Monday 9th April 2007 - Well, so much has happened since my last update! I'm not sure where to begin or how to keep it brief!!!
Thursday 29th March we all did end up going home to Canberra/ our block. We had clinic in the morning & his blood results were - Red cells - 82, Platelets - 33, white cells 2.53 & neutrophils 1.7. Although these counts were ok, we opted to give him a blood transfusion to 'top up' the red cells so we didn't have to worry about it over the weekend. We finally got back home later that evening.
Being home was great for Tyler & for the rest of us. Both he & Ashleigh were extremely happy to see each other & we were able to stay at home until Tuesday (so we got approx 4 1/2 days there).
Wednesday we had a clinic appointment back in Sydney with (we thought) Tyler's doctor who had been treating him throughout the last 8 months. Apparently he is now job sharing with another doctor so we see less of him which is at times a little disappointing as he knows so much about Tyler's case & situation. We ended up waiting around for around an hour & a half & then saw the other doctor who informed us that Tyler still has a spot of active neuroblastoma in his liver. We weren't overly shocked at this news but still quite upset. When we asked her if this is quite common after so much treatment, she replied that 'it's not uncommon & affects approximately 30% of the kids'. This statement didn't make us feel much better. It seems with every setback that Tyler has had throughout his treatment, he is always in this small bracket of children. Our only hope or consolation is that with all the complications he has had, he ends up being in the small percentage of children that survive this cancer.
After our clinic appointment we had to meet with the radiologist. She had her own concerns about the situation that seemed to make things worse for Tyler. I've been saying lately that the light at the end of the tunnel was getting bigger, after all this we were left feeling that we had somehow taken a wrong turn. It seems that to radiate the spot in the liver & the original tumour bed, was a higher dose than she had given any child of Tyler's age. Her concern was that approx 6 weeks after the radiation Tyler would likely end up with something called VOD, basically a liver disease which could again be life threatening. One option was for the surgeon to try to remove it (given his surgical history we were a little apprehensive) but on talking to the surgeon this was not an option as it was too complicated. The radiologist then sent an email to America (as they are approx 5 years ahead on this treatment) to see whether it would be best to radiate the liver now, wait approx 6 weeks then radiate the tumour bed. We weren't overly keen on this option as it would delay the end of treatment quite a bit but at the end of the day we have to go with whatever is best for Tyler. The end result was to radiate both at the same time but to postpone the radiation until the 17th April to give his liver a chance to really recover properly after the transplant, we were due to start tomorrow (10th).
Thursday after Tyler's radiation planning (which was putting him under general anaesthetic & doing a 'trial run' without actually radiating), we were going to head home but instead got some very bad news from another good friend of ours that had just been told that his son had relapsed. He has a type of 'blastoma' but his was originally a tumour in his head & his treatment was a trial. This news was devastating to all of us as we know them extremely well. He was told that if there is any evidence of the cancer in the spine then he is best off taking his son home for quality of life that he has left. We decided that we were needed more in Sydney Thursday night to TRY to console him along with our other friends there (it's hard not mentioning all the names but out if respect to them I think it's best not to). We all had a really good night (given the circumstances) & at times like that the most important thing is to be there for each other. It's been a really bad couple of weeks really with the bad news of those we care about & all we can do is try to be there for them. The thing that brings it home to us is that it could quite easily be Tyler, but we just try our best not to think about that. Still, it really breaks our hearts to hear such bad news of those we care about.
One thing we learnt with the radiologist was that when he had his main tumour it had actually pushed his kidney up & his spleen down so when it was removed they both sort of 'dropped' back into place. What this would have meant with radiation to that area was that the kidney would have pretty much been destroyed. With the advances of radiation technology they are now able to radiate a "U" shape of the tumour bed around the kidney to minimise the damage. This was at least good news.
Friday we came home for Easter & we are staying till at least the 14th at this point. My nephews, Michael & Ryan have won a community award for their efforts with the fundraising night in December. We'd love to be there for it but will see how we go.
For now we will concentrate on getting Tyler stronger & healthier for his radiation treatment. We still have quite a few problems with him through the night but I think it's a lot to do with the trauma of everything that he's been through & hopefully with time it will get better.
It's so good to be home!
Sunday 15th April 2007 - Being home was great up until Wednesday 11th April when Tyler started vomiting. He was sick around 3 times during the night & threw up his NG tube which we had to remove, then he had 2 very soft/ runny nappies on Thursday morning & 1 Thursday evening. Our main concern was that he had picked up a gastro bug as he REALLY can't afford to get sick at this point in his treatment. We took him to Canberra hospital on Thursday afternoon to have his central line dressing changed & have his tubes flushed & heplocked. We decided not to put the NG tube back in to see whether we could encourage him to eat & drink enough without it. This hasn't been too successful as he's not been feeling too well. Thursday night he was sick again but only once & early hours of Friday morning both Terry & I got the bug.
It's been really stressful with us being sick as we've managed to remain healthy (reasonably) for the last 8 months & we've been really scared that we'll make Tyler sicker. I sent Ash to my sisters Saturday night to hopefully avoid her getting it.
Our other huge concern with Tyler vomiting was that his cancer may have started spreading again. It's so hard not to think bad thoughts with everything that's been going on. With the delay in radiation & knowing that the neuroblastoma still has some active spots we are really, really scared. Our friend in Sydney got the devastating news on Monday that in 3 weeks his sons cancer had grown again with I think 4 small tumours in his head & some up his spine & I believe in his bones. He has been told to take him home & give him quality of life that he has left which may possibly be only around 4 weeks or so. We have spoken to the dad & we just didn't know what to say, there's nothing at all you can possibly say to comfort someone given that news. His son is his life & it's all just so wrong that this happens to these kids. Life is so unfair & unjust.
We have spoken with our doctor today & unfortunately at the time I didn't think of everything that I wanted to ask him as it's been some time since we've actually spoken to him but he advised us to take Tyler back to Canberra hospital so that they can check him over & give him IV fluids if he's become dehydrated. He mentioned that the liver is still the same & the spot that showed up active (which we believed to be false positive) is much smaller. We were told that there's only a small spot on the liver so somewhere along the line we are not getting told the absolute truth. He also said that he really needs to be 100% to commence radiation as it will knock him around a little & make him nauseous & possibly sick so if Canberra don't think he's well enough or want to admit him tonight we will have to delay the radiation. If he still has signs of gastro they will have to delay radiation due to infection risks. I told him that we're very concerned about the delays because of the active spot & that it may give it a chance of growing again. He pretty much agreed & said that we need to get started ASAP but unfortunately we need to get him checked over first & make sure it's ok to start. This news has really upset us as this could change everything. We are now really scared for him & can only hope that Canberra give him the ok & we can get on with things on Tuesday. I think Terry & I will go out of our minds if this gets delayed. There's too much at stake.
