Lowri's Journal Page 4
The updates are listed here from most recent first. You can click on a date to the left and jump straight to this entry.
It's 1am just 13 hours until Lowri's funeral. We think we have made arrangements for all we can and prepared ourselves as much we can. It is going to be a hard day for all of us, Lowri was such a big part of our lives and to say goodbye just doesn't seem real. We wrote the eulogy for Lowri over the weekend, but Harri and I know we will not be able to read it so the minister will be doing this for us. Anyway more about that later, just called in to say...
If you are planning on releasing a balloon for Lowri, wherever you are , will you please take a picture and email it to us. We have ADSL so don't worry about the file size too much, if you can't get it to us electronically email me and I will give you a postal address.
Thank you so much for your messages of encouragement and support both in the Guestbook and by email. We have read each and every one and been checking and will continue checking regularly.
The last day or so has been incredibly hard for us all; Harri, Roosje, Liam and myself, we have cried and hurt like we have never hurt before. We have laughed occasionally and know that in time we will be able to remember Lowri without pain but with smiles.
Liam and I were talking tonight as I put him to bed and he insisted on having the curtain partly open, he was the first to see what was definitely the brightest star last night, Lowri's star, and wanted to be able to see her if she passed by again tonight.
In the end for Lowri she did pass very quietly, Harri and I were both with her, the children were out with Grandma and Granddad T and returned 15 mins later - I believe God gave us this precious moment, as he gave us so many with Lowri. Some didn't seem too precious, such as during the past few weeks where we seemed to be struggling to manage Lowri's pain. Lowri knew we were trying and remained stoic and strong and was quite clear she wanted to stay in the present and NOT be zonked out - we tried so hard to do this for her. Lowri was awake and aware and conversing with us right up until the last few days, and even then she was still lucid - but betrayed by a disobedient tongue.
We have made arrangements for
Lowri's celebration, it will be at the
Immediately after Lowri's service we will be releasing balloons, if you can't make the service you could remember Lowri by releasing your own balloon wherever that may be, spare a thought for a beautiful life and wish her well.
THRLaL (that's angel Lowri now)
PS Don't let anyone tell you that you can't get Chicken-Pox twice, Roosje is living proof once is never enough!
Lowri passed away quietly at 6:00pm NZST, Harri and Tim were with her as she finally left her pain behind to fly free and go to a much better place with Jesus.
God Bless you Lowri
with all our Love always, Tim, Harri, Liam and Roosje
Lowri had her Port-a-Cath re-accessed yesterday (Thursday) and she was started on intravenous morphine. We are trying to get the dosage right, yesterday she was not at all comfortable and let us know about it! Today the dosage was increased and Lowri has trouble opening her eyes. This may be due to a sedative Midazolam being added, it's all such trial and error, meanwhile Lowri slips further away from us.
I have nothing else to add - my prayers are now for mercy and release.
The Zoo trip Sunday, along with a few bad nights, have taken their toll on Lowri. She has been tired for the last couple of days, and seems to be in more pain again. It is now very difficult to get her to swallow the medicines she has to take, and we are trying to decide whether to start giving her meds through her port. We both want what is best for Lowri, but this decision has been difficult for us because we both see it as a step towards losing Lowri.
We have been told that when she starts getting the meds IV the peaks and troughs of pain and pain-free time will stop and she will be in a more constant (hopefully pain-free) state. Unfortunately along with this the mid-points she currently passes through, which is where we see glimpses of the true Lowri, where we hold conversations and interact more with her will probably also disappear. Sometimes it is possible to put out of our minds the knowledge that she is dying, but as time passes this is harder to do. Her appearance has changed so dramatically, her arms are so thin they are just skin and bone, her torso is hugely bloated, and her legs are swollen, she can still walk, but painfully and with help, and she needs help to change position when sitting or lying down.
