Well here we are at the end of day two of radiotherapy and right now the prospect of being two sessions in, with 29 to go, is very daunting.
We arrived yesterday at 0730 to be met by Jignesh, Joshua's radiotherapist buddy, who was waiting with
the popular 'winged spiderman' toy. He then told us that he had another surprise for us and led us around the corner to 'MV1' Joshua's radiotherapy room. Outside was this wall, which is decorated in a display dedicated to Joshua.
The big spiderman poster
is laminated on the wall, with Joshuas name above it. He has posters all around it with a number for each treatment. Each day Jignesh and Joshua put a sticker over the number, so two stickers so far.
I can't thank Jignesh enough, he plays with
Joshua, laughs at Joshuas "poo" jokes, blows bubbles with him and makes him laugh. Yesterday we were late starting, they had to wait for blood results and we were in the department for nearly two hours, before getting underway. Jignesh solidly entertained
a frightened little four year old boy, for all that time. He's a legend.
So we have commenced treatment, but he's not well. Yesterday he came back with blotchy red eyes and was 'irritated'. A hour later he complained of headaches, just like the ones
he got when he was first sick, it was scary. I gave him brufen, called radiotherapy, Libby called the Dr, who said take him to Starship. Took him to Clinic, but they wern't concerned. He did improve over the next few hours.
Today, afterward, he did
have a small headache, but he's nauseated and vommitting. He has held his dinner down, but is clammy and hanging on to a bowl. We went to clinic again this afternoon and Dr Josh has put him on a host of anti-puke drugs, but he's not too flash right now.
We were visited today by our mate Dion, he waited patiently for us, which I really appreciated, he's just such a neat guy! unfortunately, Joshua didn't get much out of his visit, due to a big chunder, but Dion takes it in his stride, he's been there
many times before.
Well, more cancer killing tommorrow.....
Day three of the radio down and we had a visit to Clinic this afternoon. For the first time since this journey began we were given favorable news. Last week Joshua had
a lumbar puncture to see if the tumor has spread microscopically through his brain and spinal cord and it hasn't. So it raises our odds a little more, probably to about 70% which is good considering the anaplasic tumour.
Other than that, it's been a
pretty average day... headaches, nausea, lack of appetite, but no vommitting at least. He has lost 0.5 kg of the weight that he had put on in less than a week, so i'm not optimistic about the nasogastric staying out, but as Stephen our consultant said today,
very few kids of Joshuas age get by without it. But spirit wise he's good, had to be growled to sleep tonight, He just loves playing with his brother! He spent the morning making little presents for Daniel, which is what he used to do at Kindy, it was
But hey! we are killing that tumour and I still beleive with my heart and soul that we are going to win this. We met another family today that are back in Ward 26a with a reoccurance of a different type of tumor... But past there, by the
grace of god go we.
Hi there team, sorry about the four day absence, its been a case of no news is good news!Joshua is getting more and more back to his
usual delightful self. He is walking totally on his own, sometimes even trotting along the corridors of the house. His nausea is under control, as long as I give his odansteron three times a day. I did have concerns about the headaches he was having but
they have dissapeared and over the weekend even his 'tetchiness' showed a dramatic decrease.
Saturday night bought a wonderful sign... The return of the Spiderman Costume. Joshua got this for his birthday, a month before he got sick. (Well he was sick,
we just didn't know it.) He lived in this thing, wore it night and day, had been asking for one for a few months before his birthday. So you can imagine how precious it is.
He was wearing it the morning he was diagnosed, and hasn't worn it since. I've
asked him several times if he wanted too in desperation to see my gorgeous boy back again, but was refused.
But he's back in full flight, Spiderman back on, even slept in it last night. He wanted to wear it to see Jignesh this morning, but couldnt as
it was a bit weeish. We had a minor 'toodoo' over that, I'm so happy. Back to arguing over cleaning his teeth again, just like we should be!
Another two days down, we have now marked 8 of our 31 treatments off, another two to go this
week. Once we get to the end of next week I'll relax a little more because they start scaling the dosage back a little, but we are continuing to hold our own though. Today was a little rougher than yesterday, we had a bit more 'tetchiness' he was quite tired
and out of sorts, but not wanting to sleep either.
