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Lowri's Journal Page 6

The updates are listed here from most recent first.  You can click on a date to the left and jump straight to this entry.

23 Sep 2005 back to top

Lowri, 3 years ago today you took your last breath on this earth and left us shattered that cancer could take such a beautiful spirited little girl so quickly. We still cry every day for the loss of your company and the loss of your future and because we don't get to hug you every day like we should. You were with us for less than 4 years and yet your impact on our lives will last for our lifetimes and beyond. Be at peace little angel until Mumma and Daddy, Roosje, Liam and Owen are reunited with you in Heaven. Sweet dreams baby, we love you right up to the moon and back.........infinite times.XXXXX

 

10 Aug 2005 back to top

It has been a long time since we updated this site and a lot has happened in that time.

 

One Thursday in May Tim's Dad, Lowri's "Normal" Grandad, Hans phoned us to tell us that he had been diagnosed with stomach cancer.  He said he had not been in any pain, and did not seem terribly upset by the diagnosis.  It was not likely that much treatment would be given as his general health status was not good enough to tolerate any treatment.  He had been lonely ever since Tim's Mum Betty died in December 2001 and missed her constantly.  He also told me many times that he couldn't understand why someone as old and unhealthy as him should live on when our little girl Lowri, with so much life to live, had been taken.  A week after his phone call he was rushed into hospital with internal bleeding and he died early the next morning.  We miss you Hans, but Lowri will have welcomed you with open arms and I know you will have given her plenty of hugs from us.

 

Our little Owen turned one in June. He has been a handful since the day he was born, but has brought much joy into our lives.  He is far happier in himself now that he can walk well and terrorise the dog and all other occupants of the house.  All our precious objects are moving closer to the ceiling each week in an attempt to keep them safe.

 

In July we went to the UK to visit my family and to catch up with all our friends there.  We had a fantastic, although very hectic time.  We spent our time juggling showing the kids around the attractions and spending time with people we wanted to see.  We saw Chester Zoo, Old Trafford Soccer Ground, Blackpool, the London Eye, the Tower of London, Warwick Castle, we day-tripped to Paris with another day in Paris Disneyland, we spent a week in Devon and several hours stuck in traffic on the M5 motorway and several more hours trying to bypass the traffic on the M5, visited Cardiff and drove up through Wales to Chester.  We caught up with lots of our friends, but of course did not get long enough with any of them......and sadly we never managed to contact several of our friends, sorry guys!  We also spent time with my Mum and Dad and brother, sister-in-law, nephew and niece.  It was so nice for Roosje and Liam to see their English cousins again.  It all went too quickly and we would love to do it again, to do all the things and see all the people we missed, and spend more time with the people we did see.

 

On the way home we stopped off for two nights in Singapore to help stave off the jet lag - it didn't work for me, I am a zombie anyway even a week after we have returned home.

 

During our day at Euro Disney we bought Lowri the biggest Winnie the Pooh balloon we could find and tied it to Owen's stroller.  At the end of the day when we left the park we let it go to Lowri.  She was on our minds as usual during the trip and it is always sad to return to a home that will never ring with her laughter again.  We miss you so much baby, but you travel with us in our hearts.

 

And still the world carries on as more and more of our friends die of Wilms' Tumour.  While we were away a little boy Ethan got his angel wings and another one of our Wilms' family Kyle has been told there are no more tested treatments available to try to cure his disease.  I can hardly bear to think of these parents' pain as they face up to life without one of their children.  Another on-line friend of ours died recently too.  Spencer was one of the first children we came to know, through his mother, when we first went looking for help on-line.  He had so many surgeries and procedures I lost count and he bravely fought on.  Sadly the tumour in his brain just kept on coming back and finally his body could not take any more.  Please keep these children and their families, and all the other children on the links page, in your prayers

 

Thank you all for your support over the last 3 years.

Harri, Tim and the kids

 

15 Apr 2005 back to top

Well I expect you all thought we had dropped off the planet!!  It has been a while since the last update and that has been because we have been pretty busy with Owen, Liam and Roosje and the soccer club.  We have after school activities every day of the week and both days of the weekend at the moment - too much!

 

The tennis season has finished with both Roosje and Liams' teams not doing too well, but they enjoyed the season anyway.  Liam did very well in the club championships being knocked-out in a very close game by the boy who went on to win.  He is now signed up for winter coaching so that he doesn't forget all that he knows in the meantime.  Liam is also doing miniball (junior basketball) again this year - the team only started up last year, but have come a long way since then and seem to have a good grasp on the play now.  Liam is also doing soccer (of course) for the usual local club, but has been selected to take part in the national "International Player Development Program" which should help to increase his playing skills considerably.

 

Roosje is just getting back into the netball season with team selection going on at the moment.

 

The Relay for Life was another great success this year, although it was very hard on the ears as our tent pitch was right by the stage.  Lowri's Angels did a fantastic job as always, keeping the walking going throughout the 24 hours with cheerfulness and determination.  We have raised NZ$8,600.00 so far with some still to collect.  We sold pink helium filled balloons during the event and at the end of the 24 hours we released over 100 of the pink balloons for Lowri and the other children we know who lost their battle for life.

 

The swimming pool area is finally finished - well there is still some planting to do, but that is down to me.  Last Wednesday a carpenter came and finished the deck so it is usable again.  We have now started phase two - the new garage.  We have applied for resource consent to build a new garage and changing shed in front of the pool.  Considering that the pool took over 18 months to get done I dread to think how long the garage will take to build.  We are wishing that we had just sold up and moved to a house that had all the rooms and pool that we wanted.

