Monday 11th February 2008 - I know I've been extremely slack leaving this update for so long. I do have a few reasons for that though . . . firstly, I've been feeling extremely sick with this pregnancy. Most of the time if I managed to get myself out of bed to the lounge that was as far as I could get! I was NEVER this sick with Ashleigh or Tyler so my mind started playing games with me & I had convinced myself that something was wrong with the baby. At times I would get painful stabbing pains in my left side & I could actually feel something there that felt like it got bigger over a couple of weeks. This of course convinced me that I had an eptopic pregnancy! I could go on & on but at the end of the day everything is fine! I had my 12 week scan on the 4th of Feb which showed us a very active & well little baby. The scan gave us a due date of 14th August 2008 but my midwife feels that it's more the 16th Aug. Whatever, it will come whenever it's ready. Thankfully I am managing to get through the days a lot better, although still feeling nauseous, it is improving.
Now for the hard part. Another reason I have been putting off the update is due to a terribly sad tragedy within Terry's family. On the Monday 21st January, Terry's 25 year old sister Lauren & her unborn baby girl (later named Natalia Lauren) very unexpectedly passed away at home. This was an unbelievable shock to the whole family as Lauren was a very happy & healthy girl who was so excited about becoming a first time mum & only had another 2/3 weeks before expecting the arrival of her precious little girl.
The family has been completely devastated as you could imagine & even being involved with & around the family a lot since the tragedy, even I still find it hard to comprehend.
The following Monday we went to say goodbye to Lauren & little Natalia. To be honest I really didn't think I could go in & see them but I did go in with Terry & I'm glad I got to see little Natalia. She was absolutely beautiful & looked as though she was sleeping peacefully in her mummy's arms. Seeing Lauren I found harder as it's just not the way I want to remember her.
Tuesday we farewelled them both in a nice but extremely sad funeral. Lauren was obviously a very special girl to many, many people as there were over 200 people at the church. I don't think there's too much more I can really say about all of that other than it's been extremely hard on the whole family especially Terry's dad & step-mum. I simply cannot imagine what they are going through to not only lose a daughter but also a grand-daughter at the same time. For Terry & his 4 brothers & other sister to lose a sister & niece, it's all just so tragic & sad. All we can do is to try to be there for the family & only time can try to heal some of the pain. To make it all worse they still have no idea how or why Lauren died. Some information from an autopsy has been sent to Melbourne & will take a couple of months to get back any results. Not knowing what happened or why just makes it all harder for everyone.
On the Wednesday we headed to the coast as we had been booked into Ronald McDonald Fiona Lodge holiday home for quite some time down near Bateman's Bay. We were worried about leaving the family but at the same time it was good for us to get away for a couple of days to try to take everything in. We ended up having Tyler at the doctor as he came out with school sores on his head (for the 3rd time since December) & needed antibiotics. The doctor also had a feel of my tummy to try to ease my paranoia (as I hadn't had my scan then) & told me things seemed fine, Terry was sick with aches & pains & flu like symptoms & ash was up sick one night. Apart from all that we had a pretty good time. We got to visit Birdland which was good, did a little bit of fishing & just tried to relax. We still had the events of the previous weeks on our mind most of the time though.
Since we've been back we've had the scan, had the first anti-natal clinic appointment & been to see Tyler's doctor at the Canberra clinic.
Tyler is going really, really well. Sometimes we feel like we've just got one foot in the 'cancer world' & the other back in the 'real world'. We just want to be back in that 'real world' & put the 'cancer world' behind us but in reality, we can't. There will always be the scans & check-ups & there will always be that sick in the stomach feeling when they're coming up or when we're waiting on results. The main thing to keep focusing on now though is that Tyler is really happy, appears to be really healthy & is just going great.
His doctor was very happy with him & actually made us feel pretty positive about things. He even made a comment that in some kids the cancer has been known to either progress extremely slowly or to even 'fizzle out' & become mature. That would be such a fantastic outcome (if it were to all mature & stay away). We need to get through these next scans (most likely to be held 1st week of March) & hope with everything we have that the scans remain the same or that the MIBG is even a little more 'less evident' - if that makes sense.
