In our house two words are a way of life. I'm Fine, help please, Dad holidays?, hospital finished, Matthew's home, Lizzy's Blanks, Hiiiiiii Mel, TV week, tall chippies, stay here, mummy said!, morning sunshine, Melbourne crap, Ali stay and lots more to help Lizzy get her point across, Two words, that as a family, we hear way to much is WATCH WAIT. It seems we are always on the watch for something when it comes to Lizzy's life. Watch for any extra bruises, high temps, bleeding more, weight loss, more pains and Lizzy not being her super girl self. Wait is the hardest for me. Every morning I wake up and wait for the magical words " Morning Sunshine!" to echo around our house. Some mornings it's with a bright and happy voice and other days it is with help mum mease!
When ever we go to Melbourne, which has slowed down heaps, we are told to watch Lizzy. Keep an eye on her and wait for the results!!! As a helicopter mum I find both these words soooooo hard! I'm a watcher, but waiting is like looking at that Christmas present under the tree and not being able to unwrap it till everyone is awake!!
Christmas is HUGE in the Knox house. Lizzy and I LOVE a spot of Christmas cheer, a santa or 2 or 6, a decoration on every door, box, window ledge, tea towel, chocolate and bon bon. Dave always says Santa has thrown up in the lounge room again. This year we started the decorations a little early as we go back to Melbourne for a stay right up to Christmas week. This is the 2nd Christmas visit we have had to Melbourne and last year was a shock to us all. Soooooooo this year the presents are wrapped, the cards are written and the bags are packed to return to the crazy, busy, everyone looking at the Myer Christmas window Melbourne.
As amazing as the Royal Children's Hospital is, there is no place like home especially at Christmas time.
2016 has shown us some big ups and downs.
Lizzy's Blanks continues to grow and THANKS to Viv, Jeff & the girls at KINGSMEADOWS NEWS & LOTTO and CHELS & the Girls at HELLO BEAUTIFUL many families are warm and cosy and we feel that love and generosity from them all.
The wonderful owners and staff at Stonesthrow Launceston together with the generous donations from the many businesses around Tassie made Lizzy's Dinner a HUGE event. It was filled with the best food ever, fun, solo and hard working people we have seen in a looonnng time. Thank you.
On a cold Friday morning the good looking staff, from Unimech Commercial Air Conditioning Services South Launceston, blessed us with a new heat pump and the overwhelming feeling of being warm inside and out.
Noooooo amount of scones, savouries and upcoming Christmas cooking can repay the generosity from Jason Jane and Claire. Forever grateful x
A MAKE A WISH ***** A holiday in a hotel was Lizzy's wish. A holiday with her family sleeping in a big bed and making memories to last forever. Spending time together, having breakfast, a cuppa or or two, talking, laughing and just being altogether is something that we needed after a disconnected 2 1/2 years.
In the past year, we again, have met soooo many brave people. Seeing special people fight for their lives, leaving loved ones behind and the look of understanding when take our beautiful Lizzy in the operation rooms over and over again. BUT we are the lucky ones. We are still here. We still get to say Morning Sunshine to Lizzy everyday and proudly congratulate Matthew on his uni results. We can still giggle as Dave rides off on his bike in his bike boys shorts and I get to hang out with the best human being ever.
Sometimes you read the saddest stories, see the emotional tv shows about brave families going through the toughest of times and think how crappy this world is. I know I do alllll the time. Then I look how lucky we are. How loved, thought off constantly, and two words like LOVE YOU, DREAM BIG, I CAN, THANK YOU and it makes you think and know how lucky we are.
Sooooo as we crack another day on the advent calendar (what's with the foil wrapping!!!) eat the delicious little chocolate and get ready for the silly season both here and in Melbourne us Knox's sing and wish you LOVE HEALTH HAPPINESS & memories to keep forever.
We wish you are Merry Christmas, Santa Claus is coming, All I want for Christmas, Last Christmas, Driving home for Christmas, Santa wear your shorts, Go Santa go and a lllllllll of Michael Buble Christmas album and a HAPPY NEW YEAR.
Love & Kisses
"Good Afternoon and Welcome to Sydney. Passengers we have Royality on board today. Princess Lizzy and her family!!!!!"
