Scan results and home, "updated with photo's"

We got a visit from Alex's Dr at 6.30pm he even told us the scan was good no change WooHoo. We are back on 6 weekly visits but mainly due to port flush so will be making appointment for mid September,

Had to wait on the Dr's to do rounds so we could go home, but they do have a few wards and oncologists are always busy here, now waiting on heprin (this is to lock her port from blockages etc ) then down to radiology to make the next scan appointment for 6 weeks time 15 th September  Alex slept well last night and also has had no pain with no.1 or no.2's so another good thing to see, Daddy is missing his big girl but think Robyn is keeping him busy lol. Brisbane was cool and foggy again this morning,

We have approval for vitamins now too so will get them to keep her immune system fighting,

Dr Reddy

Dr Kaffuffle

CT scan etc

Alex has been a good girl with fasting etc. She doesn't need a general so not sure why she had to fast, she is very good at laying very still for the CT (donut to her)
We have seen 5 Dr's today alot are training etc, they are just making sure all is good before we leave.
plus 2 clown Dr's who made Alex's day hehe we could not stop laughing at them, i do have photos just have to wait as they are on my camera and need the computer to get them on here, Alex has her camera too so lots of photos of the pictures in her room.
We are staying a second night so hope to be home tomorrow. They want to know what is causing her infection, so the extra night to be sure its all good, they had to redress her port as it was weeping and sore so Alex was not happy til it was over,
We have seen alot of rain today and last night,
Alex''s new saying and mine to is "Cancer, cancer, stay away, never come back here to play." she is so funny sometimes.
Am missing miss Robyn and daddy though, just glad its not a regular thing to be here, we are at 6 weekly port flush and 8 weekly scans (CT one and ultrasound and XRay the opposite )

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

Photos

here are some Photos of the girls. no news as Alex's temp is still stable she feels hot but is in normal range on 2 thermometers. I know its a UTI and the CT tomorrow will show me all is still stable and good

 Robyn playing leapster2 being a good girl, Alex having milk in Robyn's cup hehe, she has red blood shot eyes :(  but can still try for a smile, she is glad to be staying home today

not really an update just me thinking staying positive etc ☼

Infection confirmed...

We ended up going to a clinic and getting Alex checked out under oncology orders they decided they want to know asap if it is UTI and start her on Antibiotics asap. we will know fully in 3 days.
we only just got in, had to wait around for 2 hrs ( better then DEM here in Ipswich would have been 6+ ) she went to toilet while waiting which I got a cup to get the sample before I needed to fight for one. but then I noticed a discharge also in her underpants, this freaked me out but as the scans the other week where clear or no change I was thinking infection, we got in just before close and they had prelim results on her Urine sample
she had a definite infection with blood present and a few other things but no ketones, so we signed of on getting results which will be 3 days, and antibiotics then home. we are on watch for fevers and so forth but will be at the RCH on Wednesday for the CT so if she spikes a fever its RCH asap that way we are there for the needed scan etc and they will do fluids etc to help flush her system, just hope its nothing serious causing the UTI, she will stay home tomorrow just in-case she has accidents etc and I can watch her this way too.

Ok I am off to bed as well the next 24-36 hrs are going to be busy...

no more issues Please.......

We had Alex sick with a UTI 3 weeks ago, and now looks like its back just waiting on a call back from our Oncologist as to what we should do next, we are in on Wednesday anyway for CT and bloods plus Dr appointment, so its just to see what they want to do, she is saying it hurts when she does No.1 and she eats Yoghurt etc and drinks lots of water, hope its nothing, but I do stress on everything (sometimes feel like a hypochondriac ) I do know its an issue for kidneys etc when they have UTI's etc and well she only has one Kidney!!! so am only making sure she is looked after so we can stay healthy and move on ♥ I am a good Mother and just looking out for my Girls (Both)

we also have Miss Robyn sick with a cold not bad just a viral infection Dr is happy with just panadol etc for her so no meds :)

Small Steps Forward....

