Lessons on life (and organ donation)

Pic: Long Jump medal winners
Pic: Aunty Unu, artist in the making








Brisbane can be intimidating. Its giant highways that snake through the topography make Auckland look like toyland. Brisbane’s wild weather swings capture the best of what it means to be a huge unpredictable country.

It was in Gold Coast – about an hour’s bus ride away from Brisbane International Airport – that we got a taste of what it is like to transplant everything you ever wanted onto a stretch of land that stretches from coast to cost, marked by the ocean that rages on, even at the best of times.

What is it about Gold Coast people? Every other girl walks around in skirts really short, and every other bloke has ugly body marks wrapped around their arms and call them tattoos. The young girls parade their arms, legs, bodies and bums. The guys with or without nice bodies show them off in surf shorts.

You can’t walk away from Gold Coast unimpressed. It is a vast piece of man-made landscape. It has tall buildings straining into the sky, trying to touch the clouds. It is about the only place in the world that has more Thai restaurants than Thailand. And here, you can eat a cup of ice cream with as much gummy bears in it as you want, or go scare yourself to death with death-defying rides in the theme parks.

I am glad I took Princess to the Gold Coast for the 17th World Transplant Games. There she learnt that money can run out pretty quickly if you just spend and spend. Or if you forget the NZ dollar sucks because you loss about 20% everytime you buy an Aussie dollar.

Lessons
There she learnt that sun screen is a must, in the scorching heat, and rehydrating yourself can save you a lot of pain later.

There, she learnt, that time and tide waits for no man and to catch the bus, you actually may be competing with hundreds of others dying to get on the same bus.

There, as an 11 year old, she learnt the arduous discipline of a competitor, waking up to be at breakfast at 5.45am, and getting ready to compete at a venue by 7.30am.

There, she learnt that sometimes you win, and sometimes you lose. Watching the Japanese girl burst into tears when she came last in the 50m sprint told Princess that some people deal with disappointment outwardly, others never show any sign. It is not about losing, but also about how you deal with the aftermath.

There, she learnt that to be gracious when you win is the true mark of an athlete. It is never just about the wins, but also how much compassion you show to others who struggle to do something that doesn’t come as naturally.

There she learnt about what it means to have team mates who cheer for you, and stand in the hot sun to bake, just to watch you race and cheer you across the finish line.

There, she learnt, to give as much as she receives – that to give up a seat to an older couple after a tough day at the fields/tracks can be just as rewarding as winning a medal.

No freak show
There she learnt the lives and tales of other little girls and adults just like her. That she is no freak show.

Transplant patients are a testament to how life can be normal. Sure – there were visible signs of athletes cracking under the heat of the sun, knees giving way, older participants panting and heaving. But there were also plenty of signs of healthy, golden and brown runners or swimmers who dare test their limits and come out as glorious as the sun.

There I go again, thinking about Dr Stephen Munn’s wisdom -- the whole transplant odyssey is about achieving normality. Sure, every now and then Princess comes up against bad liver enzymes showing something is not right. Every now and then, there are those unexplained aches and pains.

But at 11 years old, Princess is a normal kid looking forward to going to intermediate school next year. She greeted her 11 birthday on August 27th at the 17th World Transplant Games in the Gold Coast, with over 1,000 people singing her Happy Birthday and a cake with a computer generated photo of Jacob Black, her beloved from Twilight; and oh, a silver medal in the 25m swim on the same day. How cool is that?

She came home from her school today giggly about the puberty talk and being shown tampon soaked and expanding in water – a silly 11 year old, with a lot more zest for things a lot sillier I suspect.

Family
Hubby came home after a 6-8 week assignment in Wanganui, working on a dairy project, and a boys-only ski weekend.

Aunty Unu, the braveheart that she was, came to the Gold Coast with us to cheer Princess on, forgetting her own troubled battle with cancer, and the 5 zaps she has just had to treat the insidiousness of malignant tumour in her spine.

