What is bone marrow and how can I help?

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Bone marrow was a foreign term to us. What bone marrow is and what it does is not widely known but for those people receiving treatment for blood disorders, the medical descriptions of bone marrow become second nature. Parents and children alike learn and become fluent in a second medical language. Below is a description of what bone marrow does and why raising awareness about bone marrow donation is one of the Dream Chaser’s major goals. It is written from our perspective, using our language, and from our experience. For more detailed information, we have included links at the bottom of the page.

What is bone marrow?

Put simply, bone marrow is the stuff that fills our bones. It is the place where all of our blood cells are developed.  Red cells, white cells and platelets are the three main types of blood cells in our bodies, and they all play a vital role in keeping our bone marrow and bodies functioning properly. For example, red cells contain hemoglobin which are the oxygen transporters and carbon dioxide “expellers” (taking the carbon dioxide to the lungs to be breathed out). White cells are the army that fight foreign threats like infections and platelets are in charge of ensuring the bloods clotting mechanisms are functional. The analogy that is often used to visualise the process is that our bone marrow is a “blood cell factory”. Cells only have a limited life span so a healthy body is constantly replenishing it’s stocks.

What is a bone marrow transplant?

One way to treat some blood cancers and other immune disorders is to get rid of these unhealthy cells (which is what chemotherapy does) and replace the marrow with a healthy cell population.  The job of these new cells is to rebuild the body’s immune and blood systems in order for the body to function properly as a whole.  A common way to do this is through an “Allogenic” transplant where someone else’s healthy and compatible cells are literally injected into the recipient’s body. While the process sounds intense, it is not as surgically invasive as the word ‘transplant’ suggests.  Instead, it’ similar to a transfusion where a portion of the donors’ healthy cells are extracted and then intravenously given to the patient similar to a blood transfusion. There are two types of transplants, a sibling allograft transplant or a matched unrelated donor transplant. The first type is when a sibling of the patient has a compatible tissue type, however if this is not an option, a person who is a suitable match, becomes the donor for the transplant. In the case where neither of these are an option, patients may receive a stem cell transplant. This is where stem cells have been collected from an umbilical cord of a baby and stored until needed. This is known as a cord blood transplant.

How can my bone marrow help?

Only one in three patients has a matched family member. This means that the other two patients have to search the international donor database and hope for a match. Your ethnic background plays a big role in whether you are likely to find a match. Currently there is about 19 million people on the donor list, however only around 7000 of those are of Maori and Pacific Island ancestry, which significantly decreases the likelihood of finding a match.

If you have Maori or Pacific Island ancestry you could save a life by joining the bone marrow donor database. You may never be called as a match but if you do then you could mean the difference between life and death for the patient.

 

[mls_h2]NZBMDR are currently recruiting:[/mls_h2]

  • People aged between 18-40 years with Maori or Pacific Island ancestry or an ancestor from any NZ ethnic minority group (or)
  • People aged between 18-60 years (regardless of ethnicity) who have previously been tissue-typed as a platelet donor or for an overseas bone-marrow registry and
  • Are able to meet the NZ Blood Service requirements to donate blood
  • Are willing to donate bone marrow to any patient anywhere in the world

What is the process?

It’s simple! Just visit New Zealand Bone Marrow Donor Registry (NZBMDR) and register your interest. Here you will be asked to donate one unit of blood. You will be asked to complete a NZBMDR consent form allowing blood to be taken for tissue-typing tests. Once you are on the list, thats it! if you are found to be a match, then there are two types of bone marrow donation procedures:

Peripheral Blood Stem Cell collection (PBSC) – this is where your stem cells are collected from a vein and then inserted into a machine. The stem cells are extracted from the rest of your blood and then this blood is pumped back into you. This procedure can take up to 3 -4 hours. Prior to the actual transfusion you may be given a medication known as GCSF which attempts to boost stem cell numbers since naturally the body does not create a large amount.

Pelvic hip bone collection – this is where bone marrow is collected in a syringe from your pelvic hip bone under anesthetic. The operation usually takes about two hours and often requires a night in hospital as a precautionary measure. Healthy bone marrow regenerates quickly so the patient can usually resume normal activity within a few days post operation.

I want to donate my bone marrow, now what?

Contact the New Zealand Bone Marrow Donor Registry (NZBMDR) and register your interest in joining up.

Phone

0800 800 256 or (09) 523 5756

Fax

(09) 523 5757

Email

nzbmdr@nzblood.co.nz

 

 

 

 

Getting started with the Ronald McDonald Project

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Chace and his pal Ronald McDonald at RMH Auckland

Ronald McDonald House Auckland is a registered charity with the simple and important mission of keeping families together and strong. When a family faces the weight of a child’s illness the best thing they can do is face it  together so the House ensures that families are better placed to cope and help their children heal . They provide a number of wonderful support programmes for families from all over  New Zealand who have a child with a serious illness.

The Dream Chaser Foundation has selected Ronald McDonald House Auckland to be one of the main beneficiaries of the charity.   The House  is situated within close proximity to the National Children’s Hospital and provides free accommodation for families who have a child admitted to hospital. RMH accommodated over 2000 families in 2011 alone!

Through our own experience we know that having an ill child can totally throw life’s routines and structures up in the air.  To know that there is a service offering high quality accommodation helps to ease the financial and emotional strain  substantially. Sadly, the amount of families that need to be catered for increases every year, so accommodation facilities are an on-going matter. To address this issue, RMHA constructed a new building to house more families. However construction of this building needs to be completed in stages and is reliant on donations and sponsorship. The Dream Chaser Foundation saw this as a fantastic opportunity to give back to an established charity whose services we used for about 7 months straight in 2011. They are a most deserving charity and we are very proud to be part of the Grafton Mews Capital Campaign.