 

Sadly, also last Wednesday, my little cat Brumey died.  Although I know this death will not rock anyone else's world, she was my constant companion for 13 years and I miss her very much.  Brumey kept me company through the bad days after Lowri left, and her death took me right back to the depths of those early days without Lowri again.  She was a nervous cat who distrusted strangers intensely and steered clear of the children most of the time too, but was always following me around and jumped straight onto my lap whenever there wasn't a child there.  Brumey never let me eat an ice-cream, cheese or potato chips, or drink Baileys Irish Cream liqueur without demanding some for herself.  I was distracted and busy with other things recently and did not notice her becoming sick so her death was unexpected.  I hope that she found Lowri waiting for her - two gentle souls waiting for me to join them.

 

Last night I accidentally deleted the entire guestbook.  We have had a lot of problems with the guestbook over the last few months with it not being "available", it not notifying us of new messages or it being filled with inappropriate "spam" mail.  Last night I went to delete one such spam and the whole guestbook deleted itself.  Tim did not believe that I had not hit a wrong button so he made me repeat what I had done on the KiwiAngels guestbook - and that too was deleted completely!  Tim had backed both up on 1st April so I know we didn't lose any real messages from the KiwiAngels guestbook, but I know we lost some from Lowri's guestbook.  If you signed the guestbook between 1st and 14th April, could you please sign it again because we lost your message!  If you didn't sign the guestbook during this time - WHY NOT??  We still love to hear from anyone who is visiting the site.  Tim is currently looking into creating a different guestbook for both sites.

 

I have had to move three of our Wilms kids to the Angels list on the links page.  Star, Melanie and, just yesterday, Patrick were all taken by the same unfavourable histology Wilms that took our Lowri from us.  How I wish that someone somewhere in the world was even seriously looking for a cure for this, but as "so few" children are diagnosed with this cancer it is WAY down the list of important studies.  I am so sad for the families of these children.  Our friend Haley is also still in need of prayers.

 

Thank you for visiting.  I will try to post some photos soon.

Harri & the gang.

 

6 Feb 2005 back to top

Sorry it has been so long since I did an update.  It has been a busy time of year with the long summer school holidays and now the start of a new school year with the opening of the soccer registrations (I am the secretary of the junior soccer club), tennis restarting and YES, we are doing the Relay for Life at the end of this month.  Lowri's Angels again raised more money than any other non-corporate team in the 2004 Auckland Cancer Society Relay for Life (a little over $8,100.00) so we have a reputation to live up to now.

 

The local paper "The Aucklander" did an article this week about the Lowri's Angels team and the Relay for Life, and several people who saw the article have asked me how to donate money to our team's efforts.  The easiest way is to email us at timvdw@kcbbs.gen.nz and we can email you back with the official fundraising letter which gives you an address where you can donate by credit card.  If that does not suit you then you can send a cheque payable to "Relay for Life" to Lowri's Angels, c/o P.O.Box 91, Greenhithe, Auckland.  All donations will be gratefully received by Lowri's Angels on behalf of the Auckland Cancer society.

 

The reason we have been involved with the Relay for Life is because although the Auckland Cancer society is not often involved with childhood cancer a large part of their fundraising goes to cancer research and we are very keen for a CURE to be found for the horrible disease.  Nobody should have to suffer the way that Lowri and so very, very many others have.

 

I have once again failed to load any new photos of the garden, but believe me the project is still on-going.  We are now at the 17 month mark - eek.  The pool is well used however as the days have been hot and humid recently.  It is nice to jump into the cool waters at the end of the day.  Roosje has just started at a new Junior High school - the school is brand new and has just taken it's first pupils.  So far she is loving it, but the homework hasn't really started yet!!  I took Liam in for his first day of the year at the local primary school - he still has 2 years left at that school.  It is still hard to see Lowri's peers going to the school.  When Liam leaves for Junior High I will not have a child at the school until Owen turns 5 in 2009.

 

Owen himself is now cruising around the furniture.  He learned to crawl in January and now just crawls when there isn't any climbable furniture where he wants to go.  Needless to say he could do with a safety helmet and the rest of us could do with some anti-anxiety pills.  We have had to move all our valuable objects up the shelving units twice in as many months and just spent the weekend sorting out stair gates etc.

 

Thank you for your continuing support.  I try to get to all the other children's sites whenever I can - all the ones on the links pageHaley really needs some prayers right now as she starts a new treatment protocol and Matthew and Star do too as they near the end of their lives.

Harri & the gang

 

24 Dec 2004 back to top

Owen's scan was all completely normal and no sign of Wilms at all.  This does not put my mind at rest entirely, but it does stop me worrying for the time being.  He will be scanned again in a year's time - too long a gap in my opinion, but I am only his mother not an expert.

 

We have a full house here for Christmas and Grandma Tricker is cooking a roast as I type - we are hoping it will be too hot on Christmas Day for a roast dinner so we are getting that out of the way on Christmas Eve so we can enjoy a nice relaxed Barbeque by the pool on The Day itself (of course we all have to keep off the patio because the pavers are down but not sealed, but that's a whole nother chapter).  I still haven't wrapped the presents and should really be doing that right now, but what is Christmas without a last minute rush?

 

I'd like to report that I haven't had time to miss Lowri, but that would be lying - she still creeps into my every waking moment, but I am coming to realise that I (and here I typed "may never see her again in this life" which illustrates my state of mind about her.......the rest of you all know this is a certainty, but my mind plays tricks on me.) *sigh*.  We will be hanging her stocking as usual and seeing what Santa will bring.  May God watch over her up there and make sure she has a Happy Christmas without us.

 

Wishing you peace at Christmas.

Harri & the gang.

 

11 Dec 2004 back to top

Tomorrow is the Worldwide Candle Lighting in memory of all children who have died.  We will be lighting candles for Lowri and for all the other children we know of who have died.  Our on-line friend Josh got his angel wings since I last updated along with Lauren and Laura two other Wilms' warriors we know of.  Heaven's school roll must be getting very full.  So many families we know of will be having a sad Christmas this year.  Our friend Haley needs your prayers right now too.

