Tuesday 9th January 2007 - FINALLY, I get an opportunity to update the website! Although it's taken me around an hour just to get this far due to a VERY slow server! I'll do my best to abbreviate the last few weeks!
We did get to go home on Friday 22nd December - just! By the time we got out of the hospital it was around 7pm. We decided we were going home & nothing was going to stop us - well we were almost stopped as Tyler started getting sick & his temp was slowly rising. We made the choice of continuing on & although he spiked at 38 deg at one point of the trip, we finally got home around 11pm. It was so good to be home but the inevitable happened & we made the trip to Canberra hospital around 2am, finally getting into a bed at around 4am. We were so exhausted but at least we got back home!!
Tyler spent 2 nights in hospital & the doctor wanted to keep him longer but gave in to my begging on Christmas eve to let us out so we could give him oral antibiotics. I was so relieved as by this point I really felt I couldn't keep going. We had such a draining four months & just needed some time with him out of hospital.
Christmas was very low key but very nice. Was just great being with all the family & seeing Tyler get so excited about 'Santa Claus'. We spent some time at mum & dads & then the afternoon at Terry's dads & it was all very relaxing.
We spent New Years Eve at our place with Rochelle, BJ & a couple of BJs mates. Again it was very low key & relaxing but it was really good. We were so happy to see the end of 2006 but did have a little too much to drink! 2007 has to be better!
New Years day/ Terry's birthday was another great day spent with family & friends. We organised a last minute get-together at Weston Park & I think pretty much everyone we spoke to came along. It was great to catch up with everyone & Tyler had such a good time running around with the kids. It was so good for him to be at home & we ended up getting 11 days there!!
Unfortunately the dreaded time came to head back to Sydney for the next round of chemo. Because we're expecting to stay here pretty much for all of January the car was quite jam packed! We got back on Wednesday 3rd January.
Thursday 4th January we had a clinic visit with Tyler's doctor who went over the test results again & what's coming up. He said that it's not great that Tyler's scans aren't clear but it's nothing he hasn't seen before & he's not too concerned. There are other options like radiation to the spots on the liver or possible surgery but we agreed to do the 5th round of chemo, run some more tests & go from there. Transplant is still scheduled for early Feb. They managed to collect '0.8' in the way of stem cells but we need '2.0' so this means we do the whole 2 injections of GCSF per day till his counts come up enough to do another collection. It was good that we got some last time though as there won't be as much pressure this time.
We had to take him for a hearing test just to make sure this 'cocktail' of drugs isn't effecting his hearing (this is the second time he's had this one, it's also the one that makes him very sick).
After a very stressful goodbye, leaving Tyler screaming with Kerrie for the night, Terry & I headed off to a friends wedding (Ian & Emma) that I was doing the photography for. We printed out instructions from the net (which I wouldn't totally recommend) & after a few calls to Kev & to the groom himself, we made it to Dural (approx hour & a bit out of Sydney). Then there was the rush to get ourselves ready before the bride left!!! We were running a little late but we got there ok & it was a beautiful wedding & a great night out for Terry & I. We couldn't really relax till we spoke to Kerrie & were reassured that everything was fine with Tyler - then it was a great night! Although I did get a little carried away & took approx 460 photos!
We got back to Sydney after lunch on Friday & found that Kerrie had had lots of fun with Tyler. It was so good that we were able to have a night away & know that he was ok. Mum was going to come stay with him but got sick with a virus & also has the worry of nan being in hospital down there at the moment. Nan's ok but I think getting quite depressed & confused which is understandable. It's so sad watching what's going on with nan.
Tyler's treatment finished early hours of Saturday morning & we were discharged late yesterday afternoon. We're planning to just 'hang out' close to the hospital as we know we'll be back there for temperatures sometime soon.
My nephew Lachy had a nasty accident yesterday severing the top of his finger (into the bone) with a bike chain. He's having surgery this morning to hopefully save it, otherwise he may end up a little 'stumpy'. Poor thing, he apparently walked the bike back up the hill to home with his finger hanging back as he was worried about leaving it & it getting stolen!! He'll do anything for a few nights in hospital that boy!! Luckily he's doing ok & although we can joke a little about it now, it would have been horrible & made my stomach churn when I was told.
I think that's pretty much everything up to date. It's taken forever to try to update this so I may attempt to put some photos up later. Tyler woke up sick this morning but is pretty happy now. Time to go get some 'late' breakfast & decide what to do for the day!
Friday 12th January 2007 - Tyler is still doing well & 'touch wood' we are still out of hospital. The last few days have been quite relaxing just hanging around RMH etc. We ended up going to Centennial Park on Tuesday afternoon with another family we've become good friends with here. The kids (they have 2) we had Ash & Tyler had a great time seeing eels, turtles & ducks etc. It’s been great to get out & about a bit. Yesterday afternoon we all went to La Peruse - a beach fairly close by. Tyler loved it even though he couldn't get too wet but the weather was a little windy & the sand flying at us from all directions wasn't too much fun - especially those with no eyelashes!! Luckily we had some sunnies for him!!
Yesterday morning we had another clinic visit with Tyler's doctor. It was quite a long meeting & quite distressing. They had to give us all the information regarding transplant - what to expect, what can happen, how sick he will get etc. I think it kind of brought it all back to perspective to us just how serious this all is. Not that we've ever forgotten, but it's hard to think of him as so seriously sick when he is running around laughing & playing & apart from looking obviously like a cancer patient, he just seems like a normal kid.
The reality is that the transplant is going to make him VERY sick. They have lost kids in transplant, they have lost kids after transplant. The chemo that he will be given is much worse than what he's already had & it will pretty much wipe out his bone marrow. He will be susceptible to many serious infections & possible organ damage or failure. He will be in lot of pain at times & will most likely require morphine. It went on & on & I think through a bit of it we tried to switch off as it was all getting too much. This information was of course 'possible or worse case' type scenario but that sort of doesn't make you feel too much better at the time. We were also told that without transplant he is in a 10 - 20 % survival bracket, with transplant it gets bumped up to 40 - 50%. To us this still isn't a good enough result but it's much better than the first. We know it's going to be extremely hard on all of us - especially Tyler, but again we don't have a choice, we need to give him every chance possible.
The doctor feels pretty confident that Tyler shouldn't experience any of the extreme complications & that he is a good candidate for transplant and I know they need to make us aware of all possible outcomes, we just didn't like to hear it!
Over the next couple of weeks Tyler needs to have quite a few tests done to ensure that his body will be strong enough for the transplant. This includes: echo (heart test), another hearing test, eye test, dental check, MIBG & CT scans & I believe liver, kidney & lung function tests. So we'll be quite busy or should I say 'spending a lot of time in waiting rooms'!! In between all that we will also be doing another stem cell harvest!
On another note, we moved rooms today & FINALLY have our own bathroom! This may seem trivial but to us it will make life that little bit more comfortable whilst we're here for the next (estimated) 4 -5 months!! It took me nearly 3 1/2 hours to move & clean/ change beds etc in our old room! There is the cutest Thomas the Tank Engine bed in the room for Tyler & he loves it. It even has a little engine room at the end that he can play in!
Ash went back to Canberra VERY unhappy with me today as I'm sending her on the Camp Quality Camp to Forbes next week. I hope once she's there she'll have a great time & realise that I of course was right!! I think that it will be so good for her & she'll be with Matty who she's met here & is almost the same age. They get on really well together & I think it'll make it easier on both of them the fact that they already know someone at camp. She got a lift back to Canberra with Matty & his family (our RMH buddies) which was a huge help to me.
I think the main problem was that she just wanted to spend more time with us & her brother & she knows that there's still a lot of time ahead that we'll be spending apart. I felt so bad when she left & can only hope that I did make the right decision to send her!
For now we will just enjoy as much time out of hospital as possible & hope that Tyler gets through the next few months as good as he has for the previous months!!
Friday 19th January 2007 - Can't believe it's a week already since I last updated!! Everyday I go to do it then get side tracked. We've had a pretty good week with Tyler & have remained out of hospital - so far!! He has been in great spirits & full of energy - sometimes too much for us to keep up with!
