Sunday 20th July 2008 - I have been very slack again & a month has passed very quickly! I've also had computer problems & been unable to update the website. Also, life in general has just got in the way!!
The last update I did in June was a very difficult & upsetting one with the loss of our little friend Dylan. Terry & I both found it so difficult that week yet despite all the pain we were feeling ourselves, we still couldn't even begin to imagine how horribly difficult it was for Sharron, Leigh, Teah & Darcy (& of course the rest of their family & friends). I really struggled with the decision to go to Sydney for Dylan's service. Terry was unable to attend due to work & mum would have come with me but in the end I just couldn't make it. Kerrie went on behalf of our family & said that it was a very beautiful (but EXTREMELY sad) service & that Sharron, Leigh & everyone else involved did whatever possible to make it a beautiful celebration of Dylan's life. We still find it hard to think about & we still think of the McKeown's every single day. Dylan was a very special little boy & he will always remain in our hearts.
That same week we had car trouble which ended up costing just over $1000. Although this was a huge expense we weren't expecting, on the scheme of things it just seemed irrelevant.
Tyler had also been complaining a lot about tummy pains which had us extremely concerned. I as usual, tried to think of any reason 'other' than neuroblastoma & came up with the possibility that perhaps he could be having bowel problems due to the surgery he had to remove a small section of his bowel (due to complications soon after his main tumour was removed). I had asked his oncologist previously whether he could have future problems with that & he said yes so I took him to a GP (couldn't get into our doc) who didn't seem to be too concerned with him. He gave me a form for an ultrasound (as that's what I asked for) but it was for the abdomen & I was more interested in his bowel so I never took him for the scan. Thankfully things settled down again & he doesn't seem to have had many more problems (not enough to keep us worried anyway).
The 20th June bought back the extremely distressing memories of being told that Tyler had relapsed & that his prognosis was 'not good' & the best thing for all of us would be to take him home & give him quality of life. That was 1 year ago & he has had good quality of life & has remained stable. It was & has been so difficult to sit back & wait & watch but luckily (so far) with Tyler, it was the right thing to do. With every set of scans there will be the same fear & sickening feeling but with each one we get through as 'stable' there will remain hope & that's all we can ask for.
3rd July I finally had my 34 week scan. I wish I could say it was a great experience - but it wasn't. Mum had never been to a baby ultrasound before so I thought it would be interesting for her. Unfortunately with the baby being so big by that time, you really can't see or 'make out' too much. It didn't help that the woman who did the scan was rather rude & not very forthcoming with information. Even when I asked her to have a really good look for possible tumours & explained Tyler's situation, she didn't seem to be very caring. Anyway, we did find out that at that point in time bub was approximately 5.3pounds which was 2. something kilos. My placenta has moved up around 7cm which shouldn't cause a problem with natural childbirth. That was about it. Good news anyway.
Tyler has had yet another immunization (that's the 4th visit but there's still more to go) & he got through this one without any problems which was good.
I took Ash to see Mamma Mia & it was fantastic. If you want a feel good movie - that's it. Helps if you're an Abba fan!! The following day (which was Sunday 13th July), Terry convinced me to go along for a drive to Mt Coree (in the Brindabella’s). We had been promising to take Tyler to see some snow for quite some time but kept putting it off for one reason or another. This time we decided we should 'just do it'. I reluctantly agreed to go along (reluctantly as I'm not a huge 4wdriving fan & I was 35 weeks pregnant at the time). Ashleigh also had to be convinced - but that was mainly just to get out of bed!! We did have a good day & Tyler had a fantastic time but I certainly WOULD NOT recommend it while you're pregnant. I've had constant braxton hicks & various other pains ever since!! Ash also had a good time & Terry loved every minute of it - especially the part where he almost got us bogged in snow halfway up a hill! He loves to make me panic - although I think I also had him a little scared at times thinking that I was going into labour!! See updated photos.
The first week of the school holidays Ash got pretty sick with a throat virus & flu like symptoms. She stayed away that week to try to avoid giving it to Tyler & I, however, last Monday night Tyler started complaining of a sore throat & ended up sick, now it's reduced to cold/ flu type symptoms which is good as his own immune system seemed to fight it off pretty quickly (I really believe that the Colostrum powder is helping his immune system as he seemed to get better quicker than Ash) he has developed a bit of a cough that we'll have to keep an eye on though. I came down with it yesterday & got worse overnight & Terry is feeling off also!! Just one of those things I guess & a difficult time of year to stay healthy. He did worry us again this time complaining off leg pains. Thankfully these pains don't seem to bother him anymore so they must have just been part of the flu thing.
