Wednesday 3rd October 2007 – Tyler did end up sleeping through the night (last Friday) but recovered well the following day. We haven’t done a lot over the past few days, just caught up with family.
Sunday night Terry & I had our first night out together in ages to attend his brother Daniel, & future sister-in-law Alison’s engagement party. It was a really good night but we have decided that we are far too old (or just plain ‘over’) getting home at 5am in the morning!! It was a long recovery on Monday!! Thanks to Marty (another brother) for being such a bad influence!!! We did have a good time though.
We’ve had a couple of Ashleigh & Tyler’s cousins stay over but apart from that life has been pretty quiet. Mum & dad headed off to Sydney today & are off on yet another big adventure tomorrow leaving for a 6 week trip to America with uncle Mick. It will be strange again not having them around for that long but we just hope they have a great time.
Tyler is still going great & his skin is now starting to settle down again (retinoic acid finished Saturday). He just has so much fun at home & keeps himself easily entertained & busy. He’s doing great with toilet training & will be out of nappies for good in no time. He’s just far too big for them & it looks wrong! He was doing well with toilet training before he got sick (or was diagnosed) so that was over a year ago now but it was much, much easier in hospital to keep him in nappies. I’m very glad that we’re getting rid of them now though! We bought a little bike the other day so the next plan is to get him riding it. He still needs to gain a bit more leg strength so that should be good for him. He was SO excited when he woke up & saw it & just kept coming into Terry & I saying ‘thank you for my bike, it’s cool, I love it’ etc. We also got lots of kisses & cuddles! He can be SO adorably gorgeous but at the moment he tells daddy that ‘it’s just too hard to ride’! Give him time as we know this boy can do & achieve ANYTHING!
Finally added all the photos - there is quite a few!!!
Thursday 18th October 2007 - It's been so long since my update & I must admit I've just kept putting it off as life has felt kind of normal (which is wonderful but it's still a real sense of false security). We've been having a really good time & Tyler is going so well that sometimes we prefer to not think about the reality of the situation as a whole too much & it really has become much easier to allow ourselves the comfort of believing that everything is fine & will remain so.
Over the past couple of weeks we've just tried to keep busy. I myself am going a little stir-crazy & would love to go job hunting & get some part time work but I think I'm kind of stuck until Tyler gets re-immunised next year as I don't think I'd be able to (or want to) put him in day care at the moment. I'm feeling unusually exhausted & think that it might be partly due to being at home too much - sounds crazy I know but there's only so much housework or gardening you can do!!! Today I ended up back in bed for 3 hours which is something I never do, I just felt SO tired. It probably won't hurt to get my bloods checked to make sure I'm not coming down with something or lacking something or perhaps it's just the last 12 months or so catching up with me. Terry is due to go back to work mid November which he's a bit concerned about as this time with Tyler has meant so much to him (to both of us) but he's very grateful to have had this quality time over the past couple of months & it has been quality time as Tyler (touch wood) has remained so well & is 'just a normal little boy'. Extremely precious & amazing to us though!!
Here's a brief update of the last couple of weeks so that I'm not up all night typing!!
Friday 5th October Ash went to her dads for the weekend & Terry, Tyler & I decided to do an afternoon trip (with the dogs) to Lake Eucumbene for some trout fishing & got there around 4.30pm. My only rule of fishing - whatever's caught on my rod, gets released. Of course I caught the only fish of the trip so Terry over-ruled my rule giving me the whole 'it was the only one we got, I couldn't let it go'. We had a beautiful afternoon & although I didn't expect to, I really enjoyed it. I did panic a little when our dog 'Charlie' decided to go swimming in the lake. She loves swimming & is used to our dam. My problem was that the lake water would have been extremely cold & I kept picturing that she'd freeze & drown. Luckily she was fine but was quite shivery once back on land!! Once it became a little too cold & windy we set up Tyler in the car with his DVD player & a movie & he was fine. Next time we'll just be a bit better organised & have a fire & more torches (gets a bit dark out there!). We ended up getting home around 10.30pm that night & Terry & Tyler both enjoyed the trout a couple of days later.
