back in hospital

Here we are at the hospital. Alex started getting a fever around 3pm and tired etc, so i started watching her temp, At 4.30pm it was over 38 so called banksia day (cancer out patience) and finally was told to go to DEM, we worked out it is better with the drive to go up to Brisbane to RCH, no real waiting time but Ipswich we would see a wait off 6 + hrs to be seen,
We arrived at 6pm and they got us settled in the cubical did Ob's and urine sample again, Alex's temp was higher now so am glad we did come in, they put emla cream (numbing cream) on her port for bloods, then sponge bob on dvd to watch, we had the Dr come in too. They ended up saying yes we would be admitted to give IV antibiotics, Alex drank some cordial and then threw up everywhere, so glad she is not on Chemo now, i had also grabbed the hospital bag so changed her cloths. Antibiotics got started then, Alex has something to eat, corn flakes and they stayed down. She was light sensitive too.
We got to the room at 11pm, not a cancer ward as they want to be sure Alex is not contagious to others, once settled in her bed Alex was hungry again so chocolate milk and cookies she ate half a cookie then crashed, the staff also gave me some sandwiches, I finally got to sleep after midnight. We have CT scan today, Alex is hungry but not sure if she is fasting so NBM (nil by mouth) so we are waiting on the contrast for her to start drinking. Just done admission papers again, hehe they like to know everything

small update

Monday the 31st May-  I got the call to say we have the  appointment with the Physio/ortho about Alex's feet and walking issues on the 9th June,  will see what they do then about some of her walking and feet issues so looks like more travel to RCH but hey they do a wonderful Job with everyone up there and I do prefer to go there than the local hospital as they are not really good with Children with cancer etc.
also  Monday  31st May- I got a new windscreen in my car as it had a chip and was slowly spreading this was free with our insurance so that was good. had to wait around all day though and then a quick trip to school for Alex. the tape was left on for a few hours but now have a nice ned window to see through service next and so glad we have still got good tires something I am happy not to buy til required.  the car needs to be road worthy for us at all times  Bike to as I need the car to do school runs etc!!! good thing The Bike is cheap to run  just not for services or repairs lol

Alex had her school Photos taken today too so am looking forward to seeing them ( even though they are through Pixi!!!) its her first school photo so will be good to send family etc :)  plus our first pro photo of her since before cancer hit.

have been a little but off lately asking Why and what next but think we just need to keep focus on wher to from here One Day at a Time and stay Positive about how well are all are doing and how we kjust want to see the NO CHANGE on future scans 6 months out now so still early days but saying that we must keep moving forward.  I am looking into all I can do to get the word out about Childhood Cancers as I see so much about adult but their are TOO MANY kids gettin sick or lossing this battle and as it is close to home am thinking of doing something that I can donate the money back to childhood cancer research still in my head but will always do what I can even small things add up and one day hope to see less to No Children suffering

Oh and did a shuffle on my music Alex loves the Shrek song Hallelujah (Leonard Cohen song) so its the First one Just for her :) ♥

update from us

well this is just an update in between the Make a wish as I still have one more to do but been busy,
this last week Alex went to school on Monday and the did Rock climbing and Tuesday Robyn was a grump hitting me all the time then Wednesday Alex had a run at school and all was good we then went to Robyn's Child care to pick her up ( here Alex likes to have a small play too so this she did) I watched while talking to one of the Child care workers and then it happened Alex went down with a BIG BANG bumping her head and port of all things we put ice on her bump and I checked her port which was grazed but not to bad, she was very unsettled so I took the girls home where Al;ex layed on the lounge watching TV and complaining of a headache so I just watched her for awhile, she ate dinner and seamed fine then went to bed but the DVD in their room stopped working which went down well NOT!!! so I grabbed the portable so she could watch shrek and go to sleep, within minutes she was crying complaining on her headache being bad and that she can not sleep with it plus saying it will never go away we gave her panadol and then she layed on Mummies lap in the lounge while I tried to settle her with no luck

