Back at home!

On our last weekend at PMH we found this cupboard which is the only one you can get into and when we opened it there was nothing there. Thank goodness all the kids have got DS's, Ipods and Ipads to keep them busy as this cupboard certainly wouldn't!!

Thursday night catching up on my tv programmes, listening to everyone moaning about the heat, and just enjoying being at home.
Harry has been to school all week, but is looking particularly tired at the moment. He had physio on Monday and Wednesday we both went to the naturopath who told us we were both intolerant to wheat amongst other things. She gave him some vitamins but he is doing pretty well all things considered.

Played golf yesterday which made a nice change, and today Abi and I went to Redkite as they are holding a fashion show on March 24th to raise money for children with cancer, and they have asked me to be their main model!!!! OK so I am joking, but they asked me to talk for a few minutes about Harrys Journey.

Next week harry is inviting some of his friends over for a surprise, which I can only tell you about after as we are not telling the kids what it is for, but I am pretty sure they are going to love it and it is thanks to the PMH Foundation.
The Make A Wish Foundation came round today to talk to Harry and discuss his wish, and now the wheels are in motion. So if we go to Japan in January, we might need to borrow some cold weather gear if anyone has any that will fit!!
We have some tests next week and then more tests the week after and then the results on 16th March, and hopefully then it will be champagne all round.
Have a great weekend and don't moan about the weather it will be winter soon! xx

Home at last

Friday night turned out to be an eventful one. Harry had been moaning a bit in the day that the drip in his hand was hurting. The nurse repadded it, and he seemed ok with it. So he went to sleep and we thought nothing more of it. Then the night staff came on and Claire told us the drip was going to have to come out as it had tissued. So by now it is gone midnight and we have to do the emla cream on a few different spots so that we can put a new drip in. Harrys temp is now 39.8 and he is actually not looking too great and complaining of a headache.
The emergency doctor came down to put the canular in (if that is how it is spelt) but got called away so we had to carry on waiting. He returned at 2.30 so the emla has been on 2 and a half hours and we can't find a vein now. He tried the back of harrys hand but that didn't work, so we had to get up and go in the treatment room as there was more light. Then he tried the elbow of the right arm, and after lots of prodding and poking it went in, or so we thought. He couldn't take blood from here, so we should have known that something wasn't right and he had to put more emla on and he came back another hour later to take blood out of his hand. It is now 4.30 and we tried to wake harry but with no luck, however he woke up when the needle went in.

The next day Harry was complaining that this drip was hurting. The antibiotics had gone in for an hour and we said could he wait till they finished? They had a tape round his arm which looked tight so we cut that off and then left it a bit, but he still complained that it hurt. Jo - one of the nurses came over - and asked Harry what his pain score was. Harry said about a 7, and Jo looked at his arm and immediately said 'this drip needs to come out?' Again it had tissued and the antibiotics were just filling up in his arm and going nowhere. She then explained to Harry that some people have a high threshold of pain and go on about it being a good thing, and that Harry really does have a high threshold. She said that most children would have been screaming to get the drip out, and when they finally took it out, the antibiotics just poured out of his arm for the next half an hour or so.

They then decided to move him out of the room as he had started to have a bit of a cough and a sniffle and we got put into isolation. They did another 'snot test', where they put a tube up your nose and suck down what is up there. It took a while as there didn't seem much there, but it came back with a positive result and Harry has the flu! His temp was down by now and they said that we could go home if it stayed down. So it did, until 6pm when it was back up to 38.4. We had a chat with the doctor and as all the cultures were showing nothing apart from the flu there was nothing they could for him. He looked so well, that they decided that we could go home and if it goes high, as in 39 and over we call to see what they want us to do. If he starts to look unwell we also call, but for now we are home.

So hopefully that is the end of our hospital stays. This week we will be at home apart from for physio appts and all the other appts we have. Then next week we have the start of the scans and hearing and heart tests. Then on the 16th March we have the review.