Grandma took a week out to cheer Princess too and did so well being dragged around by us on so many occasions on our expeditions here and there. So did Aunty Malulu who gave up a week of precious time.

We are a normal family. Leading a somewhat normal life.

The story has to be about the priceless gift of life given to us by some unknown person with a family, just like ours -- probably with hopes and dreams, just like ours.

Spread the message of transplant and organ donation around. There is a life somewhere needing a precious organ.

Transplant Games 2009: An ordinary day, go Kiwis

Aug 23rd 2009 wasn’t like any other day. The sun was shinning in Brisbane’s Broadbeach except it wasn’t ordinary sun. It was a sun coming up to greet thousands of people who had descended on Broadbeach to attend the 17th World Transplant Games.

We are in the Gold Coast at the Transplant Games – a sporting event held bi-annually for transplant patients.

Our first main event was the beach walk – along the spectacular crashing waves, an inflated giant beach ball rolled by various people – 5km to and from the tallest landmark along the beach.

As you look through the long lines of people snaking through the beach, walking to celebrate the gift of life (of organ donation), you forget – despite the ordinariness of a day so hot in Brisbane – that this is far from an ordinary day.

It is most extraordinary to see so many transplant patients and their families and supporters gathered on a beach, being scorched by the hot sun.

Chances are if you turned around, you would have met a boy, a girl, a man, a woman of various ages. Chances are he or she would have been a recipient of an organ, or a donor family, or a family member of a transplant patient. Chances are he or she would have had multiple weeks of hospital stays, heartaches and tremendous quiet suffering that neither you nor I will ever know.

The New Zealand contingent came out full force – 20-0dd transplant patients and a slightly larger number of families and supporters. The air was filled with camaraderie.

We wear our black polos with pride. Afterall, the All Blacks had just won the rugby the night before against the Aussies, and a few Aussies and other nationalities who are keen rugby folks noted the victory. The world may not be able to pronounce New Zealand. But they can say the All Blacks. “What is a Kiwi,” a Canadian couple I met on the beach asks. Hm, how do I explain ways we use the word Kiwi in New Zealand?

The sand was the only cold thing around. The sun was unforgiving and wrathful. We trundled along and back. Sweaty with face like lobsters freshly cooked, we head back to the apartment for a quick shower and change before the next big event. For the athletes it was a group photo shoot. For supporters, getting ready for the big Opening Ceremony.

The Opening Ceremony
It was big, it was bold, and it was truly a showcase of Australia. We were entertained by voices, cheerleaders, dancers, string divas, voice maestros. It was not the crazy stuff that you see on telly with the Beijing Olympics but it was certainly fun and entertaining. It was an hour or two too long – but what the heck, the Aussies have got to strut their best and we sit patiently, waiting for the ceremonies and show to get on, and end. We even gave the host nation a standing ovation when they came in. The race begins in ernest on Monday.

Princess came down with the NZ contingent, looking for our faces as she marches down. The arena is a like a big black cave. We must have looked like bats to her, stuck to our seats. She can’t see us, but we waved and cheered “Go Kiwis”.

I would love to say forget the race but it is hard to forget the competitive aspect on a transplant patient’s life. It is as if every organ recipient has got a bigger story to tell – having conquered death (some of them multiple times), there is always something larger and more challenging.

The sporting competition will always be the sideshow, I think. The main drama is these transplant patients’ constant struggle with coming to terms with how life can be normal, and yet abnormal.

These are the contradictions. You can look a transplant patient in the eye, see his/her joy and triumph, but never their true battle scars. You see them fit as a fiddle and forget they can get very sick and turn custardy the next day. At the games, you even feel almost helpless you are so unfit compared to some of them.

If you have seen the Italian cyclists, you would think Lance Armstrong and Tour de France. These cyclists are slim, sinous and sensationally gorgeous in their tight biking gear. Our Kiwi cyclist’s wife was afraid she might have lost a pump she loaned to the Italians. Trust a Kiwi wife to be so dependable.

At the arena where the 17th World Transplant Athletes marched in, I got a sense of what it felt like to be part of a community – of people who have experienced hope and life.