Next Tuesday (19th Feb) marks the 1 year anniversary of Tyler's stem cell transplant - or as we tell him 'since they put in his magic cells to make him all better' so we're planning to have some sort of family get-together to celebrate how far he's come & just how strong he his. The 20th Feb marks 1 year since we lost nanna so that will be a day spent with mum as we all know that she's taken it all pretty hard & that will be a hard day for her. It would also have been nanna's 93rd birthday. I believe that nanna passing away just after Tyler received his very important stem cells was her way of passing on her strength to Tyler & she was a very strong woman!!
I think that's about all there is to tell. For those who pray, please pray for Terry's dad, step-mum & all of his family to help them get through such a horrible time.
Saturday 1st March 2008 - Feels like we've been SO busy & the upcoming weeks are even busier!!
16th Feb we went to a birthday party for one of Tyler's friends 'Brodi' at Kid City. Tyler had a great time & it was nice for me to catch up with some people I used to work with back in the 'Telstra days'! After that it was a quick trip back to Queanbeyan to get to the showground before the big Truck convoy for Cancer arrived there. There were SO many trucks & they were rather noisy but it all added to the atmosphere. Mum decided to come out at the last minute & got caught up right in the middle of them all. She was quite embarrassed but we found it pretty funny. It was a really good afternoon where we caught up with Wayne, Cherie & the boys & also another Canberra family we knew from Sydney (our other NB friend Olivia who I'm very glad to say is looking very well). The truck convoy is an annual event organised by the Eden Monaro Cancer support Group. It was great to attend this year - as it was our first (of I'm sure many to come!). I believe they raised around $40,000 which is fantastic.
Sunday 17th Feb we went to Lake Burley Griffin for a big fishing comp. Its main aim is to get rid of pesky fish. Again we caught up with Wayne, Cherie & the boys & other friends of theirs. It was a beautiful day & although there were only a couple of fish caught (2 by Terry!), everyone had a really good time.
Tuesday 19th Feb was Tyler's big day - 1 year post stem cell transplant. We had hoped to make a big event of it but didn't quite get there. We ended up going out for a last minute family dinner with just the four of us. I guess it was more of a special event to Terry & I than to anyone else as we clearly remember what was involved in the transplant, how horribly sick Tyler became whilst waiting for the stem cells to graft & just how far he's come ever since. He's our little hero!!
Wednesday 20th Feb was always going to be a difficult day for us all to get through (in my family) being 1 year since we lost nan, & her 93rd birthday. I think in the end, everyone handled it really well - especially mum. I kept her busy during the day with hair appointments & shopping then we went to dinner at the Hellenic Club where they have what Tyler calls the 'monkey playground'. Kerrie flew down to surprise mum so that most of the family were at the dinner, we used the night to celebrate Tyler as well.
Last Sunday (24th Feb) we had a controlled burn off of the pine trees that were knocked down a few months back. There were a few 'hairy moments' but the volunteer fire-fighters did a fantastic job & gave up half their weekend. We're now left with big black logs that will need to be re-burnt down the track. We owe a huge thanks to the Queanbeyan Rural Fire Brigade, the Stoney Creek Fire Brigade & Radcliffe Fire Brigade for giving us their time & great expertise. It was a very enjoyable show - but only because we knew these guys had everything under control!!
Thursday was Ashleigh's 13th Birthday. Unfortunately we ran out of time (& free weekends) to plan a party or anything but I think she still had a good day & got pretty spoilt by everyone including friends at school which is nice. It's a better birthday than last year anyway as we were all together this time & had a very yummy dinner at mums.
Next week we start getting busier . . . Tyler & I head to Sydney Monday afternoon as his tests start Tuesday. At 11am Tues he has a hearing test then at 2pm the MIBG injection. Terry has an interview to attend here on Tuesday & will get the bus to Sydney that afternoon.
