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.
Saturday, May 26, 2012
Thursday, May 3, 2012
Time to Celebrate: Chemo treatment completed!
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| 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
WBC now 3.8, were out of isolation. Already had some playroom time with our first day of freedom.
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 journe
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| Good Bye Isolation Room, Goodbye Chemo & Goodbye Cancer! |
Finally made it home today after a busy morning. Rest first, more update in days to come.
Highlight # 4 - Chemo completed
Friday, April 20, 2012
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.
Thursday, April 5, 2012
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!
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!
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
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