Today, mum, dad, Ash, Tyler & I did a day trip to Sydney to see my nephew Ryan off at the Airport. He's off to Colorado for 6 months as an exchange student which will be a great experience for him. There were of course lots of tears at the airport (mainly from my sister!), but I'm sure he'll be fine & have a great time. It was a long day for us with the travelling but he was very happy to see us all before he left so that was good.
Tonight 60 Minutes featured a story on our Canberra NB friend Olivia Lambert. It was quite emotional to watch especially knowing James, Kirsty & Olivia so well as Olivia went through treatment with Tyler. Olivia is also a real fighter who I'm sure will keep fighting hard as she battles a relapse in neuroblastoma. Tyler amazed us as he sat & watched the whole thing, recognised Olivia, his hospital & his doctors & said "I used to have neuroblastoma". Terry & I just looked at each other in shock that he could even say the word neuroblastoma let alone know that he had it (I never corrected him to 'has' it as I much preferred his own words). Goes to show just how much a 3 year old can take in! For those who didn't get to see the story, you'll be able to view it on: http://sixtyminutes.ninemsn.com.au/. Dylan Hartung another Aussie kid who has been fighting NB for years was also followed up on in the story (as he's been on it before). I was just a little disappointed that 60 minutes didn't give a little bit more info regarding symptoms & diagnosis of NB & that they didn't put up the details for the Olivia Lambert appeal which James & Kirsty recently started to raise funds for more research into neuroblastoma (http://www.everydayhero.com.au/Olivia_Lambert). It's through the same area in Sydney Children's Hospital that Kerrie & Kevin started our Neuroblastoma Research Fund so between both of them hopefully we should get some more trials happening in Australia. Currently there is no cure for neuroblastoma & it's about time they came up with one.
That's about all there is to report. We're all doing pretty well (apart from this little flu thing we've got). Only 3 more weeks till baby & counting. Please keep in your thoughts Dylan McKeown's family & Olivia as she continues her fight. Our next scans are due early September so until then we will just stay as positive as possible in the belief that Tyler remains stable.
Tuesday 5th August 2008 - Tyler is still doing pretty well. The flu had a better hold of him than we initially thought but it also took a good hold of me, mum & Tez as well. Tyler's reduced to just a bit of a cough & a runny nose but my sore throat & inability to sleep at night has taken a bit longer to get better. Sleepless nights for me are also due to these last few weeks of pregnancy.
Last weekend I had an extremely strong 'nesting' urge & was in a mad rush to get every room sorted at home. This involved lots of furniture re-arranging & sorting out of things that yes, probably could have waited but in my mind there was no way I was leaving it! Poor Tez had to put up with a fair bit from me & I must say, he took it very well. My sister Lesley had asked for his help to do something at her place in the middle of the day Saturday & I cursed her so much for interrupting my nesting!!! I argued with Terry about why I should have to go etc, etc. To cut a long story short, we arrived at my sisters & it was a surprise 'PINK' party for me. I have been pretty down or 'blue' as they called it for quite some time so the family were getting a bit worried & decided I needed a pink party to cheer me up. It was a nice surprise & I felt very bad for all the whinging I'd been doing. So thanks heaps to Lesley & Rochelle for organising it, Kerrie for travelling from Sydney & to those of you who attended. It was good to catch up with you all. At least it explained the pink pavlova mum had made!!!
Ash went off to a Camp Quality Ski Camp last week & had a great time. She was worried I might have the baby while she was away but no - it's still here!
Today I ended up at the hospital for a quick check-up as I've had unbearable back pain all day. I've been getting heaps of braxton hicks contractions over the past few weeks so they monitored me for awhile - during which the contractions were pretty constant but not overly painful. The midwife believes that this bub may join us over the next 2 days or so. I'll be happy with that!! Due date is next week - 14th but most of the family are hoping for an 08/08/08 bub. I would just like it all over & done with ASAP.
Thursday 7th August Tyler has an oncology appointment at Canberra Hospital with his Sydney doctor. It will be good to see how the doc feels things are going & to talk about any concerns we've been having. Next lot of scans will be scheduled early September.