she started to throw up about 30 mins after panadol and well this set off alarm bells to me I called the After Hours Oncology dept and her Dr was sitting behind the Nurse while I spoke I was told as she had thrown up more that 2-3 times to take her straight into the Ipswich DEM at first I thought Pete could take me but then realised he had a few beers so called a good friend who came around and drove me and Alex to the DEM and waited with us to see what would happen,  she threw up a total of 9 times so they didnt keep us waiting around to long plus she was quiet and not my Normal Alexandria. the nurses did the Ob's and then the Dr checked her over he tried to wake her which was a battle but she did sort of respond so we waited some more then she was checked again with trying to wake her etc she responded better this time so we got to go home with her she may have a tummy bug but they think it could be a slight concussion too, they didnt want to do X Ray as its equal to 3 yrs in the sun Radiation and well I agree she has had enough  radiation with all the scans etc she has with the Hospital but as it is a children's it is slightly modified to deal with children being slightly less Risk.when we got home she said she was hungry so I was going to make her something but she decided she wanted to go to bed (IN MY BED WITH ME) so daddy lost his bed and Robyn slept in the big bed with mummy
no school today for Alex she still has a headache but is looking better so will let her rest up and see how she is tomorrow♥

Sick :(

well we got into see the Dr and Alex has the Start of bronchitis with a infected throat and ears ,what next so he gave me penicillin as she is allergic to Ceftriaxone and he was hoping she is not to penicillin so I called Oncology back and they said wait to get meds at first as I had to speak to the Dr but to keep an eye on Alex for any change (Temp tiredness etc) so we went home and Robyn had a nap The Dr called me back about 2 hrs later and said start the antibiotics but still keep an eye on her so I went to the chemist to get the script filled. the Dr's instructions where twice daily so I thought morning and evening so didn't start them straight away...

around 3.30pm Alex was playing quietly as she is sick she is a little lethargic but not enough to stress about, she was playing with the thermometer and it started beeping fast ( saying HIGH TEMP so I did it again 2 more times plus with another thermometer and YES it was 38.4 so I ring Oncology to see what they want and well Hospital to be sure she is ok. so I get everything ready to head in (forgot the portable DVD off all things ARGH) we arrived at the hospital around 5.10pm and they isolated her straight away and her temp on way in went up to 39.6 so was climbing. we got settled in the cubical (oncology one luckily as it has a TV lol so Alex was Happy ) then emla (numbing cream) was put on her port for 30-50min so they can access it and get bloods so waiting around for this the Dr checked her over and she was more lethargic and they just wanted to keep an eye on her. he was also worried about her ears and throat as they where red and sore,  after the wait the cream was removed and this started Alex of screaming (Her Normal when its anything to do with needles etc)  the accessed but could not draw blood NOT GOOD so they removed the needle and set up again to do it again and still no luck I was so stressed by now I almost fainted and well its a children's hospital and they are not set up to help adults so I sat down I was so stressed that My Baby girl was going through this they de-accessed the port without heplocking it and said they would do a cannula in her arm so more waiting once cream was on, they came in to put cream on her but she started to get very upset so they decided to skip the cream as she would scream anyway and just get the bloods needed so that was what they did.all done in minutes and we could sit back and relax a little.

Alex dosed while we waited then she perked right up a good sign for us the Dr came in and said its Viral more than likely and we should be home tonight cool and I asked about the antibiotics our Dr gave us and they said no due to her reaction to Ceftriaxone she could be allergic to penicillin too so they gave me some other antibiotics that she can have.  Alex's bloods came back good not high but in the normal and her neutrophils where 5.1 so that's excellent :) so we finally get out of the hospital at 9pm and are happy to head home she is asleep by that time and I give her meds then bed I then settled Robyn and bed for her while Hubby gives me the third degree well I know he just wanted all the details but sometimes when I am stressed I feel like he is blaming me for putting Alex through it all, 

It was a long night with a very unsettled Alex but she got up this morning and NO TEMP since 7am woohoo so its a start and now if she is good tomorrow school like the Dr said, she is happy to go back now though, I took Robyn to Childcare at least so we have a quiet day...