Something that has dominated my thoughts a lot is the NZ woman in the UK who has been on the run with her son. He has a brain tumor that has been removed and she's been running from the police because
she didn't want him to have radiotherapy. I can understand, apparently she was told by a Dr 'they were going to fry her sons brain'. Lovely heart warming stuff I thought. She wants him treated by natural means, but I have to wonder who's right. I think its
great to have freedom of choice, but as a parent we are responsible for the choices we make for our children. He might die either way, he might live one way and not the other, he might live a better life with the natural treatment. But who can answer, for
me I had near on 20 years in the medical proffession, I put my faith in what I know. There are many who dont want a bar of it, it's like immunisation, I beleive in 'herd' protection. Someone said to me the other day Joshuas tumor might have been caused by
imms. (Not a doctor), yes, by some minute percentage it might have been, but it wouldnt stop me from immunising my kids, not without substantial evidence anyway.
So who's right, the UK mother, or the medical profession. If the child was over 16, I'd
say, let him choose. But as a 7 year old, I'd like to think that the proven track would prevail. With this really tough road that we are on, I often think forwards, I have conversations in my head with Adult Joshua, because thats who we are here for at the
end of the day. Baby Joshua has gone, toddler Joshua is gone, Child Joshua is having a hell of a time, but we are here for the future him.
has headed home again today to move us into the new 'old' house (1911 it was built). I am back to 'solo mumdom' for a week so readjusting my routine to fit. Susanne and I are in charge again.
Joshuas weight has stayed stable, he's eating well, his blood
counts are down, so we are avoiding 'crowds' and being extra vigilant with our hand washing, each day its day by day, one treatment after the next."
Today we had the Starship
Christmas party. I was playing it by ear to see how it would go, but he was keen and we went out specially to get Georgie a 'fairy frock' and we went. Joshua was dressed in his spidey suit, Daniel was dressed as 'bat-spiderman' and Georgie as a 'princess'
and boy, were they the life of the party. They had their photos taken with 'kidzone' and the duo from 'the tiki tour bus'. I met Rosie Horton, the fundraising sponsor and chatted to Gordon Harcourt from Fairgo for about ten minutes. But for us, it was seeing
Andrew Law, our surgeon and telling him that Joshua is walking and running, that was the real buzz for me.
What blew me away, was telling people that Joshua had a brain tumour and seeing the shock on their faces. Theyu were floored by this little boy
charging around as large as life. He was the celebrity for the day, my little superstar!
What a weekend!!!
We were informed at 3pm on Friday afternoon,
that another family that we were in close contact with, has come down with chicken pox. It meant that we had to be off sited. So now we have moved into the Waldorf Apartments, where we are going to be until the 30th when we are cleared. So I have an unwell
nutripenic child living in a Hotel, the worry of him getting chickenpox and I had to move two months of gear and to try and find storage for it in a tiny hotel room. I will kiss the floor of grafton when we return, its absolutely become home for us, we feel
safe there, because they keep it so clean, we know everybody and our room was so well set up.
But the biggest thing is there risk, at Grafton we are there with a handful of other families, all who are there because they have ill children. In a Hotel
with 18 floors we are there with hundreds of other people who all are a potential risk to Joshua with his low immunity. On top of this I have the added worry of possible chickenpox. What a bloody nuisance! I think back to the couple of times I'd take them
to a friends house who had the pox, to try and get it over with, now I wish i'd just gone and immunised against it.
So this morning has been a bit chaotic and I've been a bit tearful. Joshua pulled a bit of hair out yesterday afternoon and today in
radiotherapy his pillowcase was covered in hair. I thought I had prepared myself for it, I knew it was coming, but I'm still overwhelmed. I said to Mike on the phone today, I want him to buy me a locket for Christmas that I can put a lock of his hair in. His
eyes are also starting to sink in and get black rings, not normal black rings, cancer treatment black rings. They make you look like your dying.
The good news is that his blood counts have improved today, so they will go back to treating his spine again
tommorrow. They have just been doing his brain the last week. So, I arrived this morning with the big question, 'what if he gets chickenpox?' Libby one of our lovely nurses came to the rescue and liased with the clinic and infection control. Thanks to her,
Joshua is now on treatment just in case. We had a long chat this morning, shes also a mother of three of similar ages. She always asks me how I'm doing, today she told me she thought I was amazing with how I'm doing. I told her that i'm ok when things
are going ok, but anything out of the ordinary throws me. Like having to move house into a Hotel.
Here we are team, into mid-week week three. We hav e hopefully
three and half more weeks to go, and then we will get to go home for a month. Today I had my first conversation with Stephen laughton, our fabulous oncologist about chemotherapy. Joshua will be on four drugs, given over a three day period, one week on,
three weeks off, for four months. I beleive as Joshua has a 'high risk' medulloblastoma, that it is short and bloody sharp. We are in full time, for the first month.