Lowri has steadfastly refused to have conversations about dying, just as she always blanked me out when I tried to talk to her about the treatment she was going to have at the hospital. I have talked to her about God, angels and Heaven, and how the pain is over when we go to Heaven. I bought her a little guardian angel a couple of weeks ago, and although she insists that we take it everywhere, she tells everyone that "It is a fairy, not an Angel".
Lowri got a bath this morning for the first time in about two weeks. Well to be fair she has hardly been out and about playing in the dirt. The big occasion was an outing to attend Liam's end of soccer season prize giving. Liam got awarded the 'Player of the Year' award for his team so was pretty pleased with himself. I have posted a picture in the Album of the proud boy.
After the prize giving we all went to the Zoo. The Child Cancer Foundation were hosting a day at the Zoo, we had only intended on sending Liam and Roosje with Grandma and Granddad Tricker, but Lowri insisted on going so we all went along.
It was a pretty tiring day for everyone, Lowri had Harri up several times in the night so perhaps the day out will help her sleep.
Today has not been a very good day. This morning we got a call from Savannah's 'Grammy' in Illinois, Savannah's biopsy reveals her cancer has recurred - our hearts and prayers go out to Amy, Lance, Jasmin and Savannah. They don't deserve this, we don't deserve this, NO ONE deserves this - this cancer just stinks.
My melancholy is compounded by the day Lowri has had, i.e. not a good one. Harri seems to think she is now constipated, her appetite has gone again as quickly as it came back and she is feeling really grouchy. We have stopped the Buscopan and have now put her back onto Conthram (laxative), she also has had to have some squirts of 'elixir' in the last two days as well as a disturbed night last night. She seems to be relatively settled in bed now, so lets hope for a calmer night tonight.
A highlight of the day was Liam's last soccer game of the season (he is over his spots - obviously he did his 'Typhoid Mary' bit around the school before we noticed he had them). Both teams (they play 5 a-side no goalies) played out of their skins (incredibly), I think they'll be unstoppable next year! Prize giving is tomorrow, let you know how Liam gets on later.
Lowri has had a couple of days where she has been obviously a lot more comfortable, true she hasn't ventured off the sofa, but at least been able to hold up a conversation and even smiled a bit and played a board game or two. Today she probably had more to eat in one day than what she has had to eat in all the last fortnight. Of course nothing like the hearty appetite she used to have, but it will do us for now.
There is no visible reduction in her tumour but obviously the radiation (and prayers) have been working, she also hasn't had to have any Morphine Elixir for acute pain in the last day and has remained on a stable dosage of the long acting Morphine.
While I'm on the subject of drugs, Lowri absolutely hates the medicines she is taking, they are the vilest most bitter tastes imaginable - due I guess in part because they are designed for intravenous use, she only has 0.5 to 1 ml or so orally, but one drop is enough! She is losing her patience with having to take them and I don't blame her one bit. So any suggestions, and btw honey is out as we blew that with a previous medicine and now she won't touch the stuff.
Liam is managing his spots pretty well and hasn't been too scratchy, no new spots seem to have appeared - although each time I have an itch I can't help wonder whether I might be one of those rare cases where it recurs. Seems like he is having quite a good time off school with his little sister and Mum. I had to setup the slotcar racing set yesterday for him so he should be a demon racer by next week.
I have archived some of the messages from the guestbook, although they are still accessible from this Guestbook page. My apologies to those of you who couldn't leave or had trouble leaving messages yesterday - I suspect it was me busy fiddling :-]
Our friend Savannah is having a needle biopsy of a suspicious spot on her lung today (http://caringbridge.org/il/savannah/) .Please continue to remember Savannah and Lowri in your prayers
It's been another one of those days at our place. After a good night for Lowri (waking in pain only twice), she woke up this morning screaming in pain at 7am. I quickly dosed her with Buscopan and Morphine Elixir and sat out the half hour of helplessness until she relaxed again. We then got everyone ready and headed off into town to see The Wiggles.