Wednesday morning will be the MIBG scan then at 2pm we have a meeting with a genetic counsellor to go over the history & discuss things with us re- the other NB child on Terry's side of the family. As we're expecting another baby we're quite anxious to find out the risk of having another NB child. We've been assured by Tyler's doctor that the risk is extremely minimal but for our own peace of mind we'd rather check things out for ourselves. To be honest we're not too concerned about it but we just want to be on top of everything this time round.
Thursday morning is the CT scan, we'll have to find time to meet up with Dr Toby then hopefully will head home at a decent hour. Tyler will also need to give a urine sample to check the urine catecholamines. It's exhausting just thinking about it & we get really stressed with upcoming scans as we know the outcome can go either way at any time. We are remaining positive though - we have to.
Friday we will re-pack the car & head down the coast for a Camp Quality Family Camp weekend. I'm sure we'll be needing it by then!! We've also booked (as have Wayne & Cherie) one of the Yurana Holiday homes at Ulladulla for the following week. Hopefully while we're there we will receive good news re- Tyler's scans.
That's about all there is to update. Tyler is going great, worrying us at times with complaints of pain but then he is a 'real boy' & is covered in cuts & scrapes from his rough playing outside! He's just finished round 9 of Retinoic Acid so only 3 to go!!
Terry's dad has been very sick in hospital for the past week with a bad infection & abscess that had to be surgically removed & is now thankfully recovering well. They've been through so much & I'm sure that the stress of everything has got to play havoc with their health in one way or another. It's just so good that it wasn't anything more serious.
I'm feeling much better & can no longer hold in the tummy to hide the bulge!! I'm 16 weeks now & although I still get really tired I am managing to get through the days much better. Tyler is so funny. Although I'm sure there's no way he could truly understand what's going on & what will happen, we have a book that shows month by month & he always gets it out so I can show him 'how big the baby is now'. He's so cute about it!
Off to bed now as I'm exhausted & we have another busy day ahead tomorrow. It will also be a sad day as we have to catch up with our friends Amanda & Graeme (who have been a wonderful support throughout Tyler's whole ordeal), to say goodbye as they head off on a new adventure to the middle of no-where in WA for 3 years. At least they'll have a phone & internet!! We'll miss them heaps but this is a great opportunity for them & we wish them well.
I've finally updated some photos too!!
Please send hopes & prayers to Lesley's good friend June as she battles a very aggressive brain tumour. Our love & thoughts are with her, her daughter & her grandson. Also to our little NB friend Dylan & anyone else who is fighting & hoping to beat cancer.
Sunday 2nd March 2008 - I forgot to add something very important in my update . . . My niece Rochelle (Tyler's god-mother) is shaving her head (she has very long hair!) on Friday 14th March (her 23rd birthday) for the Greatest Shave. Tyler was her inspiration & we're all very proud of her. She's very excited about it & is hoping to raise lots of money for the Leukaemia Foundation. If anyone would like to sponsor her you can contact her at: mailto:rochelle.stainer@guild.org.au
We are also participating in a team in the Relay for Life on 29th March. I'll add more info closer to the time.
Thursday 27th March 2008 - After almost 3 hours uploading heaps of photos, I can now update the journal!!!
Sydney for scans 4th - 6th March - Sydney went really well. I think it was good that Terry & I travelled up there separately as there seemed to be a lot less tension. Normally we find that as soon as we're in the car & on our way we both become very tense & easily aggravated due to the stress of 'what if'. Tyler & I spent the Monday night at Kerrie's & headed off to RCH Tuesday morning.