The second week of the school holidays was pretty quiet. We had Ashleigh's cousin Taleisha stay a couple of nights over the holidays which they enjoyed. We were very excited about finally getting a fire pump for the dam & all the hosing etc so we can now water the garden & grow some veges. Very exciting for us as we've wanted to get that set up for so long. It's also a lot more reassuring to know we can now access water if there are any fires out here over summer.
We caught up with Amanda & Graeme on Bathurst weekend where Terry & Graeme (& some other guys) had to do the 'boy thing' by hanging out in the shed (theirs not ours) watching the race & drinking beer. I was merely the taxi driver for Terry! Tyler had a fun time catching up with Jazzmyn & having some cuddles.
We had an appointment with Tyler's paediatrician on Wednesday 17th & had to get bloods done in the morning. Bloods were all pretty good & doc seemed pretty happy with him. Main reason for visit was just so that they can check him over before the next round of retinoic acid (which again, we had problems getting from Sydney so he'll start Mon/ Tues instead of Sat) to make sure that they don't need to adjust the dosage etc (if the side effects are too bad). Apart from the skin getting extremely bad (& the moodiness/ behaviour in QLD) Tyler was ok so there was no need to adjust. It was the first time we had actually been to this doctor so he didn't know exactly what was going on with Tyler (current treatment etc) but has all the documentation there from Sydney. It was thanks to this doctor & our GP that we got to Sydney so quick when Tyler was first diagnosed last August.
Last Sunday was a busy one where we did a quick stop at Floriade (so I could get some family pics) & then headed out to Murrumbateman for the field day which we really enjoyed. Was a very tiring day but good. We also acquired a little pet lizard that we are 'temporarily' caring for at the moment. Ashleigh spotted it at home & managed to catch it. We believe it to be a 'Jacky Lizard'. My nephew Michael has quite a 'reptile park' in his bedroom (has all the permits etc) & may end up with this new addition. He's very knowledgeable about all sorts of lizards & snakes which has in turn given Ashleigh an interest in them (not snakes thank goodness). Tyler also loves them so now we have this cute little lizard set up in a tank which I take outside everyday to give it some sun & feed it some live crickets & check that the temperature is alright in the tank etc, etc. Who'd have thought I'd ever be doing that! I think we will most likely release it sometime soon though - we'll see.
Terry took Tyler to swimming on Monday, first time he's been for quite a while & he apparently cried a little then was fine & happy telling them all about his holiday & when it was finished came out to Terry & said 'that was brilliant!' Hopefully, this now means that he's over the tears & will just be happy & have fun while he's there.
Ashleigh had a very frightening encounter with a brown snake after school on Monday (first day back). I had been waiting for the bus for over 20mins & heard on the radio there were traffic delays so decided to quickly duck back home & get my phone so I could try to call Ash & see where they were. Of course the bus got there before I did so Ash decided to start walking down our main road. She looked up to check for cars as she crossed the road then glanced down to see an approx 1m long brown snake at her foot. She of course screamed, jumped in panic & ran to a small hill nearby where she sat scared & almost in tears. On closer inspection she realised that the snake was in fact dead! She then sat there & contemplated what she would have done if she had in fact been bitten (if it had been alive) & decided that she would have had to use one of her socks as a compression bandage! I arrived only a couple of minutes later to see her quite shaken & waiving me down to stop & open the passenger door to see what she had almost stepped on. Even from the safety of the drivers' seat, it was extremely creepy. I don't think it had been dead for too long either as it looked very 'real' as Tyler would say. At the Murrumbateman field day on the Sunday we had seen a snake show demonstration on what you should do if bitten & bought 2 snake bite kits containing compression bandages etc. We've decided that she should carry one of these in her school bag from now on!! We have also started cleaning up & burning off around the block as the thought of snakes around here freaks us all out a little! As long as we don't see them, we're fine!!
Have heard from mum & dad since they went overseas & they sound like they're having a great time. Not very comfortable about being so far away from the family - & Tyler but we just reassure them that everything's fine. They'll be back mid November. Still find it weird when they're away as I'm so used to having them close by but it's really good that they're having some time out for themselves.
