LIAM'S JOURNEY

The “funrazor” was alot of fun on Thursday night, with thousands of dollars raised throughout the country.  There were many brave souls who loped off their locks and one of the most courageous ones was a young lady who had beautiful black hair halfway down her back and received a number 4 cut.  It was at that point I thought to myself, if she can do it, I’m pretty sure I can do it!

Then over a glass of wine (only one I promise) Shanell, Catherine, Alli and I made our pact to shave our heads at the next years event.  Unfortunately that gives us 365 days to mull it over, and I am finding myself obsessed with trying to figure out what I will look like with a bald head.  I promised Shanell that I would post it on the blog so there was no backing out and she’s put it on hers, so we don’t have much of a choice now.  Its going to cost you all though, for those of you who haven’t seen me for a while I have let all my natural curl come back, and it is below my shoulders now so you can imagine what another years growth is going to be like.  We are hoping to raise at least $50,000 between the four of us, so watch this space as I will start collecting in about 6 months time.

Liam is good, we attended the Wellington Special Kids Christmas party yesterday, and him and Ashleigh received some very cool presents from Santas in his Grotto.  I have been a little bit worried about his eye which is weeping alot and there is a fair bit of redness, but we are seeing the surgeon this Friday so will watch him closely to see if I need to take action before that.  He had a bit of a viral bug during the week as well, but bounced back from that pretty quickly.

Thank you to Jo for posting the link to “Davids blog”, with the little amount of information out there about Liams type of tumour, anything we can lay our hands on is great, and the fact that the treatment that child has been through is so positive is very heartening, and from what I can gather a real breakthrough in the treatment of this type of tumour. 

Thats all from me for now, am off outside to enjoy the sunshine!

ps.  I passed all my second semester exams, am halfway there now!

Just a quick note regarding the “funrazor” which is occuring at 22 locations around the country tomorrow.  This is a major fundraiser for the Child Cancer Foundation.  It involves people “shaving their lids for brave kids”. 

The Wellington event is happening at Midland Park, Lambton Quay at 4.30pm.  Shanell’s family including Jason, Kaleb, Jordan and her Dad Selwyn will have their heads shaved. 

Liam, Ashleigh and I will be there to support (I may get my head shaved next year…) and would love for anyone to come join in the fun. 

You can make a donation via the CCF website, or Shanell’s fundraising page

Becs

We loaded up the bikes and kids and headed off to attempt to conquer the Wattyl Taupo Cycle Challenge on Friday.  We registered amongst the other thousands late in the afternnon, and out of 9 of us the only one to win a spot prize was Ashleigh.  Unfortunately for her it was a bottle of wine, which obviously was quickly claimed by her mother!

We struck our first we hiccup in the morning when we arrived at the start line and attempted to get Olivia onto the bus to take her to the first relay changeover.  I misunderstood something someone had said and nearly got her onto the wrong bus.  Thankfully a vigilant Mr Quine noticed and after a little bit of stress from me we got her on the right bus.

Fiona and I lined up for our start, and we soon off for our ride.  I was cruising up and down the hills for the first 40k and was feeling pretty good when we got to the changeover point and Olivia took over from Fiona.  About 20k later I was dreading the fact that I hadn’t done more training when my thighs turned into two great big lead weights.  The following 20k was very very long, but Olivia and I conquered the Waihaha hill (which I can tell you I was not laughing on!), and I nearly cried with relief when I got to the 80k mark where Rose took over for the second 80.  We were then bused back to Taupo (alot quicker than biking I can tell you!) and our bikes followed on the trucks.  We then had to wait for our bikes to be unloaded before we could head off to meet the kids to ride the last 5k with them over the finish line.  I must admit my bottom was not too happy about getting on the bike again to ride up to where the kids were waiting.  Not long after we got there Matt and Rose arrived and the 2 teams and 4 children headed off for our heart ride.  The kids had a marvellous time and it was really exciting coming across the finish line and hearing their names on the loudspeaker and everyone cheering them in.  All in all it was a spectacular day, the temperature got up in the mid to late 20’s and we had a lot of fun, but were pretty exhausted at the end!

Unfortunately we didn’t win any of the spot prizes, even though I was sure we were going to win the car – oh well, we will have to do it again next year!

Liam and Ashleigh ready to ride

Funny story for you – There were about 10,700 participants so of course there were a fair few portaloos around the place, and Ashleigh decided she needed to go.  Now I don’t think she has ever used a portaloo before, and was quite disgusted when she opened the door and looked in.  She was horrified that the toilet hadn’t been flushed (did a bit of explaining about portaloos about then) and she exclaimed that there was a sausage in there, to which I informed her, “no darling that will be a poo”.  She did her business and came out, and I then took my turn, much to my amusement as I looked down there actually was a whole sausage in the toilet – yuck!