But right now, I long for home. My friend Tania and another family friend Irene,
worked tirelessly for days moving us into our new '101' year old house. (She'll be 102 shortly, still new!) Tania sent me photos today of my bedroom and the custom made wardrobe that has been made for the house. She has lined the drawers with scented paper,
placed everything beautifully. Thankyou Tania! I cant wait to see it in the flesh. Tania and Irene packed up a house that hadn't been vetted or sorted, they may have well found crusty undies, or worse! I'm both embarassed and thankful for their fabulousness.
Irene blessed the house, that is something that i'm pleased about.This is the house of healing, of childrens voices, I just want to hear Joshua, scrapping and playing with his siblings in the house of Healing. I want to catch him smoking dope in he garage
we build. I want to have complaints from the neighbours about the noise. I want to tell him off for splashing my windows with his divebombing in the pool we have loosely planned. I want crappy old cars that you can hear from a kilometre away parked in my drive.
I want to catch the boys watching 'porn' in Dads mancave.
But right now, thats just my hope. My reality this week is that yesterday Joshua had the whole department running (Radiotherapy). He woke up badly from anaesthetic and was scratching and biting
and screamed the place down. We have been placed in interdepartmental isolation because of the 'pox'. Its not going down well with the patient. Today Jignesh has a wonderful surprise for us. A four foot tall cardboard 'Batman', He's just awesome. Jignesh,
you are Gods gift to radiotherapy man. We will never, ever forget what you have done for our son.
Joshua is starting to look 'patchy' on his head. Its coming out really fast, I'm amazed. Another Mum told me on Monday that you do get used to
it quickly. She said you look back at 'hair' pictures, and they look funny. It was kind of comforting. I had planned to do the buzz cut, when we got here. But he doesnt want it, I think his scalp is sensitive and tender. So I am just following for now with
It took a total of five days for Joshua to lose 80% of his hair, on the Thursday night of week three we did the big shave, first Daddy,
then our beauitiful Daniel, who said to me at the time, 'Mum, we are going to have it so no one knows who in our family has cancer!' he is so lovely. Over the past three months he's changed. A couple of weeks ago, he said to me; 'Mum, I know Joshua is really
sick, so I'm going to play whatever he wants whenever he wants' and to this date, he has. Even today, we were given two Christmas stockings by Jackie and he gave his to Joshua. Everyday i'm thanking him, telling him he's my superstar and he's just blossoming,
he's my mr responsible, looking after the younger two. Susanne, our Au pair said to me yesterday, that she had never seen two brothers so close. I hope our photo's of the haircut night reflects that, the deep love of two brothers. It's been that way since
Joshua was just a few weeks old, I had them on the bed together and Joshua reached up and brushed Daniels face. I took a photo, he was so little he couldn't even see Daniel, he could just hear him and he responded right from then.
So, we headed into
Christmas with cancer, last Monday. Monday was a really crap day, he woke badly, by the time we got back to the hotel Mike and I were stressed out wrecks, he'd tried to throw himself out of the buggy in the middle of Grafton road and took a full hour to get
under control again. The whole day is 'fragile' from that point, we were still getting ready for Christmas, the upside was that Mum and Dad were here, and I always feel better when they are here.
Monday night after the kids were settled and waiting
for Santa, Mike and I walked down the road and celebrated The birth of Jesus in a 180 year old Anglican Cathedral, which was beautiful. It was there in the candlelight at midnight, that I poured my heart out and my tears. I watched a family in the row in front
of us, Mum and Dad and their adult sons and daughters and I said to Mike, I want to come back here one Christmas, with our three kids, when we are through this and we have a grown Joshua. It was beautiful and painful, our Christmas Eve.
was lovely, Joshua was in fabulous form. The kids had a wonderful day and we lasted at Patricks until 7pm, when I thought we'd be lucky to get a few hours. It was great. Grandad serenaded the boys with the guitar, Georgia and Lani were delightful to watch.
Boxing day was quiet, the kids were exhausted and I spent my day putting all the new sets of lego into see-thru containers.
On Thursday it was back to clinic again to find that he has now dropped to 15.9 kgs, so he's lost 2.8kg. Stephen said
he would hang off putting the tube down for another week, but no longer. I'm doing my best to 'feed him up' but as one of our lovely Nurses, Tracey said to me, you can lead the horse to water..... and that's how it is, I just cant get him to eat or drink
much, he's just got no appetite. So if he doesnt maintain this week, I'll actually be releived to have the tube, as much as I loathe the idea, i'm just so tired of worrying about everything that goes into his mouth.