This Thursday, August 27th, Princess will turn 11. She has had her new liver since June 2004. On Sunday, she will just one of 100 other kids in the games, all transplant kids. The adult athletes total just under 900. She brings with her a diary, her math homework, and an assignment from Mr May her class teacher to jot down things she has done everyday. It will be a hard task to keep to the homework. She would rather watch Sponge Bob on telly.

The sun is scorching. It is 30 degrees outside. Princess is just back from the pools with Aunty Malulu. Tomorrow (Tuesday) is her first event – tennis. Should we practice today? Maybe, maybe not. Lina my friend who lives in Brissy, is coming to visit us. We were thinking shopping?

Princess has been busy collecting pins from other athletes. She is a Kiwi gal. Kiwis are passive aggressive. They are laidback and competitive all at once. They are serious yet fun. The Kiwi contingent will battle the Goliaths in these games – the Aussies, the Brits and the Americans. We maybe a small nation but we are giant totaras – proud and unmovable. Go Kiwis!

Off to Brisbane for World Transplant Games

Three generations of Woolfs head to Brisbane this Saturday at the unearthly check-in time of 4.40am to head to the World Transplant Games. We are all excited, no doubt, except for the prospect of having to wake up at 3.30am to get ready!

Grandma, Aunties (three cheers for Aunty Unu who is just out of one of the world's most killing chemo regimes and out and about with us!), Princess and I are excited about the prospects of seeing other organ recipients run, swim, play golf, and do things most normal people do. Princess hasn't practiced much. But as a liver transplant recipient, she lives a damn normal life. She swims an hour a week, trains for gymnastics between 3 to 4.5 hours lately, and plays tennis for 2 hours on Fridays. In between, there is math tuition, piano and Mandarin lessons. What a full life!

I am excited over seeing a good friend who lives in Brisbane -- her family has dotted on Princess the day they knew her. Also, we are excited about seeing another friend who has also moved from NZ to Brisbane (WHAT IS IT ABOUT BRISBANE THAT ATTRACTS KIWIS?)

Hubby continues to be on site in Wanganui. So he can only cheer from across the ditch.

Brisbane will remind us of the gift of life from our organ donour (from Australia). We stand in constant humble awe and thanks for the precious gift - from an unknown person.

Christmas 2008 - Celebrating friendships

Christmas Letter 2008



Greetings! What a year 2008 has been. I just spent an evening with great friends for a year-end party. Times like this remind me of all the great friendships I have formed over the years. Thanks for being friends with us! As always, we remain humbled by all your generosity, kindness and compassion.

This year caught us by surprise. Julia fell ill around April and was in Starship Hospital for 8 weeks due to a narrowing in her bile ducts. She also had unexplainable leg pains and had a series of investigations ending with a bone biopsy. So imagine crutches, moonboots for a period. She later had a minor fracture (had a cast for a month) on her arm from gymnastics and was out of action for a while.



Picking up
Despite all the physical barriers, she didn’t let her illness or physical limitations get to her. She is good at picking up where she left things – and returns to school as if she hasn’t left. She came back from a long hospital stay to win 1st place in the 100m and 200m sprints in her schools athletics’ day for Year 5 girls. She surprises Tony and me with her tenacity and rapacious hunger to thrive. She outdid a few boys in her swimming class and moved up a group! Next year, she continues her gymnastics, her ballroom dancing, her swimming and Mandarin lessons. We are pleased with her achievements in school as she has had an excellent year with a very good school report.



Transplant lunch
In the first quarter of this year, Steve Munn (her surgeon) and the Liver Transplant unit coordinator Margaret asked if Julia could read her poems at the 10th anniversary of the New Zealand Transplant Unit of Auckland Hospital. Initially Julia was reluctant. After a bit of pep talk by her principal Ms Adamson, she caved in! Talk about armtwisting by mom/dad! She read at the luncheon and at the formal dinner. Dr Munn stood by her as she read "Orange" and "The Writer of this Poem" (both written when she was in year 4 in school). She surprised me with her composure and poise, and how well she carried herself in an audience on very serious business. These were all a bunch of professionals belonging to the arcane world of liver magic.