First appointment was the hearing test. Tyler was SO well behaved & SO co-operative that he made me very proud! As expected, Tyler has high frequency hearing loss due to some of the chemotherapy & antibiotics. It's not enough at this point to require a hearing aid but we will get another test done in Canberra in a few weeks & another in Sydney when we return for the next round of scans early June just to be sure that they are all showing the same outcome. I think it's pretty much the same as what an industrial worker may experience & he will most likely need to sit at the front of class when he starts school as he may find it a bit difficult to hear over background noise. We will also keep watching his speech as although he has a wonderful vocabulary, he does have trouble pronouncing some words. It could just be his age or we may need to see a speech therapist. Nothing that's concerning us anyway considering everything else!
That afternoon we had the MIBG injection which again, he was very brave & very well behaved. The staff at Nuclear Medicine always goes out of their way to make him feel comfortable. Overall a stress free day with daddy arriving around 10pm that night.
Wednesday he had the MIBG scan. Terry & I were pretty nervous (as usual) but also quite confident that the results would be good. Thursday also ran smoothly with the CT scan & after a quick visit with Dr Toby I think we were out of the hospital & on our way home by 1pm - amazing!!!
Friday 7th we re-packed the car & headed off to our first Camp Quality Family Camp at Burrill Lake. We had a WONDERFUL time! The Big 4 Bungalow Caravan Park was absolutely beautiful. All the staff there were very welcoming & friendly & the whole weekend was extremely well organised by the camp quality staff & volunteers. Saturday was a very action packed, busy day with lots of fun activities for the kids such as: jumping castle, horse rides, boat rides, canoe rides, 'Funky Bugs' puppet show, ice cream van, bird feeding etc. Sunday was a bit more relaxed with free time at the park. Thanks HEAPS to Camp Quality & all the volunteers for giving us such a fun camp!
Friday afternoon (back-tracking a little) we received a call from Dr Toby with Tyler's test results. To us the results were great. He told Terry that the MIBG is again slightly less evident in the adrenal area (site of relapse), & he also said that the liver had slightly changed for the better. This was the first time that we had been told of any change in the liver. Urine tests weren't back yet but they are expected to be fine. His official report that he sent to our GP with a copy to us is slightly different:
"Tyler has had a set of bloods which show a normal full blood count and electrolytes taken on the 5th March. He has also had a set of urine catecholamines and MIBG scan and CT scan. The results of the urine catecholamines are not available yet. However, the CT scan shows stable disease in the liver and around the tumour bed in the left para-aortic region (where there is small amount of soft tissue with calcification). There was some improvement on the MIBG scan with a reduction in the amount of uptake in the left para-aortic region. There was still MIBG avid disease in the liver."
We're not quite sure what to make of all that & I guess we really need to contact him & clarify regarding the liver but we're still very happy with the result. Doc won't give too much away (I guess he wants to be careful given what he has told us previously) but again through our own diagnosis all we can think is that the less avid MIBG areas might be maturing Neuroblastoma turning into ganglioblastoma which is non-active NB. At the end of the day we are still more than aware that these results can change at any time given the nature of this aggressive cancer. For us, for now, we have another 3 months to enjoy Tyler, believe that all is going to be fine & we can worry again in June when we have the next round of scans. Tyler will have finished the retinoic acid by then & the scary thing is that we don't know whether that is causing the NB to turn mature (if that is what is happening). We can't keep him on it any longer as it will already be 6 months more than has been trialled but at least he's been on something. We need to get some more of the natural products that he's been on that have run out as we have a strong belief in those also. As I said, great news to us for now anyway!
Sunday afternoon we headed to Ulladulla for our weeks holiday there. The McCauley's also booked a house there so we all had a great week with lots of fishing, fishing, fishing & more fishing!!! We all did a day trip to Currarong which was a very beautiful spot & great for swimming & also got to catch up with some other friends that we met in Sydney. It was a great week & the weather was really good but Cherie & I agreed that we may as well have sent the boys away together as all they wanted to do was fish & we got a little bit neglected (yes, poor us!). Thursday 13th mum & dad arrived for the night to take me, Ash & Tyler home Friday morning for Shelles head shave. Mum & I had a couple of hours at the club which was a nice break while dad stayed with Tyler & Terry, Ash & the boys were . . . . yes beach fishing!!