The highlight of our
week was today, (Sunday) today we moved back to Grafton Mews and rejoined the hospital family. Tommorrow, all three kids get to come to see Jignesh, which they are very excited about. They are planning which toys they want to take to show him, they are
all so excited about going to radiotherapy with Joshua again, even Mike and I miss Jignesh! he's become such an important part of our life!
Roll on week five.
Another week of just three sessions, with 'New Year.'
Its amazing all the goodwill messages we have had, people saying they hope it's a good year for us. Well it's here, we didn't see it arrive. Joshua had a not hot day on Monday and I slept solidly,
that night. Never heard the fireworks even.
For us it's a year in the trenches. Joshua will be starting chemo mid Feb, if it is straight forward, we will be finishing around Mid June (last dose mid May). But because he's on the high risk protocol, it's
short and sharp. If he handles it well, we'll be in for the first five weeks then home for three weeks of each month. But we've heard a lot of stories of it not going well. Our lovely Stephen, told me the other day, sometimes it goes well for the first round,
then falls to shit for the rest. Right now, all we can say is that so far he's done pretty, bloody, well. So long may it continue.
But being the 'beginning' of the year though, as people life goes on. Mikes vowed to get Ab's like Dan Carter for me.
Normally I myself, would be on a diet by today, vowing to lose 20kg. But I just know I'm not capable right now.
My new years resolution is to dress beautifuly every day.
For Christmas, I got three 'Laura Ashley' dresses. Real '50's
housewife' stuff. I tried them on and purred like a cat in the changeroom and i'm telling you, changerooms are a damn scary place when your a size 16! Mike was with me, oohed and ahhed (as all husbands should) at every frock and at the conclusion of the display,
when I stood there telling him how pretty I felt, he said; 'Buy them all love, you deserve it." So I did.
So every day, my intention is to put on something that makes me feel good as opposed to something 'that does the job', 'Comfy' and 'slouchy'
will be limited to weekends. I will aim to wear lippy everyday, although I tend to be a 'lippyloser' wind up with the pink outer line and nothing on the lip and of course i'm never organised enough to have it in my bag. So I look great for
the first hour and then I can see people watching the outer line during conversation, thinking; 'Wheres the rest of it?'. ''In my belly" I mentally reply. "It was on my toast.'
Joshua's new years resolution is to see if he can wear his
truck T-shirt for 365 days straight. Its a year old, just a little baby factory T-shirt that he just loves and adores. Since we've been here, i've done my darndest to get another one, but to no avail. Joshua just wants to wear that shirt everyday, I'ts like
The week has been reasonably uneventful apart from the fact that he's now lost 3 kg. So tommorrow the tube goes down, so I can feed him. I'm resigned to it, I don't want it, but I hate the fact that he's gotten so skinny. He was always 'our
little brick' short and solid. People are now surprised when I say he's only four, they think he's much older. Even the picture of him with Jignesh five weeks ago, it looks like someone else to me. Without his hair people think he's older than four, he
doesn't look like a 'kindy boy' now, he's something else. A Cancer Child I guess.
We are now just finshed session 24, 7 to go, 10 days till we go home for the first time.
Kimmi said the the other day, 'gee it's gone quick'. 'Quickly for you, I say!'. I miss my cat and my Dog, although the dog, as I understand it, is not missing us. Ted sleeps on Nana and Grandads bed with Lily (Nana and Grandads Dog) and the other day
when I spoke to Dad, the Ted, was lying on his feet! but I know the Milliecat will be pleased to come home.
So it's been a rough kind of week, I have turned into the 'Nurse Mum' in radiotherapy, not really sure why. I've been banned from his room until
I get the 'call' to come, I've always had the same routine, he goes to sleep, we go to level three for breaky, I come back around the time i'm usually called, because a couple of times I've had him screaming the place down, because I wasn't there
and they've been ringing frantically. We had the same two recovery nurses for weeks until Christmas and there didn't seem to be any issues, but now there is, so I feel 'uncomfortable'.
To top it off, he got his tube on Friday and pulled it out
in Recovery. The pregnant Recovery Nurse, indicated her belly to me and said 'I wasn't going to wrestle with him.' I was very annoyed, it's her job, to protect him from himself while he's waking up. If she wasn't capable of restraining a four year old, she
shouldn't have been there.
Mike went back to Radiotherapy afterwards and spoke to Ros, one of the radiotherapy Nurses, about it. Ros is fabulously diplomatic, a wonderful communicator, she even got dispensation from her boss for one of us to be
recovery, but I don't want special treatment! as long as everyone does their job, I'm fine, it's only when people don't do their job, that I find it hard to tolerate it. It's bloody hard my position, how do I untangle my two selves? I'm a Nurse to the
bone, from a highly acute background and i'm a Mum to the bottom of my heart and soul. My child comes first and if your not up to the job, don't be there.