we have to let oncology know about her port at our next visit as it is possibly blocked and this could mean removal so I hope if they do have to remove it then she doesn't have a relapse to have another put in but at least cannula's can be used at every CT which are 3 monthly so our visits may get further apart??? am very worried about the port but must focus on the here and now, Tomorrow is a new day so we take one at a time

Sorry for the drawn out update but had to get it all out :(

Flu's and Bugs :(

"small update nothing new or bad"
well we have all had flu's and bugs this last week, Lucky Alex is not having chemo or we would be in trouble... she got a cold first then gastro ( slightly) Robyn also got them both and I have them both now too... I am the only one with high temps so another thing that am happy about as the girls don't need to get sick :(... Robyn is on antibiotics as yesterday the 26th February we spent a few hours at the hospital DEM as she has an infected toe not good they have said to keep an eye on her,

not much else happening here Alex has a student free day Monday so she is home... and we are just trying to rest up and get over this flu etc...

still no word on the scans so am hoping that is good as Dr may not have seen them yet but think its the better that he has and is happy :) ( well I am trying to stay optimistic as who would want to know the bad  and hoping there is no bad :)  )

And another Hospital trip

well Like I said we had all been sick this weekend and Alex had a sore throat like me (but  it stopped hurting earlier so I tried to relax as you do)  then this afternoon her temps started back up 37.9 and was not going down and she is shivering so we called the After hours Oncology dept at Brisbane and have been told Hopsital asap. so off to Ipswich DEM ( God I hope they treat us better than the last time ARGH...) emla on her port for bloods etc... just hope the bloods are all good so we can come home and wonder if she will be allowed to go to school and swimming tomorrow???
will update once we get back

*~* For want of a good weekend*~*

Well the weekend is here and I am staying positive trying to not let others get me down this world gives everyone something to deal with and we need to stand tall and work out how to get through it these are always hard but its life and we have to deal with it and can not throw blame on others.

Yesterday Miss Robyn climbed up the computer chair back and was trying to get something from the bench when tragedy struck she went flying big time and now has concussion ( and we had a almost 5 hr wait in emergency dept here in Ipswich)  I think I panicked more then I needed to but after what we have been through and seen I always do with both girls

Today I am just going to rest as I got home at 6am Hubby got up after a small nap to keep Alex entertained while I had a small sleep with Robyn. Robyn is fine just headaches and I have to keep eye out for some small things and big ones too over a 48 hr period from incident... suppose I have given some dirt for my sister to use by Robyn getting hurt she always thinks I am a bad mother, plus as we have Make-a-wish coming up something else we have taken advantage off ( but its funny as Alex would not have got it if she was not entitled to any of this)

Hubby has decided to do the RELAY FOR LIFE this year so will be chasing donations for the cancer council once his registration goes through. I wanted to do it as well but have decided on the pink run in may :) we are giving back to the cancer societies even as we still use them :)

~And More Waiting~

well its now Sunday and another long night we were suppose to have our Clear day and heard NOTHING so it is not happening this weekend they must have given us wrong details and they do wonderful work with families, still waiting on Make-A-Wish too but that's another story as we are not in a rush for that as it will be next year anyway,

♥I Love My Husband And hope he knows how much♥

VENT ALERT!!!

OK enough now about last night, we have had Gastro do the rounds in our house Robyn had it over a week ago then Wednesday I got ill Thursday Hubby got it Friday no one so we thought cool we have got through with no issues as Alex being neutropenic would not be good, well not to be our luck Hubby got to go see a mate last night for some time out of the house I got both girls to bed ( this is not normal Alex usually fights bed til after 9.30pm but was in bed just after 8pm she was not well) I got Robyn down not long after so had some me time so did more studies as want it all finished asap to not stress over a end date... Hubby called about a couple of things for a friend and to see how we where. then he came home, No idea what went wrong but we ended up in a huge fight with me even saying me and the girls would leave he seamed happy about it (ARGH DRUNK BUM) then Alex screamed out I went in she was on the floor crying about her tummy so I resettled her then 5 min later she was throwing up everywhere, I cleaned her up got everything ready picked her up from the bed and asked Hubby to get the sheet off so I could change it ( I forgot the sheet so this was another thing thrown in my face) I ended up handing Alex to him to hold she wanted MUMMY but I had a job to do changed her bed and get her re settled and walked away from the thoughts of the fight... well in minutes she was sick again :( and I decided to watch her temp it was up so called After Hrs no. we have for oncology they said bring her in just in-case its more than gastro, so I was now thinking here I am going to be driving into Brisbane at 10pm and with 2 kids I will be waking up so tried to talk to hubby he was calmer too so I got Alex ready with cream on her port just in-case they want bloods etc...