Here is a sample of her poem which she read.

The writer of this poem

The writer of this poem is as chatty as a cheetah,
Bouncy as a flea,
Flexible as a snake,
All these things make the writer of this poem sound fake!

The writer of this poem is as tall as the door,
But not as small as the floor,
Is wide as a baby tree,
But not as round as a bee.

The writer of this poem is as imaginative as vivid,
Is as permanent as immortal,
Is as kind as a friend,
Is as soft as a rose petal!


Playhouse
Julia was also lucky to get her wish granted by from the Make-A-Wish Foundation. She now has her own “house” (a playhouse) in our little yard. She plans to move out real soon except she is petrified of the bugs that tend to visit from time to time. She hangs out in the playhouse with her girlfriends. The walls are already covered with Jonas Brothers posters!

Tony moves on
Tony had a watershed year, moving on from APV (which he has been for over 19 years on and off either fulltime or as a contractor) to GEA, doing the same thing. He is learning the ropes in a new environment and is ready for new challenges! His collection of Big Boys toys continues to grow – a fishing kayak, fishing gear, a trailer and other things I don’t even get to hear about in detail, that gets hidden in the garage. We also added a new fancy tent and quite a few other accessories to the garage which incidentally seems to be getting smaller by the day. And oh, a stainless steel BBQ to make a Kiwi home complete!


Anna
The not-so-good news this year was Anna (Tony’s sister) being diagnosed with brain tumour. Anna fights on, in an indomitable way. We are awed by her approach and how she copes with all the chemos and countless visits to hospital. She continues to be Julia’s "Aunty Unu" and they provide great company for each other - both feisty and not to be messed about with.

Freelancing
It has been over two years since I left fulltime work. I am still freelancing and am enjoying the freedom. Tony thinks I should get a real job. I think I have a real good deal!

This year, I learnt to knit from my dear friend Sally. My two favourite books this year have to be -- Three Cups of Tea – about the work of Greg Mortenson, who built schools for Afghanistan kids high up in the mountains - and Journey of A Thousand Miles – life story of Chinese pianist Lang Lang. Julia asked me to read a book she fell in love with -- The Power of One -- so I am reading it at the moment and enjoying it too! Julia and I also went through Cleopatra and Boudica -- both romanticised versions of the historial personalities.

I also managed to get rid of a lot of things in my bid to clear clutter. The Woolfs and the Cheahs (and some other families) went camping in Jan08 at Treasure Island, and we fell in love with the concept of waking up late and not having to do housework. Julia continued to be so well looked after by her two older and extremely awesome friends Chelsea and Daryl that we plan to have the Cheahs camp with us sometime soon!

I continue to seek the inspiration of our resident monks and nuns at Dorje Chang (a Tibetan Buddhist Centre which Julia and I) - they show us how to live with compassion and how to cherish others above ourselves.

Oldies
Mom and dad came for a visit in April. So did my aunty and her family! It was awesome having so much fun! Imagine a bunch of 50-something year old ladies learning dance steps from Julia; competing on sports virtually on the PlayStation. The laugher resonated through our house which continues to be filled with loads of great energy from great people we love! Tony was a away so he didn’t mind the noise.

Thanks again!
To all our friends who came to the hospital bearing their prayers, kindness, comfort, food, toys, games and books – thank you as always! To those who are far away but continue to send their prayers and wishes for health and pray for Julia – thanks from the bottom of our heart.

Here’s a wish for your health and happiness in this and all lifetimes! Have a great 2009!

Love: From the Woolfs

Transplants – It is about hope & normality

Princess of the House had a liver transplant when she was 4.5 years old. Most of our close friends know this. But most people have no idea Princess has had such as disastrous health record. Last week, I stood as a proud mum of a 10-year girl who battled other normal kids to take 1st place in the 100m and 200m sprints among Year 5girls in her school. This, for me, is a pretty fine endorsement that she is "normal".