Tuesday I was supposed to take Tyler to playgroup but again was just feeling really run down & tired. Tyler started round 5 of retinoic acid on the Monday & the behavioural problems were kicking in a little so I decided that it was best to just stay home & not have any dramas with him. He didn't notice anyway! I did feel a little guilty though but I just didn't feel up to it. We decided to go for a drive to get out & about & have a look at some homes available for relocation. It's a much much cheaper option than building (approx $45,000 - 55,000) & something that we might seriously consider as it will most likely get us a house MUCH quicker. There were a couple that looked really nice from the outside so now we just wait for the company to get back to us with a time that we can inspect the inside. There are still people living inside them & they won't be available till Feb 08 but that would still happen a lot quicker than building.
Kerrie & Kevin sent Tyler a real kid’s tool set for his birthday. He got it the other day & loves it & now follows daddy around everywhere wanting to cut things up with his saw, hammer anything with his hammer, measure things etc. Got some very cute pics!
That's about it. Tyler is looking great & as usual is very happy. He's also going excellent with the whole toilet training thing & is making us very proud. Sometimes we get enjoyment from just sitting outside watching him play & sometimes watching him for too long stirs up unwanted insecurities. We just have to make the most of everything as no-one ever knows what's around the corner. For now, we just enjoy it. We will have to get in touch with Sydney no doubt as we've not heard from them in regards to bookings for the next scans due in November. It really wouldn't surprise me at all if they've not been booked so it's something we should get onto sooner rather than later. We also have quite a few questions to ask Tyler's doc relating to things like keeping Tyler on the retinoic acid for 12 months instead of 6. Something we're still not too comfortable with so we need some answers there. Also, some new treatments we've heard about etc. Feels like there is so much to do (as with updating the journal) & I continually put it off till 'tomorrow'. Problem is 'tomorrow' comes & I still don't want to think about it! I'll get to it eventually, just too tired at the moment. More photos to upload!
Life is pretty good right now.
Thursday 8th November 2007 - I hate it when I leave it so long between updates as it's really hard to think back over what's been happening. I guess life's gone along reasonably smoothly however, when it comes to Tyler we have at times been very concerned about what is going on with him health wise.
A couple of weeks ago Terry became very concerned about Tyler complaining of pain under the arms/ ribs when he lifted him into his car seat. We of course both stressed about it but then tried to put it out of our mind & think of other excuses that may have been causing it. A couple of days after that I was out shopping with Tyler & he complained that his left leg was sore & he couldn't walk. I had to put him in a trolley & really had to fight back the tears as I was SO scared that this all meant the cancer had spread to his bones. It's SO easy for our minds to come to that conclusion within seconds & SO hard to brush it aside.
Terry spoke to Tyler's doctor a few days after the shopping incident & explained what's been happening. He said that we shouldn't worry too much (easier said than done) & that it's highly likely to be a side effect of the retinoic acid which he was on at the time. We were SO relieved to hear this & it was like a huge weight suddenly lifted. He also explained that if the cancer had spread to the bones then the signs would be consistently noticeable i.e.: he would complain of pain in the same spot on his leg consistently etc. So far we can kind of safely say that he hasn't been doing that.
On Saturday 3rd November we went to Sydney for my nephews 21st Halloween/ horror fancy dress party. We all had a great night & Tyler loved dancing & seeing everyone dressed up. We explained to him that some people might look scary but they were 'just pretend' he was happy with that & didn't get scared at all. It was a very late night for him so it's taken him some time to recover & he has been extremely whingy & sooky. He's also back to complaining of pain here & there (but not consistently), it still really scares & concerns us.
Terry's brother Tony & nephew Jack came for a visit over the weekend which was really nice. Tyler loved playing with Jack & it was also good for Terry & Tony to catch up.
Tyler still went to his swimming lessons without any tears on Monday but the instructor did comment that he was very quiet. Normally he's very chatting but I'm just trying to put it down to the fact that he may have still been tired from Sat night & the travelling back & forth to Sydney. I know it wore me out!
Melbourne cup day was also a good day with family. Some of us had a little bit too much champagne (i.e.: me) but we all had a great time.
Not much else has happened. Tyler is still more whingy than we would like & it just feels that we are constantly stressing about him lately. He's also falling over a bit more than normal but that may be him just playing around (he learnt some crash techniques from uncle Tony while he was here). I also think we're both getting extremely anxious with the next round of scans coming up 27th, 28th, 29th November. We will be SO glad when they are over as we just feel we can't take too much more of feeling like this.