That was the announcement from the captain on the flight to Lizzy's Wish...... But I missed a few steps soooooo..... At 8.30am the Limo pulled up outside and our wish DAD, as we call Greg, was ready to take our luggage to the airport. The Limo was to take the 4 of us!!!!!! After a photo shoot from Carthy, me mainly as Lizzy wanted to go in Matthew's truck the normal form of transport to the airport, off we went. Booked in and after a coffee with Greg, Dave, Matthew, Lizzy and I went off for the beginning of The Holiday in a Hotel.... This was Lizzy's Wish. She wanted to stay in a hotel, in a big bed with her family. As soon as we were on board the wondeful Virgin staff made a massive fuss of Princess Lizzy. This was the 1st of many "fussy" moments Lizzy would experience, and Lizzy LOVED it every single time. After a long day we finally made it to the Gold Coast and with the Princess car and the GPS (named Sarah our wonderful coordinator of alllllll thing Make A Wish) off we went to find the Hotel... We were met by our Wish Mum Iris, no relation to Greg, and she took us up 55 floors to the amazing apartment. Behind the door was another "fussy" moment for Lizzy. A Welcome Princess Lizzy cake, A welcome note on the king size bed, balloons, fresh fruit, groceries and the KFC and SOLO...... Lizzy nearly had a fit!!!!!!! Straight to the bed with her chippes while Iris showed the rest of us around. We have 3 loos!!! 3 loos... Now this is a big thing for us as a 1 loo family!!!
The views were out of a magazine, the appartment was bigger that our house and even the bathroom had a veiw, the fridge beeped if the door was opened tooooo long and we were on holidays TOGETHER in this place. Lizzy meanwhile was doing angel wings on the big bed and smiling from ear to ear. It was time to eat KFC, drink Solo and take in the 1st of an amazing 7 days away as a family.
The next couple days were filled with theme parks, eating, driving and Sarah the GPS telling us to go left and Lizzy repeating the speeding Zone over and over again. Laughter was the theme and laughter is what we had.
Matthew's classic line on day 4 was "Oh the little fellow (refering to Dave) is learning new tricks!!" as Dave turned down the right street to leave the carpark. Lizzy's classic line was "what's that smell???" while we were in a lift full of overseas visitors...
Lizzy made the most of being asked what she would like to do. KFC always was in the daily activity, washed down with a solo, but JB HI was on the list and sooo JB HI it was. Shopping was in the mix and there was never a chance of getting lost as she found her voice often calling out SUZY SUZY SUZY, Matttthhhhew Matttthhhheeeew Matttthhhheewww and DAdddddddddd Dadddddddd Daddddddd. People looked, some people laughed and all 4 of us giggled like little children.
Out of all the things we did on this amazing Holiday in a Hotel was being together. Having breakfast every morning, walking, talking, making memories that we will hold onto forever.
Seven days went sooooo quickly and the morning we were ready to go home Lizzy decided to sleepin..... Again toooooo funny. Lizzy was up early every morning even when we said sleepin tomorrow Liz, Nope not our Princess and after the 3rd time of taking the blank off her we finally said goodbye to the Gold Coast and back to our 1 loo house.
Back home with a cup of tea in my favourite cup, Lizzy on her couch looking at her ipad, Matthew back at work and Dave flicking through the many catalogues that had arrived and thinking how could we ever repay the Make A Wish organisation for a wonderful wonderful time away together. How could we ever thank Cheryl Dodson and Mandy Lovegrove for their nomination that started alllll of this. In what way can we ever show the love we feel for Greg, Rani, Courtney ( our forever wish family) for their instant love, kindness, compassion, humour and giving sooooo much of themselves. A massive THANKS to their family for sharing them with us. To Isis our Wish Mum on the Gold Coast Love & Kisses always and to Sarah The Designer of Lizzy's wish. Sarah you listened, giggled, cried and got it sooooooooooooo right. Everything was perfect and for this a we are forever grateful and everytime we see a GPS we will think of you with a smile when we turn left..........
Lastly, Elizabeth Joy Knox, Princess Lizzy, our SuperGirl and Dear One thank you.
Thank you for being our brave brave little girl. Thank you for taking us with you on this journey.
Forever memories Lizzy and we know many many more to come.
Love & Kisses
May is one of my favourite months of the year. It's Mother's Day, shoe sales start for stocktake and it celebrates Lizzy's Birthday. Lizzy turned 17 this year. YES our baby girl is 17. It only seems like yesterday when Elizabeth Joy Knox was born and changed our lives for the better. Lizzy had a couple of requests for her 17 th like JB Hi Fi vouchers, money to go in her purse, Look who's Talking 2 from Ebay, KFC chippes, solo and to spend time with allllll the people she loves.
May is also my birthday and I was in hospital 17 years ago when Lizzy was born. The lovely nurses nominated me as patient of the week, as I had spent 9 mths on and off at Hotel LGH, and my birthday fell on Mother's Day. I remember having Prawn cocktail, scallops with chips and salad, a large chocolate sundae, from McDonalds, for dessert and a bottle of bubbles to drink later.
Looking back on that day, no one could have ever predicted the journey we are on. I often say to our dear friend Julie McCarthy, you just can't write this shit!!!!!
