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."

~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

CT day

Well today was a nice cool day to drive into Brisbane at least the girls stayed asleep right up til we where about to leave, Alex didn't want to go nothing new there. on the drive in we had to start the ORAL contrast YUCK but she has the NGT so that helps alot with getting it down at the right times :) then we arrive at out-patience and she gets bloods done etc while we wait out the time for the CT, then off to radiology, as we are walking down I said to Alex here we go to see the donut ( what she calls it ) but she goes I don't like the Donut it makes my bottom and tummy hurt :(  but in saying that she did very well as they had me stay out of the room. they did think about taking the NGT out but was glad they didn't have to as its not something I wanted to go through again :(
then back to outies to wait to see the Dr and the girls start getting restless so we head out to the play ground for some fun while waiting and then off to the cafe for a small lunch then back to outies for more waiting...

They De access her port so her bloods must have been good but we still had a wait for the Dr. finally get in to see Dr Tim and looking out the window it started to rain heavily  I said Oh No I have towels on the line and Dr Tim goes "Bugger Bugger Bugger we have washing on the line too" hehe. but we get scan results and  blood results bloods good but she is still neutropenic ( VERY LOW so have to watch temps as a fever means a trip to hospital asap) then scan results the (Cancer tumors that are on the lymph nodes AORTA have definitely shrunk good news but their is a spot (shadow ) on her lung that will need to be watched its very small but just have to wait and see it may vanish with time.
so we finally get out have to book for another CT in Jan 2010 and an appointment for port access with bloods plus see Dr.Tim just before new year have to get a blood test next week too but may get that done here at Ipswich save the drive to brisbane...