We meet with Tyler's doctor next week on the 13th (they are having a clinic in Canberra) which I guess we're looking forward to hoping to get some 'positive' answers. We've also noticed that Tyler may have flu like symptoms - looking a little pale & dark under the eyes, runny nose, so we're even hoping that what's been happening is as simple as the flu. We'll have to get bloods done Monday so even those might give us some answers.
Apart from all that, Tyler is still his amazing self in every other way. He is such a loved little boy & has SO many people hoping & praying for him that most of the time I truly believe in my heart that everything will be ok. There are just those couple of times (especially if I've been checking up on other NB kids that I find aren't doing well, or learn of yet another one who has lost their fight) that I feel the doubt & depression set in. If only we had all the answers & if only we could find a cure for all the kids, for anyone out there fighting any sort of cancer. Someday there has to be a breakthrough, we hear of trials that are apparently doing wonders on reducing solid tumours by 50% (yet these drugs won't be available in Australia for a couple more years), we hear of an amazing dye that can determine whether chemotherapy is working after just one round which will stop SO MUCH suffering of cancer patients who are put through 7 or more rounds of chemo before finding out it hasn't worked, that also won't be available here for years. Then there's a breakthrough in radiation machines that can now pinpoint the cancer without damaging surrounding tissue etc yet Australia won't buy any of them . . . what can we do but hope that they all get here sooner rather than later.
We’re really missing mum & dad who are themselves (although having a great time overseas) also very homesick. They’re back home on the 17th Nov & I must say, we will all be very happy to see them!
That's about all there is to say for now. Please continue to send your positive vibes, prayers or anything else you may believe in not only for Tyler but also for his friends & my sister's close friend June & for anyone else who is fighting hard to beat cancer.
HAPPY 30something BIRTHDAY TO VINCE!!!
Friday 16th November 2007 - Life actually feels like it's slowly getting back on track. We've all been a bit sick with the flu but are now getting over it. Tyler is good & we feel a bit more relaxed about things.
We did some socialising last Saturday at Vince's BBQ which was really nice & then I painted a feature wall at mum & dads in 'Mediterranean blue' which was hard work but the end result was great. I can't wait till they get home this Sunday to see it!
We missed swimming on Monday as Tyler was a bit unwell & we didn't want to risk it getting worse or spreading our germs!
Tuesday we had clinic with Tyler's doctor. He was very happy with how Tyler looked & how he has been over the past few months & strongly feels that the aches & pains that he's been complaining about are most likely due to the retinoic acid. He did say that he would be happy for us to do x-rays, bone scans to be sure, but due to the fact that Tyler has remained so well, he didn't think it was necessary. He still wants Tyler to stay on the retinoic acid treatment as he believes that it may be helping. He also said that there is the 'very small' possibility that one day the scan results could in fact come back MIBG negative (meaning no evidence of disease). It's a long shot but we'll certainly hang in there for that one!! We left the clinic feeling much more positive than when we walked in which is something we really needed.
It seems that the doc has almost taken a complete turn around from when we were taken aside in June to be told that Tyler had relapsed with no real option of further treatment or survival & that we should take him home & give him quality of life. Well, we did that & we have ensured (& always will) that we have fun with him, teach him things & we just do whatever we can to be happy. He will never doubt how much he is loved & I'm so grateful that if anything, this experience has made every day that bit more important & special to us. We NEVER go to bed without telling the kids we love them, even if they're asleep. I couldn't count how many times we say 'I love you' each day. I'm also extremely grateful that Tyler has remained so well & is perhaps making the doc doubt his initial thought on Tyler's future. He now, & many times over the past few months has sat & told us that he would love us all to be sitting down in 5 - 10 years & have Terry & I have a go at him about all the stress & heartache he put us through. He said he has always been straight with us & has been very concerned & worried about the MIBG positive scans but would love to be proven wrong. Let's all hope that Tyler does prove him wrong! In all honesty, he could have handled it differently but its history now & we've got through it.
Today marks a big day for Terry. He was given a redundancy from Telstra, which we had been hoping for, & it's finally all happened. So he's now off signing all the paperwork. It's a bit scary that neither of us have a job now but it's also exciting as we feel that if the upcoming scans give good results, we can actually start to rebuild our lives. We can start looking for work & we can start building the house & hopefully things will remain on track. Fingers crossed!