 

When Lowri was in treatment we put the highchair away in a cupboard in the garage to make more space in the dining room.  This week I got it out to clean up for Owen and when I took the back off to clean it I found a whole clump of Lowri's hair from when it was falling out during chemo.  It had bits of toast and other ?? crumbs mixed in with it but I couldn't bring myself to throw it away.  A big part of me wanted to just leave it in the highchair and never clean it up, but I fought through that and collected the hair into an envelope and cleaned the chair right up.  A couple of weeks ago I was clearing out a cupboard and I found a flax bag that Roosje had made at school for me.  Inside it I found a piece of a jigsaw puzzle which had been missing for a couple of years.  I realised that Lowri must have put it in the bag and although I had already taken it out I wanted to put it straight back in - it was too late, I had broken that spell, I could no longer say that Lowri was the last one to touch it.  As time passes and I tidy away more and more of these "last remnants" of Lowri's existence here I feel like I am moving further from her.  It is hard to let go of her physical signs and so, so sad.  Some days, when everyone around me is getting ready to enjoy a Merry Christmas and I am blowing biscuit crumbs from bits of hair and carefully storing them in envelopes I may never look in again, I feel a million miles away from the rest of the "normal" world.

 

I have been digging in the garden today, in the patch that will become Lowri's memorial garden.  I ache all over but it is a good ache, I feel like I have achieved something (not a lot, but "something").  I haven't been back into the swimming pool since that first daring dip, but i plan to go back in as soon as the temp goes back above 22 degrees - the weather has been foul for a couple of weeks, don't know when we are going to get some summer.  The paving did not get done in November but we are ever hopeful that it will get done this week.  I will try to remember to take some photos tomorrow of the progress so far.

 

On Wednesday 15th December Owen is going for his kidney scan so please add us to you prayers for that day.  I am going to have to take some big deep breaths before going back into that Hospital and watching another of my children lying in that same scan room as we learned of Lowri's final relapse.

 

Harri.

 

22 Nov 2004 back to top

Today I went into the pool for the first time!!  Roosje, Liam and Tim have been using it for some time, along with many of the kids friends.  I decided I wouldn't go in until the temperature was over 22 degrees and yesterday our friend Noel gave us a pool thermometer and the kids told me "It's 24 degrees today Mum!"  I realised as I was swimming around that I haven't updated this page here for a while so here's a quick catch-up.  The pool is in and usable, but the landscaping is STILL not finished (and don't ask what the bill for the work so far is....eeek!).  The paving should be started this week and the fencing will not be done until after Christmas now.  The new lawn is planted and starting to grow and a lot of the planting is done, but there is no integration between the existing garden and the new bit so it all looks like a building site still (but not when you're IN the pool, from there it's just bliss).

 

Owen is still doing well - the Plunket (health) nurse says he is a good advert for breast milk as at his five month check up he was just one ounce short of 22lb (9.5Kg) and is up at the 95th percentile for his age.  This may or may not be a good thing.  He is still a very "labour intensive" child, and I must surely be beginning to look like a body builder from the waist up from carrying him around.

 

Roosje and Liam are both well into their tennis season and keeping me active as a taxi driver getting them from here to everywhere.  They are looking forward to our first Christmas at home, with both Grandma and Grandad Tricker coming over from England and "normal" Grandad coming up from Whakatane.  Here's hoping for a lovely sunny Christmas day so we can all get into the swimming pool.

 

The last few months have been difficult ones with so many sad memories resurfacing again, and now we are back into the time of year when Lowri was first diagnosed, and of course the time when Betty, Tim's Mum died.  I don't think that I will ever stop missing Lowri or get used to the feeling of having someone missing when the family gets together.  We tell Owen all about his big sister while we go about our daily business, but how I wish that she was here with us all.

 

I have had to move another of our Wilms' friends, Hailey, onto the list of angels, and several new children have been added to the list of current warriors.  Thankfully some children have moved on to the list of survivors.  Please remember all these children in your prayers, and rack your brains to think of how you can help to prevent or cure cancer - somebody out there must be able to come up with some bright new suggestion.  My on-line bereavement group has been discussing the truth about childhood cancer and why it is that "the public" are protected from the real facts and pictures.....but that's a whole new entry and it's already 1am.  I will try to add some photos of Owen and the garden soon, and also to update the photogallery of Lowri's photos.

 

Goodnight and God bless,

Harri & the gang.

 

7 Oct 2004 back to top

This day 6 years ago I was still pregnant with Lowri.  We expected so much for her in her future, her life held so much promise.  Tomorrow is her 6th birthday, the third of her birthdays which we have to "celebrate" without her - the same number we actually got to celebrate with her here.  I have said before that it does not get any easier as time passes.  Some things are far harder;  what would she look like now, what would she like to do, how would she want to celebrate her birthday and who would be her friends?  Some of these questions we can guess answers to; she looked a lot like Roosje so would probably look quite like Roosje did at 6 years old.  I think she might have been growing out of her love of pink by now, maybe been into purple.  She may still be friends with the same boys she "hung out" with at 3, but having spent a year at school she would probably have a whole new set of friends that we haven't even got to meet......we steer fairly clear of 5/6 year old girls.  I have included a copy of a photo from Roosje's 6th birthday party (Roosje is the second from left and Lowri is the 10 month old lying with her back to the camera, click to enlarge)  - it was a fairy party.  Lowri and I dressed as fairies too.  I wish I could do that again for Lowri, she deserved a fairy party.  To us of course she is still that cute little nearly-four-years-old who we last held - the girl we couldn't save, forever 3, forever innocent, forever missed.  Our hearts will be heavy on a day that should have been happy.

 

Happy 6th Birthday Lowri.

 

Tomorrow is also breast cancer awareness "Pink Ribbon" day here in New Zealand.  It amuses me to think of everyone wearing pink ribbons on Lowri's birthday, she would enjoy that!

 

Harri.