We are still waiting for the counts to come up high enough so that we can do another stem cell harvest. We have had to get up at 4am the past 3 mornings, give the GCSF injections & be at the hospital for bloods at 8am. Talk about lack of sleep! Wednesday his counts were very low & we spent the day up in C2north (day clinic) for a blood transfusion & platelets. Yesterday his white cells were coming up rapidly but the CD34 count wasn't high enough so they're hoping that he will be ready for collection today or possibly tomorrow. This morning we had the Echo (heart test) so at least that's one down.
I heard from Ash Tuesday (for my birthday) & she sounded great. I was very relieved to hear that she was having such a good time & could even hear in the tone of her voice how happy she was - I was proven right!!! I'm looking forward to seeing her & hearing all about it. Hopefully she will be back here during next week.
Now we may just go for a drive & wait for the hospital to call re the blood test results from today.
Monday 22nd January 2007 - 'Totally exhausted' doesn't truly describe the way Terry & I felt today but it's as close as I can get. Tyler's counts weren't high enough on Friday to do the stem cell harvest & the doctors decided not to check the counts over the weekend which left us feeling quite unsettled. Friends of ours 'missed their window of opportunity' the other week & we were worried this could happen to Tyler. This meant that the white cell count was too high & they diluted the stem cells too much for them to be harvested, this in turn means that they have to operate & get the stem cells directly from the bone marrow. This isn't a HUGE problem as it only means a couple of days delay in the stem cells 'taking' during the transplant, it was more the thought of having to put Tyler through more surgery.
Luckily for us, Tyler's counts were great today & we were able to do the harvest this afternoon. We won't know if we have enough till tomorrow & still have to be on stand by in case we need to do it again but it's great that we were able to get it done today.
We had a pretty rough start to the day though as we had to be up at 4am to give the GCSF, got to the hospital just after 8am for bloods, were left waiting there till 8.45am - got extremely frustrated as the blood results were crucial & urgent (also oncology kids are NOT supposed to be left waiting), got to our next appointment for the kidney function test at 9am to be left waiting for half an hour because the request form had not been sent by the doctors, to then be told that we couldn't have that test as it involved nuclear 'stuff' being injected into him which was 'most likely fine' but they weren't going to risk it as he was ok to 'go ahead' with the stem cell harvest!!! We then spent from around 10.30am till around 6pm at the hospital doing the stem cell harvest & follow up blood tests to ensure he didn't need any blood/ platelet transfusion (sometimes they lose some during harvest & need to be 'topped up', luckily Tyler didn't need to & we were discharged).
To backtrack a little, we went to Muswellbrook/ Scone for the weekend for Terry's nieces christening & to spend a bit of time with his family. We had a great time - especially Tyler but it was a HUGE decision to go. We were out of our 'safety zone' & were just worried that something could go wrong. We weighed up a lot of things over approx 2 hours & the fact that Tyler's counts were ok (he wasn't neutropenic) made that final decision. Also, we were quite frustrated at the 'wait & see' situation & decided we needed to get away. I also debated going to Canberra to get Ash & Terry going on his own but it really wasn't financially viable to go separate ways. I'm so glad we went cause not only was it a good time for all, it proved to us we could 'get away' from everything - even if it was for 2 days!
We still have a few more days of tests coming up & will hopefully head home at the weekend. We will know by then whether a transplant room is available for the first week of February or whether we have to be back on the 29th Jan for a 6th round of chemo - to fill in time (as there can't be too big a break between chemo & transplant). We will be EXTREMELY annoyed if he is given the 6th round as we don't feel he should be subjected to an 'extra' round of chemo because of a 'room shortage'. How sad is it that there are so many kids waiting on only 4 transplant rooms, it's just NOT good enough!
Ashleigh had a fun time at camp although I haven't had the opportunity to really get a lot of info out of her. I'm sure the photos will 'tell all'! I'm looking forward to seeing her at the weekend & hearing all about it, also to spend some time with her before we have to come back.
I would also like to express here how much it means to receive messages & well wishes from people - especially those whom we've never met but who send their love to Tyler & our family. Thank you to all & also to Leanne who is a very special person I have come into contact with recently.
No-one unless you have experienced living through this kind of nightmare with a child can ever understand what we go through but the messages & well wishes really mean a lot to us & help us get through each day.
Tyler is doing really well & is so strong & happy at the moment. It will be extremely hard to have to watch him get so sick again but we know in our hearts he is strong enough & will defy all odds!
Wednesday 24th January 2007 - It's official - WE HATE HOSPITALS!!!! Today we had to be at the hospital at 9am to prepare for the MIGB scan. We got there a tad late but it didn't really matter because we didn't go down for it until around 10.45am. Tyler was sedated for this test & afterwards slept till around 3pm when we decided to try to wake him. He was booked in for an eye check-up at 1.20pm (which of course we missed) so we ended up in the waiting room there till around 4.45pm where we got fed up & told them we weren't waiting any longer & were leaving (would you believe they asked why?). They persuaded us to stay & we finally got back to the RMH at around 5.30pm.
To say we've 'had enough' is an understatement! I wish I was in a position to write policy & procedure documents to help improve the running of these clinics. Somewhere, something has gone terribly wrong. It's not just the eye clinic, it's most things. Say we get told to be at an appointment at 2pm, we get there to find that there's other kids waiting for the same procedure - booked for the same time. To me that doesn't make sense. Why not stagger it?? Tomorrow we have to be at Ambicare at 7am for his CT scan (he has to have general anaesthetic for this one so they have to prepare them a bit), I've just spoken to another parent who has to be there at 7am. Last time his daughter didn't get sent down till 12pm!! These kids are nil by mouth from about 2.30am the night before so you can imagine how they are by the time they finally get their test done. I know it's the same in any doctor/ hospital system but when will someone WAKE UP & realise it DOESN'T WORK!!!!
Apparently they are supposed to send the youngest child down first but I've heard that's not necessarily what happens - to me that sort of system would make sense. Anyway, the fact that we have had very little sleep, had to get up 2-3am to stop his nasal gastric feeds, then had rush up there in the mornings only to spend a WHOLE day there for only 2 tests does little for my 'fragile' state of mind at the moment! Every little thing sets me off now & I'm just plain 'over the whole thing'. Terry is a lot more patient than me but he was the one who told them at the eye clinic that we were leaving so it's getting to him as well.
We've been told that Tyler is scheduled to go to transplant Thursday or Friday next week (1st or 2nd Feb). We have to be back here next Tuesday evening so we can get to the hospital early Wednesday morning to try again for the Kidney function test that was postponed the other day. We also have to fit in a clinic appointment & have a bone marrow aspirate done in the afternoon (where they insert a big needle into his hip bones & draw out some bone marrow for testing to ensure there is no evidence of the cancer there). Better take some happy pills on that day!!!
We asked a few more questions about the transplant procedure today & found out the following: Chemotherapy will be given 24hrs a day for 5 days, the following day Tyler will be given back his stem cells - this is classed as day 0. From then on we will talk in day 1, 2 etc. Tyler will (inevitably) get very sick from then on requiring lots of antibiotics & morphine etc. Once we hit 'day 14' his stem cells should start growing or 'taking' & he will 'hopefully' start improving. This could take up to 28 days, possibly more. Once he has improved to their satisfaction - no temps etc, we will be sent back to RMH where we should have been moved into a self contained unit (more isolation) for a period of 4-6 weeks. Once all his counts are stabilised & going well, we'll start the radiation which involves 14 days (not including weekends) of general anaesthetic (to ensure he lies still) & approx 7mins of direct radiation to his adrenal gland & 2 vertebrae that overlap it. After all of that & once he is well enough we should be free to go home with medication he has to take daily for 6 months with ongoing 3 monthly clinic visits, & then more scans etc that will have to be done here (to be confirmed), Sometimes they hold clinics in Canberra & if the timing is right, we can attend those ones. So it's all pretty full on from here on end but with each day that passes, we are one day closer to the worst of it being over!
