Friday 16th May 2008 - I have been very slack!! Well that & a slight problem of not being able to log into the website to update it for a couple of weeks didn't help either. Also, to keep on with excuses, I just haven't felt like it. Life's been going along pretty well for us but not so well for others that we care about so to have to sit & write about it all was just a bit too much.
Now that I can log in, it's time to update what's been going on since March!
The last weekend of March (Fri 28th) we participated in the Canberra Relay for Life, held at Bruce Stadium & our team put together by our friend Leanne. Leanne decided she wanted to participate in the relay in honour of her mother who sadly passed away 25 years ago from cancer.
It was a great night with a huge effort put in by all (except me) but especially mum (at 71) who managed around 60 laps. Tyler did around 15 himself & Rochelle pushed herself to do 100. Even Ash got into it & did around 50 (I think). Special mention to Leanne's boys Jayden & Dylan who really pushed themselves with Jayden around the 70 lap mark (I think). It was too long ago to be exact with figures but it was just great to be part of it & it's something we'd love to participate in for future years. Our team was 'team Hope' which fits in nicely with our own motto of 'Holding onto Hope'. Great job Leanne for organising everything for us.
During April life was fairly 'normal'. Tyler continued with swimming lessons & playgroup & health wise has remained well. Terry started a new job with Queanbeyan council on 14th April (happy birthday Lesley) with a Traineeship in Horticulture. It was the 1st job he had applied for so we thought he did pretty well getting it. So far he's a little disappointed as there's been no training nor any work related to horticulture (which was his reason for applying in the 1st place). He was led to believe in the initial interview that there would be a TAFE component to the traineeship but to date there's been nothing. It's being chased up now so we'll just wait & see what happens from here. It's good that he's back at work & the hours are really good which helps.
April 17th I took Tyler for his 1st lot of immunisations (well re-immunisations post transplant). There's been the usual confusion & lack of info (or confusing info) from Sydney but thankfully the ladies from the QBN Community Centre have been wonderful & chased everything up for me. Tyler was SO brave having the 1st lot done which involved 2 yucky painful injections to each arm. I had told him that it would hurt & it did & he still sat there (a little distressed) but stayed still so they could do it. I was SO proud of him!
On Anzac Day we went & watched poppy march. Tyler enjoyed that & it was a beautiful day here. Terry had a good day out with the 'vets' & I was the taxi (as usual!). That pretty much sums up April.
1st May Tyler had a clinic visit in Canberra with his Sydney oncologist who was very happy with him. His blood results are all normal & in general he looks great. Again Dr Toby said he we just need to keep up with the 3 monthly scans & see how things go. I asked him directly whether he still believed that Tyler did in fact relapse last June as he had been concerned about a spot in the adrenal gland just prior to transplant but he just said he couldn't be sure (something to that effect). I think basically they really don't know for sure what's going on with Tyler. There's the 'possibility' that his disease may remain stable or 'fizzle out' or it could go the other way which we just don't want to think about. We just have to try to remain positive.
2nd May Tyler had a hearing test in Canberra to see if the results came out the same or similar to Sydney. Again he was VERY well behaved & very co-operative during the test. The results were the same as Sydney which we were expecting. Still no need for a hearing aid but there is definite damage (industrial type). Basically we just need to monitor it & possibly see a speech therapist if necessary (there are some sounds he can't pronounce but we're not too worried about it at this point).
8th May Tyler started the 12th & final round of Retinoic Acid. We have mixed emotions about this as it's great that he's almost finished the tablets but that's now it for treatment so that's pretty scary. We plan to keep him on the colostrum powder (which I truly believe is helping his immune system) & we want to do another visit with the naturopath to see what her opinion is of his health now. To us he seems great but there are still the scares - the aches & pains & the tummy pains - they really scare us.
Yesterday Tyler had his second round of immunisations which didn't quite go as smoothly as the 1st. We had to pick up a script from the chemist (which cost $77) as it's 'not on the list' & then go to the clinic for the shots. Luckily for Tyler the lady was again very thorough & discovered that the one I picked up was the wrong injection. To cut a long story short she organised a refund of my money & I'll need a new script & the correct injection next month. Not a good mistake for a doctor to make especially when I had clearly highlighted what I needed!! This meant Tyler only had to have 2 injections but these ones have caused him lots of pain this time & he's been pretty unwell since having them. One was the second part of the flu vax so I think it's given him a touch of the flu or similar symptoms & temperatures. We'll just keep up the panadol & hope it improves quickly. It's strange having a child with a 'normal' sickness though!!