 

23 Sep 2004 back to top

 

Smiling, loving little girl
You brought us joy and light
Then cancer came and took you
And plunged us into night
The days drag by without you
The nights are full of tears
Our arms have ached to hold you
Each second of two years

 

Lowri, we love you right up to the moon and back..........infinite times XXXXX

Mumma, Daddy, Roosje, Liam and Owen.

 

4 Sep 2004 back to top

Tomorrow is the soccer club Prizegiving and I am having trouble going to bed.  Two years ago the soccer Prizegiving was the last time Lowri left our house alive.  I really don't like the month of September any more.  Some days the sight of the daffodils poking their yellow heads above the ground makes me want to stamp all over the flower beds, although I have previously loved the signs that spring is coming.  All this "renewal of life" stuff just sticks in my throat now.  September 23rd is bearing down on me with it's black clouds and it's hideous memories and I'm going to have to ride this storm again and again and again.  I have tried to figure out why I do some of the stuff that really hurts.  Last week we went to the Child Cancer Foundation Zoo visit (the same event that we went to later in the day of the soccer Prizegiving 2 years ago - the trip that Lowri insisted on going on even though we thought she was too sick).  We have no real reason to go on that trip any more - Lowri is not here to insist - but I know that if she was here she would insist on going.  Lowri loved the zoo, she hovered forever by certain animals.  I realised that I was standing by these same enclosures trying to picture Lowri, to recapture the look on her face and the sound of her voice.  I think that is why I went, to try to "find" her again at the zoo.  Of course I didn't find her.....she is still hiding somewhere in my head, just beyond my grasp, my brain is still playing cruel tricks with me and keeping most of my memories of her hidden from me....although I remember her essence, her feel, and her place in my life, I want to "hear" her voice again and "see" her face animated - no GODDAMMIT I want her back here and I don't think I'll EVER EVER EVER EVER stop wanting that.

**I forgot to mention that today is also Fathers' Day here in New Zealand, so fairly stink day for Tim too in it's own way.

 

Sadly I have added a couple more kids sites to our links page, and a couple of the other kids there have had bad turns to their treatment.  I know that these kids and their families all appreciate any visitors to their sites and especially if you say a quick "hi" on their guestbooks - it really does give them a boost in their darker hours.

 

Roosje turned 11 on 24th August.  Happy Birthday Roosje!!

 

Bless you for continuing to care about us,

Harri & the gang.

 

2 Aug 2004 back to top

Well I had really forgotten how much time a new baby takes up, especially one who likes to be held and patted the whole time - no free hands to type with!  I will start at his beginning and try to recap the last 7 weeks.  Wow, time flies doesn't it?

 

I had an u/s scan on Thursday June 10th and the doctor told me my baby already measured 11lb 6oz.  My midwife told me that owing to the baby's "huge" size and my advanced age (!!) I would need a C-section, so I was duly booked for an "elective" caesar on Tuesday 15th.  I was not at all pleased about that - having produced 3 large children by the natural route I didn't want to have to undergo surgery for the fourth one, so I was desperately hoping and praying that he would put in an appearance before the Tuesday.  On Saturday night I went to bed at midnight, and just as I was dropping off to sleep my waters broke. My midwife insisted that Tim and I go to the hospital even though I was not having any regular contractions, and when we got there the contractions were still irregular. The midwife went to lie down after telling me that she would "see how I progressed" before sending me for a c-section, and Tim went to sleep in the chair while I paced the floors trying to get my labour underway, and using my TENS machine and dancing to music to control the pain.  By 6.30am I rang the bell and begged the nurse to call my midwife back for me, and she arrived at 7.15 and set the room up for a birth - but was still not very enthusiastic about my abilities to push this child out. By this stage I was telling Tim that I wanted drugs and what was I thinking?? The midwife checked me and three contractions later I was ready to push - so I didn't get any drugs again. Standing up and leaning on the bed it only took a few minutes before Owen David came into the world with a huge yell (from him). He weighed *only* 10lb 11oz - which I was very glad about, and was 22inches (55cm) long, born at 8.10am (New Zealand time) Sunday 13th June 2004.  It wasn't the wonderful, relaxed birth experience I had with Lowri (see entry for 8 Oct 2003), despite the labour progressing at about the same pace and the birth being no more difficult.  I think that the fear of having to rush to theatre for a c-section spoilt the whole experience and left me scared for the safety of Owen.  Roosje and Liam had been planning to come to the birth, but that also didn't happen because I was so worried about something going wrong.

 

Owen had bad jaundice for the first weeks, which meant that he slept a lot and had to be constantly woken to feed.  He also had trouble latching on to breastfeed (he has a slight tongue-tie, the third of our children to be tongue-tied) and so it seemed like feeding him and trying to get some sleep myself occupied the whole of the first few weeks of his life.  Roosje and Liam love having him around to hug, and fight over who is going to hold him.  He looks a lot like the girls, Roosje and Lowri, did as babies, but seems to have Liam and Tim's dark brown eyes and olive skin (though a little hard to tell skin tone with all the jaundice).  He may look like Lowri, but he has a very different personality, screaming loudly when he is not 100% satisfied with life!  I have added a few photos to the photo album.

 

Meanwhile, out in the back garden a whole tribe of workers are progressing with the landscaping - with constant hammering and thumping going on all day (which thankfully Owen sleeps through).  The ground around the pool has been built up and the concrete poured, the decks are being extended and the water feature looks......well like a pile of dirt still.  I have also added some photos of the progress there.  Of course costs are spiraling out of control, so we could end up with the most expensive garden in the district - and a HUGE mortgage to pay for it all, but HOPEFULLY we will be swimming by Christmas.

 

Liam turned 9 on 22nd July.  Happy Birthday Liam!!

