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September 2010 Parent group #17
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Posted 10 April 2012 - 09:17 PM
Awww She's just gorgeous Wingless, congratulations, and I hope all the tubes and stuff don't have to stay on for too long.
Brrrr it sure is freezing here in Sydney for a Darwinite, glad I came prepared with some woollies and mum has stuff I can borrow! It was such a lovely Easter weekend, it was a bit of a shock to wake up to it this morning.
We had a lovely time over Easter, got in some good fishing, I landed my first yellow tailed Kingfish on Sydney Harbour on Saturday, and we got a bucket full of other nice little fish down at my aunty's place on the south coast yesterday. DH and Alex went back to Darwin last night. I had a bronchoscope (lung examination) and biopsy done today to try and get to the bottom of what is causing this weird lung inflammation that turned up last week on my CT scan. I am now officially excluded from the melanoma drug trial because of the lung thing, but I am still going to get compassionate access to the primary medication once the lung problem is sorted out, so that is Ok, I just won't be on a formal clinical trial, and there might be another one starting later in the year anyway. Just have to hang around down here now until we get the results from today and work out what if any treatment is needed. Would be nice to be able to take some good deep breaths or go for a decent walk without being totally puffed out! Meanwhile I am on some steroids which are at least helping me breathe a bit better.
Posted 12 April 2012 - 09:47 AM
Sorry guys - just so god damned busy
WA congratulations - weren't you deciding on Evie before?? Glad to hear all is safe and well. She's beautiful
Ally - so sad to hear your news take good care of yourself and I hope it all goes well. Will be thinking of you!
Occbee - I hope Ella and yourself are doing well. It must be very hard to go through all of that.
Not much about us - life goes on. Isla is a handful really and her behaviour can be shocking. Have started the naughty room as she has seen it many times for Yas. She understands it too - she won't stay there but just the fact she has been told off and put in there she comes out crying and wanting a cuddle. She is off her reflux meds now for the last month and no change in her sleeping or eating habits and she is eating a lot more foods including dairy products. The only thing I haven't fully been able to get her on to is milk but everything else so far seems to be ok except that she isn't used to foods and they are probably a bit rich for her so she doesn't eat much of it. Am trying to ween her from her bottle during the day time now too. Will continue her night time bottle - she doesn't go to bed with it but still she should be able to eat enough and its more about the actuall bottle than the milk with her because i still offer her the milk in a cup but she chooses not to drink it. Very hard she's addicted.
All good with me - DH and I have had our problems but trying to work through them. He makes it a bit difficult sometimes but what do you do???
Take care everyone - yes Easter was a lovely long break and I actually had time to get some things organised around the house!!
Posted 12 April 2012 - 05:42 PM
wow, congratulations wingless!! what a great easter you must have had. she looks absolutely gorgeous! hope you're all doing well.
our easter was pretty relaxing, we don't do much at easter. my family doesn't celebrate and DH's family is pretty small, just him and his 2 sisters. so we just had them over for afternoon tea and that was it.
jesse has been such a little cutie lately, i LOVE this age! he's such a funny kid. he makes funny faces at us and laughs at his little jokes, struts around the place, he's a really little character. and he flirts with everyone he sees. he's been such a good boy and i just can't believe how lucky we are! but oh wow does he eat... these kids are gonna send us broke with the amount of food they eat! they slept at my parents house on monday night so DH and i could see a movie and i brought some fish for their dinner. my mum asked if i was sure i wanted her to cook all of it because there were 2 quite big pieces, and should they just share one. i had a look and said "no, they will definitely eat all of that!" then she watched in amazement as they ate all their fish plus a heap of veges within about 10 minutes flat. when we picked them up the next day she said it was such a pleasure to watch them each eat a big bowl of cereal and 1.5 pieces of toast for breakfast. they're definitely good eaters!