That's about all there is to update. It's been good to hear all the publicity about Neuroblastoma through Olivia’s story. We still continue to HOPE with everything possible for a miracle for Olivia & her family especially as we've travelled this horribly difficult journey together. Tyler 'touch wood' has so far remained stable & hopefully Olivia can do the same.
I have some family & 'baby bump' photos to add to the album but not sure when I'll get a chance to do it - depends on what happens with the new addition to be I guess.
Hopefully the next update will include new baby photos!!!
Monday 11th August 2008 - No, no baby yet!! I think it's going to wait right up till the day. I can probably get through 4 more days but if it goes over I think I'll go insane!!
Thursday we had Canberra Clinic with Tyler's Sydney oncologist. He was very happy with Tyler & the way he looks. He's put on some weight, is eating heaps & has VERY HIGH energy levels. Dr Toby is hoping (as are we) that the next lot of scans in Sydney will keep the progression of the previous scans & show less avid MIBG. If this is the case in the liver, then we can 'assume' that the neuroblastoma has matured. As of last scans, the original tumour bed (& site of relapse from June last year) also showed very minimal MIBG (MIBG is a radioactive dye that highlights areas of active disease). So fingers crossed that the trend continues. Toby was however, still inclined to remind me of Olivia’s relapse & 'the hope' that we don't need to have that talk again as this disease can change at any time. That thought is NEVER far from our minds so I'm not sure why he feels he has to remind us. I guess he doesn't want us to get into the false security that Tyler is cured. We know he's not cured. All we can do is continue to HOPE that the disease remains stable.
Maybe NEXT update will have some new baby pics???!!
Thursday 14th August 2008 - We FINALLY welcomed to the world, Hayden Anthony Gray-Thompson!!
He was born 12.06am Tuesday 12th August in a very rushed 11 minute delivery (only just made it to the hospital). Hayden is doing well but mum needs 3-6 weeks recovery (similar to ceasar recovery) - bed rest, no lifting etc due to potential cervix complications. A quick delivery is not always the best way to do things!!
Hayden is a very good baby & his big sister Ash & big brother Tyler are very excited (as are we all) that he has finally arrived. A boy was a bit of a shock as mum & many other people were convinced it was going to be a girl but we all just love him to bits & wouldn't change a thing!!
So far Tyler is proving to be a very loving & caring big brother & is also looking after mum as well.
A new chapter in our lives - hopefully the beginning of many, many happy times.
Wednesday 27th August 2008 - The last 2 weeks have gone by so fast & I can't believe that Hayden is 2 weeks old already!! He has been such a light in our lives & I can honestly say that I've been happier in the past 2 weeks than I have been over the past 2 years. The 24th marked 2 years since Tyler was initially diagnosed or from when we discovered the tumour in his adrenal gland & it's been SO hard. Looking back it's sometimes hard to believe that we've even travelled that road as we seem to have come so far.
Tyler is looking so strong & well at the moment but there's always that little voice inside that continues to remind us that 'anything can change at any given time'. I get so sick of negative emotions - I had enough of them while I was pregnant. It's just that we know how this disease can work - we've seen it with Dylan, Olivia's relapse & on the 25th August I read the devastating news that little Kahlilla has now lost her battle. She fought so long & so hard & was another amazing child. In her own words 'it's not fair'. She was 5 years old. Here is a link to her website:
http://www.kahlilla.com/. Please send your love & support to Lilla's wonderful family. This one has hit me hard also as I have followed Lilla's journey for quite some time now. She was a gorgeous little girl & now has a place in my heart alongside Dylan that will remain there forever.
We are getting along ok - while we're not thinking about NB. The 3 months in between scans can often become a bit like a rollercoaster. There's the relief (if given good news after the scans) then we 'live life' & try not to think about it at all for at least 2 months & then slowly the fear creeps back in when we know scans are coming up. Ours are due within the first 2 weeks of September but of course, we're waiting on word from Sydney. I worry when the scans are just before Father's day - as that's when things began in Sydney. Then Tyler's birthday is on the 19th so I don't want them around then. There's no good time I guess but it's better to just get them over & done with rather than have too long to plan or think about them.