Fingers crossed for all of that and for now we have to concentrate on that walking as we need Harry to be up and about for Club Med Bali.

Have a great week everyone, and please add a commment. We will be going to print soon, so if you want to be remembered in Harrys Journey write something for him to keep. xx

Another Friday Afternoon Bingo Win

Well who would have thought when we left here on Monday that we would be here again so soon and for this long. Harry finally had his port removed on Tuesday evening. He went up to theatre at 7.30, and at 8.50 was being brought back down to Ward 3b. He felt fine and wasn't sick at all which was great, but in the meantime his temperature keeps spiking.

Thursday we managed to get some day release to go to the funeral for Elliot Parish. We went to St Marys Cathedral which was a beautiful place and as funerals go it was wonderful. Emily and Rick both spoke, which was the part that really made me cry. They both did so well. Rick said about a night when he was in PMH with Elliot and Elliot looked at him when they were lying in bed together and said, 'are you thinking what I am thinking?' Rick replied, 'I am not sure, it depends on what you are thinking?' To which Elliot replied 'lets get out of this place!' How many children on this ward have felt that exact feeling and probably said those same words.

After the funeral we had to come back to hospital as Harry needed more antibiotics and then he spiked another temp. So more antibiotics and then we got day release and went to the Wake. Didn't get there till late as the traffic was terrible and we weren't allowed out till nearly 4pm, but we managed to get there and have a drink or a few with everyone.
Stacey kindly dropped us home as Darren had to go and get Ellie as she was with Nanny and Kong Kong. Anyway it was a beautiful day and I am sure that Elliot would have been proud of his parents and his brothers when he looked down on them.

We got back to hospital and again another temperature spike, well I am not really sure if you call this a spike as it hasn't really gone down. Friday morning the doctors came around and said if his temperature stayed down then we could go home. They checked his temp which looked good on the one thermometer but on the other one it was a degree higher and put his temp over the limit. So we are here for another night. I haven't seen Ellie for a couple of days, but she went to her Italian friends house tonight so will have had a good time.

Anyway Room 7 is still full and I am sure will be very noisy tonight, so might have to sleep in the day room.

The excitement for the day was again was that Room 7 won Friday afternoon bingo. Wonder when they will twig what goes on?!?

Fingers crossed that we can get home tomorrow.

Just when you thought it was safe to unpack!

We got home Monday morning and after getting no sleep for 3 nights I was finding it hard to even function on Monday. Had a redbull about 3pm and still managed to fall asleep putting Ellie to bed at 8pm.

Harry went to school and did his first PEAC on Tuesday, which he really enjoyed. Then he want back to school for the afternoon and then Ellie had dancing. Had a swim when we got home as it was so warm. Showered and came in for dinner and it was still really hot so I put the air-con on and Harry said 'can you turn that off it is freezing?' Oh no, 38 degrees and he is cold! So checked his temp and it is 38.2! Oh dear, check it in another hour and it is still up. I really thought I was never going to have to pack that bag again.

Wednesday 16th February So we are now here again. They have decided to remove Harrys port. I thought it was an option so told Harry not to eat this morning and wait till the doctors had come round. They decided to ring and see if the port could be removed and booked him for tomorrow. So before we let him eat we made sure that they were 100% sure it was not going to be today and then harry had a few crackers to eat. Not half an hour later they came down and said it was going to be today!! So now we have to wait till 5.30 and Harry can't eat again.

Picked up Ellie from school and forgot it was early pick up. Luckily Linda reminded me, and got there just 10 minutes late. Bumped into Karen, Grace and Nicholas who said 'well done on getting through the treatment.' You can tell those who have walked in these footsteps before, as they understand where you are at the various stages!!