When we got to the theatre we were told that our tickets were not "wheelchair tickets", and so they tried to turn Lowri away as she was not able to get out of her pushchair, but when the doorman called his supervisor over she quickly arranged to have some seats unbolted from the floor and removed so that Lowri could see the show (sorry I didn't get her name, but she is my "Angel of the day"). Unfortunately Lowri and I were across the theatre from Roosje, Liam and Grandma T, but at least we were in!!! When the show started the music was really loud, and Lowri covered her ears with her hands, but I put up the rain-hood of the pushchair and she was a lot happier.
The first song they played was "Rock-a-bye your bear" and Lowri joined in all the actions, that did for me, I started crying and the tears poured down my cheeks through the next few songs, I'm sure I saw the people around me shuffling away from the crazy woman. I had not been sure that Lowri was really up to going to the concert, she has been fairly immobile sitting on the couch or bed for the last couple of weeks, but seeing her join in with the Wiggles I knew we were meant to be there. So many thoughts ran through my mind, past Wiggles concerts, the kids growing up, this being the last time I would take a child to see the Wiggles, what is still to come, and what has been, how much life this little girl used to have, and how much we take for granted. I spent more time watching Lowri than watching the Wiggles, but she watched the whole show. She claims her favourite bit was when Captain Feathersword dressed up like a butterfly and danced with Dorothy.
We dropped Roosje and Liam at school on our way home (Friend to Roosje "Where were you this morning?", Roosje to friend "We went to see a show" - she is too embarrassed to admit that she went to see the Wiggles, even though she did enjoy it).
Liam has been very whiney this last week, complaining about sore throat, sore knees, sore stomach, and coughing everywhere. We were fairly dismissive of his state, but after school today we discovered that he has CHICKENPOX. What a terrible mother I felt. He has a lot of spots on his torso, so it was fairly obvious once I looked at him properly. Of course we are now really concerned about Lowri getting it, she is not neutropenic at the moment, but she does not need chickenpox. Some days I think the devil is exercising his sense of humour around here. More prayers please.
This morning Lowri, Harri and I went to a Faith Healer called Cecily Graham, an adult friend also suffering from cancer recommended we see her. We are not deeply religious folk and weren't sure what to expect. I was deeply moved and can only say I felt an immense sense of calm, it felt as though God really was looking down on us. It also helped me with some feelings of resentment and anger I had been having - what a truly uplifting experience. The words "God is Good" have been singing in my ears all day.
As the weather was gloriously sunny and both Harri and I felt so relaxed we took time with Lowri to visit a McCafe after the meeting, as a present to Lowri and Roosje I bought two Teenie Beanie Babies (promotion at McDonalds), one of the toys was called Humphrey (the camel), the other was called "The End" a nasty Black little Bear, with words on the pack that although referring to it being the last in the promotion seemed ominously prophetic. Something like "all good things come to an end, we have had good times but now they are over". Well Harri was shaking after reading it, and I quickly took that one back - they had a nice Polar Bear I swapped it for. Next time I will check a little more carefully!
In the car on the way home we heard an advert on the radio saying that the Wiggles are in town. We had previously thought Lowri wouldn't be up to it, but figured 'what the heck' when we heard there were still tickets available. Serendipitously the Palliative Social Worker called around this afternoon and asked if we would like to go to the Wiggles, the Child Cancer Foundation had some tickets and thought of us - Lowri (and Roosje, Liam, Harri and Grandma Tricker) gets to see the Wiggles LIVE tomorrow morning. "God is Good" (You see there's that song again). Look for the show report tomorrow.
Just a quick update as it's late here and Harri needs some sleep but she won't go until she reads what I write - she insists on editorial veto.
Lowri had a much better nights
sleep yesterday, and even managed a smile and a few short conversations
during the day. It was so lovely to get some glimpses of the old
Lowri, she has been gone for the last couple of weeks - let's all hope and
pray she stays a while.