I can already feel a bad mood coming on for tomorrow as I know there will be a lot of time spent sitting around waiting & I'm so keen to just get in the car & get home - I'm also really missing Ash & am looking forward to spending time with her. Sometimes it just feels like all the sitting around & time wasting is caused by such bad planning & people who just have 'no idea' but I know that's not really the case. Hopefully one day a better system will be worked out & all these annoying, frustrating, irritating situations will be gone forever - YEAH RIGHT!
On a brighter note & not thinking about the inevitable delays we will have tomorrow - TYLER IS GOING GREAT & WE'RE COMING HOME (sometime) TOMORROW & WE'RE REALLY LOOKING FORWARD TO IT :)
Monday 29th January 2007 - We received a call from Tyler's doctor this afternoon which has left us both feeling shocked, devastated & sick to the stomach. The last scans have shown that there is evidence of MIBG uptake in the adrenal gland where the original tumour was. This means that it's growing back - or that he has relapsed. We will not be going ahead with transplant at this point as they won't offer it if there is clear evidence of active aggressive cancer. At this stage all we know is that they will 'most likely' look at surgery again to remove it & then do radiation. We will know more once we actually see the doctor.
We are now extremely concerned that the bone marrow aspirate may come back positive to the cancer (that's been on my mind, not sure about Terry). The doctor hasn't said that but I guess it's hard for us to not fear the worst. It's so hard to stay positive at the moment but we know we have to. The problem is, this has come from nowhere - there is no way we would have thought this could happen already. I don't know if it means that he's just not responded to the chemo or what it means but we are just so devastated.
Tyler has had a wonderful time at home - we all have & we've tried to focus on preparing ourselves for the transplant & he looks & appears to be so well. I don't know how we prepare ourselves for this one.
Wednesday 31st January 2007 - Well, after a total rollercoaster ride of emotions we had our meeting with our doctor today to find out exactly what's going on. It seems that it's 'possible' the MIBG scan is a 'false positive reading' which means - something has shown up that wasn't necessarily on previous scans that could indicate a relapse in the adrenal gland, however, the CT scan doesn't come to the same conclusion. In fact one of the radiologists feels that the CT scan shows a 'slight shrinkage' in the liver tumours. The doctor now feels that if the urine test shows 'normal levels' & the bone marrow aspirate remains clear, we can go ahead with transplant next week. If however, the MIGB scan is correct & the urine levels are positive for neuroblastoma, Tyler has relapsed. If this is the case we will have to look at a different course of chemo & radiation, possibly surgery before they will consider transplant as the cancer needs to be 'under control' otherwise a transplant is not an option as it won't work. So I guess you could say we've hit a fork in the road that could go either way.
To say we are 'somewhat relieved' is an understatement. We are still very concerned about the results that we won't get till early next week but at least at this point it's not a 'definite relapse'. We have decided that Terry & Tyler will head home Friday or possibly tomorrow afternoon (we're planning on taking the kids to the Aquarium tomorrow) & I will head back Sunday with mum & Lesley (I'm off to see Bjorn Again at Taronga Zoo Saturday night with mum, Kerrie & Lesley as my birthday present which should be good - especially as at this point things aren’t as bad as we thought). We'll stay at home until we hear from the doctor early next week as to which way the road will take us - transplant or salvage chemo. Fingers crossed that transplant is the go!
You could say that the doctor has 'stressed us out' unnecessarily which we could agree with since we in turn have stressed out our family but at the same time, we are grateful for the fact that he was thorough enough to want to follow up on this 'possible relapse' rather than send us to transplant when the outcome could have been a lot worse.
I will update when I have more results.
Friday 2nd February 2007 - We took the kids to the Aquarium yesterday & just strolled around Darling Harbour for awhile. The Aquarium was really good & we appreciate the fact that they give family passes for families staying at RMH. Quite a saving & doesn't make the $19.00 parking fee so painful! By the time we got back it was a bit late for Terry & Tyler to head off so the plan was they would head off this morning - however, Wayne came in with some tickets to the Australia/ England one dayer (cricket) so the plans have changed again! It's nice we have so much flexibility at the moment though & I'm glad Tez has the opportunity to go as he loves the cricket, I however, am more grateful that I don't have to go!!
To back track a little, I didn't forget, but I failed to mention our special thanks to Rochelle & BJ for what they did for us on Tuesday. It was organised before we got our devastating news but the timing was pretty good. They hired a huge jumping castle & got a few munchies just as a bit of a last minute farewell to Tyler. As we were so stressed out at the time, it was great to see how much fun Tyler was having & it actually took our minds of things for awhile. Amanda, Graeme & Jazzmyn were dropping in anyway & mum & dad came out. We found that although we were extremely anxious about our appointment with the doctor the following day, we were actually able to sit & relax a little. Thanks heaps guys, it really meant a lot to us. I also want to mention the company that they hired the jumping castle from - they gave them a bit of a discount & left it set up for longer than they needed to so special thanks to 'Jumping J-Jays' (1800 22 78 53), we would certainly recommend them.
Tyler is going great & that keeps us positive. We're pretty much trying to ignore the fact that we're waiting on such important results & until we know otherwise we will just keep making the best of our time out of hospital. Tez & Tyler may head back tomorrow now & I will still head back on Sunday to be there for Ashleigh's first day of High School. Ashleigh doesn't cope well here as she just finds it all 'too boring' which I find 'quite frustrating'. One day she will understand that we haven't been here for a good time either! I'm so glad school's starting as she needs to get back into some sort of a routine & keep busy!
We don't expect any news till at least Tues/ Wednesday so we'll stay on 'stand by' till then & head back to Sydney as soon they need us to. We have a real good chance that things are ok & that thought keeps us going - he still amazes us!
Monday 5th February 2007 - Still no news from Sydney but no news is good news - right! Tyler is still doing well & is extremely happy to be home. Terry's been a bit concerned today as Tyler has complained of tummy pains. This of course takes us right back to before this whole thing started. I've tried to put it out of my mind & think of it as 'something else' or us just 'looking for symptoms' - who knows? Hopefully, it is nothing & the results will prove that.
The concert Saturday night was really good & I would definitely recommend the Zoo concerts to anyone - very crowded though so you need to be organised & get a good spot. It's a good night out & something different.
Ash started High School today & was very excited. She had a good day which was great to hear. Still can't get too much more than that out of her but I could see that she had a good time!
LOWEST ACT OF THE WEEK goes to whoever stole Terry’s mountain bike from within the grounds of Ronald McDonald House Saturday night (valued at approx $1700 & chained up inside to the fence at RMH). It's bad enough that we need to be there but the fact that people can stoop that low astounds me. Terry is very upset & annoyed about it as it was something he loved & something that gave him an 'escape' from our nightmare. I truly hope that whoever stole it falls off & hurts themselves - BAD!! Seriously, that's REALLY low! It's also a coincidence that Terry happened to be back at home that night as he left Sydney Saturday afternoon - makes you wonder. We've yet to find out whether there is any kind of insurance at RMH for this kind of thing happening. I would assume & hope that there is but we'll have to wait till we get back to find out.
We're kind of expecting, hoping - in a way, to get a call sometime tomorrow with the results as they said 'early next week' but again, we just need to wait & see. We will remain positive until we know otherwise.
HAPPY BIRTHDAY KERRIE – I WON’T SAY HOW OLD YOU ARE!!! (forty six) :)
Thursday 8th February 2007 - We got a call from the doctor Tuesday evening to let us know that the Bone Marrow aspirate test has shown up clear - no cancer in the bone marrow! So thankfully that has remained the same since Tyler was first diagnosed. The urine test consisted of 3 separate levels they were testing for - the first one has come back clear. Terry asked if this was a good indication & the doc said 'put it this way, the same test when he was first diagnosed had huge levels (can't remember all the technical stuff) but basically, this was a good indication. Wednesday the doctor called to say that the second test had come back clear also, & we found out today that the 3rd test is clear as well so they believe that the MIBG scan has shown up a 'false positive'. Great news for us & now we're back in Sydney waiting for stem cell transplant.