Looks like someone has just come down and we could be going shortly. Not sure when we will be out tomorrow, but hoping that we will be able to get some day leave for Harry to go to Elliots funeral. Love and hugs to Rick, Emily and boys.xx

Ciao for now,

Vic

Should be our last night at PMH

Angela and Ellie


Harry, Bec, Ramina, Vicky



Harry and Sean


Harry and Eli



Harry, Maddie and Charlotte



Harry and Lochie



Well this should be our last night. Harry is our for the count and has been since about 8pm. He had a good day and Darren came in with Harrys friend from home Sean, which was nice for him. They went for a play in mega zone and we also bumped into Bianca, and Eli.

After this I took Sean home and then Ellie and I popped into the house and did a couple of jobs and then came back to hospital. Ellie isn't feeling too well at the moment. She is complaining of a sore throat which I think is what Harry had just over a week ago. Anyway will see how she goes tomorrow. We should be out in the morning but still don't even have the Methotrexate level back yet.

Darren did a really nice dinner of Spaghetti Marinara and then he took Ellie home. Nanny and Kong Kong didn't pop in today as they had a fundraiser on at the golf club for the Flood Appeal and raised $50k today, which is fantastic.

It is a weird feeling that this could be our last 'sleepover', and despite the fact that we never wanted to be here, we have made some good friends here that we have shared a lot with. Harry said yesterday that he will miss staying here with his friends. The nurses have been great and we will miss them as well, although not sure if they will miss the hourly wees!! There are too many to mention, and I will no doubt forget one if I try to.... but you have made our stay on PMH far more bearable. I look forward to a few of you joining the next sky dive when it is arranged!!

Talking of wees as some of you may know when the kids wee it all has to be weighed and tested. So every hour out comes the pee bottle. We then write the name, time and I also write the weight as then I know how often to wake him. Friday night was a nightmare with lots and lots of wees. The nurses were really busy and I set my alarm clock to wake at 1.30, but put PM instead of AM, so was late waking. Then the other boy in the room screamed out every time he needed to go which was every hour, so by 4am I felt like I hadn't slept. The nurse told me saturday night that I had put the wee bottle in the pan room and written 4.05 am, 247 mls, 'Vic!' Whoops must have been tired!!

We are home till March 3rd, and then we have various tests and the review. That will be the longest time we have spent at home since September. His port will also have to be removed but this is only day procedure.

I will keep you all updated as to how things are progressing, and hopefully we will be able to get back to normal - well as normal as it ever is for me - life soon. Harry has PEAC on Tuesday and hopefully he will enjoy going back to school and being with his year group.

Night for now, Vic

Final chemo is done!

Well the final chemo has been done and now we have to hydrate until his methotrexate level has dropped to below 0.1 before he is allowed to go home. We are spending our final weekend in Room 7 and Lochie is here to join us, which will keep them both amused.

Maddie is also in hospital and so is Angela, but they are in seperate rooms. We all had pizza for dinner tonight which we got from Leederville and was really nice. Only problem was that Harry then started to feel sick and was!! That was probably my fault as I popped over to the Foundation today and was saying to Kellie that I can't remember the last time that Harry was sick! Well I can now.

After walking without the crutch the other day, harry has been back in the wheel chair again. I spoke to the physio and we think that because he has been off the foot for so long that he needs to build things up really slowly. He seems to do no walking and then does lots of walking and then we strain the foot again. I have said that he needs to do bits of walking whilst he is in the hospital but I am sure that it will just be one big battle.

Harry put his application in this week for 'Make a Wish'. He gets to go overseas as he is 10 and has asked to go to Japan. They are granted their wish if their condition is life threatening and this has to be agreed by his doctor. We got a phone call today and they said that he has been accepted onto the wish programme, and we now have to go through the other 6 stages of the process. These are to do with meeting the people who work at make a wish and talk to them about why he would like to go to Japan. Then it is down to arranging when he wants to go etc. So we had better do some research on the weather etc. and when is a good time to go.