 

I am adding to the links page a list of all the friends who are fighting, or have fought, Wilms Tumor whom we have met through the internet.  I check all of these sites regularly (although I am a little behind at the moment).  Several of these children have recently relapsed and I know that they would appreciate your prayers and your messages of support.

 

Thanks also for your prayers and your messages of support for us, it is what has got us though some very bad times.

 

Harri & the gang (THROLaL?)

 

14 Jun 2004 back to top

Our new son Owen David (photos) arrived at 8.10am on Sunday 13th June 3 days before his due date.  He weighed in at 10lb 11oz and was 22 inches long.  He and I are both tired out by the experience of the birth, and will be spending the next few days (or weeks or months!) working on feeding and catching up on some sleep.  I will tell more later.......

Harri.

 

1 Jun 2004 back to top

For those of you wondering I am still pregnant despite being past 37 weeks - I had both Roosje and Lowri at 37 weeks, but Liam at 41 weeks (please, please, please no, not 41 weeks again!!).  Everything is taking me so long to do these days with a combination of appallingly bad memory and terribly achy body, so I don't get around to checking the computer as often as I used to do.

 

I have loaded a couple of photos of the kids in the swimming pool - they have only been in it twice so far, but that is once more than I expected.  They came out with blue lips both times.  The weather has turned a bit colder now though so I expect they won't try it again until about October!

 

Last week Tim's Dad (Lowri's "normal" Grandad) had a blood clot in his leg.  He had an operation to remove the clot, but unfortunately that did not cure the problem completely.  On Saturday he had the leg amputated above the knee.  We all went down to visit him before the operation and stayed until we were satisfied that he was on the mend.  It will take a good while for him to be "back on his foot", but he was looking pretty good when we left him.  We were all hoping that the baby would come while we were down visiting him so that he could get to see his latest Grandchild straight away, but despite some heavy and frequent contractions baby decided to stay put.

 

Harri.

 

15 May 2004 back to top

Woohoo, we have a swimming pool!!  Well, we have the shell of a swimming pool sticking up out of the ground, full of dirty, muddy, very cold water and just a few chemicals - but, undaunted, Roosje and Liam want to go for a swim......I have loaded some photos of the project so far and will hopefully get some photos of the kids and their friends in their wetsuits testing the water tomorrow.  It's hardly ready for a pool party, but at least the kids are excited by it.

Harri.

 

6 May 2004 back to top

.I have loaded a few more photos of the garden.  Had a bit of a set-back last week when the new retaining wall was put in and it was the wrong colour - it was yellow, our other retaining wall is reddy-brown.  Now it has been dismantled and is being rebuilt in the correct colour blocks.  However it has been raining for a week now and the trucks bringing the blocks in and out have left big deep ruts all over the garden..... and still no sign of the pool.  I think they need a couple of rain-free days to dig the hole and install and fill the pool, and here in Auckland it is hard to guarantee rain-free days even at the height of summer, so who knows when we'll get our pool.

 

Another sad, sad loss this week.  I went to check on another Wilms' friend who was undergoing a stem cell transplant to free him of his Wilms, and was shocked to find that he had not survived this beast.  Please say some prayers for Mason and his parents and sister.  I am really beginning to wonder about the survival figures they quote for Wilms' Tumour, so many of our little on-line friends have died.

 

We have contacted Lowri's Oncologist to discuss the chance of the new baby having Wilms' as it can sometimes be hereditary.  The baby will have annual ultrasounds to check it's kidneys, which is a big relief to Tim and I - at least if this baby does have Wilms' we should catch it earlier and hopefully it will then be more treatable than Lowri's was.

 

Hug your loved ones and tell them that you love them.

Harri.

 

23 Apr 2004 back to top

........Oops!!

I don't often check the guestbook as it automatically sends us an email with the message whenever someone signs it.  I was feeling sorry for myself as nobody had signed the guestbook for a loooong time so I decided to go and check that it was working and I found lots of messages I had never seen.  For some reason it has stopped emailing us when somebody signs, so I will have to check it out myself now until I sort out the problem.....and to those of you who signed it thank you, it was nice to find those messages!!

 

It has felt like the end of an era with Savannah's death.  Now all of the children we "met" who were fighting kidney cancers when Lowri was diagnosed are all dead, Lowri, Tyler, Brock and now Savannah.  What is God thinking?  All of their parents are hurting and will never really be the same again.  I wish that I could tell them that it gets better with time, but I haven't found that to be the case so far.  Much as I have become more used to Lowri not being here I haven't missed her any less as time goes on, nor has the pain of seeing her die eased.  Every day is another day that we have to face without her.*sigh*

 

We spent the whole of Easter weekend shifting pavers, moving rocks, transplanting plants, pulling out hedges and chopping down trees to create space for the long-awaited swimming pool.  We completely removed the garden we planted for Lowri's first birthday, the garden that she and I used to spend our time tending before she was diagnosed.  It was sad to have to get rid of that garden which always reminded me of Lowri, but sadder to have to weed it alone.  I have created a photo album of that garden, the early days, how it looked last summer and how it looks now, and will continue to load photos of the pool progress.  I also have planned to plant a new "Lowri" garden after the pool is in.

 

The diggers were due in last Thursday to "level" the section and so Tim removed the front fence from the garden.  Unfortunately the diggers put in a no-show, funny that, workmen not showing up when they say they will eh?  We have spent the last week chasing Copper (dog) back from all around the neighbourhood as every time we let him out into the garden he runs away through the space where the fence used to be.  Poor little dog will have to spend the next x-many weeks chained up.

 

Thank you for checking in on us and for remembering Lowri.

Harri.

 

28 Mar 2004 back to top

Savannah, who was our beacon of hope in our darkest hours, lost her battle to Unfavourable Wilms' Tumour on Saturday 27th March 2004.  There is not much I can add to that statement right now as I have only just read this myself on her website, but my heart really hurts for her parents as I know what pain that their immediate future holds.  Please pray for Savannah and her family.

