options for Harry. First off, we will be starting a Phase I chemotherapy regime on Friday.

Harry will be given three new chemotherapy drugs:
Vincristine, Irinotegan, and Temozolamide

This chemotherapy regime can be done at home, so fortunately, we do not have to be in the hospital for this. The vincristine is given as a one shot dose and the Irinotegan and Temozolamide are given orally for five days.

Phase I clinical trials are generally done to demonstrate that a combination of drugs are safe to give together. Harry is not actually part of the Phase I trial - it is closed and the trial has demonstrated/established a 'safe' (in terms of tolerable toxicity) doseage for this combination of drugs.

In theory, this combination of drugs should have a good effect on Rhabdoid tumours. Harry will be the first patient with a Rhabdoid Liver Tumour to receive these drugs. So his doctors really have no idea what the response will be. However, he has responded very well to chemotherapy so far, so that is a good place to start from. He actually had the Vincristine as part of the VAC therapy, but it is thought to give a different response in combination with these drugs.

Phase I clinical trials are how cancer cures are found - so we are full of hope that Harry is going to make a major contribution to modern medicine by helping to discover a new treatment for Rhabdoid tumours.

In conjunction with chemotherapy, we are working with two natropathic doctors, one here in Winnipeg and one in New Mexico. We are currently working out an aggressive natural medicine regime to also give to Harry. So far we are giving him Rishi Mushroom and Green Tea extract, both of which have been shown to have very positive effects on cancer. Once we know exactly what his natropathic regime will be we will let you know.

Remember, hope and fear cannot co-exist. So banish fear and doubt and be full of joyous hope.

Henry and I both strongly believe that our souls come into this human existence for a reason and to love, laugh and learn through joy and pain together and in community. Harry's soul is on a very difficult path, but we pledge to continue to walk with him with grace, joy, happiness and love. So much love. We are honoured to walk this journey as Harry's parents.

Now is the time to open our hearts to the possibilities of Divine love and to let God's miracle of love flow through each of us, as it connects us all together.

Love,
Cynthia, Henry, Lydia and Harry

CT scan results

Dear friends,

This past Friday (18 July), Cynthia and Henry received the results of the CT scan that Harry had had last Monday (14 July). We're sorry to have to report that the results were not what any of us had expected, given Harry's stellar progress over the past 4 1/2 months. The CT scan shows that the liver tumors have increased and that the cancer has returned to Harry's lungs and his lymph system as well. Harry's medical team have concluded that the current treatment plan is no longer effective and they cancelled the round of chemo that had been scheduled to start on Friday.

When Henry and Cynthia have had a chance to think through the options now open to them, they will be posting a more detailed message. Please keep them all in your thoughts and prayers, as you are in ours.

Saturday morning: there's no slowing down Harry's spirit

At long last, an update on Harry

But just before Henry's report, some recent pictures taken on Sunday, almost at bedtime:

"I can't go to bed yet, Dad, Uncle Gareth and I need to play!"

Hugs are the best!

Lydia and Groovy Girl = two groovy girls!

"I just learned to climb the stairs ...

... by myself!"

And now it's really bedtime ...

Henry's update

Last week we received a report from a Child Oncologist associated with the Morgan Stanley Children's Hospital in New York. The report confirmed that Harry's case is very rare and the prognoses are typically not very good. We're disappointed that the report focused more on past experience with this disease, and not on Harry's actual response to treatment thus far.

Rhabdoid tumours are very rare - they occur most commonly in kidneys yet make up only 1% of all kidney cancers, so the actual number of cases comparable to Harry's case is not documented, but is most likely exceedingly small and the report only refers to rhabdoid tumours generally.

The bottom line is we're pretty much in uncharted waters. The day after we got the report I found a scientific article in the Journal of Neuro-Oncology describing the case of a girl age 7 when diagnosed with a rhabdoid brain tumour. She is the first documented long-term survivor and what's quite amazing is the article specifically mentioned the role of complementary and alternative medicine (prayer, spiritual healing, vitamins, herbs and dietary changes).

I'm sure her parents were given a pretty bleak prognosis too. The report that we got last Thursday confirmed what we knew already - Harry's is a very rare and difficult cancer - what it doesn't capture is the enormous strides he's taken thus far, his joy of being, and his fierce will to live.

Last week Thursday we also heard back from SickKids hospital in Toronto - they will consider him for surgery if the next CT scan shows that the last remaining lesion on his lungs is gone. They have to be sure that the metastatic disease is under control before they will consider surgery. Now more than ever we ask for your prayers and meditations that Harry continues to respond to treatment, that the primary tumour on his liver continues to dissolve, and any metastatic lesions disappear.