I was packing the bags this morning and thinking, how we will hopefully never have to come in here for chemo again or spend another night in the hospital. Harry has done so well on his treatment and managed to carry on with school wherever possible. We have to do a CT scan, bone scan, GFR (kidney test), Echo and audiology test over the next few weeks and then we will meet with Harrys oncologist to see how things are looking. We have done the treatment part, but the scary thing is that he has to have scans and tests for the next 5 years. Once you get to the five year stage then you can breathe a sigh of relief as you should be all clear. The other thing when we started treatment and they were telling us about all the possible things that can happen, and Harry was insistent then that there was no way he was going to have a NGT (nasal gastric tube) for feeding, and he has got through chemo without needing one. Another reason he takes after me, loves his food!!

On a very sad note Elliot Parish passed away in the early hours of Thursday morning. He was only 4 years old and had been treated for a brain tumour and spinal cancer since October 2009. His father Rick Parish, climed Mont Blanc with a team of 19 other climbers to raise money for a 3D mollecular imaging machine, and raised a total of $920,000. This huge effort has paid for the machine and towards items on the ward that we need. Rick is an inspiration to so many people, and through all the heartache and suffering he has still managed to raise such awareness for childrens cancer - that it is positively amazing. Ricks wife, Em, is someone that I am pleased to have met through all this tragedy. She is a lovely lady, and a great mother. I remember chatting to her at the Fathers day lunch at Freshwater Bay when Elliot had been given the all clear for that time before his cancer returned. We laughed about when you catch up with friends, and you say to them, 'how are you?' and they tell you about their child being off school for a day or two with gastro and how their week was disrupted. Sometimes you have to walk away, because all you really want to say "is give me gastro any day of the week."

Elliots funeral is on Thursday and I will go along with many others to say our goodbyes to Elliot and pay our respects to the family. Rick continues to lead the Telethon Adventurers and is now more determined than ever to raise money to try and help find a cure for childhood cancer. Making a difference... one step at a time.

Have a great weekend, and remember to squeeze those you love so tight, as you never know when you will have to let them go. xxxxxx

Walking without the crutch!

See 'no wheelchair or crutch'



Fun in the pool with the new kayak



Wednesday already and Harry has done 3 days of school and is loving being back and having a bit of normal life. Monday afternoon was swimming for Ellie and then yesterday she had dance. As soon as we picked her up from school, we started with the 'can I just miss todays dancing?' In the end she went and enjoyed it but it was a struggle. Nanny Pat and Aunty Phil came along to watch her and then when we got home Harry and Ellie went in the pool.
As we haven't managed to get the kayak to the river the kids wanted to put it in the pool and give it a go.
After going down the river the other day we decided a kayak would be a good thing to get as it is great for Harrys arm and is something he can do and get involved with the kids. With being in the wheel chair he has spent so much time hanging around the adults that it will be great when he can join in again and have some 'child' fun. Anyway we spoke to our friendly Finn Kayak sales rep and with some help from Finn Kayaks we now have a beautiful green kayak for Harry and Ellie to use down the river - or in the pool whichever they prefer.
I have spent the last couple of days catching up on work and trying to get everything in order as it has been a while since I have had a few days without children at home. I also rang up CBC to see when I had to put Harrys enrolment form in and found out the answer was 'now!' She explained about sending in reports and Naplan results from Year 3, so I had to explain that Harry hadn't done much school since the middle of last year and she asked if he went to school at PMH. Well what could I say? Yes but really how is working out the number of skittles left standing going to help him at year 5 level? Also doing art on a Wednesday, this should be something that they set up for the kids in the afternoon not as their full school activity for the morning. Anyway another job to be done tomorrow and whilst I am doing that I should really get Ellies name down at a school or two!!
Today Ellie had Emma and Anna over for a play and Deb popped in with Jack and Sienna for a quick swim. I have now banned Harry from using the chair in the house so that he can use the crutch more as it would be great if he was walking normally when we go to Bali and there is no reason why he shouldn't be. Anyway when he got home from school I was doing some afternoon tea and then realised Harry was actually walking around without the crutch. It was so great to see him and just hope he continues to improve over the next few weeks.
Elliot is still fighting the fight, and candles are burning all over the world for him. I can't imagine the pain and suffering that the Parish family are going through as I cry every time I think about them, or read a comment on facebook. Thoughts are with you all xxxxxxxxxxxx

Harrys first day back at school for 2011

Can't say the kids look enthralled!




