Scan day finally

well after some calls and a run around we finally got Alex's date for scans,
Monday the 3rd June and all went well, we met the new oncologist and are now on 4 monthly visits instead of 3 and also may not be having a CT for ages and only if required :)
this is great to know :)

parking was  hard but it was cheaper than in QLD so a bonus,
the hospital trip was very easy and smooth,  a well set out hospital made it so stress free, best hospital trip we have had in ages and that is saying something, long waits didnt happen on this trip.

North Adelaide is busy but wow it was quiet after what we have seen

so happy things are moving forward again and we can now relax for the next few months before Scanxiaty hits again around October. plus a small trip for an orthopedic visit to check Miss Alex's feet as she is so clumsy and did have peripheral neuropathy  or Foot Drop and most know it as, but she is doing well and now we just need to continue helping her to be better at what she does. she is doing well with cheer-leading ( gymnastics ) so that is good and to keep it upas it will help her confidence

busy day tomorrow too Hubby has surgery and may take girls to the zoo if I can swing the price as its the day before pay day!

ready for our first part in a SA relay for Life

I have been talking to the promotional people at Relay for Life Gawler and they have used Alex's photos in their window here to show survivors etc

we are also doing a story on her and us as we are joining in this year again only for the survivors and Carers walk but also want to get involved next year with our own team or join another team ♥
We signed in to join in on the relays quiz night to as it helps them for organising the big day

last Dr and Scans for QLD for us :(

Yesterday was Alex's scan day it was bought forward due to us moving and Dr Tim being on holidays later, we had to sort out scans and stuff for transfer to Adelaide for the new year

Alex had an Ultrasound and Chest X-Ray, all looks good so that is good to hear

this was our last visit to CCS and to the RCH  and a sad day when you get to an end, but also a Milestone that Alex is now 3 years since she finished Treatment next week

we have scans etc to pass onto the new Oncologist we get once we are in SA

Today Robyn got an award from School for always being helpful ♥ and Mummy had to be helpful and step back into Tuckshop for the day as they needed an extra pair of hands and I have helped all year with no issues so was nice :)

September scan day

Yesterday was Scan day again
Alex had an Ultrasound and Chest X-Ray and all is still stable so last night we celebrated that she is a very Healthy and Happy 8 year old ♥

we got to the hospital and got to see the st George people present a check to working wonders for the Floe circus and also Happy Dragon. Plus a Flea circus but we had to leave before it really got started due to appointments :(
we had a quick visit at Radiology but as Alex has had a Bad Cough for a few weeks I grabbed a mask to protect other kids just in case, but she gets this cough 9 months a year with no other issues and have been told it is possible that it may be something we will have to deal with later but why worry now as well we can not do anything about it right now til it shows itself and we are just trying to enjoy what we now have and get back to that New Normal

Robyn and Daddy stayed home as they were sick but they did a Pirate flag ready for Talk Like A Pirate that is on the 19th of September for CCS (Childhood Cancer Support)

♥~ all set for the walk this weekend ~♥ B2B here I come

I am wearing this for the Bridge to Brisbane this weekend
My Hubby airbrushed the art onto my shirt and I took photos and made a Time lapse Video from it
I did forget to turn off auto Focus but hay it is my second Time lapse video so still learning

the shirt

I am Walking the 5km this weekend and my page link is here
Logan's Run Mazzmerise page

Did You Ever "Borrowed Post xx"

Borrowed from a FB group who borrowed it from another
 "Next month in September it will be Childhood cancer Awareness month - please be aware that everyday in this country 46 children are diagnosed and 7 die.... 'stole' this from a caringbridge site - please read and share."

"Did you ever think that the phone could ring and in a matter of a few seconds your life could be forever changed by just a few words…your child has cancer? Neither did I.

Did you ever think that you could hurt so badly (emotionally) that the physical pain of it would be almost unbearable? Would you believe you could feel this way and not shed a tear…for weeks? Because your child is watching.

Did you ever think you could call the local children’s hospital home?

Did you ever think that there would be a day when the family/child featured on the news and in the paper as the reason for fund-raisers to help cover medical expenses would be yours? Me either.

Did you ever think that you would learn the hard way that the very people who you would have bet would have stood by you and your family in difficult times would be the ones to turn their backs on you or turn on you altogether?

Did you ever think that mere acquaintances or even strangers could become your lifelines and be the very hands of God to you and your family in your darkest days and your times of need?

