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!

Highlight # 5 - Goodbye Central Line

Rosie reached a new milestone today. Her Central Venous Line is removed surgically.  That's after 2 months from her final Chemotherapy round.  We are so thankful and blessed that her last MRI is clean for any signs of tumour.  And she is doing well with recovery.  She has gained her good appetite and most of the 10 lbs. she lost during her illness. Her hair started growing back in time for her birthday.   We are also so fortunate to have a caring community.  Group of mothers in our community honoured Rosemary for their Relay for Life 2012.  Their team did their 12 hour relay two weeks ago. We joined Rosemary & other brave Cancer survivors for the "Survivors' Victory Lap" which started the relay. Rosemary had so much fun and even circled the lap several times with the family.  We look forward to enjoying the summer now that she's free from daily nursing visits! 

 

Happy 3rd Birthday Rosie: Youtube

Birthday Slideshow

Rosie not only celebrates her birthday but also for completing her chemotherapy treatments and for being cancer-free. We are so proud of our little girl. She is growing up so fast and becoming a mature, strong, and brave little girl. We love you so much!

Thomas the Tank Engine Show on Rosie's Birthday

Rosie dancing and shaking her 'bootty' while a cast sings the Thomas the Tank Engine theme song. We were lucky that the mall has a live show from Treehouse TV on the same day as her birthday. At the end of the show, Sir Topham Hatt specially mentioned that Rosie is celebrating her birthday. Rosie recently finished her chemotherapy and this area was crowded with kids and some were coughing. So to protect her from getting sick due to her low immunity, she had to wear a mask. She's also wearing a hat to cover her baldness so the other kids won't get scared.

Resuming our "normal" life

It's been three weeks since Rosie was discharged from her final chemo treatment.  I had mixed feelings coming home. It's wonderful to be with the rest of our family and to relax at home. But it also means back to daily chores and being sole responsible with Rosie's medical care.  Yes, there were visiting nurses that came twice a day to help with her overnight IV hydration during the first two weeks and now just once daily for her Central Line care.  And so I am a Registered Nurse (Long Term Care) but I am a mother first and like many moms, I worry, worry, worry.  Worried about the 'what ifs' and 'what now?'.
 
We got so used to hospital life the last 5 months, not sure how to get back to the old routine. So many things have changed.  Rosie requires more care, no daycare allowed, infection risk, low bacteria diet, medically fragile, no crowded areas, and weekly hospital visits.  And my two boys age 10 and 13. Their daily routine has changed and even their food preferences for dinner and school lunches have changed.    And dear husband, now that I am back home, is putting more hours at work to catch up since his company has accommodated us by allowing him to start late at work.   Then our house that's already been neglected when I have been working my night shifts and now even more neglected that I've been barely home the last 5 months.

How I am suppose to be back to work?  How can we make it work? Is it possible? Will she be safe? What changes do we need to be healthier than before? What lessons have I learned during our greatest trial? So many questions...where to start? My to do list..


1. Grow Spiritually.  We are so thankful for God's grace and mercy.   It's through our strong faith and family (physical & spiritual) that help us through our trials.  You sow what you reap.  Continue to share God's love to others with kindness and ask for nothing in return.  You just never know when you need the same kindness from others.

2. Lack Trust at our local Doctors.  We dont' feel comfortable going back to our family doctor and our local hospital, they misdiagnosed Rosie. We almost lost her.

3. Provide more natural and healthy food. The more I do research about cancer, the more convinced I am that the increase cases of cancer is due to the carcinogens in our food, products and environment.  So I will do my best to buy organic and natural. Some of you may not support this but why give your kids chemical filled, toxic, genetically modified foods?  It's like feeding them poison each day.   I am glad that more natural and holistic products are becoming more available.  God made our body into His likeness. Our body can heal itself if nourished with the natural food God meant us to have. No preservatives, no chemicals, not processed and definitely not Genetically altered.  This won't be easy with picky eaters. But even small steps like buying organic meat and milk and more fruit and veggies will help.

4.  Finances.  Being out of work the last few months and depending on EI is never enough for most families. Thanks to family and friends for their generous support.  Then thanks to the Sick Kids Social Worker, we found support from their POGO program.  Parents gets allowance for each hospital stay and visit.  Then there's the MacDonald Housing for out of town families.  And it was through our CCAC nurse that I learned about Enhanced Respite Program (not income based).  We are so blessed and privileged to be in Canada to have so many charities and government support to help us in this time of need.

