another trip to the Hospital in 24 hrs

well I got in touch with the oncology dept and they asked a few questions about how Alex was she is doing OK but very tired but still trying to get the energy that is not there to play etc. they contacted the Dr we are under and we get a call back to come in when possible to have a HB blood transfusion as her hemoglobin's are very low and need the transfusion this will be a long day so we all went in and both Girls where so well behaved Alex was so tired and slept again but they have said this will boost her energy ( not her platelets or Neutrophils though they will still need to be watched) we arrived after 2pm and left after 6pm home now but wow what next this week has been so full on I thought I was being a silly mum but I trusted my instincts and well she was not doing well and I am helping them to know that so they can help her get better♥

♥ :-) Having the transfusion and still smiling :-) ♥

I am still emotional and after 4 hrs sleep hope I get some tonight but now as both girls slept in the 1 hour + drive home will they want to go to bed early???

we had wanted to go to Carols By Candle light the next 2 weekends but now have decided to just put up some shade cloth in the back yard and some fairy lights so the girls will have a festive yard :) and well Alex is our first priority I can not put her in harms way so this is the best thing

We will do something Big next year for them and Robyn will be a little older too :)

then to end it all Robyn starts throwing up and saying she had a sore tummy so called 13HEALTH they just said to watch her and keep them apart as much as possible  like that will work but will do our best .. worst thing is tummy bugs take hours or even a day or two to come on so Alex was exposed at the same time as Robyn

~*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...

Today the Day!!! Chemo is finished♥

the scar now bit blurry but hey

well its finally here the last day of Chemo. we were all up at the crack of dawn well not really as daylight is 4.30 in QLD thanks to no Day light savings ARGH we got up at 5.30am and started getting ready to head into the hospital like any other day we have there, I let the girls sleep as they both had restless night and Miss Robyn slept all night in her own bed and still has not had a (BF) that's a record she has asked a few times though but I was busy as you will read

6.30 I woke Robyn got her dressed and gave her breaky then started getting Alex ready she was still asleep I put the Emla Cream on (numbing Cream) gave her anti nausea meds and Bartram meds then dressed her well shorts with her PJ top she didn't want to change so why upset her anymore than today does anyway. then we headed into Brisbane with peak hr traffic in our midst's.  On arrival weight temp etc was taken she had lost weight again this week down to 18.85kg but almost 110cm so not bad :)  she was cold so we got a blanket which she stayed under on mummies lap til they called her in to access her port and take bloods she was very vocal about not wanting this like normal but no fight. they took her temp again as she was still saying cold but still normal. they put a fluid bag on just in case ?? no idea why though . then we went back into the waiting area, normally Alex is playing in the cubby house or with the toys but today she sat on my lap watching TV and cuddled mummy not my normal energetic princess!!!

we had a wait to see our Dr as he is the head Oncologist (we decided to use our Private health as it helps the hospital and we are under one Dr). he to was a little concerned with Miss Alex being not up &and running around but said the same watch her but do not celebrate to early, respect the last 2 weeks of chemo which we are. Her bloods came back low but they are still on the drop from last week he gave us more scripts etc and a form to book in for the CT next week or as early as possible so we now have a CT with contrast Oral and IV on Wednesday the 2nd Dec to look forward too :-/ then back out to the waiting room Miss Robyn in the pram and Alex back on my lap Hubby goes to make appointment and fill scripts while we can. while he is gone we go in for the Chemo its not a big one 25 min total with 2 flushes so we had just finished the chemo and starting the 1st flush when Hubby gets back. Alex falls asleep on my lap doing this she only woke when they de needled her and then threw up :( they took her temp again and also reminded us to watch her as this is not normal for Alex (Hello we know and I am stressing)  so home we go