Tyler had a check up with the doctor today & he seemed very pleased with how he's going. He needs to have the GFR (kidney function test) at 9am in the morning then a dental check at 12pm. They were planning to put us into transplant tomorrow but we have decided that we will go in next week, possibly Wednesday. We both feel emotionally & physically drained at the moment & the extra break out of hospital should hopefully 'refresh' us & get us ready to cope with what's ahead. The past week & half has been a HUGE emotional rollercoaster & we're just so exhausted! The doc has assured us that the delay won't affect the outcome of the treatment.
I went to see nan yesterday with mum & I guess I wasn't prepared for what she was like. She's so frail & weak & is not the nan I remember. Mum was getting quite upset which in turn started me off crying & it's just so sad to watch. All nan keeps saying is 'I love you Yvonne', 'Please take me home'. Mum has decided that she will grant nans wish & take her home. Nan is dying & although I've known it's been coming for quite some time, it still doesn't make it any easier when you're faced with it. It's been a huge decision for mum but she's definitely doing the right thing for nan & there's nothing more she could have ever done for her. Nan's had a great life & will be 92 on 21st Feb. It's all just so sad & I don't even think any of us truly understand how hard this all must be for mum to have to deal with. Dad has been great also.
Ash started school Monday & is really enjoying it. I think she's settled into high school extremely well & is pretty excited about it all. It was very hard to say goodbye to her this morning but hopefully she'll be ok. I've informed the school of our situation & they've assured me they'll keep an eye on her. Luckily she can catch a bus right out the front of mum & dads that will take her to & from school. That should take a bit of pressure off mum & dad. I also worry about how she will handle things with nan, she told me she'll be fine but I really hope she will talk to people if it all gets too much for her.
We've pretty much decided that we won't go back home this time mainly because we want to focus on getting ready for transplant but who knows, we could change our mind yet. I think at this point we feel that Ash is settled at school & it's just easier to stay here, also, we’re sick of the travelling!!!
Tyler is very overtired at the moment & in desperate need of his 'pillows'! Update over!!!
Tuesday 13th February 2007 - We've managed to stay here (it was hard at times!) & have to take Tyler up for a pre-transplant check-up this afternoon. We have to get him admitted but they are planning to let us out overnight on 'gate leave'.
Tyler's been really good this week & although we haven't managed to do a lot, he's still had a good time. There were horse auctions on across the road over the weekend & we took him over to have a look at some of them through the gate on Friday. The guys in there were so nice & let us take him in to have a closer look, even gave him some cool hats! He loved it. We had planned to go back on Saturday so we could see some being auctioned but we just didn't get there.
We've had a couple of slight scares with him, one was Saturday night when he woke up throwing up. It was really out of character for him & we were very close to heading up to emergency when he settled & went back to sleep. He woke up fine the next morning so all we can think of is that maybe he ate something that didn't agree with him. The other drama here at the moment is another chicken pox contact. Luckily for us (extremely lucky) we weren't here on the Tuesday so Tyler should be fine. It's affected some other kids a lot worse because no-one was notified here until yesterday (the spots came out Thursday while the child was in hospital) so that left it too late to give them the ZIG injection that helps to suppress it. Jesse's transplant has been put back which means he has to have another round of chemo so there's not too much of a break in between treatment. Needless to say there are some very angry parents which I can totally understand! If Tyler had been exposed it would have been really bad for him also as his transplant would have been postponed again & we've already had a week & a half delay.
Not much else is happening. With transplant finally here, Terry & I are starting to feel a little anxious. We know he's going to get really sick & there's not much we can do about it other than being there to help him get through it.
Nan is back home with mum, dad & Ash & mum sounds so much better. She knows now without a doubt she made the right decision & it's lifted & huge weight off her. Nan is going ok & we're all glad she's 'home'.
Happy 47th Wedding Anniversary mum & dad!!!
Wednesday 14th February 2007 - DAY -5, our first day in the transplant room & Tyler's 1st day on the 'lethal chemo' that will totally destroy his bone marrow. He has handled it really well so far & hopefully that will continue till the end of the chemo which will finish around 12pm Sunday (it was started 12pm today). On Monday around 12pm he will be given back his harvested stem cells (this is classed as DAY 0). I think we'll all be VERY relieved once that has happened, even though he will most likely go 'downhill health wise' from then on until the stem cells 'graft' & start growing but at least we'll know that we're on our way to recovery!
It's kind of a 'numb' feeling for me being in here at the moment. I think it'll just take us a while to settle back in after such a big break out of hospital. There are many disruptions during the day & I think it'll be worse over night as they need to monitor things very closely - especially things like the urine output as the chemo can cause damage to the kidneys if it's not flushed through quick enough.
We've met another family who have just been diagnosed with stage 4 NB so that's now 4 of us here at Randwick - Millie has just finished treatment & has had her 1st check-up (I think results were good but I can't confirm yet), Olivia has just finished transplant & will start radiation within the next 2 weeks, Tyler has just started transplant & the new family who have just started treatment. It's one big sad cycle isn't it. I just really hate hearing of new ones but we seem to form some sort of bond in a way that makes us feel connected & wanting to help each other, even if it's just to talk. The other night at RMH I had a really good time as it was kind of reunion for some families who have been through treatment & are now going through the 'check-up' stage. There were 2 NB families there. It was just so good to sit & talk & have a drink & whinge about the same things & just compare things. I'm sure we'll all keep in touch in the future once all our lives are back to as normal as our lives will ever be. There are lots of lovely people you meet along this journey, some who cause a little bit of trouble & others whose stories are much more tragic than your own. It's just a totally different life now & an experience we will never forget, but one we NEVER want to return to!
I forgot to mention the wonderful massage I had the other day at RMH. Two ladies (that makes them sound much older than they were) are volunteering their time & hands to give massages at RMH every fortnight. One of them owns a clinic in the city (I'll have to get the name of it) as they are really good & I think that what they're doing is a great thing for us parents & really special. We carry around so much stress & worry at the moment but it's not till someone starts attacking the 'knots' that you realise just how much! There is apparently another girl who does it once every 6 weeks or so - I'll have to get her details also. It's the simple generosity of people like this that means so much to all of us at RMH.
Anyway, back to the transplant - with each night we get to, it's another day that's over & another day closer to the end of treatment!! I have my calendar & I'm counting down the days!! Pity I don't have one with chocolates!!
Saturday 17th February 2007 - DAY -2! Tyler is still handling the chemo ok so far. Last night he fell asleep earlier than usual & woke distressed, complaining of tummy pains & feeling sick just before 8.30pm. It took approx 10mins to settle him down & then he was fine. That also coincided with them giving him a dose of the anti-nausea medicine. He was unsettled a little on & off after that but it was more just a few whinges in his sleep. He woke up really well this morning & ate a pretty good breakfast which surprised me!
The last bag of chemo was recently hung up & that should hopefully be the LAST bag of chemo he will EVER have in his life again - it's a bit more exciting when you think of it that way! It should finish around 12pm tomorrow & that will be it! I can't wait till Monday when the stem cells go back in!
Nan is doing ok although I just spoke to mum & Kerrie who are finding it a bit hard emotionally at the moment. Dad has been so great to nan & extremely supportive to mum & has had to 'share his marriage' pretty much for at least the last 10 years or so (the last 5 or so nan has actually been living with mum & dad). Not every son-in-law would do that!! We're all extremely lucky to have dad & he has always been so loving & supportive to all of us. He may get a little cranky at times but we always know we can count on him to be there when we need him - he's never let us down! Thanks dad, you're the best!
Just spoke to Ash & she sounds really happy at the moment - partly due to having a super hair cut! Can't wait to see the pics but in her own words "the best hair cut I've ever had!" I'm not too sure when I'll get to see Ash again, really depends on what's going on here & how Tyler is but it's pretty hard when I think about it too much. Just hard not being there for her. Thanks again to mum & dad as I know she's in good hands with them.
Tyler is now sleeping peacefully so it's time for us to escape our 'cell' for an hour!!