Incidentally the girl who survived the brain tumour was taking the following supplements (many of which I'd never heard of):

essiac tea, pau d'arco, shark cartilage, Reishi mushroom, vitamins A, C, E, and B5, lecithin, manganese, potassium citrate, zinc, alfalfa herb, asparagus, black walnut hulls, dandelion root,dong quai root, kelp plant, lemon bioflavonoids, licorice root, marshmallow root, parsley, parthenium root, schizandra fruit, ginseng, thyme, uva ursi leaves, dimethylaminoethanol, ginkgo biloba, grape seed extract, L-glutamine, Melissa officinalis, slippery elm, flax seed oil, chamomile, fennel, feverfew, hops, passion flower, cleavers, red clover, stillingia, and prickly ash.

Harry's still nursing and between his diet and Cynthia's diet he's getting some of these supplements - I'm going to be discussing the longer list with our herbalist and naturopath this week. Any comments on these supplements are most welcome.

With much love to you all,

Henry, Cynthia, Lydia and Harry.

NB: Please note that we'll be posting the article that Henry mentions here in a few days time, so do check back soon for that.

More good news (message from Henry)

Hello everyone,

We wanted to let you know that Friday ended on a high note. I was in touch with Sick Kids Hospital Transplant program in Toronto and they have received Harry's referral from HSC. Apparently his case is being reviewed by a top-notch transplant surgeon in Toronto and by a haemotologist-oncologist at Morgan Stanley Children's Hospital in New York.

We're very pleased with the "Best Doctors" program available to us through our benefits package at IISD. Best Doctors has been extremely helpful getting us connected with experts in Toronto and New York.

Harry's scheduled to start his sixth chemo round next Friday. We're confident that Harry will be an excellent candidate for transplant if his liver tumour is static or smaller and his lungs and lymph nodes remain clear. And we're very grateful for all your prayers and meditations that will ensure this outcome!

With much love to you all,

Henry, Cynthia, Lydia and Harry

Soccer windup

Last Wednesday, June 18th, Lydia's soccer season ended with a big party at the community centre in our neighbourhood. To no one's surprise, Harry enjoyed the action as much as anybody there ...

Rarin' to go ...

"Look Harry, a whole castle just for bouncing! How great is this?"

Even happier than his usual happy self

Soccer = FUN
Lydia has a trophy and a great team photo to show for her efforts this season.

Harry's still home (message from Cynthia)

Hi everyone,

Well, Harry and I went to clinic this morning with the trunk of the car full of our 'hospital stuff', expecting to be admitted for Round 6 of chemotherapy, a 48-hour VAC round. However, while his white blood cell count and neutrophils (related to WBC) were good, his platelets were too low (58) to start chemo today (they need to be at least 75). The GCSF shot he gets to encourage WBC regeneration has the side effect of supressing platelet and hemoglobin recovery. So, in order to give his platelets a chance to recover more, we'll wait another week to start the next round of chemotherapy. That means Round 6 will start next Friday (June 27th) instead and we'll be in for the weekend, till Sunday night (June 27-29).

Harry's paediatric oncologist said this is nothing to be concerned about, and really par for the course by Round 6 of chemotherapy. On the upside, giving his counts another week to recover should hopefully mean we'll make it through this VAC round without a bout of febrile neutropenia. So we have an extra week at home. Harry is feeling so good it will be nice to have an extra week to enjoy life at home.

Since his WBC / neutrophils have risen Harry is doing really well. He has recovered nicely from his episode of febrile neutopenia last week. His counts are good and his energy level and joyous spirit are just amazing. He is a constant source of wonder for us - he approaches each day with such pure joy and love. No matter how he feels, he always has a ready smile for us.

He is so close to walking we can all taste it! He loves to now push his 'hippo car' up and down the sidewalk all by himself now. He can stand on his own for a second or two and can take a wee step between two people if 'safe hands' are very close by. He is also communicating constantly these days. He signs, "please", "thank you", "all done", "hello / bye bye", "where is", and "hand washing". He also blows the most wonderful kisses (and gives real kisses too). He points and says "dat dat dat" when he wants something, and eagerly points out to us the things he sees and recognizes in his world. He continues to just love the bus and his ears perk up when he hears it going by the house - he looks and points at the window. Lawn mowers and motorcycles are two other recent fascinations. Could he be a boy???