Alex is now asleep in the lounge again 2 naps in one day God I hope she is OK I hate not knowing and every week is different :( but we now have just over a week before we go back  to see the Dr and have bloods and a CT done then it will stretch to 6 weeks with Port access and  scans with CT's occasionally next week is the BASE LINE to be sure the nodes are not starting to grow again .. OK I am tearing up but should be relaxing  

sleeping now temp still normal

Gift from Hubby and girls for me "Gothic goblet" ♥ I feel the love

Dr Hassall has said the official end of treatment date is mid dec not sure why but may be due to last scans etc and then we do go ont 6 weekly visits too :) 

Standing Strong ~♥(well trying to)♥~

here we are only a couple of days away from that last dose of chemo.  we are all doing as well as can be this will be a short post just to get everything off my mind..

yesterday was Hubbies last day at work he has monday and tuesday off for chemo then goes on leave til the new year.. I also had the cleaner in to help tidy the place up the last time for us. I have found I am an emmotional mess off late and have no control this is something I am not liking at the moment. all was good last night Alex is still not 100% but she never is after the big chemo oral thrush has hit hard too so we are dealing with it all.. Miss Robyn went to bed at a good time last night and I got to sit down and get on Facebook and read emails etc.. then she woke screaming (night terrors) and hubby got her as I was busy with alex she was unconsolable I ended up swapping and taking her to settle her but even a breastfeed was not of intrest I walked around and around rocking and patting her ( this I had not done since she was an infant♥) and very slowly she settled, this was so draining I was shaking once she settled I sad in Hubbies chair as Alex was in mine and broke down kept crying sorry hubby stood by me and then alex started crying too she wanted mummy I honestly think I am going to have a nervious break down.really need some time to relax but how can I it so hard to be away from the girls I also need to Morn my Father I so miss him.  what next No idea I will stand strong as this is who I am and will get through this. my girls will grow knowing that I stood by them through this and will through everything I can. I am also worried about Hubby as he also is getting drained as I am and just hope he can stand strong too.

on another front My best Friend (cousin ) sent me an email and we have another in the family with Cancer her niece 22 I think she is, with cervical cancer I wish her all the best, she has a young daughter 6 months Younger than Robyn :( why so many this year and Oh I so hope next years bright and Happy for this Family ☼

ok just needed to get it off my chest had a nap today with Alex and Robyn had a late one so think Ill be up late now :(

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

last 7 days til end of Chemo

well we Had the big Chemo today and Alex has come back neutropenic but the Dr has said go ahead as next week is just one and will not matter what her bloods are and this one will drop them more over the next 7-10 days :( she slept through half of it hehe 4 hr Dose plus the other 2 1/2 hrs on top with the robot.. (IV drip lol)

we have 7 days til the last dose then we go into maintenance mode (what's this no idea they have not really said much only no chemo as of next week plus Ultrasounds and X Rays every few weeks and a CT scan when needed as well the CT is on the cards for the next few weeks too)

she is still having headaches but the Dr is happy to leave them at the moment and to give her PainStop every 6 hrs as needed ( panadeine for kids) I was giving it every 8 hrs when needed as didn't want to give her to much and normal panadol does nothing...we also had to get a plug for her tube so looks like a new tube is going to happen soon!!!!! not looking forward to that day :(  we have found a few families here today that are going into maintenance mode too so has made me feel better about us getting to the end of this phase..
all I know so far is that we will be doing scans etc and every 6 weeks they will access her port to make sure its still working ok til it is removed one day in the future

 we put the Christmas tree up on the weekend as its been a family tradition to do it on the weekend Adelaide does the Christmas Pageant so we still do it even living interstate ( QLD this year)

The girls had a ball I I even video taped it hehe...

ok now its time for us to play Wii Carnival Golf with Alex hehe she is a happy little girl even after all that's happened today so we make the most of every minute now as this has shown me that enjoy the here and now as things can change in seconds so memories are everything♥♥♥

Toilet training

well the last 3 days I have had a almost 3 yr old refuse nappies I am happy with this as she has decided to toilet train not me push her. with all we are dealing with we do not need the added stress now.. Miss Robyn is now on day 3 so far (touch wood) no accidents yesterday was a disaster plus but we had a lady Hubbies work recommended to help with cleaning here and Miss Robyn thinks she is Grandma ( well every female young and old gets called this lol) so she was following her and not interested with the toilet :-/  

