Stay Signed In
Do you want to access your site more quickly on this computer? Check this box, and your username and password will be remembered for two weeks. Click logout to turn this off.
Stay Safe
Do not check this box if you are using a public computer. You don't want anyone seeing your personal info or messing with your site.
Especially for Sharyn...who asked me for this page...
Friday 28th April 2006
We are finally home! What a long 5 weeks! Poor Cody had so many tests done - 5 anesthetics in a week and a half, not good for his chest. In the end nothing was solved. The last test, which was an Open Lung Biopsy, told us what the lung looked like but gave no solution to the problem. No specific disease or bug was found. The large Bronchial Tube is full of thick, creamy mucus and the lungs are very inflamed. The lung specialist has been puzzled about the mucus, how it got there and why? Our oncologist said he hasn't seen this sort of thing before and that it is a puzzle.
So, we are just treating the symtoms. An anti-inflammatory drug for the inflamation. His chemo has been dropped by half to stop his immune system from dropping down too low, it seems to allow whatever is wrong with his chest to flare right back up again. We were told that if we stopped his chemo within 6 months his chest would be completely normal. However, it's 100% chance he would relapse with Leukaemia.
So, now we wait and see what his chest will do and hope that the chemo drugs are still enough to protect him against relapse.
On the plus side he is SO happy to be home at last! He says to me everyday "I'm so happy to be home mum". He is back to playing like a normal boy. He still gets very tired very quickly and he walks like a little old man, but he is happy!
Friday 31st March 2006
Hello, well it's been a long week. We have had tests done for Cystic Fibrosis and other diseases but all have been negative. I guess that's the good news.
On the not so good side our doctor is now talking relapse. This means that the Luekaemia cells have come back. Cody is in hospital with back pains and temperatures. All his bloods are dropping. His haemoglobin and platelets (which havn't changed for months) have dropped suddenly. This can all be an indication of relapse. He will have a bone marrow test on Monday to find out what's going on. Please pray for us that it is just some strange infection and not a relapse. If it is a relapse then I think Bone Marrow Transplant is the next step!
Thanks to all that support Cody, it is uplifting and amazing to have so many people care about our little bear...
Friday,19th August 2005...
Cody is on his way home from his Chemotherapy in Sydney today. He has done well after his week in hospital. Chemo consists of a Lumbar Puncture on Tuesday to inject IT methatrixate into his spinal cord (under general anaesthetic) then he is acsessed via his portacath, which is a small device inserted under the skin in his chest with a line up to the vein in his neck. A needle is stuck into the drum like portacath and he is then given chemo intravenously for 24 hours....after this he spends another two days having fluid flushed through his bloodstream and has blood tests to ensure the chemo drug is flushed out of the system before he comes home.
His hair is growing back and he has what we like to call "bum fluff"... He is on four half tablets of 6MP which is a chemo drug given at home. This has been his last week of this type of chemo - after having 4 weeks of it, only every second week though.
He has flown down via Angel Flight each time.
Today's update: Cody arrived home safely today via lovely Angel Flight volunteers - besides feeling a little unwell in the stomach and having a rash under his mouth he is in very high spirits and happy to be home with all his toys and family!
Monday 22nd August 2005...
Cody has been a little sick from his chemo but he's so brave and carries on playing and having fun regardless of the vomiting. The little rash under his bottom lip is still ugly and he has thrush in his mouth - a side effect from the chemo.
The good thing is that he has two weeks chemo free now before he starts his next stage of treatment. We are just going to sit back and enjoy the break and enjoy having him home for TWO WHOLE WEEKS!!!
Tuesday 23nd August 2005...
This afternoon we had our first temperature within the last 5 - 6 weeks. Cody's temperature reached 38.5 which means that we headed into Coffs Harbour Hospital. After accessing his portacath they took some blood and tested it. His blood results weren't too bad and for the first time ever when he's had a temp. we were allowed to go home with some oral antibiotics!