Monday 19th February 2007 - Tyler's stem cells went in at around 2.30pm. There were 5 small bags of cells that were all frozen & defrosted 1 by 1. Once a bag was defrosted it was syringed out & then put into Tyler via his central line. The whole process took around 25mins I think. During this time Tyler was feeling quite sick (he has been on & off for the last few days) but this was more a result of the preservative that the stem cells are frozen in to ensure they don't crystallise or get damaged. We had heard from a few people that this preservative lets off a smell that some people refer to as a 'sweet corn' sort of smell. Apparently that's what the kids taste & it will get let out through his pores over the next 24 hrs or so. We could smell it & it wasn't as bad as some people made out but I could understand why Tyler wouldn't enjoy it - especially when he's already been feeling sick. Tyler's blood pressure is up more than normal but that's a common side effect of having the stem cells transplanted. They will just give him some medication to bring it down. It's amazing how many drugs he's on at the moment to help combat all the side effects from chemo etc. What a relief that part is finally over, now we concentrate on recovery.
The last 2 days we've noticed a big difference in Tyler. He's been feeling a lot sicker & has thrown up a couple of times. It kind of takes us back to after he had his surgery & he was really lethargic & just moaning all the time. It's horrible to see but it's only the beginning. Over the next few days he will develop mucositis which is lots of horrible, painful ulcers that pretty much follow the digestive system from the mouth, through the stomach, then the bowels etc. Basically with the ulcers he will have lots of really sticky, gooey mucus that will make it hard to swallow or cough up. In a lot of cases, the kids require morphine or similar pain relief to help them through. We're not looking forward to all of that but again, which each day we get through, it's a day closer to the end of treatment.
Nan is quite bad now & Kevin is going to Canberra this afternoon with the kids to see her then back 1st thing in the morning. I'm still deciding whether I should go or whether it will all just be too much on top of everything with Tyler. I feel quite 'detached' from it all being here but the more I talk to mum or Kerrie, the more I realise that things are going to happen soon. I think I will go because I think I'll find it harder being back at RMH tonight wondering whether I should have gone! I don't know, I guess I don't do too well dealing with the thought of death & seeing someone you love & care for so close to it.
Kevin has been great & came over yesterday afternoon to sit with Tyler so Terry & I could have a couple of hours away from the hospital. We only went down to RMH but it was good to get away & know that someone was with Tyler. The only other time we get away is when he's asleep & most of the time we just worry that he'll wake up while we're not there! Tyler wasn't too co-operative with Kev at first as he gets quite clingy & sooky when he's sick (which is understandable) but at least he settled after awhile!
Not much else to report. I think the next few days will just be spent giving lots of cuddles & comfort. I'll put up some pics of the transplant when I get a chance.
Wednesday 21st February 2007 - Yesterday was the longest day in my life & the shortest day in nans life. I went to Canberra Monday night & I'm so glad that I did because although it was horrible to see nan so deteriorated, I still got to see her & the rest of the family. Yesterday was nan's 92nd birthday & it was also the day she decided to leave us. It hit us so much harder than I think we expected because, although we knew it was coming, I don't think there is any way we could prepare ourselves for the actual event. It's been especially hard to see mum so upset. Nan passed away with many people by her side who truly loved her & from what I was told it was very peaceful, we're all very grateful for that. The funeral will be extremely hard but we all know that it was nan's time. She had a great life, was loved by many, she was a good person & a fantastic nanna. I will miss her so much but she will always live within my heart. A saying nan always told Kerrie which I think is great is: 'We only have one life. Surround yourself with people that want to be a part of your life who love you & are worthy of your love & bugger the rest!' That is so nan!!
Sadly, it was Aunty Helen's birthday yesterday also who we lost almost 2 years ago to cancer - that made it especially hard for uncle Mick & in his words to nan before she passed away - '365 days in a year & you had to pick this one!'. I'm sure nan would have cracked a smile if she had the energy!
Tyler is not doing so well at the moment & is in a lot of pain. He is on a fair bit of morphine & a few other pain killers & anti nausea drugs but they didn't seem to do a lot. I was here with him last night & with the events of the day I found it extremely hard not only to stop myself from crying but just to cope in general. It was so hard going from seeing nan to hearing of her death when I was on my way back up to the hospital then trying to comfort Tyler & seeing him in so much pain & distress, it was just horrible & emotionally exhausting. We had a really horrible night with little to no sleep. I think he finally settled around 4am but was then woken by beeping machines just after 5am. I didn't think I'd get through the day but somehow I've managed to! They've got him on another pain killer which did seem to settle him quite well but it's not compatible with the antibiotics he's on (got a temp during the night also so they need to get on top of that also), so they just have to juggle things around a bit. He's reading books with daddy at the moment & it's the best I've seen him for 2 days - perhaps distraction is the answer!
We can expect him to be this sick or even sicker over the next couple of weeks until his counts start to come up with the stem cells. We expected it but again it's still a lot harder when you're actually confronted with it. We are now on DAY 2 - still a long way to go but he's a tough little cookie & now he has nan watching over him. If he has a fraction of the strength that nan had in her life, I have no doubt that he'll be fine.
Monday 26th February 2007 - I've been putting off updating the journal just because I find it too hard to think about everything, problem is, the more I put it off, the more I'll have to think about!!
Nan's funeral was on Friday & was extremely hard for all of us but it was a really nice send off. As I've said, she had a great life & we're all very lucky to have had her around for so long, but it still doesn't make it any easier to cope with - it's all so final now. The kids (all of mums grand kids - excluding Tyler) all had photos & loving messages that they stuck on her coffin. I've never seen that before but it was actually quite nice. They also read out a prayer & their best memories of nan. I think they were all so strong & brave. My cousin flew back from Japan to attend & made up the most beautiful arrangement of flowers. Nan would have loved them. There were even some oranges taken (with permission from the neighbour as the tree hung over their fence) from nans old house in Glebe & included in the arrangement (they were still green) but nan loved those oranges so it was a really nice sentimental touch.
On top of all of that we've had the worry of Tyler. He's been so sick averaging temperatures of 40+, heart rate at times 200+ & the mucositis causes a lot of pain & makes it quite hard for him to breathe (he needed a bit of oxygen yesterday). He's now nil by mouth as we believe his tummy to be quite sore & irritated & unable to tolerate the nasal gastric feeds. He was throwing up a fair bit the other day & it's the green bile that he was bringing up after his operations so once again he has a little pot that collects all the yucky stuff & helps to drain his stomach. His liver has been slightly enlarged so basically they just need to keep a VERY close eye on him to ensure they get on top of any serious problems that can arise. He's very drugged up & sleeps most of the time which makes it a little bit easier although he's now very limited with his communication & is usually just moaning or unable to talk properly - depending on how high the drug levels are. He's now attached to 6 pumps & had to have a cannula put in his hand yesterday as they ran out of space for tubes. So far he's had 2 blood transfusions, 2 bags of platelets & a fair bit of potassium & phosphate infusions. Although the side effects of the drugs & lack of communication with him is at times a little distressing, we feel comforted by the fact that he's resting. We have been told by the doctors that Tyler is doing ok & is 'holding his own' & all of this is pretty much to be expected in a transplant & considering the tough chemotherapy protocol that he was on. It still doesn't make it that much easier to have to watch him suffer so much.
I've found it all so emotionally draining & at times I really don't know how to keep going. I don't think I've ever felt so physically & mentally exhausted. I just feel so sad all the time now & perhaps (as Terry says) that may last until Tyler starts to get better. I worry for Ash & I worry for mum & dad now as I think they (especially mum) will feel quite 'lost' for quite some time. Everything just feels 'too much' & I just want it all over with. I want to be home & have Tyler well & to be happy again. It's been hard for Terry also as he thought a lot of nan & was very disappointed he couldn't attend the funeral. We all know he was there in spirit. Terry's now also experiencing the exhaustion of it all & I think we need to work out some sort of system where we can both get as much sleep as possible.
For now we just try to get up each day & hope that Tyler gets through it without too much discomfort. Today is DAY 7 so hopefully the stem cells may graft sometime within the next week or so which will see him start to recover. It's Ashleigh's 12th birthday on Wednesday so I've arranged for her to come up to Sydney so we can spend it together. I think she needs to see her brother. I wanted to keep her away till he was better but with everything she's seen & been through in the past week, I'm sure she'll be fine. When I asked her what she wanted for her birthday her reply was 'my brother' so letting her see him is the least I can do!