Did you ever think that you would have to watch as medical professionals donned gloves, masks and gowns to protect themselves from the chemo (poison) they inject into your child in hopes of saving her life?

My child was the first pediatric cancer patient I ever met. Unfortunately I now know that it is MUCH too common. Why don’t we see these kids? Because they are in hospitals or home because of compromised immune systems or…they don’t make it.

Did you ever think that you would have to sit in a conference room and make the decision to treat your dying child with a drug that is likely to cause heart damage, brain damage or secondary cancers later in life? Notice I didn’t say possibly, I said LIKELY.

Did you ever think that there would be a day when you could catch a glimpse of your child as she walks through a room and be compelled to follow her, feel her, stare at her,and compare her to siblings side by side because she might look like there is something a little “off”? Did you ever think that these impulses would last for years and that most cancer moms admit that they last a lifetime.

Did you ever think that the glimpse mentioned above can turn your “normal” day into a nightmare complete with the “kicked in the gut” feeling you are all too familiar with these days?

Did you ever think that your purse/car/kitchen junk drawer would all contain tubes of numbing cream, bulldogs (clips for holding a central line up and out of the way), detachol (medical adhesive remover), zofran (for nausea), a thermometer, and 5/8 needles (because home health always brings the ¾ size that don’t work on a fickle port).

Did you ever think you would have to explain to your other children that their sister might die?

Did you ever think you would have to tell your child that her friend, another child with the same dx has died?

Did you think you would ever have to see the fear in your child’s eyes that relapse could happen to them, too?

Did you ever think that you would watch your child’s doctors talking in the hallway and try to read their facial expressions to prepare yourself for what you are sure is bad news?

Did you think you would ever have to stifle the anger that you feel when people or organizations brag about the millions of dollars they have spent to “beautify” buildings, cities or whatever when you know that if that money had been spent on pediatric cancer research there would be many, MANY more survivors 10 years from now.

Did you ever think that you could feel guilt when your child is doing well and others is not.

Did you ever think that even when your child is doing exceptionally well that your joy could be robbed with fear and dread ? Of course, you just read another child’s blog and learned that while she seemed perfectly happy and healthy 10 days ago she has since been dx’d with relapse and is in the PICU in a coma and brain damage and might not live through the night. This child, could be your child in 10 days.

All of this has happened to us. September is childhood cancer awareness month. Every single day 46 children are diagnosed with cancer. Every single day 7 children die of cancer. The incidence of cancer has increased 30% in the past 30 years. We don’t know why. Cancer most commonly affects previously healthy children with no history of pediatric cancer in their family.

Cancer is an equal opportunity disease. It doesn’t care if you are wealthy or poor, male or female, young or old, black, white or any other color or where you live. All of our children are at risk. Cancer is the number one killer of children by disease. More than AIDS, asthma, and cystic fibrosis combined yet only one new cancer drug has been created in the past 30 years.

Pediatric cancer patients and their families are not usually circulating in society and I believe that is why there is so little awareness. That is why, as my child is venturing back out into the world, I will live in a fishbowl and share our story."

today 3 years ago

March the 22nd 2009 the Day I finally got into a Dr's a Sunday at that but we get told she has a lump (tumor) on her Liver and possibly just FAT!!! we are told to get in for urgent Ultrasound the next day asap on Monday, no instructions about this scan only asap, so today 3 years ago I take both girls to imaging for Alex to have a scan, we got sent away as Alex had to fast so we went window shopping for a little while, the sonographer does her work then gets up with a worried look and brings another person in to double check the scans, this is alarming me but I am staying calm for Both girls and trying to keep a steady head, they ask about a CT scan I was not asked to get one so they call the referring Dr and Alex gets a Chest X-Ray before we are sent straight back to the Dr with only the scans and nor report???

we are told by the Dr to go straight to the Mater Hospital in Brisbane as he suspected its definatly a tumor and we would see our little lady get very sick before she gets better ( no mention of Cancer as a word and still the liver) but we did understand what was happening and I was fighting to stay calm for the girls still.

while walking to the car I called home hoping to Catch Pete before he went in for afternoon shift but I just missed him so I called the mobile and he called back with-in minutes even before I had got into the car, we decided that he would come home and we would all go in together lucky the GPS on my phone works ok? we had no idea where we were going? 