Tyler's been ok the past couple of days & been pretty happy but also at times quite whingy & not eating enough at all. He also threw up again once this morning so after he wakes up this afternoon we'll head to the hospital & find out what happens next. We can only hope that things go ahead as planned, he's had far too many delays throughout his treatment as it is, SOMETHING has to go right for him.
Tuesday 17th April 2007 - Canberra Hospital were an absolute pleasure to deal with. I called, asked for a Paediatric registrar, spoke to a really nice one who called up the ward to ensure there was an isolation room available for Tyler & then called me back to let me know, she also advised us to head straight to the room & not to let him touch ANYTHING as the ward is 'full of bugs'! When we got there (around 5pm) they were all ready for him, took bloods, put him on some IV fluids & we then waited for the results. By around 7ish we had already seen the doctor who advised his results were quite good & there was no indication that he had a gastro bug & was possibly caused by something he ate. That was great news for us & we then took him back home.
It was almost 3pm by the time we got sorted to head to Sydney. I guess you could say we're not overly fussed on the place! We hadn't heard from any Sydney doctors so assumed that radiotherapy was still going ahead as planned. During the trip we did get a call from radiation to let us know we had to be there at 8.30am & up at C2North by 8am. I'm glad they called us cause no one else did!
I took Tyler up for his first radiation session this morning as Terry was a bit concerned that he may still be infectious so we agreed it was best for him to stay behind. Tyler was a little whingy as I had to wake him up to take him but apart from that he was pretty good. After everything that had to be done - blood pressure, temp etc, basic stats in C2North we finally got to radiation around 8.40am. We were taken into a room where Tyler sat on my lap & they gave him some white stuff through his central line that put him to sleep within seconds. I found it a little distressing as they just scooped him up out of my arms & into the very hard uncomfortable mould they made of his body when they did the planning a few weeks ago. I was quite surprised that I was fighting back tears as I left the room & then couldn't control them once I was out. I really wasn't expecting to get upset as I had already experienced them 'putting him out to it' on the final planning session just before we went home for Easter. I think I just became overwhelmed & emotional at the fact that this is all we have left. It feels like all the other treatment he's been through hasn't really worked & this is it. If this doesn't kill off the active spot we don't know what will happen. We've never been advised of that situation so we have no idea.
Tyler appeared to come out of it all fine & ate more throughout the afternoon than he has for quite some time. Not solid meals or anything, just lots of picking which is great. He didn't experience any nausea or discomfort & hopefully that will continue throughout the next 11 sessions. They put his NG tube back in which is another good thing (although we hate it) but we can start him back up on the pediasure to try to put some weight back on him. He's now dropped to 13.30 kilos & is looking quite thin considering we had him up to 15kg just before stem cell transplant!
We bought Ashleigh's friend Seraya back with us for a few days (whom she lived with throughout most of the treatment) & so far they seem to be having a good time. We're off to the Easter Show tomorrow with some other friends who've come up from Canberra so that will be a big day out. Kerrie is going to come over & mind Tyler for us so we can all go.
We both feel pretty much on edge at the moment & pretty scared of the future & what will happen. I'm sure we will slip into the old routine of things & learn to just cope 'day by day' again but I think until we can clarify some things up with his doctor we'll still remain quite stressed. We are on the final leg of the treatment & before we know it we'll be heading home. Hopefully we will get the results we need & be able to try to get back to some sort of a normal life again.
Some exciting news we do have is that Tyler's hair & eyelashes are starting to grow back! They were growing back just before transplant but then fell out again from the chemo. This time round it should all keep growing as he won't be having any radiation to his head. It will be weird to see him with hair again as we absolutely adore our little baldy but I'm sure we'll get used to it & it will probably help us all adjust to everything after the end of treatment. I can't believe we've been doing this for almost 8 months already. It's been SO, SO unbelievably hard yet it seems to have gone so quickly. We still have hope & that's all that keeps us going lately but with all the bad news of those close to us here in the last few weeks, we cherish the fact that we do still have it.
Sunday 22nd April 2007 - Tyler got through his first 4 sessions of radiation without too many complications. Wednesday evening he vomited & threw up his NG tube so it had to be put in again on Thursday morning. Thursday afternoon he threw it up again & had to have it replaced Friday morning. He was only sick on the 2 occasions but unfortunately with him unable to keep the tube down, we were unable to give him any pediasure. We spoke to the dietician who is quite concerned about his weight loss & said that 'worst case scenario, if we are unable to keep the NG tube in for the feeds, he may end up in hospital on the TPN (via IV). To avoid this she gave us a more concentrated recipe for the pediasure in the hope that we can get more of it into him over the weekend.
Friday afternoon Terry received a call from Tyler’s doctor (as requested by us as we hadn't been able to see him). According to him, Tyler has always had a small active site in the adrenal gland which has slightly shrunk & the spots in the liver have also slightly shrunk. This is much different to what we were told by the other doctor & basically means that he has only had a partial response to the chemotherapy protocol he has been on for the past 8 months. This is very devastating news to us as not only do we feel that we've been 'kept in the dark' from the whole truth, we really don't know what this means for Tyler's future. I have felt that with the previous news of the active cancer in the liver, radiation was our only hope. This is still the case & our doctor said to Terry that neuroblastoma can respond well to radiation, he also said that in the beginning in regards to the chemotherapy so it goes without saying that we are pretty stressed about the whole thing. We will make an appointment to see him for Thursday so that we can get some definite answers & the truth.
Tyler has managed to keep the tube in over the weekend so we have been able to give him lots of pediasure & we have really enjoyed having the weekend off treatment - no 8am starts at the hospital! Today we saw a little bit of Michael’s footy game & went for a drive to Captain Cooks landing spot at Kurnell. It was really good to get out & about. We all had a really good time & even saw some dolphins!
We were not given a schedule for radiation this week but are assuming that we need to be up there at 8am tomorrow. Hopefully we are right & then we’ll confirm everything for the rest of the week. We are REALLY angry about the miscommunication & lack of information we have been given in regards to Tyler's current status with treatment. We will definitely clear it up this week.
Wayne, Cherie & the boys went home Thursday afternoon which is great for them as Jesse's treatment is now finished & he is doing well. We kind of feel a little isolated now from the support of all the friends we've made at RMH over the last 8 months as they are no longer here. It's a bit strange not having that everyday communication with people who are in a similar situation to us. There are many people in the house but as we've been isolated in the unit, we haven't had the opportunity to get to know them as well as we did the others..