I will always remember the liver transplant team’s message to us -– the central pursuit of any transplant is to give the recipient the opportunity to live a normal life. Princess was lucky she found a close enough match; and is under the hawkish care of her liver angels at Starship Hospital. She is into her 5th year as a transplant patient. She is living life like any normal kid – swims, plays tennis, does artistic gymnastics and ballroom dancing. And oh, she even has an attitude problem from time to time.

Who is David Poa?
Recently our specialist nurse sent me a message about this kid called Karl David Poa. I took one look at David’s pictures in the document our nurse sent me and was in awe of David instantly.

I saw this huge mop of long, bushy hair – wild and free – and his mischievous smile. I saw his beautiful face – not a trace of worry or care -- and the twinkle in his eye. I saw total abandonment. Most of all, I saw great hope for him.

I don’t know David. But I know he has intestinal failure. David spent the first 3.5 years of his life in hospital. He is 7 now but has spent most of his childhood for extended periods in Starship Hospital. His “food” is fed intravenously over 15 hours a day.

They are running out of veins (used to administer his feeds) to put a line into David. Lines get infected despite the best of care. His best option is to have an intestinal transplant – which is not available in NZ. He needs to get this transplant done in the US. He has been accepted by specialists in Omaha-Nebraska for an assessment, and likely wait-list for a transplant.

I learnt of David's story from Princess' specialist nurse. Now I want to share this story with you my friends, and hope you too can reach out to your circle of friends –to help with David’s journey.

The NZ health system will fund his transplant cost. But before he can go to the US, he needs to raise big amounts of money for him and his family to live for 3-4 years in the US. The KIDS Foundation in NZ has set up a fund raising campaign for David.

The nurses at Starship Hospital at Ward 26B describe David as a sweet, cheeky, mischievous boy who is also funny, charming and endearing. He is sociable, loves to be in the hub of everything and is inquisitive about what's around him. Like most boys, he loves the PlayStation and his cartoons.

To give is to receive
Now, when I think about David’s fund raising quest, I wish he could get on that plane soon. I wish for David to be able to taste “real” food, to bite into a muesli bar, to have Weetbix and crunchy fries, and not have to rely on TPN (liquid) feeds.

I want David to feel what it is like, to live life normally – but most of all, I wish for David to be given a chance – that’s all. To donate to David’s fund, visit the KIDS Foundation's website

Extraordinary moments from the ordinary

After over 3 months, our Merlins at Hotel Starship seem to have sorted out the cholingitis (inflammation/infection of the bile ducts) that Princess of the House has been battling with. In June, we checked into Hotel Starship for what we thought would be a short stay. We ended up with a 6-week hospital vacation, and a series of Percutaneous Transhepatic Cholangiogram (PTC).

A PTC is a surgical procedure where a sort of “x-ray” is done on the liver and the bile ducts. Imagine a plumber, going underneath your house to have a look at the pipes. Well, a PTC allows the Merlins at Starship to have a look at where the blockages are in Princess’ bile ducts.

During a PTC, our magician at Starship inserts a little needle into Princess’ liver and watches the needle on a special x-ray machine. A contrast is injected into the bile ducts, to see how the contrasting agent flows. The x-rays will tell whether the plumbing of the bile ducts is ok. Princess of the House has had a sort of odyssey with PTCs in the last few months.

The PTC she first had 3 months ago found a 5 cm narrowing in her bile ducts. So the plumbing exercises began. We had a magic maker Dave Duncan who dressed in surgical clothes looks almost as formidable as Dr House (except Dr Duncan is more dashing).

Dr Duncan was Princess of the House’s “plumber”. The first two “pipes” (rubber stent put in to stretch the bile ducts so bile can flow freely) didn’t do their job. A third stent did the job. Still, the stent had to stay inside, to stretch the stricture.