He still gets all of his nutrition via the feeding tube and nursing, but he is really very interested in trying to eat, or at least go through the motions, which is very important. In the morning he demands a cereal bowl and spoon just like Lydia - he is getting very good at dipping his spoon in milk and getting it to his lips. He wants to have a bite of whatever we are having, though he usually spits things out rather than swallowing; that will come when we are done with the feeding tube. It is great that he is still interested in trying to put food in his mouth. He also thinks it is fun to feed Henry and me finger foods.

Harry also seems to be a decided south paw: he does everything with his left hand, much to his father's (and fellow lefty's) delight. He has grown an inch - he is now 30.5 inches (77 cm) - and though his weight is holding steady at 20.6 lbs (9.3 kg), he looks chubbier and very healthy. He has also now transitioned to just one afternoon nap a day. He's still up once at night to nurse (around 3 am), but most nights does go back to sleep and sleeps till 7 am. It will be soooooooooooo wonderful when he finally sleeps through the night! But this is one step closer, for which we are so thankful!

Lydia is very happy to have Harry home for another week. She is sad every time he goes into the hospital. The day before / day of his admission is always hard for her. But she really does well overall and manages to adapt and stay cheery most of the time.

As for Henry and me, it always causes us an initial feeling of panic whenever something new or not exactly expected crops up. We are both feeling pretty anxious and frustrated by the fact that we still have not heard anything from Sick Kids. We figure we had better be a squeaky wheel - we have the number for the paediatric liver specialist here in Winnipeg and so we are going to start bugging her directly to see what is up. We would just like an update to know where they are at in their decision-making process.

We really believe that now, more than ever, we need to ask for everyone, everywhere who is praying for, meditating on, or thinking positive thoughts about Harry to really, really, really intensely focus your prayers/meditations/positive thoughts on a very clear intention of complete healing and recovery for Harry.

Henry and I truly believe in the healing power of prayer. So we humbly ask that everyone hold and deeply BELIEVE in your hearts a very clear intention that Harry is cancer-free, that the tumours are gone and that he is completely healed and back to full-health.

As we continue to step one day at a time on this journey of healing, we are deeply thankful for all of your love and support. We BELIEVE deep in our hearts that Harry is healed and we are journeying one day at a time to that place of complete healing. We ask you to truly believe in Harry's full recovery and every time you think/pray/meditate on Harry hold this belief in your heart.

Thank you! Have a wonderful week.

Love,

Cynthia, Henry, Lydia and Harry

Harry's home!

Dear friends,

We're delighted to report that Harry was discharged late yesterday afternoon (Friday) with another glowing report about his progress from his oncology team. We're thrilled that he'll be home to celebrate Fathers' Day with Daddy Henry and the rest of the Venema clan on Sunday.

The oncologists' report, doesn't, unfortunately, change in any way Harry's somewhat precarious situation vis-a-vis the possibility of a transplant. Because the cancer has invaded all four lobes of Harry's liver, the possibility of a surgical excision is almost non-existant, which makes a full transplant the only real logical next step. The decision to put him on the transplant list still rests with the doctors at Sick Kids in Toronto, though, from whom nothing has yet been heard.

We'd be grateful for your good meditative energies as we imagine our way forward from here ...

Back in the hospital and needing your support (message from Cynthia)

Hi everyone,

Yes, we're back in the hospital with Harry this week: we had to be admitted from clinic Tuesday, because his counts were extremely low and he had a fever. His white blood cell count was nearly zero (0.04) and his hemoglobin was 70, so he needed a transfusion on Tuesday and he had platelets transfused Wednesday (his platelet count was at 9 and it’s supposed to be at least 100). Poor Harry: his counts were so low on Tuesday the lab phoned up to the clinic to check if there could possibly have been an error in the blood sample. Harry is feeling pretty under the weather: he has been nauseous and fussy – although, as usual, “fussy” for Harry is really not very fussy at all. He’s also been having trouble keeping down his feeds, so we have switched to feeding him very slowly and continuously to try to slowly get food into him.

His oncologist said that this is to be expected: by now his bone marrow is starting to “get tired,” so it will take him longer after every round to recover. I’m expecting now that especially after each ICE round, we’ll be admitted for febrile nutrapenia (fever with low blood counts). So far nothing has grown in his cultures, so the fever seems to be just a side effect of the low blood counts (and the doctors don't really know why that happens). They want to keep us in for at least 72 hours, though, till his counts start to recover a bit. And although it doesn’t always look like it to us, Harry’s oncologist and the oncology nurse tell us that he is doing amazingly well and that we should be thrilled at his progress.

