Our beautiful boy is slowly improving, he still has a lot of pain, Amy tried to lower his PCA dose today (the pain pump delivering the morphine) but I asked her to put it up again tonight, he is just needing to many extra boluses. And the problem is
every time you want to give him one, you have to hunt someone down to push the button. That can take time and be frustrating as well.
But things are looking up, there is the much wanted 'wind' at last. This results in high fives! And mummy hunting down
Drs to say, 'He Farted!! Woo hoo!' The Drs smile knowingly, this sort of thing gets them excited too. They also just want to see him get out of here. We are two weeks today from the second round. So hopefully we will get home for a week to RMH. Lets just hope
round two goes better!
Feeling much better!
In the past 18 hours we have had a total turn around. Joshuas blood counts are coming up, he says he's had a 'poof' from the tail end department, which is what we are desperately waiting for. He had a fabulous nights sleep, he has been for a walk, he
wants to drink (although he's not allowed yet).
I went home last night and slept for the first time in two weeks all night. I had a small girl tap dancing on my ribs (she has the ability only to sleep sideways) which was also lovely.
I have to
say a ginormous thank you to Aunty Clare who charged over and looked after the motel for the night. Mike is now home again which is good!
Things have taken a turn for the worse overnight. Joshua's tummy has gotten more and more distended and his pain has increased to the point that today they are putting on a morphine pump. He's also running a high temperature and has been put on heavy
duty antibiotics. I have been crying my eyes out all morning, we went to X-ray and are waiting for the results. I was worried that he had perforated his tummy overnight his pain was so severe, but they still think it is just dilated.
But things are
bad enough that I need my husband back. I'm just so worried something will happen to Joshua and mike won't be here. Aunty Clare has come to the rescue and is going to rotorua to relieve him. Sanks Nani Clare! ( sorry that was Gallagher family speak.) We owe
you big time!
This morning a card arrived from a lady in Rotorua who's daughter had lukemia at 22 months. She told me how much she empathised with our journey. Left some wonderful scriptures she had been given. It was just so timely to get that
card Judith, and to hear your beautiful girl is 26. Judith said that she prays for a lovely healing balm from the top of Joshua's head to the bottom of his toes. I love that, as I do every prayer that comes our way. Thank you to our friends at Fenton Park
Joshua's been a bit better today, he's got no tummy pain, no nausea, he's thirsty, and he's in reasonable spirits. I met with Stephen our consultant today, who said that his tummy problems were most likely caused by the vincristine. Which is the one
chemo agent that he can do without, so they will reduce the dose in the hope he doesn't get this problem again. But as for the meantime we just have to keep going until his tummy starts to work again on its own. He said it will improve as Joshua's counts improve.
My poor baby
So after my worrying night, I had a long day waiting for the Drs to come and to decide what the plan was. The dietician came to see me and said we were likely to go on to TPN, this is nutrition that goes in through the blood supply, instead of the tummy.
It's not something that they routinely give, it carries a risk of infection and its always better to feed people via their gut.
At 4pm we went for an X-ray and my fear was confirmed. Joshua's bowel has stopped moving, it's what we call in the medical
world an ileus. It's been caused probably by one of the drugs and by days and days of vommitting. So for now Joshua is not allowed to eat or drink in the hope it resolves, the only way it can resolve is with time, but it's still a serious problem.
am pretty hopeful though, he's not vommitting, he's got Less pain rather than more pain and he was pretty bright today overall. I'm very worried about the implications this might have for his chemo. But will know more tommorrow when we see the docs.
Wednesday 6th - corner turned!
Finally today we turned the corner! There were signs yesterday, although he was nauseated all day and still retching, he only actually vommitted twice and his tummy pain was better. I had Aunty Kimmi here for the day, which bucked me up no end, she
braved 4 hours of fighting traffic, goodness knows what it was like on the way home! She's a wonderful, loyal friend who's been with me through all of my ugly days.
My poor, poor baby. I now know that if you are a cancer survivor (which I have no doubt, you will be). That there is one thing you will definitely remember and that's the vommitting. You have now vommitted 14 times since midnight last night and when
you haven't been vommitting today, you've had the puke pot pressed against your face. Your to the point that its bloody and the Drs view is that it should improve soon. The antiemetics are useless. The only time you get any respite is when your asleep.
Weve finally had the go ahead for Dexamethasone again. I am so happy about that, will give anything to see you stop vommitting, I've been crying my eyes out all day.
Things are continuing to be much the same today, we had an awful night last night. Joshua's vommitting increased and he vommitted five times during the night. Today he has been on a continual round of morphine, other pain relievers and lots of antiemetics.
He sleeps for a couple of hours then wakes up wretching and in pain and then gets the drugs and so on. They are pretty sure the cisplatin is responsible for the resurgence in vommitting, apparently it's a bit of a bitch like that, but they are not sure about
his tummy pain. We are leaving his tube out today, because his vommitting has been so bad. I am pleased that the poor little sausage is sleeping through it all.
Its 10 pm now and I am about to settle for the night. Joshua is a little better, he had
three hours this afternoon where he was pain and nausea free. He's vommitted twice tonight and needed morphine, but definitely more controlled pain wise which is good.
I finding I am becoming quite the 'mummycologist' talking to the newbie parents
on the ward. Joshua gets annoyed with me, I've turned into stalker mummy, every time the poor kid opens his eyes I'm staring at him. So, I get kicked out of our room a lot for heavy breathing over my son. So I traverse the corridor looking for some other loitering
parent to have coffee with. I've discovered that cancer parents use the 'f' word alot. It's the only word that does justice to the way you feel really! One Mum said to me tonight, that she thought up here there would be lots of happy looking bald kids around
the place which is not so. I said no... This is where the really sick kids are. I asked a nurse yesterday why she works here. She said 'this is a fighting place' and its true, there's a war going on, 365 days every year and its on level 7 at Starship Hospital.