On Monday, our magician did his usual magic. Princess of the House was put to sleep after a 12-hour fast. He squirted some contrast to see how the ducts did, and was happy the stent did its job. Out came the stent.

This morning, just after 8am, a very on-time and exuberant Dr Ben Hope came with the happy news for us – we can go home - only after one night at Hotel Starship – unbelievable!

Seeking the extraordinary
Princess of the House is happy the stent is out. (She has had an “appendage” or a tube which has bee capped hanging out of her abdomen for ages). It means she can get back to the love of her life – her gymnastics; and perhaps swimming and her ballroom dancing. Maybe a season of touch rugby, depending on how her legs go (the pain in her leg is another saga of epic proportions).

We humans seek extraordinary events to reaffirm our existence. But it is in the ordinary things in everyday life that me and my house have come to appreciate these days. A simple meal cooked in our own kitchen; our own bed at home; our own bathroom; our own telly; and a transient stay of the beautiful maple leaves coming out in spring to grace our tree.

For those of you who have sent us prayers and wishes, came with food, books, toys and games for Princess of the House, our most humble thanks. And to the nurses at ward 25a, 26B, our liver nurses, the other magicians from the Gastro team - you all are very special! We are looking forward to more ordinary days!

Cancer - the dirty word

Cancer is a dirty word, well at least to me. We went to my cousin’s wedding and hubby discovered a lump under Princess of the House’s arm. We took her to our GP. The GP thought it wasn’t serious. He suggested we wait to see what happened. My friend at work, BY, (I have her to thank!), told me in no uncertain terms, I had to seek a second opinion, and gave me her pediatrician’s name. The rest, like they say, is history. That was when Princess was 2.5 years old. She is now 10.

At 4.5 years old, Princess had acute liver failure. We found a liver match at the 11th hour. We were lucky. Others are not so. But near midnight on the day of Princess’ transplant, we had a call from hospital. It didn’t sound good.

Stephen Munn, our surgeon, told us when they cut Princess up, they found cancer in a few places. They suspended the surgery for a while (45 minutes was it? I can’t remember). But after consultations with the best around the world, Dr Munn said (and I will never forget Dr Munn’s words) they decided to go ahead with the liver transplant as cancer is “an imminently treatable” disease. This has been my amulet for a long time now “an imminently treatable disease”. That should be ever cancer parent’s amulet, I reckon.

We have never personally thanked Dr Munn for making the professional decision he and his team made. But he knows -- probably from years in the trade that patients or parents never truly show their gratitude. Why is there need for words when we eat it, drink it, walk it, and live it everyday our Princess is alive.

Cancer – many lives

The cancer saga didn’t end there. Post transplant, when her new liver was thriving, we found cancer lurking again, inside Princess.

Cancer is an insidious disease. It creeps and takes over, when you least expect it. It can be wiped out and killed. But it reincarnates often, like a cat not with nine but a thousand lives. Lucky for Princess, the drugs are getting better. We had had Rituximab in our last treatment, a kind of missile drug, that targets the cancer cells rather than destroy all cells in the body indiscriminately. The first treatment protocol used in Singapore was CHOPP (a cocktail of different drugs, used in chemotheraphy). That was the chemo with its side effects – nausea, hair loss, weight gain (from prednisone, a steroid), constipation. Not wonderful.

World Lymphoma Day

I found out from the NZ Listener magazine that Sept 15 is World Lymphoma Awareness Day (WLAD). How uncanny. Hubby’s birthday is Sept 14th.

Now I will never forget WLAD now! I am not a very scientific person so I find it hard to follow all the different scientific bits of cancer. But I know Princess had Hodgkins, the slow-growing form. It took them a while at the National University Hospital to get a conclusive reading on whether it was Hodgkins or non-Hodgkins lymphoma (NHL). The differences are very fine, even under super microscopes.

Non-Hodgkins is the one deemed a faster growing cancer. The difference between the two types of lymphoma is based on what type of predominant “bad” cells they find in the “diseased” location, T-cells or B-cells and much more.