Since February, my last blog, Lizzy has been back to Melbourne twice, Hotel LGH and many trips to the doctors. Infections seem to last longer for Lizzy. Any little thing that would take Liz 3-5 days to get rid off now last 2-3 weeks.
Lizzy is having serious problems walking. This is one thing we know really effects Lizzy. It took her 3.5 years to walk and when she did our little girl didn't stop. Liz would walk, run, push anything around for hours. Always an outdoor girl, Lizzy started Little Athletics with the Sacred Heart Club, same as Matthew, when she was 5. The joy on her face running and trying sooooo hard to keep up with the little girls running next to her. In the movie Babe, Babe gets the sheep in the pen and the growd goes wild, this is what is was like EVERYTIME when Lizzy finished her race. Sometimes minutes after everyone else. The girls would stand in their spots cheering Lizzy on and then the roar from the crowd and a casual wave from Lizzy and the race was finished. The organisers had the patience of a saint. They re-arranged the hurdles, Trev brought in a little shot put for little hands, Kimmy, over the loud speaker and Timmy always got a huge smile and relief from Lizzy after each run. Sooo seeing Lizzy hold on to our hands to walk, asking for her chair more and more and hearing it in her voice is very hard to see.
One thing that can put a smile on our Princesses face is JB HI-FI. It has opened in Launceston and even though we havn't been there yet the excitment is huge. Our regular store is in Melbourne City and tram #59 takes us there. It is a huge undertaking to get Lizzy on and off that tram. People are busy in Melbourne. People are not happy to move out of the way in Melbourne. People stare in Melbourne. Sometimes it's like they have never seen such a beauty like Lizzy (well thats what we like to think) but when it comes to my children, I find my mouth runs off, and Dave says "Suze!!!!!!" Alot of things don't shock me anymore, BUT, this does........
On Wednesday we return to Melbourne, soooooo quickly after the last trip, for Lizzy to have 2 surgeries. This would normally make us use the emergency credit card BUT thanks to The David Chapman Foundation, the amazing Jen and fabulous people at the Examnier/Fairfax Media, a huge stress has been lifted. It's a wonderful feeling to be able to leave Matthew with a fridge full of food and something for a treat. It is a hard thing leaving Matthew over and over again. As independant as he is, he is still our baby, and a huge amount of guilt travels with us leaving him again and again. Matthew and Lizzy have a very special bond. It has been like that since the day she was born. Matthew and Lizzy are like peas in a pod, sooooo different in many ways, but the look of understanding and love that they share is the best feeling ever. It always brings Dave and I huge smiles when he walks in the door and we hear Lizzy call out MATTHEW!! and the reply of BUTHEAD from the adoring brother is a sound we will always cherish.
It's Sunday night here in the Princesses house and Lizzy just yelled out "Mum! you ok?" Even with everthing Lizzy goes through and alll the crappy stuff we have to do to he, she continues to show the true meaning of LOVE.
Sometimes
the smallest things
take up
the most room
in your heart.
Love & Kisses
I'm
Lizzy has a family of 5.
I'm the Mum, Suzy, aka Mummy dearest, princess and Suzy Knox.
David, is the Dad, aka Boris, Daddy Dearest and the Lizzy's main Man!!!
Megan, is the big sister. Meggie, as Lizzy fondly calls her, lives in Hobart.
And last but certainly NOT the least is Matthew. Aka Matt, Butt Head, a…hole!!!!! and is the love of Lizzy's life, her rock...
I
4th January 2015
A sleepin started off 2015... Well a sleepin till 7.30am is good in our house. A cup of tea out on the deck, sitting in the egg chair that Santa brought the year before. It sounds strange, the year before, but it is a wonderful thing to kick that 2014 to a place where we don't want to go to again.
A thoughtful gift from Ali, our "daughter inlaw" was a book called Always Look On The Bright Side Of Life.
It is us, as a family, completely. Each morning I open a page and look at the quote for the day. Today it says
One joy scatters a hundred griefs. Chinese proverb.
A hundred griefs is probably very close to the feelings we had in 2014.
It has been nearly a year since Lizzy first went to Hotel LGH with a nasty virus. A virus that set a whirlwind of emotions for not only us as a family but it seems for a huge number of our very close "extended family".
If Lizzy was to have a passport to travel from Launceston to Melbourne it would be full. We have lost count of the number of sleep overs at The Royal Childrens Hospital, Ronnie Macks and the occasional hotel in Melbourne. We have lost count of the amount of calls to Matthew as he managed to keep it alllll together for his final year at St Patricks College. We have lost count of the many cards, calls, texts, letters, meals, cuddles, kisses, tears, laughs, support and generosity from many many friends, strangers and extended family.
BUT we havn't lost count of the lifes lost this year.
Forever in our hearts are special people that have gone to soon. Gone to that place we hope will see them looking down on all of us and hold our hands when we need that little bit extra.