Ash is going well, especially with her basketball. She is now playing with her school team & a club team which involves lots of training & most of the weekend taken up with basketball but her skills are developing really well & it's something that's 'hers'. The extra running around is a pain (although she is tending to spend a lot more time at mum & dads) but hopefully it will prove to be worth it in a couple of years if she makes it to nationals or something like that as her coach is guiding her towards. Apart from that she's just your 'typical' teenager!!
My pregnancy is going really well & I have actually enjoyed the last few weeks. Bub is very active & I now look pregnant! We have done some renovations around the place & have added on a baby's room which is pretty exciting. Now I have it all set up & ready - just another 13 weeks to go!!!
Now for the news I find too hard to think about. Firstly, little Dylan is still fighting hard but is now spending a lot of time sleeping due to the amount of pain killers he is on. His parents (& family) have remained so amazingly strong throughout his illness & we just send them all our love & best wishes. We are also now devastated at the news of our little Canberra NB friend Olivia whose family have just been told that she has relapsed with a lesion in her knee & the prognosis is not good. Prognosis for neuroblastoma in general is not good but as the doctors have previously told us, & now Olivia's parents, there have been no survivors from a relapse. This news leaves it VERY hard to remain positive about this disease & that what appears to be 'life getting back to normal' will remain that way. Terry & I are both completely shattered to hear this latest news & can only hope that Olivia's parents can find the strength to 'hold onto hope'. It has also made us extremely apprehensive of Tyler's next scans, booked in 4th, 5th, 6th June. We are very nervous about these scans as we have seen first hand just how quickly life can change. Our love & hearts go out to both these families & we are desperately 'hoping' for the best. Olivia has just had her 'Make-a-wish' in QLD & will head to Sydney where they will try a secondary line of chemo treatment. We wish them all them luck & hope in the world for some good results. Here is a link to Olivia's website: http://www.our-beautiful-girl.blogspot.com/
We were planning a trip to Narrandera on the 24th May with the McCauley's as the 18th May will be a year since our other friend Dylan passed away but more tragedy has struck & Cherie lost her brother in a motorbike accident a couple of days ago. I can't believe how bad this year has been so far & can only hope that nothing more goes wrong. I also hope that Cherie & family can get through this horrible time with the love & support of each other. We also send them our love.
There's not much else I can say I guess. We will do our best to remain positive & I'll try not to leave the update so long next time. We've just been so sad about all this bad news that I've tried to keep myself pre-occupied. Please send prayers, positive vibes, hopes or whatever you believe in to Dylan, Olivia, for good results for Tyler's scans & also to Cherie.
Sunday 1st June 2008 - Since last update Terry has started TAFE at Goulburn every Thursday. Bit of a drive but at least he's happy to be learning something!!
Tyler has had us VERY worried over the past couple of weeks with lots of whinginess, moodiness, high temps, sore arms/ legs & tummy pains & also been off his food a bit (I even think he looks as though he's lost a little weight). As if we weren't anxious enough lately this has all made things that bit more stressful. I managed to get an appointment with the naturopath last Wednesday (28th May) who believes that Tyler is just suffering from side effects of the immunisations he had a couple of weeks ago. This made sense to me as his symptoms were quite 'flu like' (apart from the tummy pains) & he did get the 2nd part of the flu vax. She also said that there are things like aluminium & mercury in the injections that could be causing the moodiness & that tummy pains were most likely part of it too. Although I don't fully understand how her tests work or detect things, I did feel a little better after visiting her especially as she said Neuroblastoma didn't show up. I SO hope that she's right!!!
Just to double-check things, I also took him to see Dr J (our VERY trustworthy doc who initially diagnosed Tyler). By this time his temp was up to 39.4 (I held off on the panadol till just before we saw him). He gave Tyler a very thorough check & believes that he is just fighting off some sort of bug & that it was nothing to worry about as its good that his immune system is working. By the time we left the doctors Tyler had made a remarkable recovery. Don't know if it's the magical panadol, the jelly beans or just seeing the doc but it was great to see him feeling so much better.