Talk about a roller coaster!
Monday 26th November 2007 - Not too much has been happening. Mum & dad got back from overseas which was great as we all really missed them. They had a great time but got quite homesick & were glad to get home. They loved the wall too!
We managed to get someone to knock down approx 200 pine trees on our block which has made a HUGE difference but also a HUGE mess! It's amazing how much more land we appear to have but it will be quite a while before we get it all cleared as it's a big job for Terry (any volunteers with chainsaws welcome!!). We've needed to get it done for quite some time & it's a relief that it's finally happened - just messy!
Last Sunday evening we had a family outing to the National Zoo & Aquarium for the Family Business Australia Christmas Party. We were invited by Ashleigh's Aunty Rachel & her sister Caroline who have a business here in Canberra to do with mystery shopping called Spysee. They have followed Tyler's story & have donated $1 for every story told to Tyler's fund. It was a really great afternoon & the food was beautiful. Unfortunately I got the times mixed up & we got there an hour late but we still had a good time & Terry & Tyler managed to do a quick lap of the zoo. A huge thanks to Rachel & Caroline for thinking of us!
Tyler & I finally managed to get to playgroup on Tuesday which was good as it's been awhile & he had swimming lessons today. He's been going really well lately apart from the side effects of retinoic acid which has seen the return of moodiness & tantrums. Apart from that all is well.
We're off to Sydney tomorrow for the next round of scans. We've remained quite calm about these ones & I at times feel too overconfident. It's good to be confident but it also stirs up some scary emotions. I believe deep down that these results will come back good but there is something uneasy deep within that is churning. I guess all we can do is wait & see. We have booked into the Randwick Lodge which is where we stayed when we first went to Sydney - perhaps that is also stirring up the uneasy feelings as well, it all started there. At the same time we are happier to stay there than RMH (as good as they have been to us) but there are just SO many bad memories for us there, things we have tried to put behind us. Also it seems like every time we return there we learn of other kids we know that haven't made it & mentally/ emotionally we need to try to detach from that as much as we can. It's just so hard as our hearts break for these families & given the importance of these scans we just don't know what's ahead for us. There are also good stories of families we know there & we will try to catch up with them this visit. There always has to be a positive side.
Tyler will get the MIBG injection tomorrow at 2pm, the MIBG scan Wednesday morning & then the CT scan on Thursday. All going well we will get back home sometime Thursday afternoon. He also has to give a urine sample for the urine test. We can expect a call sometime Friday with the results of the scans but the urine results won't be back till late next week.
We've told Tyler that we have to go Sydney tomorrow & to the hospital for the tests & he's asking a lot of questions this time & seems quite scared. We've reassured him as much as possible that everything will be ok & that we will be there with him through it all. I made the mistake of telling him that Terry & I go for coffee while he has a little sleep for 'the photos' to get taken & he wasn't very happy with that at all! I had to tell him all about Christmas & all the fun we're going to have over the next few weeks just to get his mind off it for bed. He's growing up so fast & understanding so much more. All we can do is try to think of happy things we can do while we're there like going to the beach etc to ease his mind. It would be so much easier if we could just have these tests done here but we can't so we just need to try to do fun things while we're there to make it less traumatic for him. We will be so relieved once these tests are over & we are back home with - hopefully, some good news.
Please send your positive vibes for Tyler this week.
Sunday 2nd December 2007 - Our trip to Sydney felt much more relaxed & positive than we expected. We arrived late for Tyler's MIBG injection which didn't matter. He was fine having it done but got a little bit scared at having to have a needle. After the MIBG injection was done we called in to C2W to visit the nurses that took such good care of Tyler while he was there. He became very shy (almost rude) & didn't want to talk to them. It's a shame he reacted like that but they were very happy to see him anyway & thought he looked wonderful! We also dropped into ronny macs to say a quick hello before heading back to our room at Randwick Lodge.