The photos are of Harry, Lochie and Ruby at school. They were knocking down skittles and working out how many were left standing. Seriously why am I surprised that Harry doesn't want to go to school?!?

Harrys methotrexate level came back last night and he was .08. First time and after 10 treatments, Harry did it in 48 hours. The unfortunate thing is that I had to wake him up as he had fallen asleep, but we got home and unpacked and both Harry and Ellie went off to school. It seems like ages since they were both at school and it probably has been, so I spent the day catching up on work. Harry was pleased to be back, and Ellie was very excited to take the cards she had made to the teachers.

Aunty Sarah popped in and picked the kids up this afternoon from school with me, and then I took them off to swimming. I thought Harry was going to moan as he would have been tired but he was quite happy to come along.

So we are now home till Friday and then we go back for our last chemo. Although I am very excited about this, I am also terrified. At least whilst he is on treatment you know that they are doing something. Harry has coped so well with the treatment that I just hope it has done what it is meant to. I know that there are lots of things he will have to adapt to, and I hope that his strength and courage that he has shown so far will help him cope.

Both Harry and Ellie lit candles tonight for Elliot and have a candle burning in their rooms. It just seems so wrong that at such a young age they are having to take on such real life situations. Actually the fact that any child or family has to go through this is just WRONG. Rick, Em, Harry, Hudson and Elliot you are all in our thoughts. xx

Superman has returned - more determined than ever!

As you know chemo started on Friday, and last night they had their first methotrexate level done which was .78. I was convinced that the person who had input the information had got it wrong and missed off the one as normally the first level is 1.7, but no, they did a level this morning which was .16 so we could be out of here tonight.
I was expecting that it could possibly take longer as he hadn't been well last week but no, his determination has shone through. I know you shouldn't count your chickens before they hatch but fingers crossed.
Darren has stayed in the hospital the last two evenings, which was really weird as I have never not been here when chemo started. Friday night was a bit difficult as normally I wake Harry every hour to go to the loo as they are pumping so much fluid through his body, and then when I go to bed the nurse wakes him. There was a nurse on that doesn't normally look after Harry and the waking didn't happen. Oh well, it was only once and all survived it, so that is the main thing. I am glad that we have had most of our treatment during the week as it is far easier with Ellie and generally doing things. If Darren goes to work and is out and about he can pop in but it all seems a bit different on the weekend. There is also no-one in here which is really weird.
Anyway I managed to get a bit of shopping done and all the ironing (which was quite a bit as we hadn't done any since the beginning of January - or was it before then) - well all the ironing except three pairs of darrens shorts with all those pockets.
So one more chemo to go and this will be on Friday. Possibly three more sleepovers to go and then all his tests and then his review.
As we had a few days delay we cancelled the tests in February and now we are booked for March, so a bit longer but at least we know chemo will be over.
Our thoughts are continually with the Parish family at this sad time and candles are being lit on a regular basis.

Little Elliot Parish was put on a morphine pump today and will earn his Angel Wings far too soon. Please light a candle for him and send him freedom, light, love, peace and no more pain. Please also keep his beautiful family in your thoughts and prayers. "Life is a Gift".

Elliot is the son of Emily and Rick Parish and brother to Harry and Hudson who we have met on our 3B Journey. Our hearts go out to them all at this terrible time, and I hope that Elliot will soon be free of pain and free from this hideous disease. Rick - as the leader of the Telethon Adventurers has done so much to raise money to help find a cure for this disease, and still he has to watch cancer take his son. How can this be fair.

To the Parish family - you are all in our thoughts and prayers and candles will be burning bright all over the world.

Home or chemo, that is the question??