Posted 16 April 2012 - 05:41 PM
Forgo it's great to have good eaters isn't it? My parents and my in-laws are all gob-smacked at the variety and amount that Alex eats, but then his step-siblings are good examples, nothing really ever gets rejected. Alex is growing like a weed, and MIL said she weighed him bare the other day, 13.8kgs! I think that's about a 400gr gain in a month, although he had been very steady for quite a while before that.
He had 18mth injections today, was very good apparently, DH took care of that as I am still in Sydney.
Went back for the results of my lung examination today, and the news was not great, the cause of the inflammation and pneumonia-type condition that was causing all the trouble over the last few weeks turns out to have been the body's reaction to melanoma cells moving into my lungs. The steroids I am on have dramatically improved the condition of the lungs and I feel much better but I need to stay on them, and I should be starting the targeted melanoma drug sometime next week or so. I am going back to Darwin for a few days at least though while they wait for the formal approval to supply the drug and actually get the tablets in stock to give me, I will just make a quick overnight trip to Sydney to pick up the tablets and then have about monthly trips down for reviews. Apparently having this lung problem as a sign of melanoma is very rare, Grrrrr! Maybe I can get a break and get some good long-term response to this new drug once I start on it.
Sorry for the vent, just feel quite angry at the world now.
Hope everyone else is well, especially you Wingless and your gorgeous little Evie,
Posted 20 April 2012 - 06:54 PM
Ally - oh I hate to hear news like yours. Thinking of you, you shouldn't be having to go through this at all let alone with such a little child to be away from so much - they can get rid of it and you then can just get on with your life. Its just not fair this world sometimes. xxxx
Posted 21 April 2012 - 04:58 PM
Thanks Helen, I am back home for now which is great, just waiting on the tablets to come thru. I'm going back to work on Monday, I definitely need to exercise my brain. DH and I have had a couple of cries, but we are trying to stay as positive as possible, and we will make it our mission to enjoy every moment and as many different things as we can.
Posted 21 April 2012 - 10:45 PM
Oh Ally, I'm so sorry to hear your news. You're in my prayers. Let me know next time you're in Sydney and I'll try to do better about catching up.
WA - congrats on the arrival of Evie. She's beautiful. I hope everything is going smoothly for you all.
Life for us is busy busy. I've been enjoying the school holidays and not having to rush to school twice a day. But we still seem to be hectic. I was hoping Ella's daysleeps were going to be better during the holidays but they have been horrendous - I think she's had about 3 in the whole 2 weeks! She's driving me nuts!
Posted 22 April 2012 - 11:29 AM
Hey Ali whats the treatment going to be for you then if you don't mind me asking. I know its serious by the way you are talking but Im hoping its not total bad news is it?? Any form of the 'C' word is bad but people do concur to a degree??
Speaking of catching up - we head to Bali on August 17th via Darwin, I think we have a 5 hour stop in Darwin with my friend so we are going to clear customs and perhaps get the kids out and about in a park somewhere close to the airport where there is a cafe we can have lunch and the kids can play so I am hoping you can guide us to maybe somewhere good for the kids close to the airport where we can taxi it and be able to refresh in the fresh air and eat and keep the kids fed and amused before getting back on the plane to Denpasar. If you know of anywhere would be great and if you wanted to join us would be great to catch up with you and your little man???
Posted 23 April 2012 - 01:38 PM
Helen, the treatment is going to be a tablet, which provides a chemical that targets an aspect of the genetic mutation that is active in my cancer. The idea is that it either slows or stops the mutant cells from multiplying further, and in a significant number of cases of people taking this medication in its trial phase, it is resulting in tumors shrinking and sometimes disappearing. I have a number of enlarged lymph nodes that are evidently invaded with cancer cells, a cluster of nasty looking black moles on top of my head, and now these tiny spots in my lungs, so all of those will be monitored to see what happens.
The big "what if" is how long the medication will keep it at bay - the cancer develops a resistance over time and starts to come back, and that is what the researchers are frantically working on at the moment, trying to crack the issue of how to overcome that resistance. Fingers crossed the scientists work it out soon!