I've been putting together a DVD for Pete who has taken his son home & only has a matter of weeks left with him. It's been the hardest one I've ever had to put together. It’s of his life & was meant to be a gift for him for his 30th which was late last year but with everything that's gone on with Tyler & then nan, time just got away from me. It's now a priority & thankfully I'm almost done & will send it this week. It's been extremely emotional for me & I'll be so glad when it's finally finished. Pete & Dylan are big St George fans & Kerrie went down to Wollongong on the weekend & got the Dragons to sign a jumper for Dylan as it's his 8th birthday tomorrow. Life is so unfair & I'll NEVER understand why this is happening to any of us.
Friday 27th April 2007 - Tyler is now half way through the radiation treatment. He's still getting through it really well & managed to keep the NG tube down till Tuesday night when we were out to dinner with Kerrie & Kevin. They put a new one in yesterday & so far he's been ok.
We spoke to his doctor yesterday & really don't know too much more than we already did. Basically we just have to get through till the end of treatment which finishes next Thursday, then go home & wait around 4 weeks, come back & have the scans & tests done & hope for the best. If there is no sign of active cancer then they will plan to take the central line out & he's then on a course of tablets for 6 months with monthly check-ups & 3 monthly scans (I think). If it's still persisting then we have to discuss our options. The doctor is keen to try surgery to remove it but it will depend on the surgeons as to whether they can safely remove it. I questioned him on why we've been told different things & he just said that there's always been a small spot in the adrenal gland, perhaps we just weren't listening when they told us that! Terry had spoken with the radiologist the other day & she always seems more positive & leaves us feeling that thing's aren't as bad as they seem. Hopefully she's right.
I managed to get Pete’s DVD finished & posted it yesterday with a couple of things that Kerrie got for Dylan. They're both huge St George supporters & she got a couple of junior development squad tops & went down to Wollongong last weekend & got one signed. Apparently Dylan's not doing too well & has blurred vision & can no longer walk. I can't believe how fast this is all happening to him, it's really scary & so sad.
We're planning to head back to Canberra whenever we're finished at the hospital this afternoon as I have to take Ash back for school & it's also a good opportunity to take a lot of stuff home. It's amazing how much you accumulate while you're here. We have mum & dads car as well so we can load both cars up & hopefully manage the rest next weekend when we actually go home after treatment. It's SO strange & also pretty scary being so close to the end. I guess it's the fact that we just don't know whether it's all worked now. Basically they feel that the treatment hasn't really worked & all we have left for now is the radiation.
Life is REALLY CRAPPY in more ways than one right now!
Wednesday 2nd May 2007 - There is only 1 more session of radiation!!! It's such a weird feeling. We thought we would be SO happy & excited at this point, in a way we are as Tyler won't be getting any more poison into his body & we can concentrate on feeding him up & getting him healthy again. But on the other hand, it's a really scary & hollow feeling. For 8 months we have been living this nightmare & then all of a sudden it just feels like 'all finished', 'off you go back to life', 'see you in a few weeks'! What we or I struggle with in particular at the moment is the lack of support we have here from the hospital. It really is like you're just a number who's been served at the deli & it's just 'see you next time'. For me that's not good enough. This has all been SO stressful & how do they expect us to just go home & carry on with life? How do we get back into the routine of getting Ash off to school, helping with homework, Terry going back to work, whilst all the time wondering 'did it work?, has it come back?, will he be ok?'. These are questions that are going to drive us mad.
They do have 'coming off treatment' seminars but we were not informed of the last one & the next one is next week. We won't make that one because once we get home, we'll only come back here when we HAVE to!
I kind of wish there was someone I could just scream at to say 'Don't you understand what parents need?'. There's probably more that I could say & there's someone I can think of that I'd like to say it all to (no not Terry) but what's the point now. I think the best bet is to just get home & see the Canberra social worker & go from there. On meeting with her the first time I found her really supportive & understanding & that's what we need.
I wrote the above this morning just before heading up for his 2nd last radiation session & I must say, I feel a lot better about things now & we are getting a lot more excited about the end of treatment! I had an extremely good nurse this morning when I got up to C2N & was explaining to her how I'd been feeling. By the time I returned to the ward with Tyler after the radiation, she had paged the doctor, spoken to someone in Social work telling them there is a gap in the system & was chasing up some paperwork for us in regards to coming off treatment & Retinoic Acid that Tyler will have to take for around 6 months commencing in around 5 weeks - that alone is a little scary as it's another toxic drug that he will have to deal with but as Terry said, nothing could be worse for him than the transplant! I'll go more into the Retinoic Acid closer to him starting.
We spoke to his doctor & have dates booked in for the next scans. MIBG injection will be on the 5th June, scan 6th. CT scan is on the 7th June. Until then we have weekly visits at Canberra Hospital to have his central line flushed & bloods checked - especially to keep an eye on his liver function. We also need to catch up with his Canberra doctors. I guess depending on the results from the scans, we'll then aim to push them to take out his central line.
For now we are just planning to remain positive & the most important thing at the moment is that Tyler is doing REALLY well. He's looking well, he's very happy, he's eating well & his hair & eyelashes are growing back. If anything can make us feel better throughout all of this frustration it's just a hug & kiss from Tyler & he's SO good at it!
I keep failing to mention the Brighton Le-Sands Fisherman's Club. Terry spent Anzac Day there with Kevin & some of his mates. Throughout the day the club was fundraising for kids with Cancer. By the time Terry was ready to be picked up I was able to take Ash & Tyler in. There were some directors of the club who approached Kerrie as she was sitting with Tyler, asking about him etc & saying that if there is anything they can do - if we need a function room for fundraisers etc they are more than happy to help out in any way that they can. They took a photo of Terry & I with Tyler & asked if they could put it up. They also asked if we would be happy to come back in with Tyler so they can present the cheque to Tyler on behalf of all the kids once they've reached their goal. We'd just like to thank this club & the directors for all their support & for choosing to help kids with cancer. Your efforts are really appreciated.