I have started to really try not think about what can happen etc as I need to focus on us (here and Now)  plus this has helped me to stop stressing over everything too. Alex has started getting tummy aches again today and the school have a big excursion to the Baptist church for the day so she will have a fun day to keep her mind away from her aches, yes I stress but hope as the Ultrasound showed nothing that its just growing pains plus we have the CT on wednesday so will know more if there are issues then, as they are also doing follow up bloods to make sure the counts are back to normal again

we finally got Hubbies Tax done so now the waiting begins and well looks like it will go on My car rego and a cheap reliable car for Hubby in those emergency days we need one. I put 2 new booster seats on Layby so that we can get them once we have the car  will also get a Harness for Miss Robyn as she is still under 4 so needs the harness but will be safe then :) the car will help us when its wet or if I am stuck anywhere with either child so Hubby can do the pick-ups or drop-offs, we just need to find a good one that will not cost us more than we have to spend :( as rego etc is still going to kill us as we have a family car and a Motor bike already to keep on the road.

Today is 1 yr since dads Funeral I was in Adelaide this time last year with Robyn. do miss my friends in adelaide but hope to get back one day soon to catch up again. but in saying that it also will always depend on how things are going in this household (health wise etc.) but will not say more as want to stay focused on the good and attract the good :)

Robyn is finally dry all day now so Nappies are slowly becoming a thing of the past :) and she has slept all night the last 3 nights in her own bed (still has 1 breastfeed a day though)  the child care are worried though as she has become clingy but think that is due to the other week when Alex was addmitted and she didnt get picked up by Mummy ♥ she is a strong willed Child so she was good for Daddy and has grown up so much of late...

both girls are doing well Alex's Maths at school has really improved we are also doing lots of sight words this term :) fun fun fun she just is like a computer wanting to learn more and more she is so hungry for it all. Miss Robyn is good to she can now recognise numbers when we are out and about hehe

today is Christmas in July at Hubbies work, so we all went with Hubby to have Dinner and the girls had fun they had pony rides and petting animals plus a Visit from the Jolly Fat man in red hehe, we didnt stay long enough to see him though as both girls where tired and Alex still had a sore tummy, it was her chest actually as I finally got it out of her were it was hurting, she may have a cold so will be waiting on the CT results as I am trying to stop being so over protective and paraniod "well on the outside for others" as I think people think I am insane sometimes and dont want to lose friends over this I need friends to be able to talk etc but only have a few.

I have never done Christmas in July so this was fun for us all,  and got to catch up with a friend who we get to see occassionally up here and have known them since NSW :)

I did have to miss Belly Dancing so will start going back next week :)   but am thinking that pay thursdays may start being this so may have to check out the other days Belly dancing is on

all the animals here are from the same place as the last trip to the hospital even the lady in the pet part was the same :) Alex loved it but still no Piggy as they had no baby pigs to bring along, but we did see baby chickens etc :) and they had Ponies for a ride ♥ my girls are just like mummy and love horses ♥

Birthday Party ♥

we decided to have a Party for Alex and did invites in the Lady Bug design ( the wings opened etc) we chose a pirate and princess theme as to Alex's choice. I made Pirate invites too for the boys so they could take them :)

we got everything sorted and set about having a great day even if it was just the 4 of us ( hence Daddy and me having costumes ♥)

we ended up with a wonderful day of 5 children with their Mums ( thanks to all) and it was great not to big but the children enjoyed the party etc,
we then went out for Dinner at a friends place ( they came to the party) and the girls got to play even more, I stayed in my pirate wench costume hehe was a good night had by all..

I have larengitis at the moment and I am sure the girls know mummy can not yell at them so I see them be good when I am around but when My back is turned they fight, but must say they do love each other ♥

Alex had a ball with her friends and is taking a couple of photos to show her teacher today at School. she also finished her antibiotics for her infection last night so hope it doesn't come back we have 9 days to the CT and Dr/hospital trip and yes scanxiety has started ( well really didnt get a chance to stop :o  ) but I have had a party to keep me focused on

Alex got a Push bike but it has no training wheels and is a little big from a friend in SA so we will buy the training wheels this week so she can Ride it, she also got a helmet etc from us, Grandma & grandpa sent her a My little pony birthday set, she got a few drawing /crafty things as she loves to draw etc ♥ and a areal she loves mermaids lol (barbie sort off ♥)

Sunday was a day to recover and clean up hehe well not much as we did cleaning while the party was on to keep place tidy etc.