Ashleigh had a wonderful time at Siblings camp over the weekend.  We arrived at 1pm on Sunday for the presentation and to pick the kids up and were treated to singing, introductions from all the kids and a slide show of the weekends events.  One of the comments that Marg (from CCF) said was that she was very impressed with the children who overcame their fears, whether it be heights or of water to give an activity a go.  The slideshow was fantastic and there was a couple of beauty photos of Ashleigh – one bouncing high like a starfish on the trampoline and another flying off the end of the waterslide.  I was very impressed with the waterslide one as it is very high, very fast and lands you straight into the lake, so I think Ashleigh was one of the ones Marg may have been talking about!  Ashleigh was very proud to tell me that she had given it a go.  The leaders did a fabulous job of looking after the kids, and all the CCF staff, Marg, Sally, Sally B and Alison amongst others, along with the Canteen support crew really outdid themselves.  It was an absolute privilege for Ashleigh to go, and she is already gearing herself up for next year!  In farewell they sung us the special sibs camp song which includes the words “specially important brothers and sisters”, which really was the focus of the weekend.

Liam and I spent most of Saturday at the Kapanui School gala, wandering around in the heat entering competitions like – how many jelly beans in the jar, how many balloons in the car etc.  I entered a raffle where Liam chose the number and we won a potted chrysanthemum, I will see if I can keep it alive for more than a week!  I also ended up making ice-creams, and thanks to the beautiful day we had a constant stream of punters.  I think the school will be very pleased with the results of the day.

Liam and I then headed into Wellington to spend the night with Jasper and the girls.  We were very happy to witness the Kiwis win the Rugby League world cup, especially as we beat the Aussies to get it, and then see the All Blacks beat Wales.

After picking up Ashleigh we went down to the Waikanae Pools to cool down abit as it was another very hot day, and then once they both got into bed about an hour later both of them were asleep before their heads hit the pillow.

Liam and I went back into Wellington today to finally pick up his splint for his leg.  It is a long piece of plastic shaped sort of like a half a boot, and will hopefully assist with getting his foot back into the correct position and stop him rolling his ankle.  He has also got a fabric ankle support that he will wear to school and while he is playing sport which give it the support it needs. 

Thats about it from us for now.  We are off to Taupo on Friday for the Taupo Cycle Challenge (I’m only doing 80k this year, haven’t done enough training for the whole 160), the kids are riding the last 5k’s with us and are very excited so will post again next week with some photos.

Take Care

I attended Kyah’s funeral in Johnsonville today.  It was a beautiful service but as it was always going to be a tough one to get through.  Shanell and Jason chose some lovely music, including Sarah McLaughlan (both Penny and I had her music at the boys funerals) and somewhere over the rainbow.  They had a gorgeous collection of photographs showing Kyah throughout the stages of her life and the celebrant read a moving tribute written by Shanell and Jason and her big brother Kaleb read out a poem he had penned himself.  There was no shortage of tears flowing but the support and unconditional love Jasons dad Graham spoke about was obvious. 

Ashleigh is at “sibs” camp this weekend up at el Rancho.  It is a camp for the siblings of cancer sufferers and is from Friday night until Sunday.  They have got a fun filled weekend planned with all sorts of activities including mud slides, archery (god forbid!) and horseriding.  She has been so excited about it, counting down the days and is so far having a brilliant time.  Lights out is at 10pm each night so good luck to them all!!

Liam and I are attending the Kapanui School Gala tomorrow, we will be making ice creams and spiders and somewhere in amongst all the things to do I am going to attempt to squeeze in a helicopter ride, will have to see.

After a long fought battle, beautiful wee Kyah passed away peacefully at 11.55am this morning, 9 days shy of her 3rd birthday.  Her Mum Shanell and Dad Jason were both with her when she took her final breath.

My heart aches for them as I know the pain all to well.  Life can be so very cruel, and so very very unfair. 

Love and sympathies to their family.

We had an appointment today with Professor Christian Kratz who is one of the new paediatric oncologists at Wellington Hospital.  He has done some research into genetic links between myoepithilial carcinomas and other cancers and has come up with a documented link between Liams type of tumour and colon cancer.  There is a bit of a family history surrounding bowel/colon cancer so Christian has taken the information away and is going to do some more research and will look into some sort of testing for both Liam and Ashleigh to begin with and then possibly the rest of the extended family on the Todd side.  It is great to finally have someone takiing an interest in Liam and actively seeking some answers.  I will keep you posted with any updates. 

Liam also had his 3 monthly chest x-ray today and with a bit of luck that will come back clear with no problems.  He has been collecting a fair few courage beads so thought I would post a photo.  Each bead represents a different procedure which he has had to undergo.  He is up to 118 beads, and when looking like that it really gives an idea of just what he has been through in the last 6 months.

The kids were invited to participate in the Wellington Christmas parade today. I must admit I was feeling abit lazy this morning (after a BBQ last night and the best part of 2 bottles of wine) and really wasn’t feeling like driving all the way into Wellington to attend. I am so very glad I made the effort as the kids had a fabulous time, the weather was beautiful and apart from a fierce wind blowing through where the floats were lining up it was very warm. The Child Cancer Foundation had a float which was built this year and organised by Westside Studios. It consisted of two pirate ships which were being towed by a black Hummer, as you can see in the photos. (to enlarge the photos just click on them) The kids were all dressed up in their pirate costumes with eye patches, swords (I admit I was a bit dubious about allowing my two swords!) and cool hats. Olivia, one of the Mums got into the spirit and dressed up as she was riding on the float with her young children. I felt a bit sorry for her getting stuck with all the kids, but she was awesome yelling out to the crowd etc, and I think she enjoyed herself!