A milestone to not have to spend 48 hours or longer getting pumped full of antibiotics via a drip!! After a long afternoon and after being accessed and deaccessed (which is really painful)Cody was happy to come home and is sleeping well. His temp has gone down a little but I dare say I'll be up all night checking it!
The reasons for the temperature being so important is that often it's the only sign that there is a serious infection somewhere. Leukaemia children have died from having a temperature that went unnoticed...
(Hello Sharyn...)
Thursday,1st September 2005
Cody has not had any more temperatures and has spent his two week treatment break getting over the flu.
We will be heading off to Sydney on Angel Flight on the 5th September for a bone marrow test. This is a check to make sure that the Leukaemia cells arn't returning and that the chemo is working. It is only a day procedure under general anaesthetic so we will be out by late Tuesday afternoon and home Wednesday on another wonderful Angel Flight.
Sunday 4th September 2005
We are packing for our flight to Sydney tomorrow. Cody has had a great two week break from treatment(beside the flu at the beginning)and it will be hard to go back!
He has been playing and running and laughing the whole weekend and it has made my heart soar to see him being 'normal' again! His hair has grown even more and it's so easy to think life is returning to normal! However, we are heading back into a difficult phase of treatment and things will go downhill again for a while. His bloods will drop, he'll lose his hair again and we'll go back on all the horrible drugs that make him bloated, stiff and sore.
It has been good to see that once treatment finishes he will go back to being happy and loving and active!
Thursday 8th September, 2005
We are back from our Sydney trip. Cody had his bone marrow test - we don't have any results so we are presuming that all was fine.
He has started on steriods again. Half a tablet 3 times a day. This makes him very moody and aggressive. His next trip back with be on Monday and he will be starting another round of chemo. It will be the strongest round and will have quite a few side effects.
Going back to Sydney has been heartbreaking for me. My husband has been doing the last lot of trips and I've been staying home. Being there for the fasting and the accessing of the port and the day in hospital and finally the general aneasthetic and the operation was exhausting and upsetting.
Seeing the other families again and watching their pain was also so hard. A few had had such bad reactions to their treatment and it was really scary to know that we were heading into the same area. You just never know how the drugs will effect your child and what complications may arise. I am terrified and finding it hard to cope with the thoughts that run through my head.
Thursday 15th September 2005
Unfortunately good old Telstra has put us in a position we have not been in before and we have no more megabytes left for this month. Therefore there will be no activity on this website by us until the 22nd September and I have not added any new photo's of Cody. It teaches us a lesson about being sucked in to a so called "good deal"....
We have been in Sydney again this week. Cody has started the next round of chemotherapy. This was Aspariginase, which is a needle into the muscle in his leg, Vincristine and Doxorubisin (hope my spelling is correct, probably not!!)which was given intravenously over an hour. This makes him very tired and sore in the legs and he pees pink for the day.
We are home safely though and he is slowly getting over it. We are off for another needle at the Coffs hospital tomorrow then on Tuesday he will go again for the same chemo as above. This will keep going on Tuesdays and Fridays until we head to Sydney on the 3rd October (my b'day!! I'm getting old!!).
Once in Sydney things will get hard with a change in chemo. At the moment I'm just enjoying the calm before the storm! Of course if you saw Cody on steriods you would know that this is far from calm! Haha! My little angel has become quite difficult, very indecisive, very moody and very hungry! I'm thinking he'd test the patience of a saint! But we love him - horns and all!
Thursday 22nd September 2005
Cody's chemo in Coffs is going well. He is more tired after each one and his legs and back are getting sore. He is still eating a tonne of food a day, starting with breakfast at 5.30am and going till late at night! He goes from brekky to sausages to sausage rolls to cheese sandwich to pizza with all sorts of yogurt and chippy snacks in between! As you will see from the recent photo page his face is quite swollen and I can tell you he's a lot heavier!