A nice place for a break in Darwin - I am thinking around the East Point/Fannie Bay area, there is a popular cafe called "The Cool Spot" at Fannie Bay, and you can take a short walk to a large parkland area East Point Reserve overlooking the harbour. This would be about a 10-15 minute cab ride from the airport. I wouldn't say that there is anything really within walking distance or less travel time of the airport. Alternatively you could go to Casuarina Square shopping centre, but then that is just another shopping mall. If I can make it out to meet you on that day I certainly will! We are going to Bali in July for 8 days, looking forward to it very much.
Posted 25 April 2012 - 07:34 AM
Oh Ally Im so sorry you are going through this. I hope too they get to work in a hurry! - im sure they are working at a fast pace, things have come a long way with cancer treatments and you are one step ahead of a lot of people in that respect but it still doesn't help when you are faced with that horrible word Im sure
That place you mentioned sounds perfect - there are 2 of us adults so really to spend the money to get out of the airport and into the fresh air for 3 or 4 hours is more appealing even at the cost of a taxi ride. We had contemplated hiring a car but tbh we would then have to hire child seats and spend the money on petrol on top of the hire car so I think a taxi fare would be easier and cost effective. Thankyou for that info. We are on the count down now to the trip and so is my weight loss LOL. Where are you staying in Bali? We are staying 3-4 days in Kuta for some shopping and then heading to Nusa Dua to the Novatel which has a kids club and Im going to get Isla a babysitter while she sleeps in the middle of the day and put the kids in the kids club from lunch time and then get the babysitter to take Isla over to the kids club when she wakes so that the kids will all be entertained/looked after for 4 hours every day we are there and us adults can relax. Bliss - I don't think I have ever been able to relax since I was pregnant with Yas (4 years ago) as we have had no-one to look after the kids apart from daycare and it will be nice to have to do nothing for 4 hours and chill out.
Well Isla is bashing around an office bin - better go and save the walls. We all got woken at 6.30am by the bin men -
Posted 13 May 2012 - 04:10 PM
Just popping in to wish everyone a Happy Mother's Day. At least I hope it's better than mine - DH has been a complete twot today. It's the first time he's actually had Mothers Day off since we've had kids and thought I might get some spoiling, but no - he asked me to help him get the kids ready and then to help him get the picnic lunch ready and then to help him put the car seats in because we were running late and I said "Ummm, no. You'vr been awakesince 7am, if you had cared enough you would've had all this organised" - 2.5hrs should be enough to pack some sanwiches and get the kids ready. Grrr. And apparently I'm the unreasonable one. - but he couldn't even get his a*se into gear for ONE day.
Posted 26 May 2012 - 11:07 AM
Hi everyone first of all a Happy Belated Mothers Day to all the wonderful Mummies in here.
Secondly Ally I am so sorry to read your updates. I hope you have started your treatment and it is all going well.
Just a quick update Evie has been out of hospital for 2 weeks now she was released the day before Mothers Day which was nice. She was in hospital for 5 weeks and had one trip to Sydney and had to have surgery so they could get a biopsy of her bowel. She doesn't poop so we had to find out why. It appears she has quite a bad cows milk allergy and the lining of her bowel had a large number of cells that indicate a allergy. We have her on Elecare but I have not seen any improvement yet and still waiting for her to start using her bowels without help. We need to do bowel washouts 3x a day to decompress her tummy otherwise she look like she will explode with how distended she gets. She also has severe reflux we already have her on nexium granules and Zantac but she is still in pain. Apart from that she is just beautiful. I just can't believe how busy I am with 3 little ones I just never stop and forgot how tired you get doing night feeds.