Well we all had a bad night last night. Lowri was waking up with stomach pain every half hour. She was crying out to me and holding out her arms, but there was nothing I could do to help. None of the medicines we gave her seemed to make the slightest difference, and she was still in too much pain to tolerate anybody touching her. We just all had to sit out the spasm until it subsided some minutes later. I have been finding it really hard to watch her in pain and not be able to help. I want to be able to hold her in my arms and rock her until the pain goes away, but she cannot even stand for me to lean my elbows on the bed when I am sitting on the floor beside her. One time last night I sat on the edge of her bed and she leaned against me for a moment, but then she started crying and saying that it hurt to lean on me. All I can do is sit near her and look her in the eye and tell her I'm sorry I can't help, but the pain will get less soon.
This morning I decided to try Brufen for 24 hours to see if that helped with the pain. Everyone keeps telling me that the pain is due to swelling around the tumours, so I thought that Brufen might help with the swelling and therefore the pain. I don't know whether it was what did the trick, but she seems not to have been having the spasms today. Lowri spent most of the day asleep on the sofa (hopefully not saving her energy for a repeat of last night). We have upped her Morphine and the dosage of the Buscopan for nights, so fingers crossed she will sleep better tonight.
On a brighter note the sun has been shining more this week, my daffodils are flowering, and my "hot" bed in the front garden is full of orange and yellow blooms. It feels quite spring-like out there. Roosje even went swimming in the neighbours pool after school tonight, and Liam went for an evening coaching session at the tennis club under the floodlights we campaigned hard not to have put in !! LOL.
Lowri had a day in bed today. Last night we decided to move her bed into our bedroom to make our nights a little more comfortable. This backfired in two ways. Firstly Tim could not sleep as he wasn't used to Lowri's nocturnal aural repertoire. Secondly, as there is a TV in the room, Lowri did not see the point in leaving the bedroom today. I did finally persuade her to have a bath, which left her completely exhausted, and ready for bed once more (but at least in clean PJs). I got little done myself as she demanded my company in the bedroom for most of the day also, that's my excuse anyway.
Today we have been thinking about our friend Savannah in the US, who is going for a CT scan today to check out a possible anaplastic Wilms relapse. Her story is at http://caringbridge.org/il/savannah/ Please include Savannah and her family in your prayers.
Lowri has spent the last two days swinging from quiet and relatively relaxed to cramped up with spasmodic pain. She seems to be very fond of 3.30am, having "picked" that time to wake us for the last 3 nights - we're thinking one of the neighbours must leave for work about then ?? We have added another drug to her collection, Buscopan, which is for injection, but which she takes orally, with much screwing up of the face. Hopefully this will get rid of the "gastro-intestinal muscle spasm". She has kept me busy in the laundry with her over-active bowels, and busy in the kitchen with her fancies for gastronomic delicacies which she doesn't eat more than a mouthful of. I am not beyond turning on the whole oven to bake one fish flip, or cooking three pieces of pasta, or making 1cm ham sandwiches, or grating the corner off a Weetbix to make breakfast.
I was disappointed to notice that Lowri's abdomen has grown visibly since the radiotherapy, but was relieved to learn this afternoon that the radiation treatment can cause swelling, which is probably what is causing the spasms. I pray that the side effects are worth it.
Copper has conjunctivitis (dratted mutt), so in between administering Lowri's drugs I get to take off my nurses hat and put on my veterinary-assistants hat, catch and restrain the dog, hold his eye open and put on some lotion. Then I have to scrub my hands VERY thoroughly in the hope that I won't infect anybody else with doggy-eye-gunk.
Thanks for all the wonderful entries in the guestbook, we love getting those messages. One thing puzzles me though - where are all the locals, does nobody in Greenhithe know about this site ?
Lowri, Harri and I made it through the morning rush hour traffic to the hospital this morning for Lowri's radiation treatment AND we found a FREE parking space - only 50 yards from the entrance (UNBELIEVABLE). She only had to have one treatment, we are hopeful we will see some improvement in a couple of days.