 

I will never forget the courage that Savannah showed in facing the ongoing treatments she endured to try to rid her body of this hideous invader, I have know adults to whinge and whine about lesser struggles, she will always be a hero to me.  Why?   WHY?   Please God let someone find a cure for this disease soon!!

 

Harri.

 

24 Mar 2004 back to top

This week marks 18 months since Lowri died.  I wish I could say it is easier to bear now, but it isn't.  There are new things to mourn, missed opportunities and events, wondering how she would look now and what she would like to do.  She doesn't come out of the school gate at 3pm with the other kids, and she's not here to join in the discussions about what to call the new baby.  There are so many ways I still miss her.  I am still haunted by the memory of the pain and withdrawal she went through in the weeks before she died, and by my own helplessness as a mother, my inability to make it all better.  Gathering baby gear for the new baby is resurrecting old memories of doing this the last time with Lowri, and I want her by my side to tell the stories to - I tell her anyway, I just hope she can hear me.  18 months - it feels so long.

 

I know that I owe absolutely everyone emails, my inbox is stuffed full.  I have been spending most of my "spare" time processing registrations and creating a website for the local Junior Soccer Club, Greenhithe Junior Soccer Club.  I foolishly agreed to be club secretary this year before I found out I was pregnant, and have been very busy with this stuff for the last month or so as it is the start of a new season here.  Hopefully things will slow down a little now that practices have started and I will find time to reply to everyone (in between having a swimming pool installed and getting things ready for a new baby of course).  In the meantime I am sorry to be so slack - don't give up on me yet!

 

For those of you who spotted the ref to the long-awaited pool - things are moving along.  The diggers are due in next week, but we haven't decided exactly what we want yet - EEK!!

 

Harri.

 

4 Mar 2004 back to top

What a weekend we had for our Relay for Life.  After quite the wettest, most miserable February in living memory (remember that this is usually the best summer month of the year down here) the tail-end of Cyclone Ivy swooped into Auckland to wreak havoc on walkers, decorations, banners and tents.

 

I have nothing but praise for our wonderful team of friends and family who showed up to walk in the driving rain and wind on the Saturday afternoon and evening.  People were soaked to the bone and walking through puddles which grew to cross the entire track.  Inside the tent was not much better with rain coming in through every opening with each gust of wind, and every seat and piece of paperwork soggy too.  Luckily for all of us the organisers called a halt to the walking at 8pm due to danger from flying tent poles and tent pegs, an inability to guarantee lighting (3,000 homes in Auckland had already lost their lights by that time) and the flooding on the track.  The candle lighting ceremony was of course not done as the bags would not have withstood the wind or the rain.  Apparently the whole stadium flooded after we all left for the night and when we came back the next day our tent was holding 2 inches of water across it's bottom. One of our team could not be contacted and drove out to the stadium in the middle of the night having eaten extra dessert to build up her energy reserves - luckily she realised that the event must have been cancelled and went home again.  Walking resumed at 9am Sunday in gentler rain and a lot less wind, and most of our team joined us during the Sunday, only to get a light sunburn for their trouble when the rain finally stopped!!

 

Another absolutely awesome effort with the fundraising with team Lowri's Angels having banked over $7,000 to date, and money still coming in.  During the Relay our team won spot prizes of $200 worth of clothing vouchers, and Tim and I were presented with a $100 voucher for a local restaurant/bar as someone dobbed us in as celebrating our 3rd "anniversary" (after 12 years of marriage) on Sunday 29th Feb.  I will try to load some photos of the event soon, but we didn't take the digital camera with us as it was too WET out there.

 

I have had a sad week this week.  I had my birthday earlier in the week, and while I greatly appreciate everyone's generosity and effort in making it a special day for me, nothing highlights that "missing person" more than the "whole" family sitting on your bed first thing in the morning while you open your presents.  I missed Lowri horribly over the weekend at the Relay, then on my birthday and then we went for a tour of the hospital delivery rooms ready for when the baby comes - and guess what I was doing the last time I was there in delivery suite???  To top it all off I went with Liam to see him play his first ever game of mini-ball (junior basketball) last night at the YMCA where Lowri and I used to go to mum & baby aerobics and toddler gym classes.  Sometimes it all just hits you over again like it's a new hurt - why did my beautiful little girl just get sick out of the blue with something so incurable, why did she have to suffer such horrible pain, and why isn't she here with her family?  I love you Lowri, and I miss you, and I want you back here with me - and I always will.

Harri.

 

18 Feb 2004 back to top

I am having trouble starting this entry, and yet I know that once I get started there will be no stopping me - I have so much to say and so much sad news to pass on.

When Lowri was first diagnosed Tim and I got a lot of support and information from other parents we met on-line whose children had been dx with cancer, particularly those whose children had fought off Wilms' tumour, and one who's child was fighting Rabdoid Tumour of the Kidney, another childhood kidney cancer.  Over the course of the last month we have heard so much bad news from these parents about their children.  Firstly the friend with rabdoid, Tyler, got his angel wings after fighting for so long.  Our friend Savannah is now getting palliative care for her recurrent Wilms' and is struggling with fluid build-up and fevers.  She also has fought long and hard and had many treatments.  Just as I was taking in this information we heard that our friend Brock got his angel wings also after an almost 10 year fight against the Wilms beast.

In addition to this another little girl Emaleigh who's story I was following, who had the same stage IV anaplastic Wilms' diagnosis as Lowri, lost her battle too.  That is four friends we have lost to Wilms' in 3 months - this so called "spit and rub" cancer which is so easy to cure.  All of these children and their families could use your prayers, along with another friend Shiri who's family are still waiting to hear more about the histology (focal or diffuse anaplasia) of her tumours.