It is a new year. A new day, each day to live, love, forget the past, forget the things said in the heat of the moment, forget the shitty things that have happened and LEARN from alll that stuff that has made our hearts beat that little bit faster.
I'm not one for a New Years Resolution BUT this year I made the "Magic 7". I am going to lose 5 kilos ( Dr Phill said go easy) Grow my hair and then donate it when we do the shave for Lizzy. Walk a little bit more each day, listen, pack less, sit in the sunshine (with sunblock) and learn to let somethings go.
The new passport for Lizzy starts again on the 1st of February. We will take our Princess back to Melbourne and see if they have found the answer to help make her well again and I am hoping that the Magic 7 things will make it a little bit easier than it was back in 2014.
Lizzy's liver continues to be aggressive and put her little body through hell. The strength and determination she shows us is amazing. She is sitting in her room, wearing her Supergirl Tee, singing to HI 5 and it sounds like old times. Until you look at her beautiful face, pale face, vampire girl, as Dave calls her, and see the many bruisers over her body. Lizzy finds it hard to walk now and needs help with alll her day to day things. BUT the ability to say I'm fine mum with little tears in her eyes, thanks Kate when KFC chippies are delivered, a cheer when the posty brings her weekly TV week from Cousin Kellie and MICKKKK, the look of love when Dave walks in that door and the long cuddles on the couch with Matthew are the things that a worth concentrating about. Not all that crazy, out of control things that have have worried us previoulsly.
Sooooo along with the "magic 7" I made on New Years Eve, I AM GOING TO be myself.
Happy 2015 to you and your Families too.
Enjoy it.
Dance like no one is watching
Paint your toes nails and concentrate on the things you love.
Love and kisses xxx
Just a Tick is what we need!
22March 2015
This is the first year, in 14 years, that we havn't sent Matthew off to the 1st day of school. Our wonderful Matthew is having a gap year, to spend more time with Lizzy, work to earn some cash and enjoy himself. It is now the 2nd year Lizzy hasn't gone to school! But the lovely BB from KMHS comes every week, when we are home and when Lizzy is up for a visit and Wright, THE TA, to stocktake the dvds and chat and catch up. It is beautiful to hear Lizzy answering the questions from BB, asking for 5 more minutes and proudy getting a tick on her sheets with a smile.
A tick is what Lizzy asks for when we are in Melbourne. A tick to go home. A tick to go back to Ronnie Macks and a tick to walk the 2.5 kms to KFC. A tick isn't what we got from the Liver Professor at the beginning of February. Portal Hypertenion is the another new condition Lizzy has. This produces varies in Lizzy's little liver and can be very dangerous. Sooooooo after another Bone Marrow aspiration, that came back the same as last check, we came home. The call, that tells us to come back 10 days later, comes the next morning and soooo another test on our Dear Lizzy. A scope to explore the liver and clamp any varies that show up along with a date to check the ASD heart defect is also on the calander.
Lizzy continues to have many days where she bleeds from her little mouth and her blood tests show a very sick dear one. BUT Lizzy also has many days where she continues to sing, laugh, tell Matthew what to do and that gets a huge tick in our eyes.
Lizzy is a lover of alllllll things football. She loves AFL and can sing all the team songs for every club soooo when NAB and the lovely Tracey Hardinge asked if Lizzy would be the coin tosser at the Hawks and Collingwood game on the 26 th February we said YES!!!!!
Another tick came along on the 11 th March when I went
down to Seaport and asked Karl from the Today show to
sign a card and say HI to Lizzy in a photo. TICK!!!
We have added a bucket list for Lizzy. Meeting Karl was a
TICK and with the bonus of Lisa and Dickie signing a
Lizzy's get well card!
We taped the show and Lizzy watches me get that
HI LIZZY pink card in the shot as many times as I could.
Some of the things on the Bucket List are:
Stay at 20 hotels not related to being sick.
To have allllll the AFL pjs from allll clubs.
For Dave to be on holidays ( Lizzy asks everyday if Dads on holidays)
To get a ramp over the stairs soooo Lizzy can walk.
Buy shares in KFC and many many more that we add to each week.
A tick in our house is something that Lizzy likes at the end of the day and a clean pair of socks that say it. The socks say Thursday in our house tomorrow and with the Lizzy's Blanks Open Home on Friday its Blanks Blanks and more Blanks to be made.
Lizzy's Blanks started at the Fight for Lizzy almost a year ago now. It has grown to 750 likes on FB and the Blanks have been loved in New Zealand, Japan, Singapore, Queensland, W.A, Melbourne, Sydney and alllllll over Tasmania.
We are sooooo grateful for the ongoing support by soo many and we really hope that you all get a tick in your lives that brings a "Lizzy" smile on your face.