The countdown is on till we head back to Sydney for our extended stay. We're enjoying every moment we have at our lovely house and we have even been to the beach a couple of times.
Wednesday 28th September 2005
Cody has completed his last lot of chemo in Coffs Harbour. All has gone fairly well. He gets more lethargic day by day and only really has energy to play the computer and watch telly. Mike spends ages playing Power Rangers on the computer with him which is so nice - he can be such a lovely brother some times!!
Only 3 days to go and we'll be heading off to Sydney for our long stay. Mike and Brett are going away to Nanna's house for the duration of the treatment and Renee with be staying with my Mum and Dad. It's so hard having the family spread out so far away from each other. Cody will be so lonely with only me for company but there doesn't seem to be anyother way to do it. We can't go to Ronald MacDonald House as Cody has a bug in his poo which doesn't effect us but can be passed onto other immuno compromised kiddies! He has been cleared of the bug so far but they don't want to take the chance of it reoccurring while he's at Ronnie House with other chemo kids. Sigh, we'll be staying at a motel for the month........not much fun, no play rooms like Ronnie House.
Cody's white blood count has dropped alot this last week. I think it was 11 last Tuesday and 3 this Tuesday. Just shows how the chemo effects his bloods - by next week we are expecting no white cells. Which means he'll have nothing to ward off or fight any infections he might get. Our bodies have their own bad bacteria and usually our immune system keeps them at bay, without it they can get really sick.
Not fun....
12th October 2005
We are in Sydney. Cody is in hospital at the moment on antibiotics trying to recover from mouth ulcers and thrush that is so bad he can't speak, eat or drink. He is in a lot of pain and his blood levels are not recovering enough for him to start his next stage of chemo. Hopefully by next week he will have recovered then they'll barrage him with some other awful drug and there'll be other side effects to contend with. He really tries to be happy and still manages a few smiles for us. Such a brave boy.
13th October 2005
Cody is recovering slowly from what is called Mucusitis?(not spelled correctly I think!) Basically as I have said before it is mouth ulcers to the extreme! His white blood cells are finally on the rise and he is improving day by day. He has eaten his first food since Sunday and was so happy as he's been so hungry - to go from all that food on steriods to nothing for days is quite distressing for him! The first food he has wanted is a packet of chips which with mouth ulcers is not good!! Ouch!! Hopefully we may be allowed to go back to our motel tomorrow. Finally a decent bed for mum instead of a couch bed! Woohoo!
Monday 23rd October 2005
IMPORTANT NEWS....
Tomorrow is Cody's last IV chemo. It means that he will be heading into the maintenance program in a few weeks, which will be chemo tablets and medicine for two years and checkups but no IV chemo! His portacath will be removed and his life will return to almost normal! WHOO HOO!! Can't believe that it has been 7 months since he was diagnosed. It seemed like it would go on forever and yet...here we are!
We have survived the week with no temperatures of hospital stays...now all we need is for his blood levels to be ok tomorrow and we will go ahead with his last lumbar puncture!
He is well and happy but not very active as his leg muscles are sore from chemo. He looks funny as he is bald and his eyelashes and eyebrows are very thin. He is giving me lots of grief over taking his medicine though - any one have any good medicine giving tips??
Tuesday 1st November 2005
I'm a bit slack at this! We arrived home last Friday night and all has gone so well since then. Cody's energy levels are increasing day by day which is so wonderful!
Our next Sydney trip is on the 15th and will be quick! He will get his next lot of medication which is to be taken at home and we'll zoom on out of there!
Things really look good and we've had no temperatures. It's so good to be home, SO good for us all. I could see the change in Cody from the minute we got here - there truly is no place like home!!
Tuesday, 10th January 2006...
Gee 2006 already. Long time since I have updated this page. There really isn't too much to say. Cody is on maintenance, chemo tablets everyday. He has a blood test once a month. His white cells have been a little higher than the doc likes but they are coming down slowly. They may increase his chemo drug if they don't come down far enough. Apparantly if the drug isn't keeping the white cells down then it's not working on the Leukaemia cells either.
