Make A Wish Weekend

Once upon a time, there was a little girl. She got very sick but after many prayers and help from the hospital, she became all better.  When she was getting better, two fairy godmother from Make-A-Wish foundation came to visit her family.  They came with special presents and cake.  They got to know the little girl more and decided to grant her a Princess Wish.  So on March, this little girl got her special Princess weekend.

Two weeks before her wish weekend, the fairy godmothers took the little girl to the local Disney Store for a shopping spree.  The Cast Members at the store gave her Royal Treatment.  She loved the special attention they gave her and the new toys and clothes she selected with her mom.

Her favourite part was after the shopping spree, she helped open the store for the other children with the giant Key to Imagination.  When it was done, she received a smaller replica of the key and more treats.

On March 15, 2013, Her special weekend began. It all started with a special limo ride from home.

 

The little girl and her family was taken to a magical place called,  Westin Harbour Castle.  Where she was received like royalty...

 

Even her hotel room was transformed especially for her.

 

 

 

The first evening continued with a fancy dinner at the 360 Restaurant above the CN Tower.

 

 

 

It was more than she expected.  

 

 

Rosie plays soccer: Youtube

It has been less than 10 months ago that Rosie completed her Chemotherapy treatment.  This is her playing with a soccer ball really well without any training or teaching.  We are so blessed to have her in our life and she is blessed with so many talents.

Happy Rosie Day!

November 25, 2011 was the day that changed our family life forever.   The scariest day but also the biggest blessing day for our family.  The day we almost lost our daughter and thanks to God, we were in the right place at the right time.

Today, we celebrate Rosie Day, a year from her life saving surgery. We appreciate the great service from Sick Kids staff and all the support from our family, friends, church, and community.  Thank you for showing us God's grace and love through your love and kindness. We hope that we can continue to be a blessing to others too.

In honour of Rosie Day we are sharing with you a special story.  This story was originally created on December 16th. This was the day when Rosie woke up from surgery finding a tube attached on her chest.  Looking through our 2 year old daughter confused and afraid eyes, I prayed how I can help her understand what's going on.  Then I was inspired by fairy tales and started telling her a story.  The story made her smile and laugh. It also made her calm down and go to sleep.  I wasn't sure how much she understood from the story.  But as soon as she woke up the next day, she pointed at the IV pump and said, "Is that my medicine?" I was so shocked and surprised at how much she related to the story.  I also learned that we underestimate how much a toddler can understand. From that point on, I always explain what's going on with her tests and procedures in simple words.  I think that made her feel more relax and confident with her hospital stay.  The story evolved through her hospital adventures and we made a written one specially made for her.  Since the story helped her so much, we want to create an e-book version to share with others. I hope the book with help other families dealing with childhood brain cancer. A special thanks to many friends who helped edit the story with me and to my sister who is working on creating the illustrations for the story.

“There’s An Egg In Your Head”
A Story for babies and toddlers with Brain Tumour

Once upon a time,
there was a darling little bunny named Rosy.
Like many little bunnies, 
she enjoyed playing with her toys and friends.

One night, she started having
‘ouchy--boo-boo owies’ on her head
and was very sick…

So her mommy called the doctor,
and the doctor said,

“You better go to the hospital,
quick, quick, quick!”

So they hop, hop and hop to the hospital
as fast as they could.

At the hospital, they took pictures of her head.

Click-click-click! 

The doctor said,
“Pretty little Rosy, you are very sick,
THERE’S AN EGG IN YOUR HEAD.
We need to take it out quick!”

The doctor put the bunny to sleep
and took the egg out of her head.

When Rosy woke up,
she had to take medicines. Rosy said,
“Yuck! Yuck! Yuck!” to the medicines.

But the nurses said,
“You should drink your medicines…
so there will be NO MORE
EGGS IN YOUR HEAD”

The doctor also placed a
special tube on her chest.
But the sweet little bunny
didn’t like it.

The doctor said,

“The special tubes are for special medicine

called chemotherapy...
so there will be NO MORE
EGGS IN YOUR HEAD”

The medicines made Rosy sad,
feel icky and lose her hair.

The nurses said,
“You should still take your medicines…
so there will be NO MORE
EGGS IN YOUR HEAD”

And the doctor said,
“Make sure you eat your food
and get lots of sleep…
so there will be NO MORE
EGGS IN YOUR HEAD”

So the cute little bunny had to be very brave

and take all her medicines, 
eat lots of food and sleep a lot.

When she was done,
she felt all better…
There were NO MORE
EGGS IN HER HEAD!

The sweet little bunny was no longer sick

and went home to live happily ever after.