Love and Kisses x
The Sun will come out tomorrow...
28th June 2014
Lizzy has several movies she loves. RV Vacation, Sex in the City 1, Father of the Bride, Spy Kids, Harry Potter, Little Women and Annie just to name a few. So at Coles, Annie it was, for the bargain price of $7. At home with Annie and her KfC Hot Chippies an afternoon of singing was to happen. But with Lizzy an
amazing moment is always around
the corner. Lizzy was singing
"The sun will come out tomorrow bet
your bottom dollar that tomorrow"
as I walked past. It stopped me in my
tracks.
Mum Mum the sun will come out!
This is my hope.
Dr L rang today and Lizzy needs to go back to Melbourne Tuesday Night for a Liver Biopsy. Now for a regular garden variety little person its a minor procedure, but as Lizzy's blood isn't clotting, it's a little bit serious. A round of blood and platelet transfusions before the day on Thursday and then waiting a couple of days for recovery takes us to Sunday /Monday.
FIGHT FOR LIZZY'S night is on Saturday.......... A night where friends, old and new, are going to party hard for Lizzy , Dave ,Matthew and I. A party that we will miss.
I really wanted to add something to the night sooooo, along with "Carthy" aka Julie McCarthy and "Bennett" aka Lucinda Bennett, we have made 8 NO SEW BLANKS. In many pics of Lizzy she has her BLANK. Sometimes it's a Wiggles one or a red and white spotty one. We have made all different ones that are up for auction on the 5th of July and they are made with LOVE and GIGGLES and with our beautiful Lizzy at heart.
The team at "FIGHT FOR LIZZY" are working very very hard and have left no stone, rock or donation unturned. SOOOOO love and kisses to you all.
A massive THANKS to Kingsmeadows High School for the amazing donation to Lizzy's bank account for further travel and treatment in Melbourne. The grade 9 Class leaders and volunteers along with Bernice, the school chaplin, and Mrs Mel Towns encouraged the staff and students to wear spotty or spripey socks or a silly hat. Cordial and hotdogs were sold and eaten and quality handmade earrings were on sale during the annual cross Country event.
AGAIN this week has had its speed humps
BUT
The sun'll come out
Tomorrow
Bet your bottom dollar
That tomorrow There'll be sun!
Just thinkin' about Tomorrow
Clears away the cobwebs, And the sorrow
'Til there's none!
When I'm stuck with a day That's gray,
And lonely,
I just stick out my chin
And grin, And say,
Oh
The sun'll come out Tomorrow
So ya gotta hang on Tïll tomorrow
Come what may
Tomorrow! Tomorrow!
I love ya Tomorrow!
You're always A day A way!
Love and kisses
Suzy K :)
P.s I can hear you singing xxxxxx
Happy to be home..
1st Oct 2014
Happy to be home is an understatement... but we have
mixed emotions!
Lizzy was called back to The Royal Childrens Hospital Melbourne after the longest stay at home.
We have been on a "Hospital Holiday!" for 3 months.... Still waiting for test results, nasty bloods
to show and many many sleepless nights. Lizzy still hasn't been back to school and Dave, Matthew and I sit and watch Lizzy change day by day.
But this time we were going back to hear the plan that allll the teams were putting together!
Going back to start getting our Dear One on the road to recovery... As usual a speed hump is always around the corner.... Sunday starts with a wrong booking to get us to Melbourne..... No room at Ronnie Macks and the flight!!!! Holly Hell... Lizzy and I don't fly well at the best of times.... Lets just say "WHERE'S THE SICK BAG!" On this trip Meg was coming with us.. The big sister, who Lizzy loves lots and calls her sook with love and giggles! . Matthew stayed home with Ali to study and enjoy some well deserved school holidays.
Monday morning off we went to get the news.
Good news was what we were hoping for..... Crappy news is what we got.
Lizzy's primary condition is now Aggressive progessive liver disease. Our Princess is very sick and along with this condition her other health issues continue to grow and cause Lizzy to be very sick.
A Bone Marrow /Stem cell transplant is now on hold until they find out why Lizzy's organs are failing on a
day to day blood test. A transplant we thought might happen before Christmas and start 2015 on a good note. To say we are shattered is an understatement. I know that we didn't want our Dear one to go through the crap of a Transplant, or chemo to make her sick before she got better, or seeing her lose her hair and suffer BUT it was a plan to make her better.
Now the plan is to manage her conditions until something can be done.
We are very proud of the way we have reacted to things we have heard, said and seen in the last 9 months.
We have had people talk about us, saying we don't deserve the fundrasing, saying our Daughter isn't as sick as we say she is. We have enjoyed the love ,the generosity of friends and strangers, the support and the hurtful things that people have said to us and behind us. We have friends who have their own life battles and still say "How are you holding up?"