The following is a poem that Ash wrote for her '2 nanna'. She read it at the funeral & I think it's beautiful & from her heart.
MY POEM
Love together, goodbye never, forever in my heart.
Those good times made in this parade, never will they die.
Joking around, with lots of sound, together in our hearts.
Love will never die, when you're in the sky, just up above.
You & I forever, just call whenever, up in the starry night.
My heart may be broken, but I take it as a token for
I know you have become a beautiful dove.
I know you will always be watching over me, & forever I will remember.
I love you nanna, you are evermore our queen of hearts, 'no' butterfly kisses.
By Ashleigh Gray
Saturday 3rd March 2007 - Again, I've put off updating as there were just too many things happening. The past week has seen Tyler extremely sick & in more pain than we've ever seen him (even compared to his surgery). He has been on really high doses of drugs but they don't seem to have a very lasting control over the pain & he has needed continual 'bolus’s' (extra quick infusions of the drug).
I stayed with Tyler Monday & Tuesday night & as we've come to expect staying here - had very little sleep. It seems that the pain increases overnight leaving him a lot more restless than during the day. We find he sleeps a lot more & is a lot more content during the day but that could be also due to sheer exhaustion! Terry stayed Wed & Thurs nights so I could spend some time with Ash.
Wednesday was Ashleigh’s 12th birthday. I was so excited that she was coming up & the social worker here arranged for her to fly up as a special treat & she was so excited to be seeing Tyler. Unfortunately, when Ashleigh’s plane was due to land, a big electrical storm hit Sydney & after a few delays & approx 40 mins sitting on the tarmac she was finally able to depart the plane. By this point she felt it better to see her brother on Thursday. That night Kerrie cooked a nice birthday dinner & we had a beautiful cake that was made by a volunteer - it was really beautiful.
Mum had mentioned that Ash had a bit of a cough so after getting the docs here to check her over when we got here Thursday, they decided that it was just too risky to let her see Tyler 'just in case'. Well of course she was devastated & I was also really upset for her (Kerrie wasn't allowed in either as she had a sore throat - although they couldn't see anything it was just the risk factor). Ash understands how serious it is if she's sick & Tyler gets sick from her, I think the main problem is that she doesn't really appear to be sick. Anyway, we had to go with their decision & hopefully she can come up one weekend soon & see him - it will be better when he's feeling a lot better anyway.
As far as the stem cells/ white cells go, there has been a rapid increase pretty much since Ashleigh’s birthday so at least that's one thing she can be happy about!
Wednesday white cell count - 0.07, Thursday - 0.22, Friday - 0.71 & today 3.6! So as far as the counts go, he's doing extremely well! On the other hand, his health doesn't seem to be improving too much. Yesterday his potassium was too high so they had to adjust a couple of things that they give him & put him on a nebulizer to try to bring it down. High potassium levels can affect the muscles so that in turn required an echo (heart test) which showed that there was a slight problem with the heart but nothing permanent & it will improve once the levels are fixed (not a major concern at this point). He had a CT scan done to see whether the intense pain was caused by something other than the mucositis - luckily it was fine. He needed platelets & blood & will need platelets again today. There is of course more stuff than that but it all gets a bit too complicated.
Today I gave him a bath, cleaned him all up & put him in a new shirt he got to make him look better. The doctor seems to think that he looks better also & we think the mucositis may be getting a bit better. It's still such a long drawn out process!!
Anyway, hopefully with the counts improving, Tyler will start to feel better soon. We keep saying that & so does the doctor so it will happen!!!
Wednesday 7th March 2007 - So much has happened in the last few days with Tyler that it would take forever to do a complete update! Basically, the end result is that he is definitely improving with each day & that he will continue to get better & stronger over the next week or so.
In trying to fill in some of the gaps, over the past few days - Tyler has had numerous platelet infusions, sometimes 2 a day (to be expected), blood transfusions (to be expected), a CT scan to check that there wasn't something serious causing the severe pain (which was clear thankfully), slowly the pain killers are being reduced which is great as it means he's a lot more alert when he's awake & I find the best way to interact with him is to read his favourite books to him - I don't know what we'd do without books, also, they were extremely high level doses!! Yesterday he actually sat himself up in bed when Terry started blowing some bubbles (thanks to our little friend Matty for getting the bubbles for him), today he was trying to catch them in his mouth! His pain now seems to coincide with 'poos' so it seems that the pain really is caused by the 'raw gut/ intestines etc'. His temps have now settled which has made a big difference to him overall (he was so much sicker at 40+ - understandably). Most of the time he is quite 'puffy' especially around the eyes & sometimes reminds me of a 'Budda' or an overgrown newborn baby - you know where their eyes are all puffy & squished! It's all just fluid retention & after a dose of some sort of medication to make him wee & some other stuff it usually settles down a bit. I got Ashleigh examined again on Sunday before they left for home & the doc was happy that the symptoms had definitely subsided. She was allowed in the room with Tyler but no contact. She was happy with that & I think it was a fair compromise. She really didn't appear sick to me & I think the symptoms coincided with a nasal spray she's been using for adenoid problems. Still it's better to be overcautious than take any risks.
The official scare of the week went to him throwing up an enormous amount of blood on Monday which scared & upset me so much that I then felt sick for the rest of the afternoon!! The doctors kept a very close eye on him but felt that it wasn't anything serious (unless it continued) & was most likely caused by a slow bleed in his intestines somewhere due to the fact that they are 'extremely raw' (a result from the intense chemo & the mucositis). It was also a result of very low platelets hence the need to keep up with the transfusions. In most cases they like to keep the platelets above 20 (Tyler had 6 at that point & normal range is 214-483). They have now decided to make sure his stay above 75 to try to avoid any other bleeds, this will most likely mean transfusions at least once a day until he stabilises.
His white cell counts are now steadily improving - Sunday - 3.76, Monday - 4.10, Tuesday - 3.36, today - 5.95 (which is in the normal range of 4.90 - 12.80). It's hard not to get too excited about it but we have to remember that this is not a 'true' reflection of his immune system. He is still getting regular infusions of GCSF which helps to 'boost' everything so although it all looks good on paper, his actual immune system is still very new & subject to easily get infected. Once the doctors feel he is ready, they will stop the GCSF & his counts will drop a little, once they come up & stabilise we'll feel a bit more relaxed.
Kerrie stayed with Tyler last night so that Terry & I could have a night out together. We ended up at The Coogee Bay Hotel which was great & where I ran into a friend I hadn't seen for probably 15 years - small world! It was so good to get away from the hospital & although it ended up being quite a late night (2am eating pizza on the beach) we really needed & appreciated it! I really need to work on the fitness though as the walk (fair walk) back UP the hill to Randwick nearly killed me!
Tyler still has a fair bit of recovery to do before we will be 'released'! Once he is completely off the pain meds & is able to tolerate some nasal gastric feeds we will be ok to go back to our unit down at RMH but separate from the actual house (which we move into Monday) for further isolation. The doctors are very happy with his progress so far & provided there are no 'unforseen' complications they feel this could even be at the end of next week (the thought of that excites us!!).
Radiation is 'pencilled in' to start on the 10th April (just after Easter) & 'estimated' to finish around the 27th April - this is of course all 'subject to change' as it's always a 'see how he's going' type situation. 'All going well' & provided he is well & has good blood counts, there's the possibility they would look at taking out his central line towards the end of May. Timing will depend on theatre availability etc & it can be done in Canberra if we want to opt for that - again, see how it all goes. Of course there is still a LONG, LONG way to go & the re-testing will be a really horrible time for us - but we've come so far already & now there is a light at the end of the tunnel & it's getting bigger!!
I'd just like to send my thoughts to Ben (my future brother-in-law) & his family for the loss of his grandfather Eddie yesterday. I had briefly met him once & had heard many lovely things about him from Lesley. It's ironic that Eddie was due to turn 92 this month & passed away exactly 2 weeks after nanna. I'm really sorry for your loss & just want you to know that I'm thinking of you all.
