Ngati Awa Festival 2012 – Come and visit the Dream Chaser’s bone marrow stand

We are proud to announce our  involvement in the Ngati Awa Festival 2012. Be part of an awesome family orientated day, celebrating all things Ngati Awa. The Dream Chaser Foundation will be there promoting bone marrow awareness. This is a special opportunity for us and we look forward to representing our son Chace, in his own rohe (tribal area) through the Charity.

The Dream Chaser Foundation and the NZ Blood Service are working together to increase the number of Maori and Pacific Island people on the Bone Marrow Registry. On site, we will have information and forms to be able to register your interest in donating blood and joining the bone marrow registry.

The NZ Blood Service will be in Whakatane from Wednesday 19th December – Friday 21st December 2012. As our goal is to increase bone marrow donors, the NZ Blood Service will now be collecting blood for tissue typing – the first step of becoming a bone marrow donor.

We will also have Dream Chaser merchandise on sale.

[mls_h4]Look out for the big yellow smiley face and yellow tees! pop by and say hi.[/mls_h4]

 

 

 

Roadworks

What a strange feeling, staring at the flashing cursor, a blank white page, waiting for me to add words. This is supposed to be some sort of therapy apparently. As a tough weekend draws to a close, I think now is a good time to test the supposed therapeutic powers of writing.  I’m sure it does have a ‘weight-off-my-shoulders’ effect, however when that weight it so heavy and suffocating, I know that once I have inserted the final full stop at the end of this piece, I will probably have a moment of relief but like all moments, they last for just that, a moment.  However I figure that if I can share some of these moments, however brief they may last, then the purpose may be twofold. It will hopefully help get the words from the confused and nonsensical state in my head, to some form of sense on the page and relieve my heart of a little bit of burden. It also may echo readers thoughts, there maybe points of similarly or perhaps the opposite, it may provide a different outlook on things. But for whatever purpose this serves, if any, it will help formulate and track this phase of our journey.

Days are bittersweet. Behind the scenes we have been working like mad to get the Dream Chaser website up and running and finally after many tempting thoughts to allocate it to the “too-hard” pile, it’s live. Ryan and I were filled with a sense of pride as we now knew, that eyes, other than ours would be looking at it. It’s now tangible (as much as any virtual thing can be) and has catapulted our scribbled notes and thoughts from just ideas to reality.  However, it was also very daunting, it was real now, which only emphasizes the reasoning behind why this website even exists.  Many times I have thought, there’s no way I could possibly be up for running a child cancer charity. Especially when the thought of retreating back to a dark cave would be so much easier. But it has an addictive power. I’m sure many ‘hospital mums’ would agree, this, as in cancer, becomes our normal. What we once thought was normal, is now tainted with various degrees of abnormalness to it. Immersed in a medical world and stripped of routine, merging back into society has its challenges. Therefore we take comfort in other mums (and their families) experiences, happiness, achievements, and also their heartache, angst and despair. My point being, I still receive much strength from my hospital mums, they know the feeling, they don’t have to say “oh I can’t imagine what you’re going through” because they can. So if I have to carry on in life, function and contribute, then I choose to do this – run a child cancer charity. Yes the territory comes with many tears and much heartache but it also comes with great hope, and if nothing else, hope is the fuel that this charity runs on. Hope for a brighter future, as cliche as that sounds, its true! Hope is always the driving force, it’s what keeps parents going, it’s what makes the enormity of situations somehow manageable and hope is what makes it all worthwhile.

Anyway, what are my other options? Return to our old life? A life that seemed so secure, so taken for granted and mapped out. We were greatly mistaken in thinking we had control over any of it. It now seems like a lifetime ago. While I mourn deeply for the life we ‘should’ have had, nothing I can do will change the fact that we have ended up here. So shall I embrace that change?  Maybe I’ll draw upon some more well-known phrases, phrases that infuriate me and comfort me equally. “Everything happens for a reason”, “its fate/destiny/pre-planned (insert any fluffy word here).  These sayings are incredibly powerful – but are very context and time specific. When things are good, theses sayings are reassuring, comforting and make perfect sense. But when things take an unexpected turn for the worse, they transform from inspiring to cruel in an instant. Is it our fate that we have ended up here? Seems a little too romantic to me, but without the thought that there maybe some purpose behind all this, as hurtful as it seems at the moment, all thoughts return to the unfairness of it all, the “why us?” complex – and that is surely unproductive.