She received treatment (5Gy total) from underneath and above (Lowri lying on her back), each needing her to be positioned, the machine aligned and everyone leaving the room for the 60sec or so the machine was in operation. Lowri was a real trooper and didn't complain once, she lay very still and didn't move even though she started to cry at the end of the second shooting. We gave her Zofran for nausea before the radiation and she will take that for the next day or so. Hopefully the bad effects of the radiation won't be too drastic and has a major positive response.
The prednisone appears to have started to work - well at least Lowri has asked for some food, Harri reckons she has made Lowri 28 meals today all of which she has sniffed, scratched or licked before rejecting. Her evening snack was 1 and a half 'money-bag' pastas in a spoonful of tomato sauce, her pre-evening snack was a mouthful of chicken off a leg Harri heated up for her. Copper, our dog, is doing well on Lowri's left-overs. Oh, and by the way, those of you interested in Lowri's bowel motions - we think we need to cut down the laxatives, I don't think I need to say more.
Here's hoping for a peaceful night for Lowri and a better day tomorrow.
Happy Fathers Day to all you kiwi Dads!! Tim's needs were covered by a pack of smellies from Roosje, some boxers from Liam and chocolate almonds from Lowri, and some lovely home-made cards. We made him make breakfast for all of us though - "bacon and egg (Mc)muffins" cooked on the barbeque (luckily no frost this morning, though it was a little foggy).
Lowri gave us an early start yesterday morning, waking up at 3.30am yelling "Ow, ow, ow, ow, ow". It was over an hour later that we managed to get her comfortable enough to go back to sleep. It was another down hill step for her as she has previously slept through the night. However, she then proceeded to sleep through most of the day.
Liam had a busy Saturday morning with soccer at 8.30, Mustangs won 2-1, and tennis training at 10:30. There are a few weeks overlap in soccer and tennis training. Liam will be playing inter-club tennis this year for the first time, so he has a few sessions with the coach pre-season to bring him up to speed.
In the afternoon Tim's eldest brother and his family (wife, two daughters, son and grandson) came around to visit. We all met up with Tim's youngest brother (the famous Chris from the guestbook, whose whole office is following Lowri's story - thanks for signing), his wife, their daughter and son, Tim's father and my Mum & Dad for an early "Father's Day" dinner at a local restaurant. Lowri was there but slept through most of it.
Lowri woke us again at 3.30 this morning, but this time she agreed to go to the toilet, and had the much awaited bowel motion (there is no privacy is there Lowri?). We may have overdone the laxatives a little, as it seems all her meds came out the other end this time. We dosed her with morphine elixir and she settled down for the rest of the night. At the more reasonable hour that we finally got up this morning, she seems more comfortable and a little more alert. Couple of new photos uploaded today as well.
Lowri had a blood transfusion today as her Haemoglobin was back down to 78. Her other blood counts all appeared to be okay, although there was no reading given for Platelets, so she had another blood count done after her transfusion just to check out the Platelets. It was hard to get her to the hospital this morning as she didn't want to get out of bed, or take her morphine, nor have any breakfast (two of her meds are to be taken with food). She didn't want to get dressed, or get in the car, and she definitely did not want to go anywhere.
We finally got there in time to have her port accessed, have blood taken for cross-matching and go away for a couple of hours whilst they found some matching blood for her. We met up with Grandma and Grandad Tricker who had been to the Child Cancer Foundation to borrow a three wheeled pushchair for us to get Lowri around in, and took her out to the Museum for lunch - or rather we ate lunch and she came along too. After that she was hooked up to her new blood supply for 3.5 hours, which she slept through. It was very sad seeing her at the hospital. During all of her "curative" treatment Lowri quite enjoyed going to the hospital, seeing certain favourite nurses and the receptionist at the clinic to whom she took a particular shine. This week she couldn't even raise a smile for them, and didn't react as though she knew them.
When we returned to the car park we discovered that the parking charges had been increased, so instead of costing me the $10 I was used to, it cost me $17. I asked the cashier about this and he said it was to discourage people from parking there for more than 5 hours as there was a shortage of space. I should have thought most people wouldn't be at the hospital longer than they "had" to be anyway ("Excuse me nurse, could you please speed up that drip so that I can get my car out of the carpark quicker.").