So a new tube went down on Monday, they are terrible bloody things. Joshua came
back and he was gagging and coughing, imagine having a big hunk of gunk in the back of your throat that you can't dislodge. We took him out to distract him, and then I had to take him up to clinic in the afternoon, because he had terrible pain, whenever
I fed him through the tube. Slow it down was the advice from the lovely Tracey, which I did and it worked. But then at 5 pm, I came downstairs to find the tube flapping in the breeze, with a sheepish boy holding it in his hand.
So yesterday, it went
down again and he's been told if it comes out again, he'll have to have it put down awake. But he's been really good. Last night was his first overnight feed (till 2am) and I kept reaching over to make sure it wasn't either 'out' or disconected and
flooding the bed. But all was well.
Mike has gone home, he'll be back just a couple of days before we go home. Susanne is off on holiday today for a week and Nana is back. As Mike says, the dynamics change completely when Nana is here (for the
better). Her idolising grandchildren do what they are told, on much more a regular basis. Sure makes my life easier! and Mum is so sensible, I can talk to her very frankly and she is just so positive about it all. And she remembers much better what
has gone before and reminds me of it, and there is always the huge advantage of Intermittent visits, she sees the improvements, much more than I.
So we are on the countdown, I'm more relaxed, he's getting calories and nutrition, his cheeks have
pinked up a lot just in a couple of days. He's having a lot of fun with other kids in the house and just 10 days until our home visit.... yipee! I should also add, that Joshua will be up for visitors at home, his bloodwork is most improved. Just
dont come if you, or anyone around you has been unwell.
This is it, we are on the home stretch. Today was our 28th session, we have three to go. 31 sessions is the most
radiotherapy that they do on any person, so what Joshua has been through has been huge. 31 sessions, 31 general anesthetics. It's really starting to show, he cant hold his feed down at the moment, but we only have three days to go and hopefully it will improve
after that. They've told me the effects will continue for about two weeks, poor guy, that doesnt give him much time to recover before he goes in for chemo.
I'm realising the severity of the number of fractions that he's had, by watching the other kids
come through. We were there a week before them and we are there after all of them. Most seem to have about 12. Only one other girl we've met had 31. Even Joeman, who was an eye tumour only had about four weeks of radio.
But we are so pleased at how
he's done, yes he looks a bit of a wreck, his skin is all peeling on his forehead at the moment, he's as bald as a badger and he has the 'cancery' tone to his skin, and he gets tired now, but hey, we are not complaining. He could have vommited all the way
through, with the anaesthetics alone. His 'moods' have been distressing at times. I cope with it ok when Mike is here, you need two of you to tango with that one. In department, when he wakes badly, Jignesh often magically appears and distracts him whilst
mother watches, thinking thankyou! thankyou! thankyou! until we go home. I'm measuring up how much rope and duct tape I'm going to need at the moment, in order to kidnap Jignesh on Friday. He doesnt know it yet, but he's moving to Rotorua. (great Motorbiking
down there Jigga!).
I'm really looking forward to going home, but I'm nervous too. Home is the 'real world'. I feel like a soldier returning from war. Here, we are in the trenches, at the front line. Three of our our 'families' are having
a terrible time at the moment. Mandy, Glen and Darcy have had a setback, our good friends Clare and Craig have had a major setback with their son Samuel, his bone marrow trnsplant has failed, he only has one more shot at it. Our other friends Kelly
and Tamati, have had their little girl Zoe in ICU three times so far this year. So every time something 'bad' happens to another family, you feel it. It's someone going over the top of the front and taking a bullet. It's not you, today, but the bonds you form
with those people are just so strong, because we are all in the same boat, fighting for the life of one of our children. And those children are so special, Darcy is like an extension of Joshua, everytime I see him, I just want to cuddle him.
So we are going away, can't wait, but I will miss my friends here, miss the other families and I'll miss the staff. Joshua likes Hospital, can you beleive it? he feels safe, he has wonderful people like Jignesh looking after him, his only enemy at the moment
is 'Mum', the person hooking up the feed, giving the medicine, taking the abuse and the punches and the occasional scratch or bite. I get told i'm a 'super x' several times a day ( that's the lowest of the low in our house.) frequently get abused by a little
black four year old cloud! so some room to get away from each other is going to be good!
Thanks for reading, we'll see you at home!