5.  Find help.  We need someone to help with the house, childcare and yard work.  I feel like an awful mom, housekeeper and wife. How does others do it? Can we afford it? Aaah! Just more questions.

6. Be healthier.  To promote health with my family, need to be healthier myself.  While Rosie was at the hospital, I hate throwing food and had eaten her leftovers and I was highly stressed, so I snacked a lot too and not move much. So I am unhappy with my weight gain.  So I need to lose weight, tone my arms and ab muscles.  It won't be easy for me.  I am usually so fatigued with nights shifts, I never have time for exercise.  

7. Prepare for back to work. With dad's business trips and my night shifts, we will need someone to be with the kids at night and help me at home. We need to find someone that we can afford, very challenging.


8. Build a new routine and schedule.  This is still in motion as Rosie's health condition is still unstable.

Just last weekend, Rosie started to have a bad cold and earache.  And 3 days ago, she vomited and spiked a fever.  We had to take her back to the hospital and she received 3 days of IV antibiotics.  We got to go home today since she had no fever the last 2 days.  But she end up with rashes (viral infection) and still have some ear discomfort.  They said since she's has no fever and has good WBC and neutrophils, she can go home with the oral antibiotics again.  I don't like antibiotics since she's allergic to Penicillin and drugs always have side effects.  Because of her high frequency hearing loss from chemo, I could not risk her ear infection to become worse so she has to take them.  Need to do more to help boost her immune system safely.  

9. Plan for her birthday. Rosie's birthday is fast approaching, we want the day to be a blast but can't have a party with friends as her immune is still low.   We might take our kids out on her big day and then have a party later on when she's stronger.

Our life will probably be never 'normal' but that word is overrated.  We are thankful that our future includes Rosie in our life and that's all that's matter.  We will probably find a 'new normal' as we go along. 

Do you have suggestions or better ideas? Would love to hear them.  Thanks for your interest in reading our story.

Time to Celebrate: Chemo treatment completed!

Bravery Beads Collection. Each bead represents a procedure, event, or test.

After 5 months, Rosie has officially finished her treatment protocol for her type of cancer. She completed 6 Chemotherapy cycles, 7 surgeries, 30 scans & test, and 103 blood work.  She received 3 Stem Cell Transplant, 21 blood product transfusion, and 13 TPN & lipids.  And she survived total of 41 days in isolation. She has grown braver and smarter since we started. She can sing her alphabet, count over 10, colour really well, sing nursery rhymes and calmly faces her assessments and procedures.  She will cry with pokes but who wouldn't.  Rosie likes to be informed of her procedures and test. She also like to be involved in her care and be given choices.  She's is such a big girl.

Rosie's tumour and chemo treatment has altered her speech a bit, made her walking slightly imbalanced, and some high frequency hearing damage.  Her side effects is considered minimal and not requiring therapy. Would we have made a different choice at the beginning?  Absolutely not.  Hours after our arrival at Sick Kids on November 25, 2011, she had a seizure with her eyes and head flipping up and backwards.  Her brain herniated, her brain was being squished by the excess fluid blocked by the tumour.  No words can describe what we felt at that moment, hearing that our daughter has brain tumour and then seeing her almost dying.  Any wrong choice made that day, she wouldn't be here today.  We believe that God has guided us to be there at the right time.  We held on that memory to keep us strong through her treatment.

3rd Intensive Chemo - Cycle 6

April 16, 2012

It was fun to be home for almost 2 weeks but now we are back at SickKids for Rosie's final chemo cycle. She was sad at the beginning. She felt more relaxed and back to routine once she had some cotton candy and playroom time. Thanks for your continuous prayers! Blessings!

April 18, 2012
Had her final chemotherapy drugs today. She will be monitored for side effects the next 2 weeks until she starts creating her own white blood cells. Isolation on Friday when she receives her own Stem Cell transplant. She still has lots of energy and good appetite. We thank you God!

We had a regular large room before isolation. It was nice to have extra space and our own bathroom for a little while.

April 22, 2012

April 24, 2012
Rosie had to receive platelet transfusion this morning. Continues to be comfortable, playing and eating fairly well.

April 26, 2012
Rosie has some vomiting and sore throat today due to mucositis (chemo related). Eating a little less. Had some gravol today. But doing better compared to her previous chemo cycles.


