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.