Zara is doing well still having major problems walking but she tries so hard. Drs recently have expressed some concerns about her appearance apparently she is a funny looking child as one dr put it. He thinks we should go and have some genetic testing done there is one syndrome they are looking at she has 11 possible symptoms and features of it out of a possible 14 symptoms. If she does have it she will need ultrasounds every 3 months and blood tests every 6 weeks until 8yrs old as 1 in 10 kids with it develop fast growing cancers of the kidneys and liver. Fingers crossed it's not what they think but if it is at least we know what we are dealing with and can take the precautions needed. Another concern which is most likely linked is that she is constantly hungry and does not seem to know when to stop. She growing quicker than we can keep up with she is now over the 100th percentile for both weight and head circumference I can hardly pick her up. She vomits very regularly because she eats so much. She has also started daycare and loves it we have had a few issues there not with her but the older kids teasing her about the way she walks. I didn't realize it was happening until Claire started doing it at home when I spoke to them they said they had to speak to some of the kids about it. She has another MRI scan the first week in June and is going to be assessed to see about braces for her legs and a possible walking aid. She still has no words but has started her own form of sign language which has made life easier.
I hope everyone is well and all our little ones a doing well.
Posted 30 May 2012 - 03:22 PM
Sorry to be MIA for so long, I swear a week seems to go by as quickly as a day.
Wingless, glad to hear you have Evie home with you and hope they can sort out her digestive issues soon. And fingers crossed that there is nothing bad going on with Zara, although as you say, if she does have some genetic syndrome you can be fore-warned and watch out and deal with problems before they get too bad. Life seems to keep throwing you curve-balls, I hope you are getting lots of help from your DH!
Occbee I hope things have improved since Mothers Day - I have seen some of your posts on Facebook and hope you got through your exam OK and that your assignment mark is good.
As for us - well we are now in our lovely Darwin dry season and the weather has been very pleasant, although quite windy at times which puts a stop to fishing trips. We did get out 2 weekends ago for an overnighter, it came up quite windy on the Sunday morning. Poor Alex, he spent some time wandering around on the deck, had some milk and a fruit squeezie pack, and a little while later lay down on the deck. I thought he was tired, so DH took him up into the cabin and laid him down on a pillow with a blanket over him (it was quite cool). Not long after I heard this very sad little cry "Mumm-mmmyy" and I looked in to see him COVERED in vomit, and it was EVERYWHERE! Poor little mite had been sea-sick, milk and fruit puree was not a good combination. Luckily most of it was contained to his shirt, bib and the blanket, with only a little in other places in the cabin, so we changed him and sponged him down, and got him out in the fresh air with some water and he felt better.
Otherwise Alex continues to be a great little kid, he is learing so many words, and is putting lots of phrases together now. Last night when his daddy came in, he said in a very clear voice "Hi Daddy" which sounded so grown up! He has also started to make some use of the potty and toilet, they started him at childcare after he showed some interest, and while he isn't at the point of telling us BEFORE he needs to go, he does often tell us after so at least he recognises what is going on, and he is just getting familiar with the whole thing in a low-key sort of way.
As for me, 1 month into my treatment and all seems to be going well as far as we can tell. I won't be scanned until late July so that will be crunch time in terms of seeing whether any of the internal lymph nodes have shrunk and whether there are any nasty lumps anywhere else. The melanoma spots on my scalp have started to shrink a little though which is a good sign. I am working full time in between my four-weekly visits to Sydney, it is good to be busy.
Countdown is now on to our Bali holiday, 4 July we go so not long now. Will try to be back in here before then.
Posted 12 July 2012 - 01:36 PM
Hi Everyone! So a little flash from the past here! Its surf cec from the original group with baby Olivia! Ive only been MIA for about 20 months! So great to see youre all still on here.
Olivia is going well after some initial problems with her muscles-floppy but now is walking fine. Shes a funny little monkey with bright red curly hair and a little chatterbox. Im back at work full time and while life is busy, all in all its good. Ill read up on how youve all been.
Anyway, I hope to be here a little more frequently!
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