Friday 14th March - The Greatest Shave . . . we got home around 10am & headed into Shelles work (& now also Lesley's work) around lunch for a very yummy BBQ & a fun packed afternoon at The Pharmacy Guild. I must say that the afternoon was very well organised & the Guild management & staff are lovely. It was really nice of them to include us in the afternoon (mum, dad, Kerrie, me, Ryan, Ash & Tyler!). After a beautiful lunch they started off the fundraiser by colouring people's hair. Tyler & poppy had a go too (see photos!). Then for the head shave! Shelle had been very brave & excited leading up to this event but we were starting to see some nerves cracking through the surface (probably given away by the way she constantly clung to a beer bottle!!). There were 3 girls losing their hair including Shelle, 1 guy (I think) plus one of the executives who managed to get the staff to chip in around $600 for him to lose his hair & one very brave (& very funny) guy who got his legs waxed! Shelle auctioned off her plaits for $10 each & $100 was bid to start shaving her head. Overall I believe that over $11,000 was raised by The Pharmacy Guild for The Leukaemia Foundation which was a fantastic effort!! Well done guys & thanks for a great afternoon. HAPPY BIRTHDAY TO THE BALD SHELLEY TOO!!!
Saturday 15th Kerrie, Ryan, Tyler & I headed back to the coast. Kerrie & family were renting a holiday house at Sussex Inlet for the Easter break & I had to head back to Ulladulla to pack & clean up for departure Sunday.
We said goodbye to Ulladulla Sunday & headed to Sussex Inlet to spend 2 nights with Kerrie & Kevin. It was beautiful there & I think I had more fun there in 2 days than I did at Ulladulla in a week - mainly because there was a wharf out the back so I could do some fishing too & no-one had to go anywhere!! We reluctantly headed home on Tuesday 18th!
Since we've been home we haven't been doing too much (I don't know where the time has gone). We had a really nice Easter with Terry's brother Daniels wedding on Saturday night. Alison was a beautiful bride & it was a beautiful wedding although still a very emotional time for Terry's family - especially Ron & Judy with the absence of Lauren & Natalia. Congratulations to Daniel & Alison!
Easter Sunday we had a beautiful lunch at mum & dads. Tyler & Ash had fun with the Easter egg hunt in the yard & that's been about it.
Yesterday I had my 20 week ultrasound to see how bub's getting along. Everything looked fine although they reported that the placenta is lying low & I will need to have a 3rd trimester scan to ensure that it's moved up & won't cause any complications. I've been feeling much better lately & can feel lots of kicks & movements (no-one else can feel them yet but hopefully will soon). I'm also starting to want to do some 'baby' shopping & to start setting things up at home (we need to get organised on adding another room first though!!). At least we've still got lots of time for all that!
Tyler is remaining well & as always, full of energy. He got a bit of a cold when we returned back from the coast but appears to have got over it ok. It's been the first time he's been sick since hospital which is great. At the moment he's outside helping daddy build a retaining wall for a new garden!
All is good for us at the moment but there are still many children & adults out there fighting Cancer. This weekend we're taking part in the Relay for Life held at Bruce Stadium. We are part of a team put together by a friend who lost her mum to breast cancer 25 years ago. It should be a great event but it will also be very emotional. If anyone would like to sponsor us please contact me on melntez@bigpond.net.au & I can give bank account details.
Our little NB friend Dylan is undergoing surgery today to remove a mass that has been growing in his brain tissue & caused him lots of headaches & vomiting. As you could imagine this is a very difficult time for his parents & family. Dylan has been such a brave & courageous little boy & is the same age as Tyler with the same disease. His treatment was unsuccessful but he has continued to amaze everyone with his strength. We send his family our love & best wishes & ask that anyone else reading this does the same. If you want to follow Dylan's journey or leave a message of support in his guestbook, his website is: http://www.caringbridge.org/visit/dylanmckeown
That's all for now . . .