Please help us do that by keeping us in your prayers: right now, we’d just like to see all of Harry’s counts go up so that he’ll be able to come home on Friday.

And, of course, we’d really really like to hear from the doctors at Sick Kids in Toronto. The waiting to hear from them about the possibility of a transplant is agonizing. We feel pretty powerless, right now, without a sense of where we’re going, exactly, and how we’re going to get there. I keep telling myself, though, to have faith that Harry is healed, that God has healed Harry and I have to trust and be patient, live each day one day at a time, not to focus on the future, just to know that God will take us there and the journey will unfold as it is meant to unfold.

Even though that feels very, very hard right now.

But you know, despite how crappy Harry’s clearly feeling, he’s walking better than ever on the ward. He can now push his favourite little cart steadily around the ward by himself; all I have to do is manage his bundle of cords and pull the IV pole along. Next job will be teaching him to steer!

Which seems only a fair exchange: as always, Harry’s fullness of joy, life, love, and laughter makes everything easier on us. Through all of this he never stops smiling and laughing. Jesus said let the little children lead us, and that is just what Harry keeps doing, our constant source of inspiration.

Love to you all and grateful thanks for all the ways your prayers and meditations support us,

Cynthia

Relay for Life Photos

Harry's back in the hospital briefly

Hi everyone,

Henry just phoned to let me know that Harry was re-admitted to the hospital earlier today with a bit of a fever, a similar scenario to what we went through six weeks ago at almost exactly this stage of the ICE round of chemo . According to Henry, Harry is already "back to his usual chipper self," so we hope to be reporting soon that all the Neudoerffer-Venemas are back home and together.

Thank you all for your continuing thoughts and prayers, and do stay tuned for those Relay for Life photographs (it's a busy week in principal-land this week, but those pictures will get posted) ...

Relay for Life report! (pictures to follow soon)

Dear friends,

Jodi just wrote in with the following account of the Relay for Life and a mitt-full of great photos. Please check back here soon to see those pics, since the technical and aesthetic genius behind this blog is temporarily occupied by his day-job ...

In the meantime, a rousing cheer for the Healing Harry Team and their inspiration for us all!

***********************

The Relay for Life was held Friday night in gale force winds and pouring rain. Harry and his soaking family walked the track for the survivor's lap - something he is surely doing! It was very special and very powerful to be part of this experience and see just how many people BEAT cancer. All those yellow t-shirts are the folks who made it!

Cancer research makes a difference and saves lives. We raised over $1700 for Healing Harry.

Thanks to those who pledged and participated. Hats off to Cynthia, Henry, and Lydia for braving the elements. And of course, our wee Harry who shows us everyday that while this journey may feel long and hard, it can be done, is being done, and is much easier with that award winning smile. One look at that signature grin and we'll do anything.

All our love and healing powers,

Jodi, Marla, Amber, and Caitlyn,

and the rest of the Healing Harry Team:

Jodi's mom,
Marla's mom, and
Caitlyn's husband and son

The Relay for Life starts tomorrow

Jodi Lee has sent another reminder of tomorrow's Canadian Cancer Society Relay for Life, in which a "Healing Harry" relay team will participate. The relay is a 12 hour relay from 7 p.m. to 7 a.m. - an overnight event. Please support the Healing Henry team by making a donation at the following website. Simply copy this address (by right-clicking), and paste it in the URL address line. That'll take you to the site, where you can make a donation.

http://convio.cancer.ca/site/TR/RelayForLife/RFL_MB_Winnipeg_?team_id=47300&pg=team&fr_id=2222&fl=en_CA&et=6emgN5OGq2TE17qd5T7_Gw..&s_tafId=7067

Go Moms Go!

Pray that Harry gets on transplant list

Good evening friends,

I just got back from the hospital. Kathleen, who usually writes the blog, is in Vancouver at a conference, so I’ll take a turn tonight. This is an urgent appeal from Cynthia and Henry to keep Harry, their family and especially also the medical specialists both in Winnipeg and Toronto in your thoughts, prayers and meditations during the next days. The specialists have an important decision to make, and your support and positive energy, which has been powerfully at work in Harry’s healing journey, is needed to support them in their decision-making.