Last Night Miss Alex had some unsettled times and by 3am I gave in and gave her painstop to help her settle she keeps saying during the day she has headaches but am not sure its anything only a way to get her own way but in saying that am scared S@#$less to think what else it could be especially this late in treatment we have under 2 weeks to go Monday is the BIG one and we will be at the hospital ALL day for it then the next week is just the small 25 min dose.

got Hubbies Computer back today too so far have had it looked at 3 times & it seams to be working well now ( new graphics care and power supply and $300 gone on it) but he has his domain back hehe.

we will be putting up the Christmas tree this weekend as being a south Australian we always did it the weekend of the adelaide Christmas pageant and will have to email ACCU to get the DVD as my dad :'[ is not here to send the girl one :(

some photos I took for our Christmas cards this year as don't have time think these will do had a play with photoshop E as Photoshop CS3 will not load or reload :(

~Pre Prep Enrollment~

OMG its started SCHOOL My Baby ( Big Girl in her eyes as Miss Robyn is the baby) is starting school I here I look back at My little lady and think where did these last 5 years go :o


<--♥This is Miss Alex the day after she was born July 2004 with her Proud Daddy♥

well today we have taken the step to enrol Miss Alex in Prep for next year yes she is 5 but here in QLD they have to be 5 before the end of June to start that year and Miss Alex turned 5 in July.. we had a open day to check out her teachers and classroom which went well. We have an orientation day in 2 weeks time too this will be a morning with the class etc again for her so Hope she is well that day to do it as its the day After the last Dose of Chemo. plus we will know what the next path for us is... so all paid for the enrolment side start fee's in Jan weekly as its a private school... I am not stressing about spending the extra to send her to this school so far they have 12 preppies enrolled to start :)

we have 2 weeks left to the Last Dose of chemo  I am just sitting Back praying it all goes well as we have had some families at the hospital get news that Chemo is not working and its so sad when we should also be happy.. also last week I met a new family that had just been given the Dreaded news that we all never want to hear that your child has Cancer this is so hard My Dr told me not to worry that they are doing the best they can for everyone and that we all have had hard times with everything our children go through :'( ... Alex has been suffering alot of headaches to so will be bringing this up with the Dr next week again as its scary thinking about any small issue could be bad news.

♥My thoughts and prays go out to all those Mums and Dad's, Son's and Daughter's going down this road with what ever way it goes, I hope you all get some good news ♥ and we all see a cure for this hated disease that takes so many young and Old.♥

November Already

Wow can not believe its November already, we have 3 weeks til Miss Alex's last dose of Chemo and so far all is great. Alex got a visit from Make-a-Wish and she has put in her wish to Make-A-Wish and we are just waiting to see where it goes She so wanted to feed dolphins but they said she was to young and that it is done down in Coffs harbour, I looked up on sea-world as we have tickets to go soon for us all and she may just get in for a swim with me and the Dolphins it will be something we both will cherish ♥ so I can save the money if not she can go alone and we will have the photos and her happiness... this I would do just for her, and our memories ♥♥ Alex asked for a beach holiday and Dolphin feeding!  sea-world do swim, she had a back up wish we had to talk her into like a castle cubby house but we just needed it built so we could dis assemble when we move in 2-4 years time joys of the life we lead.

Halloween has gone by and I took Miss Alex out trick or treating ( yes I know its not really an Aussie thing but so televised) she had a great walk around our local area and even though tired thought it great :)

this week was our third to last chemo week next week is a week off but we also had more ultra sounds and Xray's to keep an eye on those lymph nodes on the Aorta but they seem to be shrinking :D so thats a good thing plus her only remaining Kidney has grown also a good thing (mummy does a happy dance)

Both girls ended up with Croup but it has passed with no major issues in this house. No new news though just waiting on Scan results ( gotta say I hate the waiting but hope the no news is a good thing) Miss Alex keeps asking when her hair will grow back and all I can say is soon think its a Christmas wish hehe she wants to have hair...