BUT this week we have heard that our baby is sick and having treatment like Chemo and a transplant isn't going to make Lizzy better until they work out WHY!!!!! and that even if she dose get Leukemia soon it will very hard to treat.
Sooooooooooooo I just want to say........We would take it alllll back... We would give it allllll back.. We would doooo anything to help Lizzy be well..... We want some true miracles...... We want to stop the pain in our hearts and see Lizzy be the wonderful bright women she was this time last year.
It's the first negative blog I have posted BUT sometimes things need to be said. I am breathing but if one more person tells me to I will scream.....
I really pride myself on being a positive person.
I'm a cup 1/2 full not 1/2 empty.
Soooo the sun will come out tomorrow and I will feel that sunshine on my face and learn to live and and make the most of every single day.
Love and kisses :)
Like in a Movie!
16th July 2014
The doors opened, "It was like in a Movie, everything was bright, balloons and fairy lights were everywhere, the St Patricks Big Band was playing, the stage was set for an amazing, emotional, fun, crazy and loving night!!!!!
No one, even the talented Lee-Anne Patterson, Kate Gardner, Jamie Anderson, Rebecca Beecroft, Brett Jones, and Jason Beecroft and their helpers, could have ever thought it was going to be so HUGE!!! A little like the week Lizzy had in Melbourne.
Dr L rang on Saturday 28th of June and said she wasn't happy with Lizzy's scans from the previous visit 8 days before. Sooo just as we had unpacked the case we put it all back in and off to The Royal Childrens Hospital Melbourne we go. Lizzy is very aware of what that might mean now and its heartbreaking to see how our smiley faced girl can change in a phone call.
A liver biopsy was scheduled for the 3rd but Lizzy needed to have a few blood transfusions before hand due to her bone marrow condition.
In her Supergirl PJ's off to theatre we took Lizzy once again. Five in five months is way toooooo many times, but as usual Lizzy was the bravest person we know and held our hands like we were the ones going through it.
The next day it was time to go home. Time to wait for this round of results, time to see our Matthew and time again to sleep in our own beds, drink from our own cups and be safe and sound at home.
Fight for Lizzy was already to go. I was dressed by Moskito, Bliss and the wonderful Jamie and Hayley made me look human, Dave was very hansome in his new shirt, Matthew was and is the best looking young man ever and Lizzy was looking a beautiful little rose.
Talking is one of my favourite things to do. I'm not usually a shy person, I wear my whole life on my shoulders and share the good and the bad times with anyone who wants to listen, BUT holly molly!! getting up with the stunning Sara Redman, who was the MC for the night, telling what seemed to be the world was very hard. I did it and I hope I made our friends and family proud.
During the night the donations from all the businesses, friends, corporartions, people we know, people we didnt but do now, were autioned with the help of Bruce Holland and his spotters Kody and Josh. Crazy Crazy bidding on the silent aution, many glasses of Champange were brought, lots of balloons went to the ceiling after the bouncer came over to bring the pushy bidders back to order.. coins thrown into a bucket for the prize of a bottle of scotch, Coles came along with a bunch of coles cards, not to be used for lasagna, and a good looking regional Manager, a row of stunners from Sue Rees Modelling, beautuful sounds from Victoria & Hamish Geale and while all this was going on Lizzy was the star of the show. Our dear one took it all in. She was chatty, pleased as punch to win a pic from Little Athlectics, clapping when someone else won a prize, delighted to see Dave on stage picking the winners, waving to Laura in the fashion parade, talking to her BFF Mr Colson, and amazed at the slide show made with love from Miranda Patterson.
A night to remember. A night to thank soooooooo many people, way to many to point out! A night full of love, laughter and memories.
I was once told "you are not the only one who has a child with a disability" and I know that, but some days you feel that way. Some days when your dear one is very sick and the future is uncertain you feel that you are alone and unsure.
NOT on the Fight for Lizzy night. Our hearts were full, full of love and hope for a our Lizzy, our family and our old and new friends.
Thank you
"We are not in Kansas anymore!" is something I say everytime I enter the doors at The Royal Children's Hospital Melbourne.
Hotel Melbourne (as Lizzy used to call it.. now Liz just says CRAP!!) is as big as our Launceston Central City. It has McDonalds, a chemist, a supermarket and Gym (to be opened very soon), a little shop (the rip off shop as we call it) many many coffee houses, a sushi bar, a gift shop, an information centre, an interactive white board, a movie theatre, Starlight Foundation's play house, Centerlink, and many many more places.