First Blood Transfusion



Ellies first day of school



Harrys temperature finally came down on Wednesday afternoon, but his blood cultures came back with an infection in his line. So Harry is now on antibiotics, which he apparently has to have for a couple of weeks. Although I am hoping that someone comes out to the house as I don't want to sit here for 2 weeks.

If however his blood results are coming up then we might even start chemo. The other option is that if there really is an infection in his line then they might remove it and do the chemo through a 'pic' line as he only has 2 more.

Harry ended up having his first chemo related blood transfusion (he had one during surgery) on Wednesday as his haemoglobin was low, and now his levels are all good.

I have slept in the Ronald McDonald room for the last two nights as Harry hasn't been on hyper hydration so hasn't had to wee every hour, which has been great as I have managed to get some sleep. The first time I have slept there in 8 months.

Update
Bloods are back and Harry is good to go with chemo, which means he will be in here till Monday. They are looking at moving him out of the isolation room, even though he isn't in isolation officially, which he was excited about until he realised that all the kids in room 7 are going home and he could still end up being on his own.

They have all been in school this morning. Harry wasn't going, but Ruby (who is the same age as Ellie) came to the door this morning and asked if he was coming to school. So bless him off he went. Harry, Declan, Ruby, and Lochie, don't think I have ever seen school that full.

Just packing up so we can move room, and so excited as the end is again in sight!!

Now we have a temp!

Well we didn't make chemo yesterday and unfortunately Harry has now got a temp and a really sore throat so we are back in hospital. He slept ok through the night, but woke up with a really sore throat. He had lots of ice cubes and a salt water gargle and then did mouthcare, but by about 10am his temp was at 38.4. So we decided to get showered and dressed and then took his temp again at 10.30, when it was still 38.4.
Started packing the car and at 11, we took it one more time and it was 38.2.

So we rang ahead to PMH and said we were on our way in. This time when we got in his temperature wasn't down and has actually just been tested and is sitting at 38.5.
They have started Harry on antibiotics and regular blood tests. His neutrophils were .11 today - which is what I thought they were yesterday but apparently they were .12 yesterday so they have decreased by .01.

The weird thing is that children being re-admitted for temperatures is really normal, but just not normal for Harry. Dr Michaela saw me earlier and said, "is this only his second temperature since he started chemo?" She told them to get through his protocol with only 2 temperatures is very impressive. He has also managed not to have a feeding tube and has only had a blood transfusion when he had his operation. I am not that surprised that he is not well at the moment as he usually has a 2 week plus gap between adria and methotrexate but the last 2 rounds have only had a one week plus gap. Dr Michaela then told me that in the UK the protocol would have a 2 week plus gap as even though they have dropped cisplatin the adria still really knocks your counts. So really if he was in the UK we would have another week and therefore he might not have had a delay at all, so pleased to say I can go back to thinking he is superman. Yes he has a temperature, but I think Ellie has had about 3 since Harry started chemo and she hasn't been poisoned.

On another note, Harry has got Mrs Teede for Year 5 and Ellie is with Mrs Gibbs. I am really pleased Harry is with Mrs Teede as at least she knows what he has gone through, and also means he is in the straight class. I have absolutely no problems with a split class but think socially it wouldn't have been good for Harry this year, having missed so much school last year and also being in the split class. I am also really pleased that the year 6's got a straight class as there are a few of them who I wouldn't want to be in a class with again. Don't get me wrong there are a lot of nice mum's in there, but a few that really need a good reality check.

So tomorrow morning little Miss Ellie is starting year one. Wow my baby is now a big girl. Kong Kong is going to be at the hospital at about 7.30 so I can get back and take her to school with Darren. Suppose that means I should get some sleep as other wise I will still be in bed (well on a mattress on the floor) and Dad will be here!

You gotta love PMH, we currently have one tv remote which is being passed around the wards so the kids can change the channels and turn the volume up and down. Why would people steal a remote, I can understand if you took it by mistake but really you should return it.

Night all, and please pray for neutrophils so Harry can fight off this sore throat. xx