Saturday 10th March 2007 - Tyler is definitely continuing to improve. Over the last few days we have seen his pain relief further reduced almost to the point that he could have been taken off it completely tonight - however, the doctor felt it was coming down too fast & that he may have been experiencing some slight withdrawal side effects so it was turned up a little & will be reduced a lot slower.
Tyler's pain seems to be well under control & now appears to be associated with nausea. He was started on 5ml per hour of nasal gastric feeds yesterday morning which he handles quite well. Problem is that the docs put him onto oral meds as well which may have been a bit too much for him to handle all at once so we had approx 4 vomits yesterday, one last night where he threw up the NG tube & had to have it replaced! I've noticed that he was only sick after waking up after a long sleep - so he was sick again this morning. It's nothing to worry about at this point because it will take a very long time for his gut to heal so this is all just part of the process. We've also noticed that his 'poos' are now (although still VERY runny) are starting to look more normal in colour & there seems to be no more pain involved so that's all great.
We've had him up on his feet a couple of times but his legs are extremely weak so we don't push him too much. When you consider just how long he's spent in bed - today being Day +19 (post transplant) but actually being confined to this room for 25 days, that's been an incredibly long & exhausting time for all of us. At the same time though, it's nothing compared to what some families have endured & still are. We are SO lucky that Tyler had an autologous stem cell transplant (meaning he used his own stem cells). In many other cancers kids aren't that lucky (if you can call anything associated to this 'lucky') & have to be given donor transplants. Some of the complications we have seen from this is heartbreaking & one family in particular that we know of have been in a transplant room for over 150 days & are still very far from being 'lucky' in any way at this point. Sometimes it's so easy for us to get so caught up in what's happening with Tyler that we often forget how much worse things could be - of course it could all be a LOT easier but in some ways, we have been lucky.
He got a temp over 38 last night so is now back on antibiotics but again there's no real concern at this point. He also has a bit of a runny nose so they took a sample for testing to make sure that it's nothing nasty. It's really reassuring to know that they're on top of these things.
On Thursday his white cell count was 12.00!! So the GCSF was stopped to see what would happen. Yesterday it dropped to 3.83 (his platelets down to 25 so they 'topped' him up) & today the count is 3.25. This was all to be expected & not a concern as his neutrophils although dropped from 2.4 to 1.7 are still in the normal range. So until he drops below 1.0 & becomes neutropenic, he won't require the GCSF.
Overall, Tyler is in great spirits & actually smiled & laughed yesterday for the first time in weeks. It made us feel so good! I bought him a fold out Thomas lounge Thursday night & he loves getting out of bed & sitting on it & playing with his toys. His grandma sent him a car from the movie 'Cars' that you press buttons to control where it goes etc. It also talks & is really cool, he loves it. He especially loved crashing it into aunty Kerrie's legs yesterday which kind of started the smiles & laughter! He still gets so much enjoyment from us reading books together & always has to look at his 'albums' which are 2 photo albums that I've put together of his journey so far. It's so encouraging to see him so interactive & happy. He still gets pain & there's still a LONG way to go but that light's getting bigger every day!
Tuesday 13th March 2007 - Things are still looking good however the 'ups' & 'downs' are definitely slowing the progress. The last couple of days Tyler has been pretty stable & although he is being weaned off the pain killers, he is still at times, struggling with the pain, especially just after he wakes up, or overnight. We find that he usually feels quite miserable from when he wakes in the morning till around lunch but then he really picks up & enjoys playing with his toys & being tickled & laughing with us etc. He's still not eating - nor does he want to & he'll only have a drink if we put it in a syringe like medicine!! His nasal gastric feeds have been turned down to 5ml per hour again after actually getting up to 15mls yesterday. So hence the 'ups' & 'downs'. He had an x-ray done of his chest/ tummy today as the doctor could hear a couple of rattles in his chest this morning, I believe this has come back clear. He's had a bit of a cough for at least a week which we haven't been concerned about as he is still so full of sticky mucus. I think that's the main contributor to him feeling nauseous & vomiting. So everything's pretty much going as well as can be expected at this point. The bloating around his face is starting to settle & he's actually starting to look like Tyler again!
His counts were continuing to slowly drop after they stopped the GCSF so he was given some yesterday to boost them up a little. He also needed a top-up of blood today. We managed to get him out of his room yesterday for 2 laps around the ward (he just had to wear a face mask). He really enjoyed it but after the 2 laps he was ready to go back! The doctor feels that if he continues to do well with the feeds & getting him completely off the pain killers etc, we should be able to take him back to the unit for 'gate leave' by the end of the week. That will be great for all of us but we don't want to push it until he's ready. It will be a lot more stressful having him vomiting & being in pain if we're down there whereas here we have the 'comfort zone' & support from the nurses & medication which makes it that little bit easier to handle.
We moved into our little unit last night & it's SO good to have a little bit of our own space & privacy. It even has a little courtyard, our own kitchen etc, it's all very exciting!! We were starting to (well, we're well on the way to) becoming quite stir crazy as our options were to be in our isolation room up here with Tyler, then down to RMH to our isolation room there (it wasn't really, it was just a room) but it was just going from one room to another!! Now at least we can go back to our unit, sit outside or whatever. I even had breakfast this morning (which I've not really bothered to do since being here) just because it was so convenient!! Small things, I know!
Anyway, we know things are looking up, we know that it's all going to be a very long slow process but at the same time we're so tired & just 'over it all'. We're hoping that it will all be over with & we'll be home in May some time. We're counting down the days, although we know we shouldn't but we need a goal to head towards to keep us going & that's a pretty good one!
Wednesday 14th March 2007 - Tyler had a very settled night last night & a really good day today. A member of the pain management team came to see him this morning & advised us that a lot of the symptoms Tyler is displaying such as: sweating, tummy cramps, nausea, all over body pain etc are related to withdrawal of the Fentanyl drug that they are weaning him off! This was really reassuring & although I didn't expect Tyler to understand, I explained it all to him & told him that he would feel much better in a few days.
Whether he understood some of what I told him or not, he was in great spirits today & again enjoyed playing, laughing & overall just seemed 'better'. He was even pulling himself up & standing, walking a few steps without too much discomfort & doing some 'stand up' sit down' exercises with daddy!
His nasal gastric feeds are again up to 10mls per hour & will be increased by 10mls every 8 hours or so depending how he handles it. He had one vomit this morning (which I think was bought on by some medicine that had been put down the tube) & a few runny nappies but it's all still pretty much to be expected & the doctors are very happy with his progress. It makes us feel so relieved & happy to see him so good!
Blood counts today were not too bad & although his platelets are down to 18, they prefer to leave them & see how he goes on his own. White cells are 5.13 & neutrophils are 3.3. So although boosted by the GCSF Monday, his bone marrow is still doing the right thing.
A VERY happy birthday to Rochelle (Tyler's cousin & God-mother). Shelle (& BJ) you have been so wonderful & supportive to us & to Tyler & I hope you have a wonderful birthday!!
Sunday 18th March 2007 - Things had been pretty much the same since the last journal entry - ups & downs, weaning off pain killers, trying to re-establish the nasal gastric feeds, trying to get him through the withdrawal symptoms etc including 4 nights in a row of 12am vomits with him bringing up the NG tube & needing it replaced until yesterday . . . .
The doctors have been talking about giving Tyler 'gate release' for the last week & the only thing that was really keeping him in hospital was the Fentanyl infusion so they decided to take him off that & put him on oral morphine & wean him off that instead. Yesterday he was let out on gate leave & we now have him back at the unit with us!! It was all so sudden & is very exciting but at the same time, a little bit scary!
As he is being weaned off the morphine, we need to give him 0.5mls every four hours (along with other medication at different times). Needless to say, we have less sleep now as we're paranoid of sleeping through & missing his meds! He was sick at around 3.30am this morning but thankfully managed to keep the NG tube down.
Tyler has had an amazing turn around since leaving the hospital. When he got here yesterday he was moving himself around off the lounge & onto the floor etc (which he hasn't been able to do for quite some time now) & was also playing with his toys etc. He has been attempting to drink fluids & even forced himself to have 3 small bites of vegemite toast so that I wouldn't attach him to his NG tube! Unfortunately I still had to 'hook' him up as he needs it but it was a good that he is now willing to attempt food. The doctor had told us that it may take months before he starts to eat again so we took this as a really good sign.