It also have different floors for different things. The floor we stay on is level 2 and is the Cancer care ward. The Transplant Ward. Why?? Well this week we meet Sally. Sally is our new transplant coordinator and will be our new BFF for the next??? Dr C, our oncoligist, had a chat about the next stage in Lizzy's treatment. He said that Myelodysplasia, ML, will always be a condition Lizzy will have and that to help with treatment a Bone Marrow/Stem cell transplant will be a way for Lizzy to cope with this condition.
BREATH!
Lizzy's Bone Marrow aspiration came back mostly the same, mostly like CRAP! But at least the crap is stable.
Dr L form the Liver team wasn't happy with the ultra sound results showing an enlarged spleen and irregular blood cells. Soooooo we are going back to Melbourne in 2-3 weeks for a Liver biopsy.
It just seems like our Dear one has it all. Lizzy has a family that loves her more and more each day. Friends old and new... friends coming out of the woodwork to offer love, prayers, footy hats and scarfes, special treats for us all, beautiful words of wisdom AND medical conditions that only a medical journal should have.
I also have a medical condition. It's called Hospital Mum!!
It was explained to me by another mum on the ward.
I look like I need a good nights sleep, I have facial hair!!!
I have a ponytail and drink lots of cold tea!!
My clothes are out of a dryer and I need some veggies.
I rest when my child rests, I smile and nod at the other parents
with a little understanding. I use soft tissues alllll the time
and I pray for a miracle.............
Its been a hard week seeing Lizzy have test after test.
It is hard being away from home, away from our Matthew and
away from the support we have and really do love.
BUT!
WE had a chance to treat Lizzy and she had a couple of requests. To buy a Hawks jumper cos they are winners!!! Buy Ali a surprise and to ring Matthew and tell him we were coming home.
Lizzy seems to show us, seems to lead us out of the rough times. She knows how important the small things are like ringing Matthew and sharing how excited she is to see see him. I phone him mum, I call Matthew QUICK!!!!
Sooo this week do a Random Act of Kindness. Show someone how much you care. Tell them how wonderful they are. Love, kiss, hug, call, visit and show them just a small thing. Show them how much they mean to you.
And remember
You never know how strong you are
until being strong is the only choice you have.
Love and kisses
Suzy K :)
A week to be
THANKFUL.
12th June 2014
A week full of sunshine, no hospital visits for bloods, no tests or sleepovers, lots of time to recharge before heading back to Melbourne on Sunday has been our week in the Knox house.
Dave has been busy with the car for Matthew and with the generosity from Chris and his team at I Q Automotive the Vectra is making our 18 year old once again independant and happy. Classic Dave and his one liners have been flowing lots this week with soooo many things to be grateful for.
A highlight would be the amazing support from the wonderful school that I work at. The staff or friends as I would call them once again have overwhelmingly showed their love and support to us. Lizzy was a student at Youngtown Primary School for 8 excellent years so the staff have a soft spot for our Princess already. BUT to also show their love for Dave, Matthew and I is beyond any ones expectation. A get well book from THE WHOLE school.. every student, teacher, TA and support person has left a message for us. Along with this book came The Hampers YTPS way.... Matthew was in heaven! Mum we have nutri grain and coffee to last allllll through the exams... Solo for Lizzy... tooo many cans for her to count, chocolates and many many yummy things we havn't had in our pantry for a while. Treats for me like a haircut, nails and time out. Beans beans and beans for Dave (Dave loves beans) and white chocolate.
The surprises like a dinner out for Dave and I, date night, with offers to look after Lizzy was a highlight. Our friends said a small way to show how much we care but in our eyes a MASSIVE way to touch our hearts.
The best kind of people are the ones that come into your life and make you see the sun when you have seen the clouds.
One of my favorite sounds is to hear Matthew and Lizzy laugh. They get this giggle that just melts my heart and Lizzy was having a good old chuckle on Sunday. I went to see what was sooooo funny and she had found the suitcase I had started to pack. I LOVE to iron and had lovingly ironed EVERYTHING to take to Melbourne. But she had other plans telling me no hospital!! clothes alllll gone!! In some ways we think Lizzy really doesn't know what is going on with her health and then she hears a plane and says NO PLANE HOSPITAL FINISHED or Liz will hide the hospital blood forms sooo we are late for the hospital visit and then we know she is switched on more than we thought. It's this humour that gets her/us through the tuff times.
Well it's time to close up the house and get warm and ready to watch Call The Midwife.
May your troubles be less
and your bleesings be more, and
nothing but happiness come through your door.
Have a great week. X
A week that was... can you tell we are TODAY show fans.
It started with the AMAZING team at KFC Kings meadows. A "Fight for Lizzy Fund" was introduced. Lizzy is a regurlar visitor to KFC and is soooo popular with the staff and management. Lizzy knows them all and their cars tooo.