 

 

 

 

 

 

 

 

 

 

The Dream Chaser Foundation’s National Bone Marrow Drive

Leave a comment Bone Marrow Drive, Projects

Why is this so important to the Dream Chaser Foundation?

This issue is very close to our hearts. Upon diagnosis, it was confirmed that Chace would need a Bone Marrow Transplant because his strain of Acute Myeloid Leukaemia was particularly aggressive. To give him the best chance at life, he needed to have his cancerous marrow cleaned out and replaced with someone else’s healthy marrow. This new marrow would repopulate his body and with time, start to function properly.

However there was one major problem we didn’t anticipate having to face. Out of approximately 19 million potential donors on the international donor registry,  there was no match for our boy.  This was due to Chace’s unique tissue type.  Chace’s Maori ancestry played a part in this uniqueness. Your genetic makeup directly affects the likelihood of you finding a match. There are currently only about 7000 people registered as Maori and Pacific Islander on the donor registry in New Zealand.

Before Chace was diagnosed we had no idea what bone marrow was, what the process is for becoming a bone marrow donor or even what conditions required a transplant. We believe that awareness and education is key to encouraging more people to donate bone marrow in New Zealand.  We recognise that this is a culturally sensitive issue and needs to be approached in a respectful manner.

We are embarking upon a national bone marrow drive, where we hope to spread the word, provide information and encourage people to donate.  Unfortunately we were not a match for our son, but we may be a match for someone else’s child or family member. We think that a day out of our lives to save a life is a pretty good deal! And we ask that you join us in our mission to be life saver!

We have events planned throughout the year so keep an eye out on the events page!

Please click http://www.bonemarrow.org.nz/ to find out more information about the actual process and contact details of the New Zealand Bone Marrow Donor Registry (NZBMDR).

Chace’s Bone Marrow Transplant

Leave a comment Bone Marrow Drive, Projects

(above picture – the cells are protected in the silver case and kept frozen in Liquid Nitrogen)

“We have found a match!” words every parent of a child waiting for a transplant longs to hear. Leading up to this moment, we had some very low points.  We were already dealt the blow of having no bone marrow donor match on the international donor registry which seemed almost unbelievable. We knew Chace was unique but we didn’t expect that out of 19 million, there would be no matches! Chace has ancestral ties to Ngati Awa, Ngati Porou and Tuhoe iwi and in New Zealand, the chances of finding a match if you are of Maori or Pacific island descent (or other ethnic minority group), your chances of finding a match are decreased due to lower bone marrow donation rates.

But receiving the news that Chace could have a “matched unrelated cord blood transplant”  was a wonderful relief.  It came from Australia, the background story is that a mother had agreed to donate the cord blood of her new-born baby to a cord blood bank. Umbilical cords are rich in blood stem cells and are capable of repopulating the bone marrow and producing blood. It had been stored for years waiting for a match to eventually pop up.

Our boy looking a little worried while the nurses get ready to hook him up for his stem cell transplant (July 2011).

The big day couldn’t come fast enough; we knew the process was very intense and hard on the body and that there were a number of potential risks in the transplant preparation phase known as “conditioning”. This process involves the most intensive chemotherapy, right on the limits of what the human body can tolerate. It needs to be this intense so that it completely wipes out all of the bone marrow including all of the cancerous cells. It basically leaves the marrow “empty” so that the new healthy cells can be injected and start the process of re population.

The 10 days of conditioning was very tough. Chace was very sick, with high temperatures which lead him to having a serious seizure. But being Chace, he took this in his stride and before we knew it, transplant day had arrived.

It was a very emotional day for us. It was a huge relief to know that we were giving Chace what he needed so desperately.  Before the infusion started (most people envision a surgical procedure given the name “transplant” but it’s actually similar to a blood transfusion given intravenously) I was able to put on these special gloves and hold the canister that contained the precious stem cells. It was a very precious moment of overwhelming hope and promise, a memory I will treasure forever. Chace’s Koko did a karakia (prayer) and we were ready to hook Chace up.

The bag that looks just like blood is the actual stem cells that were transfused into Chace.

Chace was worried as he could see all of us teary but he had some of his favorite nurses on (Nicola, Jodie and Norrie)  which helped.  He hugged his Nan really tight while they hooked him up and  in half an hour or so, it was all over! The  new healthy cells were in his little body and now we could concentrate on Chace’s recovery.

From day one of this journey, I kept a journal. I wanted to be able to show Chace when he was older how brave and  courageous he was when he was only a baby. I wanted to be able to show Chace’s grandchildren how amazing their dad was.  I will never have that opportunity but what I can do it share little moments into our journey to show how brave these children are. Please feel free to read Chace’s and Mummy’s journal entry.

Written by Keri

 

 

 

Baby’s transplant story

Baby’s transplant story part 2

 

Te Ara Kingi’s story of courage and hope

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 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!

 

Jackson Daniel West

Leave a comment Remembrance

Our special little angel left us on the 28th of December 2011, only 21 months and 8 days old. Jackson also has AML, he also had a Bone Marrow transplant just after Chace. We were lucky enough to be a part of the Topperwiens extended family.

We miss you everyday Jackson. I hope you boys are causing a lot of mischief up there. Love you always our special little man, Love Mummy, Daddy, Bradley and Katie Xx

Roadworks

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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.

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

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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]

 

 

 

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