Cynthia and Henry had a consultation today with the pediatric liver specialist – the same one who back on that February Saturday determined that Harry’s liver had a very serious illness. She will be contacting the Hospital for Sick Children in Toronto tomorrow or Thursday to inquire about putting Harry on the waiting list for a liver transplant. This is good news, in that Harry’s healing has progressed to a point where this important step to “apply to the waiting list” is being taken. The metastatic disease has essentially been dealt with in the lymphatic system and the lungs (the spot in the lung is only 3mm in size), so this is the surgical consultation Henry and Cynthia have been hoping for.

The liver specialist explained, though, that she isn’t able to say with certainty how Sick Kids will respond. No one at HSC has much experience with Harry’s very rare type of cancer, and so have few if any precedents to go on. The oncology team believes at this point that a transplant is the best option, because all four lobes of the liver have been affected by the Rhabdoid tumour.

During my visit this evening, Harry woke up, and fussed until he threw up quite a bit of his formula. After crying for about a minute or two, he looked around and beamed his patented toothy smile across the room. Cynthia spoke about the quite amazing growth and development Harry has experienced during the past 4 months, in spite of his illness. For example, he’s trying to walk; he’s clearly impatient to communicate; when asked: “Where’s Lyddie’s or daddy’s picture?” he happily points to the appropriate picture on the wall (when asked about mommy’s picture, he gets a little confused, because she’s right there in person); this evening we took delight in his interest in the buses that pass by on Sherbrook Street – when he sees a bus, he knocks on the hospital window and points. Cynthia explained that they do this at their living room window at home, where they can see the bus-stop where daddy gets off at the end of the day; he’s also started initiating the playing of peek-a-boo. He pulls a blanket over himself, and playfully peeks out. These are all signs of a very healthy and normally developing little youngster. The liver specialist was also struck by how big he’s gotten, and how healthy he looks.

Please pray that Sick Kids Hospital places Harry on the liver transplant list. Henry and Cynthia want you to know how very grateful they are for your ongoing love and support.

Overwhelmed with gratitude

Greetings from Henry:

Harry entered hospital for his fifth round of chemo - the 5 day ICE round - on Friday, the first two days have gone well with only a little nausea.

The last CT scans showed more very good news, Harry's lymph nodes appear clear on the scan, and one small spot on his lungs remain - it may only be scar tissue. His liver continues to shrink - though not as dramatically as after the first two rounds.

As Cynthia and I digest the results of the CT scan, and that we can now start discussing surgical options, we are overwhelmed with gratitude at the unrelenting kindness that our support community provides. The light in Harry's eyes, his determination to push his little scooter all over the ward - with me scrambling to keep up with his IV pole (it's very cute) reflects the strength we all provide him.

We're now focused on helping Harry heal the single lesion in his lungs and shrink and remove the remaining cancer from his liver as this will improve all surgical options and aid in his recovery. Thank you for all your prayers and meditations.

Love to you all,

Henry and Cynthia

Great CT Scan results!

Hi everyone.

I just had a very brief phone conversation with Henry. As you know from previous posts, Harry is back at Children's Hospital for his 5th round of chemo (this is one of the 5 day sessions), and yesterday they received the results of the CT scan done on Tuesday.

The results:
1. the tumor on the liver has shrunk again since the last CT scan
2. the lungs have only one spot left (Henry said that at first there were around 20 lesions), and that spot in the lungs may in fact be scar tissue
3. the lymph nodes are CLEAR - they're CLEAR!
4. the doctors will begin to discuss surgical options with Cynthia and Henry early next week.

Wow, this is great, great news, and we'll be sure to provide more details as we learn of them.

Sunshine, BBQs and just hanging out

BBQ dinner at our place
(May 18)

Last Sunday, Hendrick was a guest of honour at a BBQ at our place. Joining in were his Mummy and Daddy, big sister Lydia, hosts Auntie Kathleen and Uncle Gareth, as well as his "step-cousins," Sara and Matt (Sara's in picture #3) and Simon and Judith (picture #8).

"I love my Mom"

"Hmmm, so many drawers, so little time."

Just hangin' on the boulevard ...



Family BBQ - let's get happy


Cheese!

Heading home for bedtime ...


"Happy Hour"
Friday afternoon on Ruby Street
(May 23)

At the end of a busy week, is there anything better than hanging out in the front yard, starting the weekend off in style? Speaking of style, check out Harry's new shoes!

I love having my belly rubbed!

"Lemme just push this one button here!"


Tired, but happy
(May 27)

Harry had a CT scan today. Though Cynthia told us that he was very upset as they prepped him for the procedure, you can see that he ended his day tired but happy. CT scan results are expected on Friday. Here's hoping for the best news possible.

"Hey mom, where's my PJ top?"