at the mater we waited for 5 hours before we were seen again she was not urgent and in no real pain? once in the Dr said its a Kidney Tumor and excessively large so we were referred to the Royal Children 's Hospital as they have Oncology ( we now knew it was cancer 100%)  we get instructions to the next hospital and they gave us sandwiches and we were back on the road seeing Brisbane in the Night lights, 

the the RCH we had been referred to a specific oncologist and told he is one of the best (Dr Tim Hassall) he told us what he though she had and that it was on the verge of rupture which will make things 100% worse if that happens due to massive spreading so she was admitted straight away

sorry for the marathon page you can read  this back in May 2009 may be slightly different as aI remember more or forget details but it is still there like a reminder that things can change in a heart beat but I am so grateful to see my girls every day enjoying life to the max ♥

January 2009

February 2009

March 2009 before diagnosis

April 2009 after Alex was diagnosed and started treatment RC HB

time to go home April 1st 2009

hair loss started April 2009

Alexandria today March 2012

so today is burnt into my mind and every year I am grateful for what we still have, I would like to see no child go through what Alex has been through so we need a cure,

always let those you love know how you feel, we are only here for who knows how long and we never know what tomorrow holds for anyone.

Happy Harmony day to all for Yesterday as we celebrate diversity and enjoy all cultures ♥
Harmony Day is celebrated around Australia on 21 March each year. It's a day when all Australians celebrate our cultural diversity
Harmony Day

6th March Ultrasound and Xray

Traffic at a Crawl 

we had an ECCO today like an ultrasound done on the heart to make sure she is fine and the Chemo has not done damage to the heart this was at 8.30am so a big day again :/  we had traffic issues on the way in and I had to call at 8am to let them know we were still held up in traffic and would be late, we arrived at CCS at 845 and I rang their office hoping someone may be there so I could get a lift to the RCH and get there sooner and was lucky I had just missed Margie she had just dropped another family at the hospital and they had also just said that I had just pulled in as they left but we got a lift and rushed up to weigh in and then wait for Alex to be called out, we get called in just after 9am and all looks good so we then head straight down to radiology for a 9.30am Ultrasound and then Chest X-Ray these show any change in her chest and abdomen and will let the Dr's know if the Cancer is reoccurring but we have been so blessed that she has stayed clear everywhere and Stable on the mass that was in-operable♥ they still have issues finding the mass near her aorta but it all looks good so that is all I needed and back out to the waiting room for the X-Ray when in Walks Alex's Favorite Nurse Jerry from when she was sick he is looking good and I grab a photo :) he was surprised at how well Alex is doing and even more so when I told him Miss (Trouble) Robyn is now a prep in school and 5 :o
Alex had her snacks while we waited then some lessons at RCH school in outies and then in to see Dr Tim, All looking good and he is happy with Alex :) said her kidney pain could be growing pains but everything is the same and looks good :)
we head out and make next appointment in June  ( back to Wednesdays ) for a CT scan so contrast and IV  then head out to call and get a lift back to the car at CCS.

I called CCS the other night as we would be there before anyone was available to get a park. as this is not our normal day we go Wednesdays Normally but today is Tuesday due to ECCO, and all is ok just parked and caught up after for coffee and chat

Ultrasound 

with Jerry ♥

having a snack break and sitting on the croc

construction in park over road

This would have been a day I needed Robyn picked up from home and possibly school also, but she has not been well all week with a fever so no school today, she stayed home with daddy, on a good note Robyn is looking like herself now and fever has broken  so both back to school tomorrow :)

last week Robyn had her dentist appointment and the broken tooth is an issue it could be broken and I am waiting on a call back as to what they will do next? it is possible that they will pull that tooth as it is loose and hopefully has not effected the gum and bone underneath, the private dentist didnt even XRay that tooth so hope all is ok ( I worry about Robyn too she is my Baby )

Robyn getting her first X-Ray (dental though)

Robyn sitting in the dental chair

I have also got paperwork for the girls to go on Junior Camp this year and they are looking forward to it in April off to the circus then camp and lots of fun will get full details later and where drop off and pick up will be at a closer date, now Mummy and Daddy will have a weekend of quiet to maybe catch a movie and Dinner plus just some relaxation time ♥