After I got Lowri back home, I took out Roosje and Liam for a bit of late night shopping to buy some Fathers Day presents for Tim ready for Sunday (Oh dear - there goes that surprise). Meanwhile Tim had to deal with Lowri throwing up all her medicines after dinner (she did that last night too).
We have an early start tomorrow as Lowri is booked in for her "Planning" session at radiotherapy at 8.45am. Getting her there that early should be a challenge. We will have to leave home by 7.30am, so Grandma and Grandad get to do the morning school run with Roosje and Liam, and I think we'll have to take Lowri along in her PJs and worry about meds and clothes when we arrive at the hospital.
Thanks to those of you have posted in the Guestbook, these messages mean so much to us. It is good to know that so many people care about what is happening to Lowri.
We made a visit to the hospital today to meet and discuss the role of palliative radiation for Lowri. The Doctors recommended that further radiation would be beneficial in relieving some of the tumour load, and have also prescribed a short course of steroids (prednisone) to assist with associated tumour inflammation and reduce the fluid around the tumour.
Our hope is the steroids will make Lowri immediately more comfortable and mobile and the radiation will slow or stop the tumour growth for a while. We are unsure and the doctors can’t really say whether or not, or for how long Lowri can expect some relief.
Lowri had to have a finger prick (did not like it one bit!) for the Blood Counts in preparation for radiation (probably early next week). If her Haemoglobin is below 11 to 12 gm/dl (anemic) then she will have a transfusion prior to the radiation. She is pretty tired at present and it is difficult to differentiate whether it is because she may be anaemic, hasn’t eaten enough to keep a sparrow going for the last week, a side effect of the pain relief meds or most likely a combination of everything.
Lowri’s 4th birthday is on 8 October, Harri and I thought we might celebrate this early, but will now wait and see how well the radiation and steroids work first – Lowri really wants to go ten pin bowling, as she has trouble even walking this could be a challenge for her.
Thanks for writing in the Guestbook, please don't be shy, a corny joke serves just as well if you don't know what to write, Harri and I take great heart and get a real boost knowing so many people are caring and praying for Lowri, (and knowing that we aren't just writing to ourselves-Harri) and (ain't no rule that says once is enough either - Tim).
The hospital got back to us, Lowri is in tomorrow for a Blood transfusion, we assume her other blood counts and functions are OK so it looks like the radiation will go ahead early next week.
Roosje's party went well on Friday evening, with all the children (Including Tim!) enjoying LaserForce. Of course Tim "shot" more people than anyone else, what a nice father. Grandma and Grandad Tricker made it to the party, but then retired gracefully due to jet-lag. Lowri also went to the party, but after the dose of Morphine elixir we gave her in order to get her off the sofa and into some day clothes, she was pretty dopey all evening.
Saturday was another day when Lowri was obviously in pain for most of the day. We gave her top-ups of morphine throughout the day, but they just lead to her being tired and itchy. We all went out for an early dinner with Grandma and Grandad, Uncle Chris and Aunty Angela, Rochelle and Aidan. Lowri went out in her PJs.
Saturday night we increased her base (slow release) Morphine level, and on Sunday she was a lot more comfortable, actually responding to people around her, and laughing a little at things on the TV. She still refused to change out of her pyjamas and spent the whole day on the couch. It is hard to watch her change before our eyes from the happy little soul she was just a couple of weeks ago to the quiet, unhappy child she is at the moment. She complains about pain when she is carried, when she is hugged, she even complained that kisses hurt her.
Today, despite increasing her base Morphine again, she is uncomfortable. She has also developed a chesty cough.
We are interested to know who is following Lowri's story, so if you have the time please sign the guestbook to let us know who you are.
Liam and Roosje have almost caught up on their sleep from the weekend S.O.C.K.S camp. I reckon we even might be able to make it to school on time tomorrow!! For the last four mornings the School pedestrian crossing has already packed up and gone in by the time I have managed to get them there.