I am so upset by this, and so angry that more is not being done to stop these deaths.  I know that researchers around the world are looking for cancer cures, but nobody seems interested in finding the causes so that these cancers can be stopped before they start.  I know that Lowri's cancer started to develop whilst she was inside me - something went wrong way back then.  It scares me that whatever caused it could be something I am still doing and so I could cause it in this next child I am carrying.  I am still living in the same house in the same neighbourhood and eating basically the same diet - and nobody is asking me what I remember about when I was carrying Lowri, nobody is testing the air or the water, nobody is interested in the differences between when I carried Roosje and Liam and when I carried Lowri. I know that research is creeping forward, but each year there are more children dx with Wilms and each year some of those will not make it.  It seems to come out of the blue into some families without previous cases of cancer of any kind and for no apparent reason - and yet SOMETHING must cause it.  It is very easy to say "it's just one of those things", but so was lung cancer thought to be once upon a time.

Treatments for this particular cancer do not seem to have progressed in the last couple of decades either - except for those easy to cure cases where the quantity of treatment has been reduced.  Those children who die are negligible loss to the Wilms' researchers as they have such a good success rate with this cancer - 95% cure rate means ONLY 5% death rate.  It's a lot better than most childhood cancers, but not good enough.

 

Okay, so that was my rant, and now onto the fund-raising.

The Lowri's Angels 2004 page is now up and running with information about the Relay for Life on 28th-29th February, how the fundraising is going and who you can contact to give your donation money to.  Tim was told at the managers meeting last week that Lowri's Angels 2003 raised MORE MONEY THAN ANY OTHER TEAM at the Auckland Relay for Life last year (NZ$8,110.30)!!

It would have been nice to have heard this from the organisers a little earlier than this, but what a MAMMOTH effort by our guys.

 

I know that the children and families mentioned above could use your prayers right now, as well as your messages on their guestbooks.

Thanks for your support,

Harri.

 

21 Jan 2004 back to top

Just a quick update to let you know that I had an ultrasound scan of the baby on Monday and everything looked okay.  Another baby with a big head and short legs - we seem to build them that way.  For those of you who want to know what we know about the sex of the baby click here.

Harri

 

11 Jan 2004 back to top

Sorry it has been so long since I last updated, we have been away from home for most of that time as first it was Tim's Dad's 80th birthday and we went to visit him, and then my brother and his family came from the UK to visit us and we went to see some of New Zealand with them.

 

Our big news for the year is that we are expecting a baby, due in June.  I am already the size of a small house, and have once again developed the all-day-every-day "morning" sickness which will probably continue until at least the sixth or seventh month.  Tim has been great and has taken on all the food related tasks  - buying it, cooking it and eating it all for me.  I will be having a scan in the next couple of weeks to check that everything is okay with the baby - far less taken for granted by us this time!!

 

Sadly I have to report that little Cameron who I mentioned in my last update joined Lowri in Heaven just before Christmas.  Our friend Savannah has had more bad news about her tumours.  Please keep these children and their families in your prayers along with the other children I mentioned in the last update, and another Wilms' friend also called Cameron

Harri

 

30 Nov 2003 back to top

I had just finished updating the Photo gallery page with different photos of Lowri as a baby when I got a very sad email.  One of my on-line friends lost her battle with Wilms Tumour yesterday.  Martine is from Norway, I have mentioned her before on this page, but never got around to putting on a link to Martine's website.  She slipped away unexpectedly I think after a 16 months battle, at just 4 1/2 years old.  As long as I live I will not understand the reason why some children have to suffer this way and lose their lives at such a young age.  My heart goes out to her parents Marianne and Reidar, and her little sister Therese who are now going to have to learn to live in a shattered world.  I pray that Lowri was waiting for Martine in Heaven and is now showing her around the good spots to play.

 

Some of our other on-line friends still doing battle could do with some prayers right now too:

Shiri, in Canada, was diagnosed with bilateral (both kidneys) Wilms, but also it had already spread to her lungs.  She has done some weeks of chemotherapy to reduce the size of the tumours ready for an operation to remove one kidney, the residual tumour from the other kidney and some from her lungs.  Unfortunately one of the kidney tumours has not shrunk and so her doctors are now thinking that that tumour may be unfavourable histology.

Brock, in Indiana USA, has been fighting "favourable histology!!!!!" Wilms since July 1994 and at 16 has recently had a tumour removed from his brain.  He now is having problems with swallowing and is going to the hospital tomorrow to find out what is causing that.

Tyler, In Illinois USA, has been doing battle with Rabdoid tumour of the kidney since March 2001.  He has just turned 5.  His tumours are slowly growing and his doctors are trying to find some new drugs to shrink them.

Savannah, also in Illinois USA, is still fighting with Anaplastic Wilms and now after several years of heavy chemotherapy her blood counts are taking longer to recover after each round of chemo.

Cameron has fought off unfavourable Wilms only to go on to develop changes to his blood which indicate that he will soon have a secondary Leukemia - caused by the treatment he received for the Wilms....

These are just a few of the children who's cancer fights I have been following.  There are success stories too, but far more twists and turns than I was originally lead to believe for this very curable cancer.  I am planning to add a list of children to the links page for those interested in knowing more of the children.

17 Nov 2003 back to top

First I have to apologise to those people who did not receive their Thank You cards when I wrote the last update.  Due to various problems some of you will only just be getting your cards.  I had hoped to send them all off at the same time, but it didn't work out that way.  Sorry.

 

We went away to Melbourne for a weeks holiday (well Tim was actually working, but Roosje, Liam and I had a holiday).  It was great fun full of tram rides, shopping and eating, but a little cold for my taste.  I would definitely go there again, but at a warmer time of the year.