Sunday 6th May 2007 - Well, Tyler finally finished treatment on Thursday. After all my anxieties & fears regarding the end of treatment, we were all VERY excited to at last, be at the end. The various departments of the hospital - radiology, recovery & C2N all had little presents for Tyler & balloons or streamers to help him celebrate. He has been such a brave little boy throughout this whole ordeal & it was really nice to see him acknowledged like that. We got photos of him with as many of his favourite nurses as possible & a lot of them also commented that he was one of the best patients they had ever had, he never complained, was always co-operative etc. I must say that although I've found a lot of our time spent in the hospital & various situations & people VERY frustrating, we need to give the nurses a lot of credit. They really do a fantastic job. Some of them just do their job which is fine, but others really go out of their way to help or do whatever they can to try & make things a little easier on the families & these are the nurses that the kids form a very special bond with. I think it would be really hard to be one of these nurses as they become close to quite a lot of kids & they would lose some of these kids but it's so nice to see their caring/ compassionate side.
We told RMH that we'd be out on Saturday but decided that we'd just take it easy on Friday & see how much we could get done. Although we've taken a lot of stuff home on our last few trips, we still accumulated a lot of stuff over the past 2 months of living in the unit. I thought we'd be done early afternoon but it was 6pm Friday evening before we were finally 'jam-packed' in the car & ready to head off to Kerrie & Kevin’s. That was a weird feeling leaving Ronny Macs, really good, but still a little weird as it had been our home for the past 8 months! We are now booked in for our next stay at RMH from 4th June - 8th June for Tyler's scans.
Terry left for Muswellbrook on Saturday to visit family & get some work done on the car with his brother Tony. I decided to stay here at Kerrie’s with Tyler. I think it will do him good to have some time with family & even though he wasn't too keen on leaving Tyler behind, I know he'll still have a good time & maybe unwind a little. I feel like I've come down with a cold/ flu so I've just got to do my best to make sure that Tyler doesn't get it. I think everything's finally catching up with me now & I'm just a bit rundown. We can't wait to get home so hopefully the car won't take too long & we'll be home mid-week.
Tyler is doing REALLY well. He is still very active, very happy & eating well. I've found a couple of books on foods & recipes for preventing cancer (or for people with cancer) so I'll start using those when we get home to try & get some healthy food into him. A few days ago I was pretty scared about it all, but now I can't wait to just get back into all the 'normal' stuff at home. Terry & I decided that if he continues to eat well & is eating healthy enough we'll take the NG tube out sometime next week. That will be one less thing to worry about & given the fact that his hair & eyelashes are growing back, without the NG tube no-one would ever think he was sick! We'll work on getting the central line out once we have the next scans done (provided the results are good).
Anyway, as Tyler keeps improving, our confidence in him beating this keeps improving. As he gets stronger, our confidence will get stronger. We need to learn to live with the fact that although we don't know yet whether the radiation has worked, we can't let the negativity of 'what if' rule our lives. Once we can do that we can forget about the statistics & just focus on doing whatever is within our power to keep him well.
I still can't believe that it's all over (to a point). From here we just do regular check-ups & hope for really good results. He is an amazingly strong little boy & he WILL beat this I know that from deep within my heart.
There is no word on Dylan as yet (our friends’ son who is not doing well at all). We have kept in touch but his health is rapidly deteriorating & it's really only a matter of time. Knowing that, it gets harder to call with each day that passes. It's an unimaginable situation for a parent to be in & it's so hard to know what to say to him, there's nothing anyone can say. We just continue to send our love.
Tuesday 15th May 2007 - Where do I start after leaving the update for so long??? Well, Tony did a fantastic job on the car (we needed new suspension etc) so I must highly recommend TNT Mechanical & Offroad in Scone for very professional & prompt service (for those in the area!). Terry got back to Sydney on the Wednesday & we continued on & FINALLY got HOME on Wednesday evening (9th May).
It's been SO good to be home. We've not done much but just being back is wonderful. We've managed not to stress too much about Tyler as he is looking so well. His hair is really growing back now & is very fair & his eyelashes are well & truly on their way back. He still has the NG tube in as we felt he's not eating quite enough to maintain his weight but apart from that you really wouldn't think he was sick.
I'm still trying to recover from the flu that I've had since Tyler finished treatment & Terry has managed to pick it up as well. So far (thank goodness) Tyler has only had a bit of a runny nose at times & isn't showing any other symptoms.
Of course things couldn't run smoothly for us for too long & after getting Tyler's routine bloods done on Friday we received a call from Tyler's doctor in Sydney to see if he was ok as his platelets came back at 24 which is quite low. There was also evidence of a viral infection which could possibly explain why the platelets are low. He said he wasn't too concerned if Tyler was otherwise well & we could just leave it till Thursday when we get the next bloods done. A couple of hours later we got a call from Canberra Hospital who were quite worried about the results & asked that we go in Monday or Tuesday to get them re-checked.
Yesterday I got to the hospital at 9am (hoping that it wouldn't be an all day affair if he needed to get a platelet transfusion) & finally got the bloods done around 10am. Tyler & I then went shopping to waste some time while waiting for the results to come back. Eventually the results came back & his platelets were down to 9! The registrar checked with Tyler's paediatrician here & they advised that he didn't need a transfusion unless it dropped below 5. We were a bit worried about this considering the fact that when platelets are that low, you can easily get internal bleeding etc & the fact that we would have to closely watch Tyler for signs of any problems so Terry called Sydney to confirm with them that all was ok. We were also concerned about the fact that his platelets are dropping so low & his other counts (white cells etc) are continuing to climb.
After speaking to Tyler's doctor again, we were very distressed. It seems that there could be a few reasons why the platelets are dropping - an enlarged spleen (doc doesn't really feel that's the case though as Tyler's never shown any signs of it), a disease/ viral thing called ITP (Idiopathic thrombocytopenic purpura) A blood disorder characterized by the destruction of blood platelets due to the presence of antiplatelet autoantibodies. (Autoantibodies are antibodies directed against the patient's own cells, in this disorder, the patient's own platelets) & the other cause could be possible relapse. Whatever the cause, we need to go back to Sydney to have a bone marrow aspirate done to get to the bottom of it.
We eventually heard back from the doctor last night to confirm that he wants us back in Sydney for tests tomorrow. As you can imagine, we're not overly excited about it at all & it just feels like one thing after another. It really feels like we'll never get a break from this whole nightmare. The doctor seems to be leaning toward ITP which is probably the best one (if there can be a good one). It can go untreated but I guess we'll just have to wait & see what the actual outcome is before trying to figure out how to fix it. I asked if it was a good sign that the white cells are coming up (I needed something good) & he said yes, if the other counts were coming down he would be VERY worried about a relapse. That was a little comforting.