 ~ T H E   E N D ~

Summer & Fall Blessings

After 2 weeks in the hospital and 2 weeks being home bound due to her shingles, Rosie and family end up with a fun summer & fall overall.  From basic backyard fun, weekly church, family outings, and family reunions. Also at the beginning of summer, Rosie was given a free playground on our backyard. What a wonderful treat. God blessed us with so many wonderful people.  You will also notice her hair is growing and she's regaining her weight back. Seeing her laugh and enjoy life again is the greatest gift for her family.

The Not-So Vacation

Four days after Rosie's Central Venous Line removal, the family decided to join Dad's business trip to Windsor.  Why  not, hotel is paid for and we have relatives at nearby Detroit.  The room has a kitchenette, the area was not a typical getaway, so shouldn't be crowded. It was a great idea!  Little did we know that this vacation wasn't meant to be.

On Tuesday, July 11th, we packed our bags and van and headed  to Windsor to meet Rosie's dad later on. As we stopped for lunch, halfway our trip, I noticed that Rosie's small rashes from yesterday gotten  worse. We thought it was just mild skin irritation.  Now, those tiny rashes evolved into blisters on her head and now her eyelid is also affected.  We have a mdical emergency and we need to decide what to do ASAP.  Hubby and I decided to take her to Windsor hospital to be assessed and the rest of the family can stay in the hotel room.  So I drove straight to the hospital.  We never took Rosie anywhere else than Sick Kids Hospital.  It was a good thing we had a doctor's note explaining Rosie's condition.

Rosie has been admitted for shingles with IV antiviral that she will require for a week.  We spent a night at Windsor Regional Hospital. The boys and grandpa had to stay in the hotel until dad was able to take time off work.  Dad only needed to work there until Friday and our relatives couldn't come to meet us. So it was better for the family to return home than to stay in Windsor.  So after 24 hours of IV treatment, we left Windsor and headed home while hubby stayed and continue with his work.

One hour into driving, my younger son requested a potty break.  So we stopped at the nearest gas station.  As we were parking, other drivers were staring at us.  As we open our doors and came out, there were smoke coming from the hood of the van. Oh my gosh!  Rosie has an IV lock on her arm and her rashes are spreading on her face, we need to go to Sick Kids soon and we're stuck. "God, please help us," I prayed so hard. Then called hubby. He came over after gathering car tools from a friend and drove the long hour trip. Then it was decided the problem was the transmission and we need the professionals.  So CAA was called to take it to the shop near our home. We weren't inform that there were additional cost after 200km.  We had to pay extra hundreds for towing. (And a lot more for the repairs). But we were blessed that we stopped at a gas station with a restaurant and not stuck in the highway.  The kids ate and sat comfortably waiting. They also entertained each other patiently.  We were also fortunate to have grandpa with us who watched the boys at the hotel when we were at the hospital and he stayed and waited for the tow truck.  Hubby drove us straight to SickKids and then took the boys home.

Rosie end up staying for over 10 days at the hospital.  Apparently,  it is common for post chemo patients  to get shingles.  Its not something they pick up from others.  It happens to anyone who had chicken pox and/or varicella vaccine. (She had both). The virus remains suppressed in the body and usually comes out when our immune system becomes weak.  That  is why shingles are common for the elderly and immune compromised children and adults.                                                  

Rosie's rashes remained on the upper left quadrant of her face. And thankfully, it did not affect her eyes.  She had to be in isolation for the full hospital stay.   She is not contagious to anyone who already had chicken pox.  Even the hospital staff doesn't wear masks or gowns. And for those who haven't gotten the pox, they have to touch the actual fluids from her rashes to get chicken pox.  Adults shingles are more severe and painful. Rosie was only in pain for the first few days and was comfortable afterwards.

Unfortunately, Rosie no longer has a central line.  She needed to be punctured for blood works and IV insertions. Her veins are so small, sometimes it takes several pokes for them to get it right.  Poor little one, her arms look like pink-blue pin cushions. She also had several eye tests that required eye drops which she hated.  Sometimes, she needed oral medications, which is a wrestling battle and she still gets to spit most of it out.  Her rashes is taking so long for it to completely crust and dry out.  For older kids, they usually send them home with oral meds to continue their treatment. But because Rosie is not good with taking oral medications, she had to stay at the hospital until her rashes are completely dry.  If any of her rashes are not dry, it can continue to spread and she would require to return to the hospital for a stronger and longer treatment.  So we are patiently waiting to ensure she is ready to go home. We do miss being home with our family.

Rosie has her own floor mats and toys in her room, it makes her long hospital stay enjoyable.  We are very blessed to have a brave, patient, and joyful daughter and understanding sons. Thank you Lord!