 

Lowri's Angels

We have decided to enter a team for the Auckland Cancer society's Relay for Life 2004, which is to be held on the weekend of 28th&29th February 2004 at Ericsson Stadium.   At the time of writing this we have 20 willing (?) volunteers to walk and raise sponsorship for our team "Lowri's angels".  In February 2003 Lowri's Angels raised NZ$8,110.30 which was all done with 2 weeks notice before the event.  This year we have longer to get organised so who knows what we can raise!!  We are still looking for team members, so if you are going to be in Auckland for those days and would like to join our effort please let me know and I'll sign you up.  We are also accepting donations towards our sponsorship, so if you email me I will let you know where to send the cheques.  More information about Auckland's Relay for Life can be found at Relay for Life and if you want to recap last years efforts Lowri's Angels page.  This years total so far is NZ$365.00.

 

Also on the subject of Lowri's Angels, or more specifically a Lowri Angel, a lady from the U.S. who designs jewelry has designed an angel pin in memory of Lowri.  If you go to http://www.designsbyrosemary.com and click on the angel index and then go to the custom designs you will find a dancing angel called Lowri who is holding a pink balloon and has a star.

 

I have added a page for my poems so that I would have somewhere to put the poem that I wrote (with Roosje's help) for the Thank You cards.  It is the impressions that Lowri left us with of a little girl so full of life and love.  It doesn't matter how many children come to play at our house, it still seems too quiet.........

Harri

 

16 Oct 2003 back to top

A note on thanks.........

It has taken us over a year, but we have finally finished all of the bereavement and thank you cards.  When Lowri was first diagnosed a lot of people did kind things for us, and we decided that rather than thank each person for each gift as it happened we would throw a big party at the end of treatment and invite everyone along and thank them in person.  As you can imagine that party never happened, and so some people have waited an awfully long time for their thanks.  As, in the words of Gladys Bronwyn Stern, "Silent gratitude isn't much use to anyone" we have been slowly working on thank you cards for those people to whom we owed thanks - they will all be posted out within the week.  It has been quite a difficult task for us to think back over that time to all the things that people have done for us, to find addresses for those who didn't leave theirs, and to complete them all before posting any out - we knew it would take a long time and didn't feel it was fair if some people got their cards a year before others.  We are truly sorry for the delay, but genuinely are grateful for all that people have done for us and for Lowri.

 

..........and a note of thanks

For those of you who we have only known through the internet, or have only contacted us through the internet we would like to thank you for all of your encouragement and prayers over the last 21 months.  Without the support that we have received we would have been lost and alone, your messages have been invaluable.

 

Harri and the gang.

 

8 Oct 2003 back to top

Happy Birthday my beautiful little angel girl.  5 years ago today you joined our family, bringing joy to us all.  So sad to be celebrating here without you.  Today would have been your kindy/preschool leaving party and tomorrow you should start school - you would have been so proud of walking into school with your big sister and brother wearing your new uniform and carrying your backpack, so much you never got to do.  We found this picture of you at Liam's kindy party, he is sitting in the Birthday chair where you would have been today, but you kept stealing the show from him that day!!  We have your cake in the oven right now, and some pink icing to go on it, and we'll send you some balloons this afternoon.  We miss you as much today as we did after you had just left.  I hope those other little angels are helping you to celebrate, Peyton, Jordie, Paige and your other little angel friends.  Sending you hugs and blowing kisses,

Mumma, Daddy, Roosje and Liam.

8 Oct 1998 My waters broke at 1.30am with a pop, a pop that woke me up.  I knew exactly what had happened because exactly the same thing had happened, around about the same time of the day, with Roosje.  Tim and I immediately started to slowly panic.  Liam had arrived so quickly after my waters broke with him that we decided it wasn't even worth trying to make for the hospital this time, we'd just stay put and have her (we knew from an ultrasound) at home.  We had the homebirthing kit in the cupboard, but hadn't really thought through all the technicalities - she wasn't due for another three weeks.  Unfortunately my lead midwife was on holiday in the UK, so we called up the backup (second) midwife.  The second midwife told us that she wasn't yet fully qualified to do home births and had to have another midwife with her, and the third midwife (they work in teams of 3) was at the hospital delivering another baby.  We waited for the third midwife to call us back to let us know whether she was going to make it to us in time.  Meanwhile we called Liam's Godparents Sue & Noel to come and look after the other two kids if we had to go to the hospital.  The third midwife called us back to tell us there was no way that she could leave the hospital for several hours as her other mother hadn't given birth yet, so she told us to come to the hospital so that she could assess me and see how long until the birth.

 

Off we went to the hospital and she assessed me and told me I could not go home, I would have to have the baby in the hospital.  At this point the contractions slowed right down.  I had had very clear views on what I did and didn't want to happen during this birth - learned from past mistakes and from lots of reading I had done during the pregnancy.  I had discussed this fully with the first midwife (the one on holiday) who agreed with me, discussed it with the second who agreed with me, but the third one just wanted me to do as I was told - bad plan on her part.  Tim climbed onto the bed that the third midwife wanted me to get on and went back to sleep.  I paced the floors trying to restart the labour.  Finally it started to pick up pace again and I kept moving around, dancing when the contractions came and just walking in between.  I was not going to get onto that bed - I had made that mistake with the last two births and was not about to do it now {for the record I believe that the only reason mothers have to get onto a bed to give birth is so that the doctors and nurses don't have to kneel on the floor during the process}.  We called Sue to come to the hospital for the birth - Tim had been woken by this stage as the third midwife tried to get me onto the bed......."Just get up there for a minute while we monitor the baby's heartbeat" {they always use this approach, but once you're on that bed you don't get off again}  The second midwife monitored the baby's heartbeat by kneeling on the floor while I leaned over the bed which was raised to it's highest setting.  As the baby's head crowned the third midwife made a last attempt to get me onto the bed and then the second midwife delivered the baby with me still leaning on the bed - she slipped out gently and calmly and was passed up onto the bed next to my head - my beautiful baby girl, Lowri Elizabeth, born at 9.18am 8 Oct 1998,  9lb 3oz, 53.5cm long, 3 weeks early (lucky for me!!).

 

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