April 27, 2012

Rosie still required morphine throughout the day, it helps her gain her appetite and be comfortable. Had fun time making special greeting cards.

April 28, 2012

Rosie received platelets this morning. She was able to eat breakfast without morphine. She had no Bowel Movement for 3 days, thank goodness to the PEG Flakes, she finally had a good cleanse tonight.  She perked up tonight after a visit from dad.

April 29, 2012 

Rosie was feeling better yesterday, only had one dose of morphine. Today her White Blood Cells is 0.7 which means she is starting to engraft and her immune system is rebuilding. Praise God! We should be done this week!! Hooray!

April 30, 2012
WBC now 3.8, were out of isolation. Already had some playroom time with our first day of freedom. 

May 1, 2012

Had a busy morning with Kidney Scan, Echogram, & ECG tests for Rosie. Tomorrow she has her hearing test and hopefully MRI too then we'll be sent home. Our last treatment day! Lord, thank you for carrying us through our most difficult trials. Thanks everyone for joining us in our toughest journey.

Good Bye Isolation Room, Goodbye Chemo & Goodbye Cancer!

May 2, 2012
Finally made it home today after a busy morning. Rest first, more update in days to come.


May 3, 2012
See Highlight # 4 - Chemo completed

DJ Rosie: Youtube

This video is taken during Rosie's chemotherapy treatment. She is having fun with the musical guitar. Keeping a positive atmosphere during her hospitalization and Music Therapy helps! She is dancing along and clicking with her tongue as she enjoys the sounds and until she got distracted by a tv show. We thank God for always being with her.

2nd Intensive Chemo - Cycle 5

March 20, 2012
Rosie was sad a little when we got to SickKids since she just woke up from a long nap but adjusting better than I expected. Chemo starts tomorrow. Thanks for joining us in our journey against her cancer through your support and prayers.

March 22, 2012
Rosie had her 2 days of chemo drugs and we are transferring to Isolation Room tomorrow when she receives her own Stem Cell transplant. She is doing great! Been getting lots of practice with her colouring, counting and alphabets skills. Her appetite has been great in the past days and now starting to be less, part of the chemo side effects. She is doing better this cycle than her previous one. Thanks for your ongoing love & prayers for our family!

March 24, 2012
My poor little one had a fall today as she was leaning toward one of her bed rail and it came lose and down she went. We are grateful that she only obtained a small bruise on the forehead and that her platelets were still high so there were no extreme bleeding. Thank you Lord for always being with her. As policy, she had to be put on a crib. She is so smart and understands that she needs to be safe and accepted being in the crib despite of her initial disappointment. So proud of my little one!

March 26, 2012

After some evaluation, we were allowed to go back to the big bed. Told the staff that Rosie is smart and won't jump off the bed, she's been safe for the last 4 months. It was the bed rail that failed during her fall last week. Mommy just needs to ensure its fully locked each time

March 27, 2012
Rosie's hemoglobin was low yesterday so she had to have transfusion. Her appetite was also low but it has improved today with some pain medication. Still happy and playful. :)

March 28, 2012
Rosie is not feeling so well today. Possible mouth and throat sore (chemo effects). She received some morphine and it helped a little. No appetite so she will start again on TPN (food via her central line) and lipids tonight. She's getting lots of sleep.

March 30, 2012
Rosie is doing well today. She's happy, no discomfort, and eating better. We're just waiting for her White Blood Cells and Neutrophils (immunity) to go up so she can go home, hopefully this Wednesday, like last time. Happy Weekend!

March 31, 2012
Nurses mentioned that Rosie is one of the happiest and playful patient they ever had. She is a blessing to many. :)

April 2, 2012
Rosie's WBC is now 2.1 and that means her immune system is working again after the Stem Cell Transplant and G-CSF Protein meds. First day out of isolation, enjoyed her freedom playing in the playrooms. We will probably go home this Wednesday after some tests. And be home for 2 weeks. Lord, we thank and praise You!!

Also see Highlight # 4 - Chemo completed

First Intensive Chemo - Cycle 4

February 21, 2012

Rosie slept well and had a good morning. Unfortunately, her central line came off about an inch from her site, had to go for an x-ray. The line is still on the right area so they continued her chemo for now but she will need another surgery for a new central line again. At least, we are on the right place for it.