Today I got in touch with our Canberra social worker to see if there's any possible way we could fly up. There is a thing called IPTAS which assists people with cancer etc (they also cover the accommodation at RMH & are a great organisation). IPTAS can only cover 1 parent accompanying the patient so Terry & I agreed that he would go so I could stay with Ash. She was really upset when she found out we had to go back as we haven't even been back a week & her & Tyler were SO excited to see each other, it was really cute. I think she's feeling it all now & doesn't like being left out. So far the flights are looking good which is great because we are so exhausted & the thought of travelling back to Sydney was just horrible. At least by flying, it can be exciting for Tyler as it's his 1st time in a plane! All going well they will fly up some time this afternoon/ evening & back sometime tomorrow evening. The social worker's done a great job organising it all in such short notice. It will be pretty strange for me not to be there but this was a quicker & easier option than driving up & at least they'll be back tomorrow night.
I just hope that everything is as simple as it seems with getting up there, having the test & getting back & that there will be no other problems or setbacks (they will call with results tomorrow evening). We SO need for things to just settle down for awhile cause I feel that I'm really at a point where I can't cope with too much more. There has to be some good news eventually as Tyler really appears to be going so well. We're trying to plan some sort of family holiday down the coast or something before Terry has to go back to work in June just so we can all try to unwind a bit. Hopefully this new little problem won't be too difficult to fix & we can get away in the next couple of weeks!
Friday 18th May 2007 - Finally, some good news!! We managed to organise the flights (with a couple of last minute dramas) but Terry & Tyler flew off to Sydney 7.30pm on Tuesday evening. Unfortunately because it was dark, Tyler didn't really get the full extent of flying. I'd say to him it was just like being in the car! At least it was a lot more beneficial for Terry!
After a VERY long day for Terry & Tyler at C2N, Tyler finally went in for the bone marrow aspirate around 1.30pm. The poor boy had to be nil by mouth the whole day so you can imagine how whingy he was! The test results weren't expected to be back til Wednesday morning but preliminary results came back on 2 of the 8 slides which indicated that there was NO EVIDENCE OF NEUROBLASTOMA in the bones (which has always been the case but VERY reassuring that this was not a relapse) & there are no classical indications of the ITP disease. So for the first time in 8 months, we have received some good news!!
When the doctor called Terry with these results she explained that it's possible that the low platelets could just be a result of everything Tyler has been through - chemo, transplant, radiation & then a virus showing up in the blood which could be what Terry & I have but just affecting Tyler differently. His other doctor called yesterday to confirm these results but the 'actual' results for the ITP test won't be back till next week along with the urine test which can also show up any evidence of neuroblastoma. If these 2 tests remain negative we will be extremely happy & relieved! We already feel that way & are not expecting any bad news.
Tyler is still doing really well & is continuing to eat more & get stronger every day. It's SO reassuring to us to see him looking so good & it has made it so much easier to be able to just get on with things here at home & not dwell on the 'what if's'. All going well & with no other unexpected trips to Sydney, we have another 2 & a bit weeks at home before we have to go back for the scans. I'm really starting to feel more confident that those results are going to be good news also & that things are really starting to turn around for us.
Sunday 20th May 2007 - Tyler is continuing to do really well. Friday night we decided it was time to take out the NG tube & he was very excited (so were we!). It feels like such a big milestone to have it removed. He is eating quite well but we will still need to keep an eye on things & ensure that we are giving him a good sustainable diet.
We had some very upsetting news on Friday that our little friend Dylan had lost his battle with cancer. Dylan had a cancer known as Medulloblastoma which is normally an adult form of cancer & also extremely rare. It's a tumour that originated in the brain & despite the chemotherapy protocol that he endured throughout most of 2006, he relapsed a few weeks ago & was taken home as nothing more could be done for him. Dylan turned 8 a couple of weeks ago. We are very good friends with his dad & his grandparents whom we met during our stay at RMH. His funeral is on Wednesday (23rd) which we will attend in Narrandera with another couple from Canberra. We all decided that the kids should not attend so Ash & Tyler will stay with mum & dad. It's going to be a very emotional & sad day & there are absolutely no words of comfort that we can give the family, all we can do is be there to show our love & support. I've said it so many times but it's so WRONG that these kids have to suffer like this.
We did have something good to make us all smile today which was the delivery of Tyler's quilt from Quilts4kids. It is absolutely beautiful & was delivered by a very lovely lady & her family who had contributed to one of the squares. Linde who started up the Quilts4kids (in QLD) has done a wonderful job setting up the whole thing & has bought smiles to many kids in providing these quilts. What makes it even more special is the fact that so many international people are doing the squares & it's such a special feeling to be presented with one that has been put together with so much love. Tyler loves it & it will always be so precious to us. Thank you so much to all of you that contributed to such a beautiful quilt.
We are really enjoying being home & are slowly adjusting to everyday things. Terry went fishing Saturday night with some friends which was really good for him & he & Tyler both enjoyed the (very small) rainbow trout that he bought home! I've kept myself very busy trying to do a big 'spring' clean up at home - getting rid of lots of clutter & also trying to help mum & dad clear out some of my stuff from their place so that Shelle & BJ can live there. They moved out of our place last week but there's still a fair bit of work at mum & dads so they can be self contained in the rumpus room. Shelle & BJ did a fantastic job looking after the place while we were away & we really appreciate it, unfortunately there just wasn't enough room here for all of us!
Apart from our sadness over Dylan & his family, we are really enjoying the fact that Tyler seems so happy & well. It helps us so much & it's sometimes hard to believe that we've all been through so much - especially Tyler. To look at him now, you'd never know what he has been through. We are still being very confident that the next scans in early June will bring good results. I'd also like to thank Vince’s' mum Heather (Ashleigh’s grandmother) & her friend who came & said some very special prayers over Tyler yesterday. We really appreciate their time, love & support & it really meant a lot to us.
With us going to Narrandera on Wednesday we may get Tyler's bloods etc done Tuesday just to check that everything's going ok.
We're both feeling quite exhausted at the moment but I don't know whether that's due to all the things we've been doing since we've been home, fighting off the flu or just that we're unwinding from the last 8 months & all the draining emotions that have come with it. Hopefully things will settle down a bit soon & we will get some energy back.
Monday 28th May 2007 - I knew I'd left the update for awhile but didn't realise it was that long!!
