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."

Radiation has finished

On a good note on the 1st of July Miss Alex had her last day at Radiation, the people from LA5 at RBH threw her a party too, lollies, balloons etc even a bear called bertrum bear ♥

She had a few side effects, like loose bowels and bad tummy pains plus nausea, but they are starting to pass now finally, she is so happy to be home and is enjoying driving Daddy up the wall with "Daddy Play the game" lol either the Wii on xbox she doesnt care as long as its about her and the game hehe,

we are off to an open day today so will get some photos of that too be good to get out she will miss out on some of the fun though like jumpy castle etc.

here is a photo from friday the 3rd July enjoying some sunshine ( with wind and wearing their hats like good girls

My Dad has gone Missing :(

Well we are getting to the end of Miss Alex's Radiation and she has been a dream for the staff at LA5 stays still and its all done in minutes, miss Robyn is not given much time to get restless either, on Wednesday my Dads lady friend called as she had not seen my dad in a few days plus she had some money for him, so was not like dad to show up to collect it, this started me stressing so called my sister as they are all in SA and I am in QLD not actually close enough to get in the car and go check, I was on my way to the wonder factory with the Girls to see Dorothy too so tried to keep them happy and kept going, the Girls had a great time.

Above: Miss A on the radiation table 4 days left of treatment

Thursday we get told we are having a day off on friday so woohoo a long weekend at home and also told Radiation finishes on wednesday the next week a week earlier than first thought "Happy Dance" at this but still stressing in the back of my mind over my dad.

Dorothy at the wonder factory,

Thursday arvo we finally get home and then we start calling everyone to get more of an idea, after so many with no idea, My sister said she would go up but no luck there she stayed home til Friday and went up, so Hubby and I decided to call the police as it had been 4 days since anyone had seen him, a missing persons report was filed, My sister got up there on friday and found his wallet, Mobile Phone, keys etc and no sign of him. The not knowing is the worst,

I will be back in Brisbane for the week again with a possibility of coming home on wednesday (I HOPE!!!) but now Hubby will be doing the leg work for us up here about my Dad, have added
some photos of Dorothy 12 days down and only 3 to go was changed to 15 days woohoo bring on wednesday when we can stay at home for the week and weekend, but have to say have met some lovely people in the hospital and lodge that are on similar roads and now I look at people with a different eye went shopping and everyone that coughed got a scorned look from me ( stay away from my Baby girl :( )
♥My Dad the first is taken in may when he shaved his head for Miss A T the second is taken when Miss A was 7 months old she has only seen him 2 times when she was 7 mths old and 18 months old, Miss R has yet to meet him as SA is so far away for us :( ♥

on a good note Miss Alex turns 5 in under 3 weeks and we got a free pass from my fun but due to Dr's orders we will not be going just yet so I got a call from them and after telling them what we are going through they have postponed her free entry til jan 10 so we bought tickets for us all so looking forward to going when we get to the end Movie world and sea world we will get there soon :) got tickets cheap for both so decided to grab them now. ( I will be 40 the day before Miss Alex's Birthday OMG I feel old now)

~1st week Radiation~

well on the 9th we went in and stayed in Brissy at Leanard lodge, was booked in for 3 nights til Friday arvo.

Tuesday the 9th was Chemo in the morning and had a talk with the dietition and Dr about the amount Miss Alex was eating, (not enough) so was given some polyjoule to try get her more carbs and was told to come back in 2 days to see Dr again and take the next step, she had lost 500g since last week 8 days, we then had chemo and then off to the last play session at radiation. Miss Robyn decided today was a good day to play up too :S

wednesday the 10th was the 1st day of Radiation was nervous and not even me having it Miss Alex did wonderfully and layed so still for them she was a gem♥ the people thought it was great that a 4yr old (almost 5) could be so calm etc♥ she got some stickers after and we went to the wonder factory to play and paint after this gave me a break from trying to entertain them both hehe

Thursday the 11th had a Dr's appointment at 9am then Radiation at 10.30am they weighed Miss Alex and another 100g down :( so was told we would be getting a NGT ( Tube feeding through the nose) and that she would be admitted to a ward for the night to settle in with it all plus I would need training to use the equipment, so had to come back after Radiation to do this, She also had slight sniffles so she wore a mask til they cleared her as being not sick and looks like its hayfever like mummy lol, I was worried about the admittance as I had Miss Robyn with me and no one could stay on ward with Miss Alex, but they fixed it so we both got to stay :) was so happy about that ♥ Miss Alex worked herself up after we got back as she didnt want the tube but once it was done was fine then it was a waiting game we had chips for lunch and waited to be admitted as all beds where full, we ended up on a different ward and was not oncology so they had no idea how to deal with her as she had chemo in the last few days etc, but someone came and filled them in on what needs to be done ( not much as I was with her and we had our own bathroom lol) they started feeds soon after a slow one over night then bolar feed during the day which I watched as wanted to learn as much as possible, on friday they showed me how to use the machine I was given and we where finally ready to come home, great Friday traffic in Brisbane after 3pm :o not good took us 2 hrs with 2 accidents on the roads plus I witnessed one on Ipswich motor way heading in just after redbank plaza :o was so glad to finally get home, I had no issues with the feeds and Miss Alex was great telling daddy how it all works. Miss Robyn wants one now but not going there lol she wants to be like her big sister ♥

so here I am doing washing etc ready to start again on monday week 2 ( 3 days down and 17 to go)

Brissy here we come

A Sig I had made for Miss A They did a beautiful job too ♥

Daddy playing with the girls 7/6/09

well we are all set to head into Brisbane on Tuesday morning, Miss Alex has Chemo as well as a Radiation play date we start the radiation on Wednesday, I am worried as Miss Alex is not eating enough but the Dietitian will check her out Tuesday to see what we can do next. she does ask for food but has gone off milk and refuses the pediasure, so is only grazing all day, she has improved since the nausea has passed so that's good but the Radiation will bring that back in a

week or so and may put her off food again. ( I'm a worry wort of a mother ).

been making the most of the time home giving the girls play time with Daddy as he stays home and telling them whats going to happen have promised to take them to the Wonder factory to play occasionally too ( this will give me a break and will be able to get online occasionally to check a couple of sites not all they block some,)

Miss Alex lost in thought 6/6/09

Miss Robyn 06/06/09

OK here are some pics of the girls too.

Sorry there is not much in this post but will update next weekend when I get back and so forth as staying in there during the week and home for weekends

Both Girls having fun outside today and being good models for mummy ♥ 7/6/09