Other than that he is well. I think the chemo drug still makes his legs sore and makes him a bit cranky but his energy has returned along with a gorgeous golden fuzz on his head!!
He is loving swimming at home and at the beach. This year is pre-school year....I am scared but hope he handles it well! Chicken pox is the big thing we have to avoid and pre-school is the biggest place to get it!!
We have had no hospital visits for a month and only a quick blood test this month which he handled fairly well. It's a miracle to be so 'hospital free'. A sign that things are returning to reasonably normal.
The fear of infection or relapse is still hanging over our heads but we are just trying to go along the best we can.
HAPPY NEW YEAR to all those who come here and to all our faithfull regulars, friends and family! Here's to a great 2006 for us all.
Happy Birthday Mummy's Little Bear for the 6th January 2006. A big 4 year old with a wealth of experiences beyond his years!
Friday 17th March 2006
Hello, it's been a long time since I've updated this page. Things have been difficult over the last few months and I have struggled a little with life in general! Anyway, here I am...
To catch up...Cody had his portacath removed on the 19th of January. He had been having a low grade, persistant temperature for a few weeks and they were worried it was his portacath infected. He had an upper respiratory cough, which meant it wasn't affecting his lungs at all. Unfortunately when they removed his port under general anesthetic it caused the upper cough to go into his lower respiratory and it became pneumonia. We have been battling it ever since.
Cody has spent quite a few weeks in Sydney and Coffs Harbour hospital undergoing IV antibiotics and several tests to try to find the 'bug' that is causing the pneumonia and get rid of it. It seems to be antibiotic resistant and therefore never quite goes away. Within a few weeks of being discharged he starts temperatures again, tracial tug, breathing heavy, a horrible cough and has crackles, crepes and wheezing in his lungs. Then back we go to hospital for more antibiotics via IV.
We were discharged from Coffs hospital today and will be heading down to Sydney (flying with the wonderful Angel Flight) on Tuesday so Cody can be checked out by our oncologists. It seems he may have to have an open lung biopsy to try to solve his respiratory probs. Not happy about that!
Other than that Cody is as well as can be expected. His hair is growing rapidly and is soft and gorgeous. He looks like a normal boy now, although he is pale and has lost quite a lot of weight lately. He is only 12.7kg which is underweight for a 4 year old!
Cody is also in the process of having a wish granted by the Make A Wish foundation. If approved we will all be off to the Gold Coast for a wonderful weeks holiday. Cody will be spoilt rotten and be treated like a star at Seaworld, Dreamworld and Movie World. We have asked for his "far away Nanna and Pa" to come along too and we can't wait. We all need together time and FUN after the hard year we've had, especially Cody.
Wednesday 22nd March 2005
Well today is one year to the day since Cody was first diagnosed. This day last year was the day our lives changed completely and we were told the devestating news that our beautiful bear, Cody, had Leukaemia. One year has gone so slowly and yet so quickly, if that makes sense? There were times when it seemed to just go on forever.
One more year and Cody will be finished treatment completely. Lets hope this year is a better one!
Just updating quickly, Cody needs more tests done in Sydney. I am heading down tonight. They say he has what looks like chronic Bronchitus and they are now going to test for Cystic Fibrosis also the stomach valve may be very weak and opening up letting his stomach gasses into his lungs causing infection all the time plus a number of other things that hubby didn't quiet get...
Before cancer he never had any lung problems and I'm devestated that this is happening - as if the bloody disease itself isn't enough for him!!
Hopefully after a few tests we will have some better answers. Obviously for them to be doing this something has shown up on the latest scan that wasn't there before. It's frustrating being up here and not hearing first hand. Hubby is doing a fantastic job down there but I'll be glad to be there first hand and to see My Little Bear again!