Last Wednesday we attended Dylan's funeral in Narrandera. We knew that it was going to be an extremely hard day but I don't think there is any way to actually prepare yourself for something as sad as that. Dylan was only 8 years old & for pretty much the last year of his life was a very sick little boy. He endured chemotherapy, radiation, spent months away from his cousins, family & friends & then once his treatment was all over, he & his dad moved down to Wollongong. During this short time Dylan started to get sick & then went back home to spend his final weeks with everyone who loved him at Narrandera. It was so hard to be at the funeral but I'm so glad we were there for Pete. There were a few of us from Ronny Macs as we all have that special bond now that means we will always be there for each other. What I found to be the hardest part of the day was seeing Pete so distraught later that night. There was nothing we could do, he was pretty much inconsolable which is only natural, we all felt so helpless but we were there & we could only try to comfort him & feel some of his pain. What Pete went through that day & previous to that day is something that no parent should ever have to endure but there are so many that have & will & it's just SO wrong. It really bought home to us the reality of our own situation with Tyler & how quickly things could change.
Later that afternoon we received a call from Tyler's doctor in Sydney regarding the latest bloods we had done on Tuesday. His platelets were up to 35 (from 11 last counts) but his hb (red cells) were down to 92 (from 110). They don't really know why that has dropped - but he's not too concerned. I think the white cells were slightly down but again nothing to be concerned over. He is happy to wait till we get the bloods done this week to see what happens with the count. He also stated that Tyler does have the ITP - yes that's the disease that the other doctor told Terry that Tyler DIDN'T have. Yes, I'm confused too. It seems that by having 2 different doctors treat your child, you end up getting different test results. I questioned this fact & that we'd been told that he didn't have it but was advised that on discussions with the team, they had agreed that he did have it (something to that effect). What we do from here is see what the bloods do this week & then decide whether or not to treat it. Treatment can be with steroids or some chemo type drugs. Neither of these options really appeals to us & I think at this point we'd rather just keep an eye on the counts.
We kept probing him about booking in to take out the central line but he won't commit to it. He wants to wait & see what the next scans reveal regarding the liver. We then asked if we could put in a tentative booking with a surgeon (trying to save time & get things rolling) but he wasn't keen on that either & prefers to wait till we get the test results. It's a really good thing that Terry & I can remain positive throughout all of this as it could be quite easy to give up. There are only so many times you can be told by a doctor that the chemo didn't really work, neither did the stem cell transplant so we just need to see what the radiation has done & take it from there.
I think we're at the point where we don't take in too much of what they say at the moment cause at times it just feels like they really don't know what's going on. We believe that Tyler is doing well & is going to be ok. I for one expect these next tests to come up good - I want to hear the word 'remission'. However, we will never stop questioning things that we're unsure of & we will always be watching him closely for any sign of 'anything'.
Tyler is great at the moment. He is eating really well & I think is putting on a little weight (will find out when we weigh him next at the hospital). He is full of energy & still continues to amaze us. He really keeps us going.
Wednesday 6th June 2007 - Just a quick update. I've been putting it off as Tyler is doing (appears to be) so well that I just didn't want to even think about him being sick!
Last Tuesday we were a bit worried as his blood results showed that his counts were dropping (not a lot but enough to worry us). On speaking with his doctor we were again told that we just need to sit tight & wait for the results of the scans due this week. The lower counts could be caused by a few things including the 'suspected' ITP disease. It was also possible that the medication he has been on (Bactrim, Nilstat & Fluconazol) can also lower the counts so we were told to stop them which we did.
Monday we received a call from Sydney to advise that our MIBG test had to be rescheduled for next week as there was something wrong with the machine. Luckily we weren't already on our way up there! After numerous calls to Sydney we finally managed to reschedule the CT scan for next week also as the idea of two trips in two weeks was not appealing! We were quite anxious about getting these tests over & done with & getting the results but the delay really hasn't bothered us as much as you would expect - hey, it's another week at home!! It also helps that Tyler is looking so healthy & well at the moment. Sometimes I allow myself to let it slip my mind that he has such a serious illness, maybe that's a good thing at the time but it's always there somewhere in the back of my mind.
We got his bloods done again today & they seem to be coming up again which is great. We spoke with his doctor yesterday who wasn't convinced that he had ITP (he said it was very hard to be sure) & the virus showing up was more likely to be caused by whatever Terry & I had. So again we feel like we're going round in circles with that. At the end of the day the main thing is that whatever caused Tyler's counts to drop wasn't anything too serious.
It's so great to be home & with each day that passes it feels a little more normal. Now we wait till next week is over & see what the outcome of that is. Tyler really is doing great & his weight is finally back up around 15kgs. It hasn't been 15kgs since the start of transplant in Feb so at least we know that we did the right thing taking out the NG tube. He's happy, cheeky & very sooky at times but it's just wonderful to have him home & have him looking so well & 'normal' again.
Wednesday 13th June 2007 - Not very happy campers in this house today! Just as we were getting ready to head off to Sydney for these dreaded scans, we got another call from them to say that we can't go ahead with the MIBG - AGAIN due to some complication with the Isotope (radiation stuff) that is needed for the scan. As there is no more ANYWHERE in Australia, we have to wait for it to be imported & are now re-booked for next Tuesday! We are still going up for the CT scan which he's having in the morning & are currently waiting to hear from our social worker to see if we can get into one of the family lodges down the coast for the few days in between as we're not that fussed on coming back home tomorrow & then heading back to Sydney Monday. I think a few days at the coast will do us good but I guess at the end of the day if we have to just keep going back & forth for these tests, there's not much else we can do.
To say we're stressed is an understatement. There's so much tension & frustration here at the moment & Terry & I have pretty much had enough of everything. Tyler was supposed to be on the Retinoic Acid tablets around 3 weeks ago & is continually getting delayed. The doctor wanted to wait for both scan results to come back because if there is still evidence of active Neuroblastoma in the liver we will need to discuss our options (surgery etc) which would further delay the tablets. The idea of these tablets is to mature any cells which could possibly turn into Neuroblastoma therefore reducing the risk of relapse. Delaying this treatment is making us feel that he is being put to unnecessary risk for relapse & it's just not good enough. Our doctor has agreed to start the tablets this week, see what the results show next week & go from there.
We are NOT happy right now. On a good note, Tyler's still appears to be doing well within himself, he's looking great & he's really enjoying being at home - that helps!
Friday 22nd June 2007 - We were kept at the hospital from 7am till around 4pm on Thursday 7th June when Tyler had his CT scan. We managed to catch up with his doctor & were finally put onto the Retinoic Acid tablets that he should have been on around 26th April. It was delayed due to concerns of how the radiation may have affected his liver. We pushed & now we have them, mind you he has to take 3 in the morning & 3 at night (quite difficult with a 2 1/2 year old!).