I drive in carefully get every green light and have a nice moon above which looked like a golden egg on a next of soft clouds in the dark sky♥ once there we get moved into the cubical for oncology patience they now have TVs in there too so Alex was happy they take her temp it had gone up but they where not to fussed about it we see the Dr and bloods are taken, she is given pain stop for the tummy pain and slowly settled to sleep ( 1am ???) we get the all clear to go home or stay in the back area til morning but I know Robyn would be giving Hubby grief so decided home so we leave and arrive home after 3.30am I get Robyn to sleep then send Hubby to bed I was not tired at all stayed in the girls room til 4.50am then decided to go to bed it had been a horrid night and I was emotionally exhausted :( 

But Today has been a better day Hubby & I have talked and know its just stress we have had no us time or any spacial family time so have decided to find something to do as a family that will be ok for Alex and not risk her getting sick. we have seen so many families brake down and do not want to go there but its a hard road to follow with no way off :'( only those that have been here know what we are dealing with and those that have not  (I hope you never have too)    I know our fight was nothing just a release of stress we have and no outlet to get it out :( but me writing it here was not to have him look bad but me getting most of it out  (thanks for the ear "Eyes lol" )

OK Sorry again for the vent needed to get it out I love My husband its our 6th wedding anniversary tomorrow and we again are doing nothing special for us we do have things on though...

we get to watch a friends Puppy  ( not really a puppy but a adult dog  its  what Alex calls them) as of tomorrow this will be great for the girls they so love animals so this small time with her will be good. she is a Husky named Muggy  the girls have not seen her and Maddy in 2 years so be good to see them both here tomorrow for a short time with Muggy staying on for a few weeks/months

the Puppies and Alex being nosey through the neighbours fence lol Easter weekend 2007

~*Bad Mother or What *~ well I feel like one ↓

Well yesterday 25th November 09 was Orientation day at Alex's school, Hubby came for the first hour and I stayed the 3 she made a lantern and a snow flake and so did Robyn ♥ they had lunch with all the other prepies and year 1's and both joined in with it all. she was still not 100% so I was worried about bloods.

Robyn at school making herself at home Alex just sat on mummies lap

Later that day we had a nice BBQ dinner and spent some time outside in our yard watching the green tree frogs drop from the roof and then found some toads then back inside as Alex was still lethargic... she sat down to watch TV then had some play time with Miss Robyn and Yes you guessed it another NGA bites the dust.. Hubby calls after hours unit and they suggest we go in as she will need bloods due to the lethargic side and as the bloods would be dropping since the last 2 Chemo's we make the decision that he stay home with Miss Robyn and I take Miss Alex to Brisbane  RCH DEM, I get there about 10.10pm and the waiting begins we get put into the quiet room first as she is neutropenic (possibly)