I haven’t looked very closely at what a cancerous cell looks like, but I have seen what they have shown on House -- under the microscope, cancer cells look like little colonisers – definitely aggression personified. They give you the goosebumps when you look at them because you know their capacity to render you powerless, like an imperialist master over your body, the colony.

These are some facts I have since found:

 In NZ, lymphoma (since the source is not specific, am assuming it refers to both Hodgkins and NHL) is the sixth most common cancer in the country affecting about 800 people every year. Certain types of lymphoma can kill in as little as six months.

 There has been a 30 percent rise in lymphoma in NZ over the past five years and this is projected to rise further.

 What’s scary is most of the people surveyed think symptoms of lymphoma are just signs of flu. Some 89 percent of 501 people surveyed in NZ could not correctly identify that lymphoma was a cancer of the lymphatic system and 94 per cent did not list lymphoma in the top of their mind as cancers. Only 2 percent could recognise the symptoms.

Lymph nodes are like your body’s ammunition against infections. They are the size of a jelly bean (about 1 cm) and when they are in battle mode, they become enlarged.

Princess of the House had a node the size of a ping pong ball under her arm. No other symptoms that I can recall. Other major hubs for your nodes are your neck, armpit and groin. So never ignore those lumps. Other symptoms are: night sweats, persistent fevers, rapid weight loss, trouble breathing, chest pains, weakness and tiredness for longer than two weeks.

The not-so-bad news is the success rate for lymphoma cancer treatments is about 75 percent, according to one report.

US stats

In the US, NHL is the 5th most frequently diagnosed cancer in the US. More than 66,000 new cases of NHL are expected in the US this year (close to 35,500 males and 30,700 females). (Sourced from Genetech). Of the estimated 360,000 Americans living with NHL, about 30 percent have diffuse large B-cell lymphoma and approximately 30 percent have low-grade lymphoma.

You can get very deep into the subject. There are something like over 40 different manifestations of lymphoma.

Hubby’s sister

Darling Aunty, my hubby’s sister, is dying from brain cancer; NHL, it is. The kind that spreads fast and furious, like a wild fire. She had it in her kidneys, they killed it. The cancer reinvented itself in her brain, taking over her body – her new master. We are staring at death, very up close and personal.

Princess of the House had just had 2 months in hospital, a narrowing in her bile ducts. The wizards at Startship’s Gastroenterology are doing their best to keep the bile ducts stretched, with a stent. It stays in there till the ducts are wide enough for bile to pass through without clogging up. We are waiting, waiting. We have faith in these Gastro folks. They are the best in the world, they are our Merlins.

Now Princess has unexplained pains at the back of her right ankle. After every imaginable scan and biopsy one can expect, her ankle is still hurting. She now wears a "moonboot" to keep her ankle from being stressed too much. Is there cancer lurking somewhere in the nether regions of ber body? Our oncologist gave us the clear recently, no cancer, she says. The PET (Positron emission tomography: a type of scan where radioactive material is injected into your body to tract cancer/blood flow etc in the body) scan we did on Princess in Melbourne in June gave us the clear. Yet, we never relax. We can never relax.

Truth of suffering

Sometimes, I throw all these vestiges of fear or nightmares at the back of my mind, deep, deep at the back where I can easily snuff out every trace of it. It is easier to forget. Recall takes courage, real courage.

Then, this week, I heard from a dear old friend of cancer in his family. Lymphoma as well. We all have our nightmares to deal with. We all try our best to bury these nightmares and walk tall, relying on their inner resource to face the day. My concerns become imminently less important when I focus on other people’s suffering.


I see the boy in a wheelchair in hospital school with no arms, no legs; and he is using his little “bit of stump” to throw the dice in a game he was playing. No fuss. Just getting on with his game. He is a hero to me now. I talk to our liver nurse (a mom with a kid who had cancer and now in remission) who has to face sick kids waiting for a liver against the clock ticking. She becomes my reminder of what courage is - to face everyday with inspiration - to go out and do the best we can.

What is real is suffering is universal; not exclusive to me. How we choose to respond makes the difference.