Lowri continues to have good and bad periods, the last few days have been really hard for her and she has been in pain most days. We think today we are getting on top of her acute pain. The giving of pain killers to get a balance between sleepiness (over) and discomfort (under) we are still working on.
The palliative care team from the hospital visited today - it was really useful and certainly made me feel less 'on our own' than we have for the last couple of weeks. They are going to give us a referral to the local Hospice, so between ourselves and these groups we hope to be able to get the support and backup we feel we need. Harri and I both feel that unlike adult cancers or some other pediatric cancers, Anaplastic Wilms is very fast moving and to stay ahead of Lowri's pain we need her to be reassessed every couple of days if not more often. Typically Lowri was quite jolly and engaging (even if from a reclined position on the sofa) when the team visited, so we probably sounded like worrisome parents.
Harri and Roosje are doing some shopping tonight for Roosje's birthday party which she is having on Friday - just the essentials - cake, lollies, chocolate etc. Granddad and Grandma arrive from England tomorrow morning, just in time for Roosje's birthday party in the afternoon.
I have rearranged the photo albums - the most recent photos should be on the first page you go to when you click on the Photos button, the other Albums are sequential Album 1 being the oldest.
Roosje and Liam went on the S.O.C.K.S (Siblings Of Cancer Kids) camp on the weekend at the the Maritime Education and Recreation Centre (MERC) at Long Bay - 10 minutes from home. They had a great time doing things like abseiling, kayaking and swimming (brrr) and judging by the fact they both slept in and and were late for school Monday didn't get much sleep. Liam lived up to the 'grotty boy' stereotype arriving home Sunday in the same clothes he wore when he left on Friday, at least his pyjamas stayed neatly folded.
Lowri and I spent 3 hours in Starship ED- (running a temperature), last night (Sunday) and didn't get home until after midnight after Lowri failed to perform for a urine test. I feel really resentful of 'wasting' any of L's time dancing to others tunes. I feel annoyed with myself for not trusting my own instincts and letting others actions and decisions (for whatever best reasons) upset Lowri - firstly through unnecessary stress and secondly in wrecking her for the following day (lost sleep / missed meal etc).
We are continuing to struggle to balance Lowri's pain medication (under dosing), we have stepped up the long acting morphine
Lowri has always said she wanted to ride a horse, so today we arranged to take her out for a ride on our neighbour's horse in the countryside. Lowri wasn't too sure about the horse - it certainly was a lot larger than I think she expected a horse to be up close. Harri did a great job of putting Lowri's fears to rest when she fell off - without actually managing to get on, (only a bruised bum and dented ego - we think, apparently it hurts). Eventually Lowri did get up for a little ride (accompanied by Fiona), she even got to feed 'Barney' the horse some carrots. I have posted a couple of pictures, unfortunately I missed Harri's display of equestrian prowess, now that would have been a photo!
Roosje's birthday is coming up (24 Aug), tonight we made and printed some invitations on the computer. She has been intent on going to LaserForce (laser shooting game) ever since Liam had his birthday there last month and she didn't get to go in (broken ankle kept her on the sideline).
We have just come back from a two week "holiday" around Rotorua, Tauranga and Ohope, which was surprisingly fun for the most part. Lowri was on good form for most of the time, but had some periods of pain, increasing as the days went on. Since our return she has been complaining of a "sore tummy" most of the time. We give her a dose of Panadol, which obviously kicks in after about half an hour, and lasts for about 3 hours - not long enough to last until the next dose is due. She has an appointment at the hospital tomorrow and we hope they can do something about the pain. The right side of her abdomen is now hard and bulges out from under her rib cage front and back. This is totally heartbreaking. When the pain returns she walks around leaning to one side, shuffling slowly like a little old woman, and talks in a sad whining voice - so unlike her "usual" self. She says she is hungry, and then she is full after just a few mouthfuls. She has been riding her trike around the house - this seems easier for her than walking now.