Tuesday night we managed to catch up with some friends we hadn't seen in quite awhile which was great. It was so good to see Ben who is doing extremely well & also to catch up with his parents. We also caught up with Lisa whose son Kieran has just come out of a donor bone marrow transplant & is also going strong - Kieran Eady
Wednesday we arrived at the hospital around 8am & the day progressed pretty smoothly (apart from the usual hospital stuff ups which there's no point in even getting into!). There we caught up with our fellow NB battler Dylan & his parents. Dylan has had a VERY rough trot of things, including fighting pneumonia over the past couple of weeks. He is a tough little man & we HOPE with EVERYTHING that his parents get some positive news on Monday - Dylan McKeown.
Tyler had his MIBG scan around 10.30am (should have been 9am) & woke up pretty well from the sedative. They gave him the lowest dose they could as previous scans he had been 'overdosed' & would sleep for hours afterwards. After he woke, ate & had something to drink we again tried a visit to C2W which saw the same reaction from him as the day before. I'm not sure if he was just acting shy or whether he truly has some bad memories when he goes back there. He's just happy to head straight to the playroom & play!
That afternoon we decided go shopping & had an unplanned visit with santa. Tyler was VERY happy to see santa & was VERY chatty, however, in the photo he looks terrified - he just didn't want to smile!! Tyler's usual doctor was away so we caught up with the lady doc who works part time with him. She gave us a 3 month supply of retinoic acid which will make things much easier (we will still have to confirm with his doc prior to commencing as it will depend on blood results or whether the dose can be increased etc but it's still good to have them on hand). We asked her if she would give us a call with initial results from the MIBG (just to 'hopefully' ease our minds a little before Friday). She was happy to. When she did call the news sounded good. Preliminary results show no change to the spot in the liver & the possibility of 'slight shrinkage' to the spot in the adrenal glad (supposed relapse area). We were EXTREMELY relieved hearing this news but also a little apprehensive at getting too excited. We still had to wait for the CT scan results & to hear from Sydney Friday after the meeting.
After that we went to visit some of my family & collected Kerrie & Kevin from the airport as they had just returned from a quick holiday (2nd honeymoon) to Hamilton Island for their 25th wedding anniversary - congratulations guys on a great achievement!! By the sounds of it they had a wonderful time.
CT scan went very well on Thursday & we were discharged by 12pm. I got to catch up with another friend & her son Marcus who is also doing very well & is lighting the Christmas tree at Darling Harbour over the weekend on behalf of Starlight. We headed for home around 1pm & it was great to get home again.
Friday Terry called Sydney around 2.30pm as of course, we hadn't heard from them. Our doc was still away & we already knew that the other doc wasn't in Fri so Terry spoke with one of the fellows who told him "spot in liver still the same, possible 2nd lesion in the liver". Terry questioned this & was then told "it was possibly always there" (we have previously been told that there were several lesions in the liver so will need to clarify this). "Spot in adrenal gland looks slightly smaller & 'possibly' not showing on CT scan". So we can't take too much more out of this than we were told on Wednesday & will just wait till Monday to speak to his usual doctor. It still all sounds very positive.
Saturday I was treated to a 'mother/ daughter day' through camp quality. It's normally reserved for mums whose daughters have fought cancer but an invitation was extended to Cherie & I as mothers of 'boys'. Ash was too young to qualify also as it started from 14 up. It was a great day which started with a manicure & aromatherapy facial, followed by lunch at the Hyatt & we were then given a $50 gift voucher from Myer to go shopping with - I think I'll wait for the sales! HUGE thanks to camp quality & all involved for giving us such a great day. Apparently the father/ son day is a fishing weekend so I'm sure Terry & Tyler (hopefully he's old enough to go) will love that one!
Tyler is going great & showing 'lots' of attitude! During one loving conversation with him I was telling him how much I loved him & he was telling me he loved me too. I then said "when you grow up & get a girlfriend, you should tell her that you love her", he said "I already have a girlfriend - Seraya (Ashleigh’s friend). I then said something along the lines of "well anyway, I'm a girl & girls love to be told 'I love you'. He replied with, "well I'm a boy & I don't!". It was SO funny at the time & I'm convinced that boys are born with that attitude! There have been some other funny things that he's come out with but I can never remember them. I'll have to starting writing them down as he says them.
Now we wait for Monday & to hear back from Tyler's doctor. Overall our trip to Sydney felt very positive as there were no bad stories only positive ones. We went there feeling positive & we came home feeling positive. Now we're really hoping for some good news for Dylan McKeown & his family tomorrow & also confirmation of good news for Tyler.