Then two girls, after a chat on FB, said lets do a Fundraiser, a COCKTAIL PARTY.... The two girls are Kate and Lee-ann. I met Kate when I was working at a school in Launceston. The mummy who came in, in fantastic shoes, and we just hit it off straight away. Lee-ann was at a coffee stand at Island Block and Paver. I dooooo like a chat (yes I doooo!!) well OMG soo does Lee-ann. Launceston is such a small town. Lee-ann is good friends with Sandra, a childhood friend, and Kate worked at Westpac with Dave and now our children go to the same school together.
Beautiful people doing beautiful, generous things. Making memories for us all and making good hot chippies for Lizzy.
Our little Jazz, AKA Bubble Bee, went to a new home. Dear friends, Lindy and Darren, have said they will keep the name BUT will put a St Kilda sticker on the back.... That wasn't in the terms and conditions of the sale!!! Good old Collingwood Forever!!
Walking the short distance home after work, two days a week, is really ok! Its a chance to take in the things you dont see when you drive and it's good for me!!!!!!!!!!!!!!
Lizzy seemed to have a goodish week. The oncologist from The Royal Childrens Hospital Melbourne rang and has booked at new date in June for another bone marrow aspiration. Sooo a sleep over or four at Hotel Melbourne is booked!!!
Lizzy has "man flue" Yes it is a nasty one. Dave took her for the fornightly bloods yesterday and back to Dr B tomorrow. A blood transfusion is due and soo a sleepover at Hotel LGH with the excellent, funny and very caring nurses, doctors and staff is next on the list.
A pair of Richmond Footy Pj's arrived in the mail....... Lizzy was soooo happy !!! Yes well. No comment!
And last, the generousity and love from Aunty Anne and Uncle Steven Knox is truely one that brings a warmth to our family that words can't explain. We all feel soo lucky to be part of your family and we are glad you all love us warts and all.xxxxxxxx
Hope you all have a great week and remember
Don't be so serious
if you can't laugh
at yourself,
call ME!
Ill laugh with you x
It was Ball week. St Patrick's have their ball each year in May and at The Albert Hall. Sooo the hair was done, the shoes were polished and the pink and purple linning was flashed and that was just Matthew. The beautiful Ali, inside and out, looked like a princess. The stunning couple traveled in Kimmy's 40th Bithday car. The white Holden HK was FANTASTIC and Kimmy and Rick were the perfect hosts to Matthew and Ali to their last ball at St Patrick's College.
It's an on going joke with our dear friend Julie McCarthy aka "Carthy" that you always start with a positive, hit them with a negative and always end with a positive.
Sooo this is how this week went. ( not in order because it just wouldnt follow the rules.)
We got given "A CAR!!" a Car!?? Yes everyone "A CAR!!!" Its silver and cute and automatic (Yeh) and given to us by Darren and Lindy (the new owners of the Bubble Bee). The gift is huge , but the love and friendship that came with the car in invaluable and everlasting. Dave and Matthew want to "pimp this ride!" already. Stay tuned for a name and little bit of pin stripping!
" A car wash!" said Elizabeth,
the Youngtown Primary School
chaplain, and with the amazing
youth and friends from The
Branch church, it was all the go
on a cold but very bright
Saturday morning.
People travelled from
BridgeNorth and beyond with
their dirty big and little cars,
utes and 4wd's to help our
family. I met young, funny, friendly,
boot wearing, lollie eating great people. Soooo generous with their time. It was cold and wet and yet these young people got on with it with a smile and seemed to
enjoy it. Thank you future excellent adults in our town. X
Our Princess Lizzy had an appointment with Dr B and he heard a murmur in her little heart. Soooooo of to Dr Mc and he found a 1-2 cm hole. It's called an ASD heart defect and could have been with Lizzy for a while. One thing is for sure at this stage Lizzy's lungs are in form and she was in voice while having an ECG, Echo and Xray!!!!
The Royal Children's Hospital Melbourne team rang and Lizzy is back to hospital on the 15th June. More testes, more treatment and a night or 4 at Hotel Melbourne. Lizzy seems goodish. A pair of Supergirl Pj's arrived in the mail. They are bright and cute and Lizzy loves them.
Matthew has man flue and is finding it hard to stay away from Lizzy. Vicks smells and Lizzy tells him he stinks alllll the time. He is studying hard for the up coming exams (on when we go back to Melbourne!!) Dave and I are up and down. We sat up the other night talking, thinking, teary and asking all the questions you do when you don't have the answers to those crappy questions.
One thing I think we have learnt, especially with all the support and love we have received, is to grasp it. Grasp the help, grasp the love, grasp the good bits out of the bad and BREATH! Laugh when we can, cry when we need to and make the memories last.
My life isn't perfect but I'm thankful for everything I have.
There is Always Always ALWAYS something to be grateful for.
Hope your week is warm and full of memories. x