We managed to get to Ulladulla around 8pm on the Thursday night thanks to our Canberra Social worker & the wonderful people that look after the Yurana Homes (holiday homes for families with Cancer). It was great to just be away from everything & despite having pouring rain most of the time we got 2 days where we went to Mogo Zoo, Old Mogo Town & fishing. Tyler really enjoyed all of these activities & even caught a fish! I was quite happy that all of the fish we caught (Bream) were too small & had to be let go - except of course the one that I caught (with Ashleigh's help of reeling it in). It swallowed the hook & was legal so Terry had to kill it & he & Tyler enjoyed it for dinner that night! It was good to be away as a family.
We got back to Sydney on Tuesday for his MIBG injection at 2pm. Wednesday he had his scan & despite the fact that they kind of over drugged him a bit & he just kept sleeping, we thought that all was fine & we'd still be heading home & getting results on Friday. This was not the case.
Our doctor & social worker took us aside while we were still waiting on Tyler to wake up to give us the most devastating news. Tyler has relapsed in his adrenal gland (site of original tumour). There is also no evidence of change to the liver. What this means is that Tyler is classified as having 'aggressive resilient disease' with no chance of survival. We were in complete shock & in the end I just got up & had to get out of there. It seems that because he has relapsed so close to transplant they don't believe that any further treatment will do anything other than 'perhaps' prolong things, keep him in hospital & make him sick. Basically we need to decide what we want for our family & for Tyler & I got the impression that they believe we should bring him home & have quality of life with him while we still have him.
There are trial treatments that they will offer if we want but they stressed that they are 'trial' & have had no survivors.
We just can't believe this news. We were never really expecting to hear anything like that & given the fact that Tyler has been doing so well & looking so well we truly believed that he had a good chance. We've always tried to remain so strong & so positive but again in one split moment they have taken it all away from us. They have told us that Tyler will not make it.
We've both been such a mess since hearing this news. It has devastated our entire family. Terry is managing to put on a brave face but I just can't stop crying. If I cuddle Tyler I cry, if I read to him I cry, if I try to play with him I cry. I wish I could be more like Terry & just enjoy every single minute we have with him because he is the most beautiful amazing little boy but I just can't. My mind keeps thinking of all the horrible things that I try to block out. I imagine his funeral, what I would say, it's just killing me & I feel that someone has just torn out my heart. How do you ever recover from that? How do we get some strength back to keep fighting for him? I know that Terry is feeling exactly the same & I know that this is all extremely hard for Ash but she is also handling it differently. It's more like she is in denial & just won't believe or accept what's happening. That may be good for her at the moment but it really worries me. I'm sure she understands what's going on but she's just choosing to not give up & that's great. We will all fight with everything that we've got. We will not give up on him no matter what the doctors say.
We contacted Tyler's radiologist yesterday on our way home (we stayed at Kerrie’s Wednesday night as I just wasn't up to travelling). She was always so nice & optimistic that we wanted to make sure she was across the case & to see if there was anything she might be able to do for him. She now only works Wednesdays at SCH & is at RPA the rest of the time but assured us she would look into it for us. Just speaking to her made us feel a little better.
On our way home yesterday we called into mum & dads & told them the news. I was trying to keep it from them until the weekend because it was dads 70th birthday yesterday & on Saturday he is sky diving (which is what he wanted) & we've all been so excited about it. I didn't want to upset them - especially dad on his birthday but I'm kind of glad we told them because the whole family is so supportive & while I was with them I managed to stop crying for awhile. Everyone is being really supportive & we appreciate that so much.
We got a call from Tyler's doctor today to see how we were going (how does he think we're going?) & also to pretty much reconfirm what he had told us the other day. The specialists were all meeting today to look at Tyler’s scans & discuss options. We were holding out a little bit of hope that one of them may decide that Tyler is treatable & has a good chance but that doesn't seem to be the case. Tyler's new tumour is 1 & 1/2cm x 1cm x 1cm either in or close to the lymph node in the original tumour bed (I can't remember). There is the possibility that they could remove it via surgery but he feels the only benefit of that would be to confirm neuroblastoma (very unlikely to be anything else). It's possible that it could be maturing neuroblastoma but even if that were the case he still believes that there would be active cells around. This would also depend on what the risks would be to Tyler given everything he's been through already & how sick he got from the previous surgeries.
He wants us to meet with him next Wednesday in Sydney to discuss all options & also to meet with the radiologist & see what she thinks.
Terry & I pretty much agree that we do not want to put Tyler through anymore unnecessary pain or make him sick if there's no real guarantee that it will save him. We are also looking into other areas that may be able to help - tomorrow we'll see a naturopath & we're trying to get an appointment with a Chinese medicine guy in Sydney who works in conjunction with medical & herbal type treatments & specialises in Cancer. I have written to Jays mum & plan to speak with her tonight just to see what else she has done with Jay as he's one special boy who has defied all odds. Apparently Jay’s specialist is one of the best in Australia & specialises in neuroblastoma - it may be worth a trip to Melbourne? We will also do research into what they are doing in America & possibly speak with someone over there.
They may have broken our hearts & taken away our strength & hope but we will fight back. We will not give up on Tyler & we will do ANYTHING that is in HIS best interests. I as a mother simply cannot sit back & wait for this monstrous cancer to invade my son's body. We must find something somewhere out there that can help him. We will regain our strength (somehow) & our hope but we are now also asking for a miracle.
For now Terry & I have agreed that we will be doing whatever we can with both the kids to have some fun. We'll get away more, go to the snow & do what we can even if Ash has to miss school. Being with her brother is more important at the moment. I hope that I can soon control my emotions & be happy around Tyler as well. We have so many great memories with him, so many funny things that he comes out with & we have many, many more to make with him. We just want to make every minute with him extra special now.
Please continue to pray for Tyler & send us strength to keep going. I'm not sure how often I will update the journal now but will do so as often as I can.
Tuesday 26th June 2007 - The eve of the meeting in Sydney. I must say I'm getting pretty nervous, stressed & angry really. Kerrie, Kevin & dad are coming into the meeting with us so I feel that we're well 'backed up' & that between us all we should be able to cover everything that we need to. I'm looking forward to seeing the radiologist to see what her views are & we'll certainly be firing some questions at the doc.
Life for the last week has been so difficult. It's honestly felt like a struggle just to get through each day but Tyler really does give us the strength we need. To look at him you would swear that there was nothing wrong & you can laugh with him & smile with him & thoroughly enjoy him but then from out of nowhere you get a sudden jab in the heart & again you are reminded of how bad the situation really is. I know I have to move on & I know that we have to just enjoy every single minute we have with Tyler while we can but our hearts are just aching so much & I so desperately want this pain to go away, I want to be happy again. I want the doctors to be wrong.