Thanks to everyone that wished us both a happy Birthday and those that could come to her party and Celebration of Life I am so happy with how it all turned out and that we had  good small turnout with fun Games and laughter ♥

Birthday Time again

Yeap I have changed the Blog again hehe though we needed a change and an updated Photo up top ♥

well I had my Birthday yesterday and Thanks everyone on Fackbook for all those birthday wishes ♥.. I had the day to myself Alex was at school and Robyn Child care day woohoo I did nothing lol lazed around had a bath and window shopping ROFL...

Alex sang Happy birthday to me in the morning and yes she will tell you how old Mummy is :o but she tells me I am not old I am Mummy with such love ♥♥

Today is Miss Alex's Birthday she has turned 6 she is having cake at school today :) and we decided on a party this weekend she has a couple of friends from school coming over we will play a couple of games etc but nothing big its a celebration of Life and may we have many more ♥  we bought a totem tennis game today for the girls and a Bike helmet each ( Robyn will get hers at Xmas as she gets a bike then but Alex will have hers either today or Saturday as she gets a bike from a friend in SA ♥

we also got a Wii game that we can play with the girls so Friday night wii nights are back on hehe ("Bring it on" Hubby would Say) haha, have been thinking of getting the VIP passes  for the theme parks but Hubby thinks its a waste of money as we have done them now but at least this way we can go any time and are covered for a yr and well get money back with only 2 entries!!! will see how we are by tax returns and bite the bullet,

but saying that Tax will be spent on a second cheap Reliable car due to last weeks stay in RCH it has become hard to find some to pick Robyn up and well if we have to have a long stay Hubby needs to take Robyn daily ( Or if its Robyn in for any unknown reason) Alex to school etc before and after work we can not afford him taking to much time off work even though they have been wonderful so far ♥

these last photos are just some random ones with 4 from last week in the RCH Open day and the Puppy is the pets for therapy program that goes around the wards :) Alex almost missed this as we were discharging as they came in :)

***  on a good Note we are seeing the old Alex she has her appetite back and is herself still some pain but not as bad and well scans were clear so will see what happens on the 28th of July when we have her CT done and bloods, hoping all is back to normal or getting there.we also get to see our Dr as he was on holidays and well he is a wonderful Dr who works very hard and is at the RCH til all hours some days so hope he had a good Holiday

the little things we overlook in life

Enjoy the little things in life, for one day you may look back and realize they were the big things....Inspirational Quotes by (Antonio Smith).



well we are home and Alex has improved heaps she is eating and tummy pains have gone I am so happy that we caught the infection when we did but still feel like a fool by bringing it up as people keep telling me we are out of the woods ( they do not understand the stress and thought pattern of a cancer mum), the Dr's did everything due to her history and so far all is looking good we now have bloods to be done at the CT date and hope the levels are back to normal and she is on the road to recovery, they think we caught the urinary tract infection early and this can be bad for anyone if left untreated but even worse for a person with one kidney, I yes feel bad for dragging her through it all but her health is my first importance, I am still new to all this as its 16 months since she was diagnosed and we are almost at 8 month post treatment woohoo.



Miss Robyn is doing great too Toilet training is slow but I must say she has had good days plus last night she slept in her own bed ALL NIGHT ♥



we are enjoying the small things, last night Alex was on the toilet and she takes her pants off and leaves them on the floor when she finished she was getting dressed and trying to put her pants ( long Jammies) on by the leg bottom I cracked up laughing and she joined in with me I felt so happy and told her she was being silly and her reply was "No mum you are silly" and she giggled again


I am so proud of her ( well Both my girls) Alex is taking her oral meds without an issue this not even 12 months ago was a big issue for us but now she just takes it and moves on
 
also I have been watching a miracle at work with a young boy Connor who lives in South Africa, I follow his mums page on CB (CaringBridge)            
    Connors Page
end of last month his family had decided to go home on Hospice care and as Neuroblastoma had spread through his bone marrow and there were no further treatment options
they went in this last week just for scans and blood counts so Dr did Bone marrow biopsy and would you believe it that its all clear, this is truly a miracle in the making and I pray this family keep moving forward with this battle ( Gods will be done ♥)

Homeward bounds

We had ultrasound at 12. They were running a little late, they checked everywhere (so i thought) all looked good so back to room to wait for Dr. 2 hrs later and then we are wanted back at ultrasound so off we go again. They did not check the nodes as they lie in a hard position to see and Now every time we have ultrasound we have to tell them to check just below the renal artery as that is not an area they check unless they are told, the nodes no change but look smaller than ct this does not mean they are as the CT Gets a clearer picture, but they are stable still. One big sigh from mummy after hearing that, Dr finally arrive and was thinking to keep her over night on antibiotics but they decided to let us go home. So antibiotics go through iv one last time, then flush and heparin before de access. Then down to pharmacy before 5pm for oral antibiotics and then hit the highway in peak traffic.