CT scan and Oncologist appointment

today is scan day again and this one is for a CT with oral and IV contrast, Alex's appointment was at 1.30pm so a later one and she had to be at Banksia outies around 11.30am to start everything.
we had heavy traffic heading in and some rain ( not enough though) finally made it to CCS and joined in with the morning tea and crafts Alex and I made reindeer and book marks ( I joined in so Robyn got one too )
we then got a lift to the RCH just up the road and started the day in out-patience ( Banksia) with emla cream on 4 spots and weigh in she has lost a little weight but has grown so evens out some :) weight 26.7 kg and height 121cm
obs done all looked good except she was a little on the lethargic side, she started Contrast soon after that and we had to wait out an hour for cream (emla sort of) to cook, then they came up and asked when she had finished her last drink she was just starting so we had to finish that get canula inserted then head straight to Radiology for the CT so we arrived just before set time and she went in just after set time of 1.30pm,

then back to Banksia to wait to see Dr Tim, it was a busy day today too and he was very behind we knew at 3pm I would not be making it home to pick up Robyn so called home and Hubby got Childcare to drop her home. Alex was enjoying the afternoon just wanting to have her hand back but had to wait for the go ahead from The Dr. while waiting Alex played with two little girls while they waited for their chemo to finish, and they giggled and were having a ball ♥

we finally got into see Dr Tim at about 4.20pm and then had a chat checked scans and all looks stable ( best news of the day and what a Great Christmas Present for us) then organised next scan March 2012, he didn't think we needed bloods so that was a plus too. we finally got out of the hospital and walked down to CCS to get car and to pick up My calender from BRCH Families, Thanks to another mum I know online but is also a Banksia regular ♥

and finally home to enjoy the Christmas season now with no stress for another 3 months, booked in for ECCO, Ultrasound and Chest XRay so will be another long day but how can I complain when we only go what every 3 months I am happy to wait and get the results I need to hear :) but after being in there every week this is great ♥

hiding behind Immy's Robot while playing together

Alex and her favorite oncologist, Dr Tim
Hassall

Cancer it is always there but we need to grow around it so yes she is not in Remission but she is enjoying life now and that is the best gift, we will stand strong against everything she goes through one small step at a Time

2011 Toy Run

last weekend we finally got the Christmas tree up so behind but girls were misbehaving to so that also stalled the tree,

our Christmas tree

today is Ipswich's Toy run and DH joined in with Ren (Serenity) the Harley Davidson he owns, the girls enjoyed the day too they get to see lots of Motor bikes dressed up for the festive season,
we decorated Ren ready for today and she had some gifts for special little people ( 2 tennis rackets for older kids and a Big reindeer :) )

September scan day

7th September is Alex's scan day and we get to have Ultrasound and X-Ray instead of another CT so less radiation for My Princess and no needles again ♥ 11am for these scans so she must fast for 6 hours before the scan :( not an easy thing to do when she loves to eat but they need the tummy empty to see all that needs to be seen ( tumor near aorta is hidden by the tummy most times. ) I called CCS about parking there and dropping all the toys the girls have either grown out of or no longer need for the families.

scans came back same or close to same so no real change :) but like some days they forgot the tumors near the aorta so we got called back in this is hard to find due to bowel and stomach being in the way so she gets grizzly after this plus being hungry  (VERY HUNGRY). we then waited in the waiting room  not very long for the chest X-Ray to be done before heading up to Banksia to see Dr Tim.  Alex loves her oncologist and she gets excited when he calls her in :)
The Dr was happy with all Alex has and is doing, we just need to watch the pain in her leg and neck but could be growing pains.(Alex has had pain in her bones and tummy the last few weeks so a little worried about this but staying positive plus having a friend up helped keep scanxiety at bay) Alex is now 25.3kg and 119cm tall even the nurses that have not seen her in some time told her to stop growing lol. we got more bravery beads to continue the chain for her and still waiting on the blood transfusion one (2) and some more for injections etc but should get them in Dec when we go back for the next scan.

Dec is booked in for a CT as she has not had one in a little and these like MRI's show more info for the Dr's Alex is also due a ECCO at the end of the year  to check her heart, ( one of the chemo's can have delayed issues after treatment and we do not what that) we will book that at the next appointment and will be done in the new year.

watching the magic school bus

 playing in the RCH playground

 CCS playground

Sitting in front seat for a little drive ( now she is 7 she can but still a little unsure about it myself she is still small she didn't stay long as seat-belt is a little high still so back into the back seat)

Tomorrow is my scans and Dr's appointment to see blood results plus car in for service, then I wait til Oct for gyno appointment to see what I can do more to improve my iron levels or why I am anaemic,