Tomorrow, we hope to escape Starship as Princess’ fever has subsided.

Tomorrow, Princess -- wrapped in a beautifully hand-painted dress with koru design done by her best mate’s mom (Kororia take a bow) -- will sing with over 30 other kids several Maori songs – songs that celebrate bravery, fierceness, courage, warmth, love and friendship.

Useful sites on lymphoma
Leukemia and Blood Foundation NZ

Lymphoma Research Foundation

New York Online Access to Health

This season of our despair, next season of light

It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of light, it was the season of darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to heaven, we were all going direct the other way--in short, the period was so far like the present period…Charles Dickens – Tale of Two Cities

Dickensque

It was the best of times, it was the worst of times…it was the season of light, it was the season of darkness, it was the spring of hope, it was the winter of despair. For our family and friends, the last half year has been every bit as Dickensque as you can imagine. A Darling Aunty dying from brain tumour, a child (post-liver transplant) suffering from relapse of bile duct narrowing. Princess of the House (our daughter Julia) spent 8 weeks in hospital sorting out her bile duct problems. She still wears a tube, hanging from the top of her belly like a weird extension (in case the surgeons need access).


This April just past was the worst of times for us. Darling Aunty got diagnosed with brain cancer. This June past, was the worst of times, Princess of the House got very sick. The worst of times because for the longest time in these very sultry winter months, the doctors were looking for clues of whether Princess of the House was having a relapse of her childhood cancer. We had a heavy block dropped off our backs on Monday results from a PET scan in Melbourne showed all is well on the cancer front for Princess.


Lessons

What the last 5 months-plus has taught me is that the worst of times, can also be the best of times. It was the best of times because I have seen much greatness and professionalism among our care gives (read Liver Transplant nurses, nurses at Ward 25A, the mostly-bald headed Gastroenterology guys at Starship Hospital (well pardon me, including one impeccably dressed lady consultant with accessories to die for); Northern Hospital School teachers – hear the gong folks!).


It was the best of times because we learnt that humans cope despite great adversities. We wake in the morning, hoping it will be a better day, that the sun will still rise as it surely does. We wake up knowing our friends and family are there for us. We wake up hoping the Boffins and their friends (read people of science) may have some answers for us; that we will be one step closer to the end of the dark tunnel, closer to some answers.


The answers may not be what we desire to hear. Our Darling Aunty has been given months to live. We enter the realm of incredulity, the season of darkness; we sink into the winter of despair.


But these can be the best of times for us – because we learn to grow as humans, to see this as the time to seize the day, to live life with no regrets, to show kindness; to exercise compassion, to learn tolerance as a way of life, and say the prayers we never seem to find it easy to say. This is the time to feel the frailty of human life.


These can be the best of times as we learn to greet death in its gruesome face with as much surety as we greet the transcendence of the beautiful rising sun. That because instinctively we seek to live, we surely also, must by the same logic, have to seek to let go when that time comes.


Magical cat

There is a certain cartoon character – a pudgy blue robot cat which speaks with a mechanical human voice called Doraemon (Pico Iyer's version of the cat) – which I love. Doraemon always has a solution, something he can pull out of his magical pouch. Miraculous feats happen in Doraemon’s presence. Pipping hot ramen in bowls for Nobita and his friends atop a gigantic tree with vistas as wide as the eyes can see. How I wish Doraemon could produce a magical pill for Darling Aunty.


However, there is nothing magical to be found by way of how science takes it own pace to develop – not fast enough for Darling Aunty, I am afraid.


Season of light

So as surely as one accepts the rising sun must set, the time must come when we will have to let death come into our doors. For in dying, there is new life. In new life, springs the shoots that gives hope.


For now, for those who are grieving, our singular most important lesson must be that what keeps our daily life much more bearable is that spring of hope – that tomorrow will be a brighter day. That once we learn to let go gently, at our own pace - tomorrow, yesterday, the day before, last year and all of days, need not be the winter of our despair, but the season of new light.