Alex has ordered pizza for dinner so why not hehe after hospital food lol 

Note to self re-park bag as you just never know when its needed again. I will always worry suppose its the cancer mum motto worry about everything as we know the hard truth about the disease our children have, call me paranoid if you want i am not ( yes feel it a lot) but must cover every base (will i ever relax no its always going to be there but i can make the most of what i have)

Day 2

On ward the nurses got an extra meal for me, Alex picked at hers though :( nothing new but will be happy to see her eat normally, they also found a charger for my phone so can post and keep hubby updated. Alex was given antibiotics over night with fluids + potassium, she slept well with no pain so hope that is a good sign that the infection is being fought off. They came in every hour to do obbs and reset IV before it beeped.

The ward was quietish we could not get onto the oncology ward so are in surf this is pre and post opp plus burns ICU etc. So can by busy

She was woken at 5.15am to have bloods and breaky before the fast for ultrasound at 11.45am. We then tried to get a little more sleep. With Alex sleeping til 7.30am and through the jack hammer next door, daddy called to fill me in on home and miss Robyn has been using the toilet with no fight and she slept in her own bed all night, so proud of her,

Alex's tummy was sore lower this morning when she went to the toilet I told nurses, she went again and now has diarrhea poor kid what next, it seams that someone wanted us here for this scan etc but just hopeing its clear,

Paranoid mum

Well look at me posting on my phone
Today was to be a normal trip port flush and out. We arrived and all was good. Then we tell staff about her tummy and they get the resident to check her over. Weight etc done no issues. Dr makes appointment for friday ultrasound and to see attending. our dr is away on holidays with his family. They access port no issues flush but still trouble drawing bloods. Not a big deal as we dont get bloods. They de access and the dr walks in wanting bloods argh so re access and try again. No luck so we go down stairs for finger prick and to wait out getting a urine sample. The hospital has an open day so we check it out. All good alex was in the back when they filmed a bit for kerryann show hehe. Still all good she pats animals and we wash hands. She gets face painted still all good. Off to toilet to get that sample so we can go home she starts saying her face hurts so i took off the face paint. She said her head hurts still we got sample took it in and she coughed that was it she threw up all over herself 3 times some one gave me a towel [the only day we have no spew bag] ring onc to see what they sugest and back to banksia outpatience we go. Get isolated incase it is a tummy bug. Wait around to see 3 dr's her bloods are iffy white cells elevated etc and keytones in her urine. At first we get told can go home and keep fluids then they say no due to looking at her chart. They bought forward ultrasound to tomorrow now. She is on iv anti biotics over night with fluids to keep her hydrated. Port access went well second time with blood draw too. Now waiting on a bed and see what is ahead of us tomorrow.

Port Flush RCH Trip

well tomorrow is the 6 weekly port flush we have to have so off to the RCH at 7.30am and in and out in minutes (I can Hope lol) I am going to mention Alex's Tummy to the staff at Banksia Onc/hem unit as she was in so much discomfort last night and now her appitite is dropping she is hungry but only eats half her normal amount I did get a tub of Yoghurt in though hehe, she is still bright mostly but I just worry as per last post about her for any reason especially when it is so similar to what we had 16 months ago when she was first Diagnosed, have been told by many its growing pains and scar tissue healing etc especially with the Cold weather (0 -1 over night occassionally Brrr)

Today she has been great helping me to clean up all their toys etc ( even though she is tired she still did so much and is now watching Nick Jr hehe) we have planned a Birthday Party next weekend as she missed it last year as we all did and well we are on the unknown Road now so want to celebrate her Life 6 yrs old on the 15th July and will be almost 8 months post treatment ☺

we will do a BBQ Dinner after or something as it is also My Birthday that week (14th) she was the Best Birthday Present I could Ask for ♥