Today my beautiful big boy turned 7, unfortunately it wasn't the greatest of days, Joshua has tummy pain still and sleeps a lot because of the large doses if pain relief and is still vommitting. Georgia is also sick now with a runny nose and temp, so
unfortunately our 'plan' of the family being on the ward together today just didn't work out. We got Daniels pressies open, then Mike had to take Georgia away, it was just to risky. Daniel came back up for a couple of hours once joshua had woken up and Sally
our Nurse gave him party hats and birthday cake. He got lots of Lego to make up for it, he was happy with that!
Well guys if I was you I'd just give up reading because it ain't getting any better! Just one of those days where I thought that it was cruel being here and cruel putting him through this. Just wanted to pack him up and take him home.
excruciating pain in his tongue and mouth and later tonight tummy. He's on morphine and then vommitted, but kept his tube in this time which was good. My lovely mum keeps on trying to point out the positives, this is making me want to strangle lovely mum down
the phone. Stating the good, is not helpful. It's like the 'you can have another baby', 'plenty more fish in the sea,' 'you'll get married again'. 'Well at least he didn't vommit today' (you spoke to soon on that one mother) no, instead he's just screaming
with pain, peeing blood and very fractious and distressed and now vommitting.
Ahhh, feels good to get that out. As a parent you feel totally and absolutely useless. Except for when you get a 'stand in Nurse' who tries to shrug her shoulders because
he's not due any pain relief for two hours.... Sorrryyy..... 'well, get on the phone and get something else charted, please. Im not leaving him like this for two hours!' 'Oh,' replies Nurse. 'He does have morphine charted'. 'Well why arnt you getting it' I'm
thinking in my head? Joshua was writhing in the bed and wailing at the time. Off she trotted, with my eyes boring into her back. Don't try and be lazy with my boy, just because his nurse is on break.
Georgia is at home with a high temp today, my poor
miss muffie, sick without her Mum. I'm torn in both directions, but Joshua looks stricken if I talk about going home for a night and leaving his Dad in charge. But I also feel for the other two, Being second fiddle to there sick brother. It's Daniels birthday
tommorrow, we were supposed to be going home, but it will be Monday now, we need to get this pain sorted and his temperature under control, he was started on antibiotics today. I just wish someone could knock him and I out for the next four months!!!!!
Well today, was the day where I started to wise up a bit to what this 'chemo lark' is all about. And I'm told that its only going to get worse.
Last night Joshua started to complain about pain in his mouth and tongue. He was given Tramadol,
quite a heavy pain reliever and a sedative to sleep. We believe its a chemo side effect but its very early. It is also uncommon in the drugs we are getting. The pain has continued today, and got so bad tonight, he had to have morphine, which made him vommit.
So it's been a rough night.
He also received his first lot of cells back today, the solution they are frozen in is so toxic and so easily causes major reactions, that they gave it with the resuctitation trolley beside the bed. (So comforting for his
As a result of all the terrible meds and dope he needed today, he fell asleep with one eye open! That was scary!. Aunty Clare asked me on the phone tonight, how I was doing with it all... I replied ' well; it's better than being eaten
by a Shark!' Which it is, when you put it in perspective.
Another day tommorrow!
So last night continued to be a bit miserable, Joshua continued to dry wretch until 9 pm when Sally our night nurse called the doc and got some Dex charted. Joshua woke up a box of fluffies this morning, and hasn't been ill all day. The cyclophosphamide
seems to make him tired, but not as aggressively sick as the cysplatin. Joshua looks good today he even has colour.
Tommorrow he gets the first of his harvested cells back, next week his immunity and blood clotting will disappear, so we will be on temperature
watch. But so far he's continued to be a robust little soldier.
Our little man is continuing to be the superstar he always is... He started this morning vommitting and hasn't stopped, he pukes about every half hour. But in saying that, in between time he just plays and plays. If it was me, I'd be lying in the bed
moaning like a seasick sailor. I really would! I'd be 'please dab me with a cool cloth, please rub my back, please bring a gun and put me out of my misery....'
Feeling like I had to do something, I went to 'Hardys' and got him some anti nausea stuff,
he ate a ginger lolly which helped, but wouldn't eat another. He liked playing in the shower, spends an hour in there twice a day, with his Lego ships and toys. The photo I'm posting is of him drinking from the tap, he won't drink out of a cup, but happy to
drink out of the tap!
Im coping ok today, I can deal with vommiting, our friend Darcy is in screaming pain, the drug he is on attaches to the nerve endings. I feel so badly for him. It's the old saying 'what doesn't kill you makes you stronger'.
Although in the case of cancer in small children, they are the hero's. Mum asked me today if Joshua asks why he is being sick. He doesn't, he just accepts it and carries on. today he got two 'courage' beads from Child Cancer, they were both pretty and pink.
These are beads he chooses for himself. I asked him why he chose pink, he replied 'I got them for you Mummy'. That's my beautiful boy.
Well, it took until 2pm to get the news, but Joshua's scan was CLEAR. So thankyou God for that. Very, very pleased. We're in with a decent shot now.
But, don't under estimate what's going on up here... Last night the nurse came in and told me,
that once we start, that I have to handle any of Joshua's body fluids with gloves for the next five days. "Why?" I asked. "Because the drugs are carcinogenic". It blew me away, my baby is getting highly carcinogenic drugs to cure cancer. How to you make sense