Once the floats started going we bounced along the street catching up for photos and yelling out to all and sundry. There were thousands of people lining the streets, and the kids had lost their voices by the end of it from yelling so much.

This cancer business is pretty rough, but the kids are getting to have some wonderful experiences, I don’t think they are going to forget this one in a hurry.

Becs

Hi!

I have finally got the internet back up and running. Not having it for two weeks was very strange, I am not sure what we used to do before internet.

The last week or so has been very busy. We went to Wellington Zoo on Saturday and got to meet the new Paediatric Oncologists, Christian and Mwe Mwe (pronounced Moi Moi) at an afternoon tea with all the rest of the CCF community. It was fabulous to meet them and it wasn’t too long before I bailed Christian up and explained Liams case to him. I was terrified that somehow we were going to slip through the cracks and they weren’t going to have Liams case passed on to them. I told him about Matt and Liam and the family history and he said well there must be a family connection there, and is very very interested in Liam. I was so relieved. Finally someone who is on the same page as me and is actually listening to what I have to say and someone who cares. We now have an appointment to see him on Tuesday where we can sit down and go through all the details, and see what he thinks of the path we have taken so far and what we should do in the immediate future. I must admit I feel like a great big burden has been lifted from my shoulders as the onus for figuring out treatment options has now been passed back to where it belongs. Wellington are lucky to have them and I hope the DHB comes through with their promises to enable us to keep them here.

The rest of the week has passed by in a busy blur, in between all the touch (have ended up coaching if you please) and swimming and other after school activities.

Ashleigh and I went to touch last night, while Jasper and Liam went down and had some special time at the beach. Unfortunately Liam developed a suspected ear infection, and Jasper raced him to Waikanae Medical Centre, who saw him straight away – I think they are used to us by now! – He was not a happy camper and the Doctor could not see his ear drum so wasn’t able to definitively say that he had an infection. So I sat there later thinking if it is not an infection is it something in there pressing on something else, do I overreact and ring Ward 18, do I potentially underreact and not do anything, am I being silly and maybe it really is nothing! Arrrgghh it is really hard to know what to do when everything is so uncertain. I decided in the finish just to keep an eye on him and pamol, ibruprofen and a dose of antibiotics seemed to do the trick, and he has been fine today, even playing a game of touch. I told the ref at touch that Liam was going to play with no shoes on (against the rules) as the shoes slow him down as he struggles to run in them because they twist his foot and he is so fast with no shoes on! He will finally get his splint on the 24th of this month (about 3 months after the first appointment!) and hopefully we can go some way to fixing up his ankle.

Liam and Ashleigh have been invited to ride on the Child Cancer float in the Christmas Parade on Sunday and will be dressed as Pirates, so they are quite excited about that, so if anyone is intending on going look out for them.

Hope this finds everyone well, love still being sent to Shanell, Jason, Kaleb, Jordan and Kyah.

Becs

Hi!

Sorry I haven’t posted in a while (been told off by a couple of people!) but I have had my nose firmly entrenched in text books for the last week or so.  I have gotten through 3 exams and have my last one this afternoon at 2.15pm.  I will definitely be having a sneaky wee drink tonight when I get home!  I am quietly confident about the ones I have sat and today’s one is Business Law which is open book and I have done very well in the assignments so am not particularly worried.  I think it helps that I have had 10 years in the Police to help me interprete the law.  (won’t be funny if I now go and fail it!)

Liam is good, I have noticed him getting very tired lately, so of course the old cancer radar pops up and I start to worry about everything from his breathing to his nose to his leg.  I went through the same thing with Matt for the 2 odd years he spent tumour free with thinking everything was tumour related.  I guess I will get used to it again.  Realistically he is probably going through another growth spurt – just what we need, him growing out of more clothes, I am struggling to feed him enough to keep up with his height as it is!  The boy has hollow legs, but I will be getting onto the oncologists to book him in for his next chest xray soon.

He is also having a couple of problems with his leg/ankle where the bone and tissue graft were taken.  I was watching him playing sport on Monday night and noticed him roll his ankle 3 times in the space of about 5 minutes.  It doesn’t seem to hurt him but if he continues doing it he will do some damage.  I need to get onto the Orthotics centre after these exams are over and put a bullet up their backsides.  His splint was supposed to be ready 3 weeks ago, I can’t believe these people make things so hard for us. 

We meet the new oncologists for Wellington this weekend, at the zoo of all places!  We get to have a wander round the zoo and then have an afternoon tea with them to introduce ourselves.  It will be good to finally have some cohesion and consistency up here.

Well I best be off and do some more study, I am going to be a very happy little camper at approximately 5.15 tonight!!! 

Becs