She received her first set of 2 doses of chemo today for cycle #4. It includes 2 drugs: Carboplatin & Thiotepa. The latter drug goes out through the pores via sweat glands so she requires 4 bed baths and mouth care per day until 24 hours after her last dose. They expect her immune system to drop by Friday on which she start to be kept on reverse isolation and low bacteria diet.
 
February 22, 2012
Rosie has received 2 days of intensive chemo drugs for cycle 4. No further chemo drugs until her next cycle, hooray! Currently, she is doing fine being playful but slightly weak. She will have her Stem Cell transplant on Friday to aid with her recovery.

She will have her surgery tomorrow for her fourth central line replacement which usually takes them minutes to do, she would require fasting from midnight.

Although, she is not officially on protective isolation until Friday, we were placed in one of the special rooms that has Laminar Air Flow system that continually filters the air. So there is this fan blowing against the head of the bed and the air pressure in the room is different from the outside. With her immunity dropping, I lean on God to continually protect and heal Rosie and for me to be healthy and be allowed to continue to care for her.

If all goes well, we could be home during March Break until her next cycle. Thanks for your interest and care in reading my long updates. God Bless!


Feb 23, 2012

Rosie showing off her bravery beads collection.

 You get a bead for each procedures she goes through (blood test, scans, x-ray, chemo, transfusion, surgeries, etc.) and wow beads for special times. And she just became a patient at the end of November. She's our brave hero.


February 24, 2012

Rosie stayed late last night since she had to fast this morning. She slept most of the morning and had her surgery after 3 pm. The surgery went well. She was so drowsy most of the evening post surgery so she didn't eat except for a glass of juice. She started to have some fever and nausea & vomiting tonight. They started her on antibiotics and anti-nausea meds. She will have a Stem Cell Transplant tomorrow which is like a blood transfusion containing her own WBC.

Rosie has been weak today with low appetite. She received her Stem Cell Transplant today and it went well, no side effects.   If she can't eat much, they will start her on TPN which is like Boost/Ensure going through her central line. She is well looked after. We also transferred to a clean isolation room. It will be our home for the next few weeks.

February 25, 2012

BMT Isolation Room

Very limited space for someone staying for long periods but totally clean. Parents have to go outside the room down the hallway to use the bathrooms. We are blessed that Rosie is mature enough to stay in bed and understands when mommy needs to go out for potty or meal breaks.

We were told that they only started last year for this unit to allow parents to spend the night with their children. Each room has a microphone but no camera for monitoring. We are glad to be able to stay with her. I can't imagine how the parents felt when they had to leave their child sick and alone.

We have set-up a clean area on the floor for some play time. They gave us the foam puzzle mats and we placed a blanket over it.

February 27, 2012
Rosie has lost most of her appetite so they have been giving her TPN and lipids through her IV. Otherwise, she has happy moments playing with her toys.

This was taken on the day she was receiving her red cells transfusion, TPN, lipids, and hydration all at the same time.

February 29, 2012

Rosie has been about the same. Still has poor intake but receiving nourishment through her central line. She has some mild discomforts but manages to be playful and cheerful. Her blood cells and platelets are lowering down which is expected as well. They will transfuse her when it goes too low.

We are getting to know our neighbours, and their stories are really sad and their kids are in worse situation than us. They are very positive and strong. I become speechless around them.


March 2, 2012
10 days after her Intensive Chemo - Rosie's doctors are happy and impressed with her minimal symptoms, returned appetite, and increasing WBC 0.1 (which was less than 0 yesterday). She had some dry throat, nausea, vomiting, sore in the diaper area and received transfusion. She didn't had mouth sores and severe rashes they expected in most cases. Majority of the day, she is happy, comfortable, and playing. God has answered our prayers. Thank you so much for your continuous dedication in praying for her.

March 4, 2012
Rosie's WBC today is at 0.5 and as soon as she makes her own Neutrophils (T-Cells), she can get out of isolation and be allowed out of her room. Hooray! God is great!

March 5, 2012
Rosie's WBC jumped up to 2.7 and her neutrophil at 1.21. So we're out of isolation. She is also eating and drinking well that she only needs her IV hydration at night. They are testing her organ functions again as baseline for her next cycle to start after Feb 20th. We're both excited to come home soon for March Break!

March 6, 2012
Rosemary's doing so well with WBC at 7.7 and neutrophils at 3.31 that we are being sent home.

Also see Highlight # 4 - Chemo completed