At first they wanted to do the tube without bloods then decided that could be a risk so we asked Alex what way she wanted bloods done she chose the port so emla was put on... the wait continues after 1 hr the nurse that was seeing us came over and said all was ready to go and she was going home so I have a wait for another nurse to do the tube. we waited around for another 45 mins and Alex slept for most of this now after 1am hehe,  the bloods where done and they kept the port accessed just in case and we went back to sleeping well Alex did anyway.  after about another 1.1/2 hours the bloods where back and I was hoping they had gone up but NO they where very low but the resident decided to do the tube and send us home so was a little worried but happy to be going home. so they got everything ready and no sedative this time due to the low count but I was happy about that as it would mean a longer wait after!!!.. after the tube they got an X Ray lucky she was called in for another patient so we made it 2 for her call in and this showed the tube was in the right position.  and the Dr tells us all is OK to go home but keep an eye on her as she has low counts Neutropenic, Anaemic etc so we head home at 3.15am get home after 4am and well QLD don't have Daylight savings so it was a rising sun I get at home, got a small sleep and up at 8am with Miss Alex she now also has Diarrhea and still not 100% so have called the out-patience dept to see what I should be looking out for etc she is not drinking enough and its not a cool day :( we have had last Chemo and now this!!!!!

I now feel bad as she went to prep Orientation and this is what followed but I didnt know she was low just went on her last bloods which where ok lowish but not in the trouble zone none of the kids looked sick but you cannot tell by that so hope I have not put her in harms way...

Count Down Begin's

well today we have 4 days til the last chemo next Monday I think it will just be myself and Alex go in and Miss Robyn will stay with daddy at home,  next week of work well as of Wednesday he is on Christmas leave :) so we will be sorting out some fun family days and so forth well pending Miss Alex's health

Mondays Chemo went well long and drawn out Like normal for the big one she was fine all night til 9am then threw up even when I gave her anti nausea meds so like it true tradition the chemo has given us a different side effect this week. plus we still have the next few days to actually get to the full on side effects ARGH...

I had a melt down on Monday night and its so hard not to react to all we see at the hospital these CK's (Cancer Kids) are doing the hard yard and they suffer so much but put on such a brave face. we had a good day to see about half there that day are also going into maintenance mode so it helped to know we where not alone moving forward into more unknown waters....most families have broken up and i know how hard it is on everyone Hubby and myself had a few fights ( well not really more a misunderstanding) so i just hid away so as not make it worse don't think he is coping to well and we have no us time not since before Alex was born :o  we are suppose to have the clearday soon this is something for cancer families well the parents to have a night away to try relax if there is such a thing after going through this!  but hubby has been hush hush about when etc he wants it to be a surprise for me, how nice is that, ok am tearing up now must move on lol

I also got an email today Alex is getting an Elliot Dog and she registers it online and can talk to him via email this will be so cool she loves the computer lucky I have a laptop to fall back on occasionally..

School 2010 well she now has her book list for me to order and we have an orientation day next Wednesday so Daddy can see how it all goes, still stand by going private smaller classes etc just hope we have not bitten off more that we can chew lol...

we have been hit again with heat so high 30's with storms but not much on that front hehe, also last night we ended up with a gecko in the kitchen he has gone now ??? where I have no idea but he is still in the house, girls loved talking to him and Alex called him ZOE haha

our veggie garden has bloomed too the tomatoes have flowers and so do the chillies the corn is getting higher and the strawberries have started to grow at last lol.. will post a new pic soon... lawns are green ( using grey water hehe) but we really need to get the bindii's out as they are spreading wish they got rid of them before we got here :(

before  and after the sedative

Just as we hope things are settling we have another trip to the RCH as Alex had her tube pulled out by Miss Robyn ( accidentally) Ipswich are good but they keep us hanging around then send us to paediatrics as they do not like doing children NGA's so we spent the better half of today driving into Brisbane and sitting in Emergency ( they isolated us asap as she is neutropenic and we could no go to the day unit as she had loose bowel movements Sorry TMI) she threw up as soon as they gave her some anti nausea meds so that was out and they decided to slightly sedate her  today to calm her it worked she still fought but not as much then we waited around for the hour to be up and the sedative to wear off to go home... just as we started to leave I was carrying her I luckily had a spew bag on me and she threw up everywhere ( well alot in the bag ) so back to the cubical we go to wait a few minutes to see if it passes and then get the all clear again to head home..... we finally get to leave and she is doing well tonight but have halved her feeds just in case its a tummy bug or not wanting to unsettle her tummy. Dr was happy for us to do this...

as we got back in the cubical waiting clearance would never know she was sick just a few minutes before