Thursday 6th December 2007 - I have put off updating the website as I was just not up to it. Our news was good, very good. Our doctor called first thing Monday morning (which surprised me) to confirm the results of the MIBG scan that we had been told about, also to confirm that the CT scan has remained pretty much the same & the urine results came back clear. We were all (including our doc) very happy with this news & will continue with current treatment of retinoic acid for the next 6 months with re-scans end Feb early March 2008.
Unfortunately on Monday evening I read the update on Dylan McKeowns website & the news is not good for him at all. His treatment has not worked & the cancer has continued to spread. We have been devastated by this news & our hearts go out to Dylan & his family. I still believe in miracles & ask that everyone who reads my journal please send their love & hopes to Dylan & his family. He is such a gorgeous, brave little boy & is only 2 weeks older than Tyler. His parents have been amazingly strong throughout this horrible, horrible ordeal that they have all been through since being diagnosed in February this year. We wish them all a very special Christmas together & a miracle.
There's not much else I can say. Tyler is doing well & we are extremely grateful for that & would like to thank everyone again for all the love & support we have been given. Also, we would like to say a huge thankyou to Catherine & Duncan who have just completed walking the 1000km Bibbulman track & raised some money for Tyler's fund. What a great effort guys & we look forward to catching up with you when you return to Canberra.
A very special happy birthday to mum for yesterday & to Ben for today.
Monday 31st December 2007 - It's been SO long since I've updated that I thought I should TRY to do a 'quick' final update for 2007 (it's 11.06pm so I'd better be quick!)
To briefly describe the last few weeks will be pretty difficult so I'll just jot down some of the things we've done . . . we had a great time at the Camp Quality Christmas Party at CISAC where Tyler caught up with Santa & got a little pressie. We then had another Christmas party for playgroup where Santa arrived on a fire truck which was very exciting for all the kids - & another little pressie. Vince took Ash, Tyler & my nephew Michael to his work family Christmas party where Tyler saw Santa again & got another little pressie! By the time Christmas came around Tyler was well & truly excited about the whole Santa thing.
On Christmas morning we all slept in a little (as it had been a late night Christmas Eve) & we all got a HUGE surprise when Santa turned up on our doorstep (AKA my uncle Pat from Sydney) along with my mum & dad & aunty Chris. Tyler was woken by the noise & although he wasn't quite awake enough to see what Santa had left him during the night he got a wonderful surprise & the look on his face was priceless. He even ran out to give santa the plate of cookies that he had forgotten to eat the night before!!! The day was fairly relaxed with lunch at mum & dads & then dinner at Terry's dads & although it's always a long exhausting day our feelings were very different to last year. Tyler just looks SO well & 'normal'. It was a great Christmas.
Yesterday we decided at the last minute to go to the coast. One of my friends is down there with her family so we managed to catch up with her, do some swimming & go on a jet ski. We had a little too much sun but it was a really good day. Something we should do more often.
Trying to do this so quickly & briefly I can't remember everything we've been doing!! We've done a bit more work at the block & built a pergola . . . oh & we have a baby due around 19th August 2008!!! (shouldn't be spreading the word too much yet but figure 'why not'). We're very happy about it but also pretty nervous. There is still so much ahead of us to get through. Although Tyler seems perfectly fine, we still have the horrible 3 monthly scans to get through & there's always that 'what if'. Also, we'll want to get LOT'S of tests throughout this pregnancy. Personally at the moment I feel really terrible. Just constant nausea & tiredness. I can honestly say there is nothing enjoyable about pregnancy (so far). Hopefully things will improve in a few weeks.
Needless to say we are having a very quiet & relaxed New Years Eve (I'm ready for bed already!!). One of Terry's friends came over, the neighbours dropped over for a couple of drinks & Ash has a friend over. It's just great to be at home & be happy (& see Tyler looking so well).
That's it yay!! 11.24pm!! HAPPY NEW YEAR TO EVERYONE & HERE'S TO A VERY HAPPY & HEALTHY 2008 - especially to our special kids & anyone else fighting cancer.
Also, HAPPY BIRTHDAY TEZZA FOR THE 1st Jan!!