Tyler was pretty sick the other night with what sounded very much like croup. He had had bloods done recently & his counts were great so luckily he seems to have fought it off reasonably well & I think it's reduced to more like a cold - with a very runny nose! It was pretty scary at the time though.
The rest of us are well although Hayden does have trouble bringing up wind & is often quite unsettled & in a bit of pain. He's also very snuffy at the moment which has made it hard for him to breathe at times - especially at night. Apart from that he's a really good laid back baby. We're very lucky there!
Funny Tyler story: on returning to swimming lessons Monday after Hayden was born, Lorrae said to him "I hear you have some very exciting news". He replied "yeah, the Raiders won"! (daddy had taken him to the Raiders game on Sunday). He then said "oh yeah & I have a baby brother". He comes out with some good ones sometimes!!
That's about all I have. I'll probably update again when we have confirmation of scan dates. Please don't forget to send your love & support to Kahlilla's family, Dylans family, miracles & good health for Olivia & good scan results for Tyler.
Monday 15th September 2008 - Well, the dreaded time has arrived. We finally got on to Sydney to find that our only option was to have the scans this week as there was a cancellation & apparently the hospital is very short staffed with bed closures etc so the alternative would have been sometime in October. No time is a good time so it will be good to just get them over & done with either way.
We head to Sydney tomorrow for the MIBG injection at 2pm, another hearing test at 3.30pm. Wednesday is the MIBG scan & we might ask the doctor for preliminary results as waiting till Friday - being Tyler's birthday will just be too hard. Thursday is the CT scan then hopefully we will be heading straight home once he is discharged.
Tyler's been complaining a lot about tummy pains lately. As usual it sends Terry & I into a bit of a frenzy but sometimes I do notice it happens around bed time & could be a play for a little bit of attention. He has shown no jealousy at all towards Hayden which has been fantastic but perhaps this could be his way of saying 'don't forget about me' - as if we ever would! Terry has been especially great since Hayden was born & is giving Tyler as much attention as ever, I have found it that bit harder as having a new baby is quite time consuming. He has also complained of other aches & pains which has really worried us & although we know it could be anything, it's still very hard not to think the worst. Again, we just need to TRY to stay positive.
We're going out to dinner with Kerrie, Kevin, David & Michael on Wednesday night as an early birthday celebration for Tyler - I hope we'll be celebrating.
Terry has also taken Friday off so that we can spend the day with Tyler, we might even let Ash get off school early & try to do something special. Saturday we're heading to the pool so Tyler can show off all his swimming skills. He's invited a friend from swimming lessons & is very excited (she's a very cute girl that he's very fond of!!). Then we'll head to mum & dads for a combined birthday dinner for Tyler & his cousin Jaime who turned 18 today.
Apart from starting to get extremely anxious about these scans, we are doing ok - as well as can be expected I guess. I've been a bit sick with the flu but am finally feeling a lot better (apart from being very tired from lack of sleep due to our little Hayden!!).
Terry had a really good father's day with both his boys & Ash also made a big effort to make it special for him. We all had a really nice day together with a quick visit to a shopping centre where 'Bob the Builder' was hanging out at the time. Tyler wasn't fooled though, he was very excited to see Bob but said 'hey dad, there's a guy dressed up as Bob the Builder'!! Not much get's passed him!! He & Terry then went to the Raiders/ bulldogs game & had a great time as Terry goes for the Raiders & for some reason, Tyler loves the bulldogs!
Hayden is growing up way too fast & I'm sure he's starting to smile already. He was a month old on the 12th Sept & I just can't believe how fast time is going. If we can just get through this week & get good results then I can honestly say that we may even breathe easy for the next 2 months or so & just concentrate on enjoying our family.
Fingers crossed & many prayers/ hopes needed for the coming week.
HAPPY 18th BIRTHDAY JAIME & A VERY BIG HAPPY 4th BIRTHDAY TO OUR AMAZING TYLER FOR FRIDAY!!!
Monday 22nd September 2008 - I've been waiting to have the time to sit & do an update but the past week & the weekend have just been too hectic!! Just thought I'd put a very quick update now to let everyone know that Tyler's results came back good. He has remained stable & the scans were slightly improved on the last ones so overall we are extremely happy & grateful for this news.
There is a fair bit to update re how we went in Sydney & Tyler's birthday 'weekend' but I'll have to do it in the next couple of days - just too tired at the moment! Will also update with some new photos : )