On the Thursday I had an anti-natal visit at the hospital but was made a little late by poor Tyler who had a small case of the runs. It was an interesting trip to the hospital though with a side of the road pit-stop on the way!! At least this eased the tummy pains & gave us another explanation for them.
Later Thursday afternoon Vince took Tyler, mum & I to meet with the ladies from his mums prayer group. They are very lovely ladies & we are very grateful that they all care so deeply for Tyler to pray for him every week. Thank you all for your prayers & well wishes for Tyler & our family.
Ash went on a Camp Quality sports camp to Sydney over the weekend & was very excited to meet Benji Marshall (she is a BIG Tigers fan!). She had a fun time but is quite exhausted.
That's about all there is to update at the moment. Tyler has still been complaining of tummy pains which despite all the other excuses we've been using is still very worrying. We're doing our best to try to stay calm for our trip to Sydney but it's starting to get hard now. I just want it over with & I want to know that everything will be ok. Lot's of people have said to me lately that there's no point in stressing, that what will be will be & although I know they mean well, it's easier said than done. Only if you've been through this with your own child can you truly understand what's at stake with these tests or just how easy your life can be thrown into complete turmoil. I know I always say it but it's a different world that we are in now & have been since Tyler was initially diagnosed. That will never change & we can only try to adapt to that life. We NEED to get through these tests (with good news) so that we can get through the next 3 months of our lives, so we can look forward to a new baby in August etc. Life for us (as with so many other 'cancer families') is living between scans - or the old 'day by day' routine.
We still hold onto hope, we still continue to send our love & our thoughts to those who are doing it much tougher than us - another thing we have learnt, no matter how bad your own problems, there is always someone worse off. You only need to check on Dylan or Olivia or link to other kids' sites & stories to see that. But if we take away hope, we take away everything.
Please continue to send love, prayers & hope to Dylan & Olivia & here's to HOPING that we get good news this week.
HAPPY BIRTHDAY TO KEVIN!!
Sunday 8th June 2008 - Well, Sydney was surprisingly easier to get through than we expected. I think we had stressed so much in the weeks preceding our trip that we were pretty much 'all stressed out'!! I also think the fact that Tyler was SO well behaved & SO good throughout all the tests & waiting etc also took a lot of pressure off Terry & I & we were able to stay pretty calm.
We went up Monday afternoon & stayed at Kerrie's on the Monday night so that we could visit & friend in hospital Tuesday morning. It was good to catch up with them but not under the circumstances of the patient being so sick. We met the family during Tyler's treatment (the friends from Narrandera I talk about who lost their little Dylan 18th May last year) so they are very special to us & we hope things improve for them very soon.
Tuesday afternoon Tyler had the MIBG injection. He is always very good with this but we have noticed that he's getting a little more scared with each visit. He's fine once it's over though & the staff at Nuclear Medicine are really great to the kids.
After the injection we caught up with our friend Millie & her mum & brothers (incl 10 week old baby brother that Tyler was very taken with). Millie was pretty much the first child we saw when we first went to Sydney & I can remember thinking 'oh my god, she looks so sick, how on earth do her parents cope?' & there was our little Tyler running around as though there was nothing wrong with him. After we were given Tyler's bad news, we learnt that Millie (approx 18mnths at the time) also had Neuroblastoma stage 4. Her parents were really helpful in guiding us through those first few weeks of shock & what to expect. It was wonderful to catch up with them again & see how fantastic she is looking now.
Wednesday was the MIBG scan. This is the scan we were most worried about but we thought it was a good sign that there were no extra images required.
Thursday he had the CT scan. We didn't have to be at the hospital till around 9.30am so we knew we were in for a pretty long day. Tyler was taken in for the scan around 12.45pm which is a very long time to go without food. We were very proud of him as he never complained once (much more patient than his mother!!). After we had been through recovery (from the general anaesthetic) & were back on the ward, Tyler's doctor came to see us. He advised that the report from the MIBG scan hadn't come through yet but he didn't expect the results to be much different to the last scans. He also felt that if there had been bad news, he would have been notified by now. Overall, he was very happy with how Tyler looked & appeared to be a bit more optimistic than he has in the past. We were very happy to hear all this but didn't want to get too excited till we got the official results. We know from experience that there could have been other reasons that he hadn't been given results from the MIBG yet - i.e. they haven't looked at it yet - or they'd lost the scans. Either of these scenarios would not have surprised us. We finally got away from Sydney around 4.30pm & got back home around 8pm. Mum & dad had been out to start the fire & leave some dinner which was very thoughtful of them & very nice to come home to.