We continue to search for a possible "cure" for her, we would move anywhere in the world to save her. We have spoken to and e-mailed doctors and drug companies and alternative therapists in the US, Australia and the UK.
We took hundreds of photos on our trip. An attempt to catch something of the essence of Lowri. I have started a new photo page and will post the holiday snaps there.
Addendum: 14 August 2002
We made the hospital appointment and Lowri was examined and prescribed Morphine for the increasing pain she is now starting to have. The last couple of nights she has spiked temperatures (tonight 40.4deg C) - remember she has never had a fever throughout all her treatments. As silly as it sounds Lowri being sick is a foreign experience for us.
The last two weeks have been the a roller coaster ride for us, so sorry we haven't posted earlier.
Immediately we heard the prognosis we went into various states of anger, denial, grief and disbelief. We followed up with the hospital the following week and had a meeting with Lowri's doctors who confirmed that they had sought further opinions on Lowri and all agreed that no further medical options remained. I followed up on the Iressa trials (a drug showing good promise in the slowing and arrest of solid tumours), unfortunately the trial based in Australia is still before their ethics committee and it is unlikely to be approved in the next few months .. too late for Lowri.
I met with the Radiation Oncologist last week who initially thought that radiation to Lowri's liver and focussed radiation to the new tumour on her lungs may be an option, this week however after wider consultation he recommends only pallative radiation to offer relief when Lowri becomes symptomatic. The decision to not continue with any treatment is all the more difficult to reconcile given that Lowri remains her bright cheery self and is not showing any visible signs of her cancer.
We still feel that Lowri's treatment was stopped because of the probability of further tumours rather than because they couldn't treat the tumours she has.
Harri's brother, Jeremy made a whistle stop visit all the way from the UK and spent 5 days with us. We enjoyed getting to see Jerry again after such a long time, eight years for me, and 6 years for Harri, Liam and Roosje. Lowri struck up a great friendship with her Uncle and saw to it he didn't get a moments peace to recover from his Jet-Lag ... Uncle Jereemee, Look Uncle Jereemee, Come Uncle Jereemee.....
It was Liam's 7th birthday (22nd July) and we went to 'Laserforce' where Liam and eight 'good' friends blasted each other in the dark with Laser guns, everyone had a great time and aside from a few carpet burns no major mishaps. Then back home for presents and cake.
Liam and Roosje went back to school last Monday after the term two holidays (four terms in a year).
Roosje went to hospital this afternoon to have her cast removed (Go Roosje Go !!), now she will be without the cast to slow her down I have decided to take some leave for a couple of weeks, just some time for us to be a family together and distraction from the present. I expect we may have to face a few difficult questions given the changes in the routine around here, but we will cross those bridges when and as we come to them.
PS I have put a few more pictures in the photo albums.
We took Lowri to the hospital yesterday morning for the operation to remove one lesion from her liver. As part of the prep for the operation they did an ultrasound of her liver to check on the status of the tumor. They found a second lesion on her liver, close to the first lesion and still operable, but decided to do a CT scan to check for further disease. The CT showed a new lesion on her right lung. As she had received radiation to her lungs previously, and had been receiving chemotherapy, this indicated a failure of both radiation and chemotherapy to control her disease. They decided that the risks involved in the liver operation were too great to continue "just to buy time". Half an hour later we were on our way back home, with an appointment for next week to discuss palliative care.
Just like that.
The larger liver lesion had grown considerably from the CT scan 5 weeks ago, more than doubling in size. I asked the doctors how long they thought we would have Lowri for, and the answer was in the order of months only.
We made some phone calls to family last night, I couldn't stop the tears... and feel like my heart has been ripped out, I have a screaming headache and find myself thinking about a million what-ifs. The future scares me.
We have not told the children yet about this latest news, how do you. They know Lowri was going into hospital for an operation to take the cancer out, as she hasn't had the operation they have already started to ask the obvious questions.
Thankyou for your thoughts and prayers.
This site was last updated 10/08/05