Today he appeared to be having a bit of a 'down day' but still managed to get himself walking around without us helping him, he has become so much stronger on his legs in just 2 days. He had a huge sleep this afternoon & we later found that his platelets are down to 14 so that may explain why he wasn't feeling so well & we can assume he may need a transfusion tomorrow. White cells are down to 2.76 & neutrophils 1.7 which means he's still not neutropenic which is great. Docs said counts will still be 'up' & 'down' for awhile so there's no concern with these results.
We feel so relieved to have him out of hospital but at the same time are feeling a bit anxious. We haven't been discharged yet but even being on gate leave has left us feeling that we're not really sure of what to do. How isolated he needs to be, how high we should be setting the NG feeds, when we should be reducing the morphine etc, etc. There are so many questions we have & I believe that we'll get the chance to have them answered tomorrow which will ease some of the stress. It's funny how we've wanted this moment for so long but now that it's here, we're scared. There is a lot we/ Tyler has to face in the future & I guess just not knowing what the future holds is the worst part about it all.
Although we have all these anxious feelings, we are SO GLAD to have him out of hospital!! I actually cooked dinner tonight (1st time in what feels like forever, just because there's a kitchen in the room) & Terry & I were sitting down eating it & Tyler looked at us & said 'where's my dinner?'! He comes out with the funniest things lately!! Of course when I dished him up some he wouldn't have any, but how cute is he!! There are so many stories I could tell about the funny things he says & does but it would take forever.
Tyler has grown up so much over the last 7 months & although we are both grateful for the time we have been able to spend with him, to read, & play & to teach him things, it upsets us that he hasn't had a 'normal' 2nd year of life. It will never cease to amaze us how he has managed to get through all of this 'horror' the way that he has. He has endured so much pain. so much discomfort, so much poison pumped through his innocent little body & yet he has got through it all with a sense of humour, strength & god only knows what else. He is one very special little boy & there is a big light at the end of the tunnel & we will get through all of this & be a family again with Ash & someday in the future, we'll have some sort of life again. It will never be the same as what we had before, but we will always have hope & stay positive.
Saturday 24th March 2007 - Tyler was officially discharged from hospital on Tuesday (I think). It was all a little confusing really. It's been a pretty hard adjustment as everything was so full on during transplant then all of a sudden we were on gate leave, then discharged. In a way, we found it all a little frustrating as well in the sense that we were getting less sleep than before as we had to be up every 4 hours to give him morphine & other medications at various times. We still had to be at the hospital at 8.30am on Sunday & Monday to get medications that they didn't have on hand to send us out with. He needed platelets Monday night (by the time they got there!) so Terry had to have him back in hospital around 8.45pm & then I picked them up around 10.20pm. On Tuesday we were again at the hospital for his radiation planning. This involved him having general anaesthetic to ensure that he was completely still so they could pin point exactly where he needs to be radiated. At this point they will be radiating his adrenal gland (where the primary tumour was) & depending on the outcome of the MIBG scan which we have on Wednesday this week, he may need radiation on his liver where the other tumours were located. If the scan is clear, they won't radiate the liver so that's what we're hoping for.
There were a few hours waiting around at clinic on Wednesday. Overall the doctor was very happy with Tyler's progress (this wasn't his usual doctor though as he's away at the moment). His red cells were 87, platelets 41, white cells 2.4 & neutrophils 1.3 although these are a little low they were happy to leave further tests till Monday to see how he goes. If we're concerned at all we just have to go to emergency. At least these are his 'real' counts so at least we know everything is doing it's job in that area.
Tyler has still been struggling a lot with pain & walking, putting weight on his legs & nausea etc - most likely due to withdrawals from weaning him off the morphine & clonidine. We have seen a lot of improvement in him at times but there are also quite a few bad times when we're not sure whether he's throwing a bit of a tanty or is genuinely feeling sick & sore. A lot of the time - especially when he just wakes up, it even hurts him for us to pick him up. Again, we're not too sure whether or not this is due to withdrawals or the fact that he could just be so traumatised from everything that he's been through that he's been having bad dreams or something. I guess it's all something that we just need to work through with him. Good news is that we finished with the morphine around 1.30am Friday morning so that was great! Clonidine will finish on the 3rd of April so it's very slow weaning!
We're very excited that he is starting to eat & drink. The doctor had told us that it's quite normal for neuroblastoma kids post transplant to not eat for months. We had been encouraged by the fact that Millie & Olivia had done so well (it really helps to follow their progress) & have been eating heaps so it's been great that Tyler is trying to do the same. It's only small amounts at this point but at least he's trying. He really enjoys steak at the moment which surprised me but we'll go with whatever he wants at this point. The main aim from here will be to get him to eat & drink enough so that he can maintain his weight & we can get rid of the NG tube. It will be SO good to get rid of that. It's never really bothered him which has made it all a lot easier in that sense but it will be SO much better without it & another step closer to him getting better.
We have clinic Monday morning & will pretty much expect that he will at least need a platelet transfusion just to keep him 'topped up'. We have to be very careful with him having low platelets as the last thing we need is for him to have a fall or some kind of accident & end up with internal bleeding or something!
Tuesday he has the MIBG dye injection & then Wednesday the MIGB scan. This is the scan that gave the 'false positive' result before we went into transplant so we'll be quite anxious to get the results from this one.
Today is DAY +33 and protective isolation (which involves Tyler wearing a mask whenever we're out near the public or in the hospital etc & limited (or 'screened' visitors) officially ends on DAY +42 which is 6 weeks from transplant. It is then up to us when whether we want him to continue to wear a mask etc. We'll still need to be extremely careful with him & will most likely be a bit 'over cautious' at times as it's still just too risky to expose him to anything that could make him sick. His immunity will still be weak for quite some time so our 1st trip to a shopping centre will be quite scary!
It's still all a bit surreal at times & now that Tyler is improving so much its sometimes hard to truly remember how bad things got. One day I'll read this journal & I'm sure it will bring it all back but I've found that even when I'm writing it down I can't fully explain just how hard it got, even the photos don't show how sick he was. Then again, maybe it's a good thing that we can just concentrate on any little sign of him getting better, rather than dwelling on how sick he was. I also had the loss of nan to deal with at the same time so thinking back on it all is a bit of a blur. I think Terry can remember things a bit clearer.
Tez & I were talking the other night about everything & we are still so fearful of the future & what it may bring to Tyler. Unfortunately I've read too many stories, that haven't ended well & that kind of sticks in my mind at the moment but we have both agreed that we have to push all our fears aside & start to live for the moment - yes, the old 'day by day thing'. It's a really hard thing to do but that's what we need to focus on. We have come this far & Tyler has been so amazingly brave that we have to try to be grateful for the fact that he 'should be' through the worst of it. From here on we help him recover, keep coming back for the tests & just keep hoping for the best. He's such an amazing little boy & we are just in awe of him. He has so many people who love an adore him - especially his big sister Ash who has also endured a pretty hard time of it the last 7 months. I feel that we have protected her from a lot & a lot that she didn't need to see when Tyler was so sick but I have always told her the truth about how serious it all is. She is a really good girl & I'm extremely proud of the way she has managed to handle things. I'm really looking forward to Easter & the holidays when she can come up & be with us. Tyler will be feeling so much better & we've noticed that he really picks up when there's other kids around. He misses Ash as much as she misses him & I think it will be great for them both to have a few weeks together. Although, things will be quite cramped here!!
I've been pretty slack lately (just enjoying time away from hospital - 4 days tomorrow!!) & we've been able to take Tyler for a drive in the car & just get him out & about a little so I haven't kept up too well with the album page. Will try to update it soon!
Also, we'd like to say a huge thankyou to the Starlight Foundation who sent Tyler a little package of toys the other day, he really enjoyed receiving it & we really appreciate the work that the Starlight Foundation does for these kids. Another thank you to everyone who keeps sending their love &