Friday morning Terry got the call from the Dr to confirm that the results were good. The CT scans are still showing the same lesions in the liver & adrenal gland that they always have (which is to be expected as he is not receiving any treatment that will shrink them at all) & the MIBG is a little less avid in the liver & is now negative in the adrenal gland ('supposed' relapse site from June last year). We are of course, extremely happy with these results for Tyler but at the same time are still hurting for Dylan & Olivia's families. We can only assume that the retinoic acid did in fact do it's job & perhaps 'mature' the active neuroblastoma that has previously shown up. We'll never know what has kept Tyler stable, we can only be extremely grateful that he has remained so well. We are still a bit concerned that things may 'flare up' again now that he has finished the retinoic acid but the Dr has assured us that keeping him on it for longer will not prevent a relapse. Also, as its only been trialled for 6 months (& he was on it for 12), there's no evidence to prove that it would be of any further benefit to him nor what/ if any, long term side effects could occur. The only thing we've noticed so far is that Tyler's hair has really thinned out whilst on the tablets but that should hopefully thicken up again in time. If that's the only side effect, we're very lucky.
We were very angry yesterday to discover that (presumably) whilst we were away, someone decided to help themselves to our fire fighting pump at the dam! Not only did it take us a while to establish the setup & get pretty excited about finally having water on tap out here, our main purpose for having it was to establish gardens & to make a veggie patch to get Tyler onto home grown vegies for his health. I would just like to catch the people who steal things like that with complete disregard to how it affects the family involved. Now we need to come up with another $500 or so to replace it!!
Anyway, with that aside, we are still extremely grateful & happy about our good results. Although our news was good, please keep in your hearts, thoughts & prayers, Dylan, Olivia & their families & anyone else fighting hard against cancer.
Monday 16th June 2008 - It's with great sadness that I report that our special little friend Dylan passed away during the night. I have struggled all day with this news since reading his mums update this morning. Our love & thoughts are with the family during this most difficult time & through all the tears that I know my family & myself have shed today, I can only begin to imagine how extremely difficult it has been for Sharron, Leigh, Teah & Darcy. The amazing strength, courage & unconditional love shown by this family over the past 18 months is to be commended. We met them in hospital when Tyler was just about to start his stem cell transplant. Dylan also had Neuroblastoma so there was an instant bond between us all & a strong HOPE & desire for our kids to be ok. We are heartbroken today. Sharron & Leigh, you gave Dylan all the love & support possible & he was a superhero who fought long & hard. We are thinking of you constantly & hoping that in time, your pain may ease a little. Dylan, your smile is a beautiful image that I will never, ever forget. http://www.caringbridge.org/visit/dylanmckeown
Tyler has been remaining well & each day that passes we are extremely grateful for that. Last Friday he & I froze our butts off at Manuka Oval to be filmed (as part of a big group) for an upcoming Transact/ ACTEWAGL (local Canberra companies) ad. I can't say that we had fun at all (was just long & tiring – especially as I had to hold Tyler up for approx 2 hrs!) but this company sponsors many, many groups - mainly sporting including Canberra Raiders & Brumbies but also Camp Quality whom we were representing (along with a couple of other kids from CQ). Anyway, will be interesting to see how it turns out!!
Bub is growing well & giving me lots of grief body-wise (lots of aches & pains). She/ he's very active which is good but I'm getting very anxious to meet & cuddle her/ him. I have my 34 week ultrasound in 2 weeks which mum & Ash will attend & it will be good to finally know if my placenta has moved up & whether I'll need a caesarean or can deliver naturally. I'd much prefer natural but won't be willing to take any risks so we'll just have to wait & see. 8 weeks to go!
That's about all there is. It's just such a sad, sad day. To those who have healthy children, never, ever take that for granted.