So for now, I will embrace what I can control and that is what I choose to put my energies into and the Dream Chaser is what I choose. Ill smile when it makes me smile and cry when it makes me cry.

Te Ara Kingi’s story of courage and hope

 

 Throw me a lifeline!!

Life  throws some curve balls, but every now and again a lifeline is dropped in that brings new hope.

Here we are, almost 2 years down the track since our daughter Te Ara Puketapu Kingi was diagnosed with Myelodysplasia and Vasculitis,     with suspected Lupus.

As a bit of background – she was diagnosed with Acute Myeloid Leukaemia (AML) at the tender age of 3, treated with chemotherapy and went into remission.

However in November 2010 (she’d just turned 8), her health took a downward spiral and little did we know ….. we would be heading back to Starship to fight the monster again.

Te Ara administering her own meds in Starship in May 2011

In order to treat her this time around, she needed to have a bone marrow transplant.  Our Maori heritage put us at a slight disadvantage.  There did not appear to be enough information for people to truly understand the benefits of donating bone marrow.  In a lot of cases unless someone close to you required a bone marrow transplant, people didn’t really think about donating, let alone have a desire to …… and that’s just the way it seemed.

With all of this in mind, we immediately set about on a campaign to get our people to donate bone-marrow in order for us to find a perfect match for our daughter (needle in a million hay-stacks!).  We were fighting against time and every day was precious.  We face-booked, we emailed, we put messages on Tangatawhenua.com, we talked amongst friends and family and did all we could to get the word out there.  We had a huge response and were thankful that people really understood our plight to S.O.D “Save Our Daughter”.

People were donating up and down the coast of New Zealand.  Even friends and family in Australia were eager to donate and see if they could help our girl.  And so it snowballed.  Yes, the campaign had grown into a nationwide hunt for the perfect match.  We even educated people along the way with the pure fact that if they weren’t a match for our girl, you could well be a match for another.  We tried to develop a “feel good” factor into our campaign because surely if you could help save a life, then you were “paying it forward”, to a large degree!

Te Ara and her cousin Awhina giving blood! Good on you Awhina!

A donor was found for Te Ara but unfortunately for their own personal reasons they decided not to donate.  This was hard to face – we had to keep the faith and had no time to wallow in our sorrow – we picked our heads up and decided that there was surely someone else out there.

Time was of the essence, so our Oncologist decided to go world-wide – search the world-wide database.  We distinctly remember the day she phoned to say that they had found a baby stem-cell match in Singapore.  The words “not a perfect match” would stay with us but we had to move fast as the blasts (cancerous cells) were multiplying in Te Ara’s system.  A “lifeline” had been thrown to us and we were going to cling to that and not let go.  With karakia (prayer) constantly in our hearts we gave thanks to the donor and wished him/her well in life.

The bone marrow procedure was performed.

Te Ara receiving her precious stem cells

Te Ara’s stem cell transfusion

Every now and again we pay tribute to those loved ones whose memories remain forever in our hearts.  We live in hope of good health for those here today and trust that the bone marrow register will continue to grow.We cannot begin to explain the importance of “throwing a lifeline”.  We would hope that through our journey, through education, word of mouth and/or experience, people of all ethnicities and religions may begin to understand that by becoming a bone marrow donor, you are providing a “miracle”.  You are literally giving of your life to save another.

Bone Marrow donations have saved lives and will continue to save lives!!

Kia Kaha Kia Toa Kia Manawanui mo ake tonu atu.

Na, Shar & Taniora Kingi

Te Ara September 2012 – happy, healthy and looking awesome!