Saturday we took Tyler to a naturopath in Canberra. She did a test on him & agreed with the doctors that what he has going on is 'like a run away train'. All she could suggest to us was to put him on some supplements - Transferon which is colostrum with glyconutrients to help his immune system, Anthoberry Orac6000 Antioxidants to help his heart, Organo Adrenostress to try to 'balance' his adrenal function & Omega 3 oils. She was really nice & never promised anything. I at least feel that we're doing 'something' to help repair some of the damage caused by chemo. He takes it all really well which is good.
I have spoken with Jays mum a couple of times & learnt that Jay has 'positive spots' show up on his MIBG scans that have been proven to be scar tissue! Could you imagine that if this turned out to be scar tissue?? I know that is wishing for a miracle but that's exactly what we need right now, a miracle. She has also highly recommended Jays doctor at the Monash Medical Centre in Melbourne but unfortunately we found out last night that he is away till the end of October, we can't wait that long. There are 3 doctors looking after his patients while he's away so we plan to get an appointment with one of them ASAP. Bron has been really supportive & it has just helped to be able to talk to her & get some more information about things. In Melbourne they also do MRI scans which are more accurate than just the MIBG & CT - there's another question for the doc!
I also question the way his treatment was given. By having surgery upfront he had SO MANY complications & was in SO MUCH pain & his treatment was continually delayed for various reasons. Nothing can be done about that now & who's to say that the result would be different but to think about that now makes me REALLY angry. I wish we had of just done the chemo first & gone from there. I won't dwell on that but I needed to get it out!
We saw our GP yesterday & even he was going to recommend Melbourne before we got to suggest it. Tyler's doctor had called him last week to advise that Tyler was 'a hopeless case'. We need to get to Melbourne because we need to see someone who hasn't already made up their mind that our son is going to die.
Our Canberra social worker Sarah has been fantastic & was making calls to Monash today for us in regards to Ronald McDonald House & getting support there etc. It's so good to have her across the case because she just acts on things without us asking & we really need someone like that at the moment.
Today we had a surprise delivery of approx 4 tonnes of firewood from Terry's dad & his boss at Canberra Landscape Supplies. We were almost to the end of the last pile so that was great timing & REALLY appreciated. Thank you so much.
Basically we're just trying to get on with things the best that we can. I find that the only way I can cope is to try to push everything to the back of my mind & not let myself think about it. We do need to remember that Tyler is still here with us, that he looks fantastic & is extremely happy. We need to enjoy every minute of that. It's just not always that easy to do that if we allow ourselves to think of the future & what may or may not happen. I'm scared, really scared & I feel SO helpless but I'm still holding onto hope & I always will until the day it is ever taken away from me. We will always try to remain positive & keep searching for things that may help. Who knows, maybe the radiologist will see things differently to the doctor, maybe they are wrong about it all? We will know more tomorrow.
Today we had heaps & heaps of rain & today Tyler was out playing in it with his dad. He enjoyed jumping in the puddles & 'just being in the rain'! We even had a little creek running down the block!
Thank you so much to everyone who are sending their love, prayers & support, please continue as it really means a lot to us & it does bring us comfort.
Thursday 28th June 2007 - Yesterday was a very long, stressful, exhausting day getting to Sydney & back but we eventually got home around 9pm. I've found that I'm really emotionally drained today & am not coping too well with everything. It's REALLY scary being in this situation of having something so important so out of your hands. I'm being a bit slack & just adding an email I've sent today as my update of the meeting. I found that I've had to re-write the update in various emails to different people or updated people on the phone & am just not up to explaining it all again so here's a brief update:
The meeting went ok. They still seemed pretty convinced that he has relapsed but now it's more a case of 'we're very worried'. His doctor went over everything pretty well & we did get a clear understanding of what he was saying - basically if it is a relapse there is no effective treatment that will 'cure' him. There are trials etc but a lot of hospital time, sickness, etc involved. The best treatment they could offer him would be to try to 'control' the disease & give him better quality of life - in the end it would eventually take his life. There is a small possibility that what is showing up 'could be' scar tissue or mature neuroblastoma but he didn't want me to feel that was the definite situation & reinforced that it was 'a very small possibility'. That's enough for me & is better than no possibility at all. They advise to wait 8 weeks (we're a little anxious about that), enjoy life with Tyler & then re-scan (booked in for 21st, 22nd, 23rd Aug). Also, to get him back onto the Retinoic Acid that we took him off last week. If the scans have changed then they are right, if they haven't that will be fantastic & it may be just dormant tissue.
The radiologist called us today & just went over a few things again. She said she can see why they are concerned but said it is only early days post radiation & strange things have been known to show up in the past & not necessarily mean anything. She really feels that it is best to sit & wait & does believe that there is evidence to show that Retinoic Acid matures NB cells & that he should go back on it. She's much more optimistic & I know she can't promise anything or that she could be wrong but I much prefer her opinion!!
We did raise the issue that we wanted to go to Melbourne & yes the doc was more than happy for that & will forward some info to our GP & paediatrician. I had pretty much made up my mind before the meeting that I wanted to be in Melbourne ASAP but now feel that there wouldn't be much point at this stage. The Doctor said the only way to really confirm or rule out a relapse would be surgery & that wouldn't be in Tyler's best interests & could cause problems etc. We are waiting on Urine test results which we should have back next week. If they are still negative (which they were 5 weeks ago) I will be even more hopeful & will try to enjoy every minute of the next 8 weeks, if they're positive then we're in trouble & I may be back onto the Melbourne idea. They are aiming to take the central line out ASAP which will make things so much better for Tyler & less hassle for us (Terry wants to be able to shower with him, take him swimming etc).
So that's where we're at. The whole 8 week thing is still bugging us a little so we may contact them again to see if there's any particular reason why they don't want to re-check in 4. I'm really struggling with everything right at the moment & guess I just need to try not to think about it till we know a bit more. The urine just HAS to be negative & although it won't rule out a relapse it will just allow us to breathe a little easier for a little while.
We're off to Muswellbrook for a 'Thomas the Tank' 2nd birthday party (one of Tyler's cousins) - Jack) which I know Tyler love & it'll be great for him to catch up with his other cousins. From the 9th - 16th July we'll be at Forster in one of the Ronald McDonald holiday houses which again will be great - more fishing for the boy & his dad!! Ash loves it too & I just have to try not to get upset if they catch more fish for dinner (I'm a real sook!). The main thing is that Tyler will have such a good time & that will make it hard for the rest of us not to!
Still hoping for a miracle!
