On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. On November 18th 2015 , she took her last breath. This is her story of hope and love in the face of cancer and despair. Phoebe always brought the joy and continues to inspire us to make a difference. It is best read from the beginning. Thank-you for visiting.

Sunday, April 28, 2013

Amazing people

On Friday, Phoebe had a great visit to CHEO's medical day unit. It was short and it was sweet because despite the chemo she has been receiving, her blood work all looks normal. Wonderfully normal. Her hemoglobin has even climbed up a few notches and while still a bit on the low side, is great for someone like Phoebe. Her platelets are great, and her bone marrow is working hard to pump out all kinds of healthy and strong cells. I looked at the blood work and one word came to mind. Robust. The word her doctor at St.Jude used to use to describe Phoebe's cells and immune system. Robust. I like this word a lot so I try to use it as often as I can.

Today we had a visit from CTV news. They have been following Phoebe's story and would like to feature her in their "amazing people" series. This warms my heart because of course I also agree that Phoebe is amazing - she is incredible, unstoppable and she inspires us everyday, but her story is bigger and greater than her two year old self. It is made rich by the people that we have met on this very long journey. These people who have helped her to be the girl that she is.

And so, this blog post is for them. These people who have greatly inspired us, who have held us up during those very dark days. Who have celebrated victories with us and shared our heart ache and disappointment. The people who together have saved Phoebe's life. Who have held our hand and offered a shoulder to lean on. The people who have pulled up a chair beside us and listened. Who work behind the scenes, searching for cures and answers. Those working to raise awareness and funds for life saving pediatric cancer research. The advocates. And our doctors who have done these things and more, they have sacrificed time with their own families to make sure that we have more time together.

Phoebe is blessed with so many wonderful doctors. There are her doctors at CHEO who were with us in the very beginning and who are still with us. Her primary oncologist at CHEO works closely and very well with her doctor in Toronto and Memphis to make sure that Phoebe has the best care. She is amazing. Phoebe's oncologist at SickKids is a person for whom there is not enough good that can be said. We cannot say thank-you enough to this man, who in so many ways, has saved Phoebe's life. He was the doctor who we turned to after Phoebe's first relapse and above all else he gave us hope when all seemed lost. He is an amazing person and doctor and is doing incredible work at SickKids. This work has benefited Phoebe, but is also benefiting countless children. He is responsible for bringing to Canada and SickKids the clinical trial that Phoebe was first treated with, and in addition to this, he is improving options for Canadian children who have exhausted all conventional ones. His hope is that in the future, Canadian children will not have to travel so far away from home for life saving and innovative treatment and I believe that he will make this happen. He is an excellent doctor and we are lucky to know him and have him on our "team". Today, although Phoebe is doing very well and is without disease, he continues to explore options with Phoebe in mind, he is working on contingency plans, just in case. Simply and without a doubt, he is amazing.

Phoebe's transplant doctor at SickKids is the person who first suggested that we go to St.Jude for treatment, he was always so steady in his approach and thinking. He would say to us, when we were desperate to save our girl, that we needed something "novel" and innovative. He pushed for this type of treatment rather than giving more of the same and when I worried about what to expect at St. Jude he said to me - "just go. This is what Phoebe needs. Ask your questions when you get there". And he was right.

And then once at St.Jude - we were greeted by so many amazing people. Doctors, nurses, nurse practitioners, physical therapists, radiation therapists - all amazing and all part of this story. Together they treated Phoebe as a whole person, helping her to walk, talk, eat, and live her life while also treating her disease. Phoebe's primary physician at St.Jude has done so much for our family. In fact, each of these people and doctors deserves their own blog post and even then, I would still have more to say. They saved her life and upon learning of this most recent relapse, her primary transplant physician stayed in touch with us and our doctors at home, and never gave up on Phoebe or on searching for something to help her. He understood the stress and heart ache that we were feeling and was always there to answer our questions. He is also incredibly optimistic and hopeful and at times it seemed like he treated Phoebe like she was his own. He also continues to search for options, just in case Phoebe may need them and knowing that we will probably never have to fight like we once did for treatment for Phoebe, is an incredible and heartwarming feeling.

I wish everyone could experience the care that we have had for Phoebe. Our journey and our situation has been far from ideal, but it has been made wonderful in many ways by the care that we have received. To know with all certainty that everything that can be done to save your child is, makes this sometimes unbearable life better. Without all of these people, these heroes, who I know work so hard and sometimes around the clock, Phoebe would not be here. We will forever be grateful for them.

Knowing them is why I believe that there will be a cure for this disease.

And then there is our community, and the amazing people who fill it. Those who have organized events and fundraisers, who have added Phoebe to prayer lists, sent messages of support and love, the young people who have made wishes for Phoebe to grow up big and strong. All of these people have made this journey easier. Our community has lifted us up, on days when all seemed impossible. Without this support our family would not have been able to travel this road together.

Thank-you, from the bottom of our hearts, to all of the amazing people in our lives.

Wednesday, April 17, 2013

Life is good, right now. We are settling back in to our house, Spring is in the air, and Phoebe is beautiful and strong. Mae is loving school, she is happy, we have taken their bikes out of the shed, we are looking forward to seeing our flowers bloom this spring and getting ready to plant a vegetable garden; full of hope that we will reap the benefits. This will be our first complete Spring in this "new" house. The first Spring spent without extended stays in the hospital. The first time we will see the yellow blooms on a forsythia that was planted almost three years ago. Life is good.

Phoebe goes to CHEO once a week, for blood work, and/or chemo. She has no side effects from her first doses of chemo and this week she will receive another dose. She has an MRI scheduled for the beginning of May which will be her first post radiation scan and I would be lying if I said I wasn't nervous, or scared, or a terrifying combination of both. We live with this fear everyday, but we also live with joy because Phoebe is here. We live with the hope that we have done everything we can to make sure that Phoebe sees a lifetime of Springs. We have learned throughout all of this that anything is possible.

Every day, however, I am reminded of just how devastating this disease is. Yesterday, my friend lost her beautiful boy to AML. He fought this leukemia for many years and like Phoebe, was treated at St.Jude. He fought so hard and my heart breaks for his family. Last week one of our neighbours at the Target House lost their precious daughter to Leukemia. To put in perspective, our reality. On our floor of about 12 apartments, only two children have not relapsed or passed away since we moved out last year.

There is always hope and wonderful things are being done to raise awareness. Mae's french teacher, Daun Lynch, is riding her bicycle across beautiful Newfoundland this summer to raise awareness for pediatric cancer. She is going to shout it from the rooftops, tell Phoebe's story as she goes, and I think this is simply amazing. There are great people, heroic people, all around us. You can check out her blog and journey at www.ridingforphoeberose.blogspot.com

In addition to this, there is a very special house at this year's Great Glebe Garage Sale. At 108 First Avenue in the Glebe, you can shop for treasures, sample delicious baked goods, cool off with a glass of lemonade, and support Candlelighter's"Suite Seats" program. 100% of the proceeds will go directly to the Refuse2Lose Team Bryce initiative of raising $50,000 per year for this program. The "Suite Seats" program allows children with cancer to enjoy hockey games and events at the Scotia Bank Place. Allowing families much needed time away from the hospital and children much needed time to just be kids, regardless of their diagnosis. It is a truly great program that my family has benefited from. Refuse to Lose Team Bryce was created in loving memory and honor of Bryce Jude. A beautiful and heroic boy who loved hockey and the Ottawa Senators. Mark May 25th on your calendars and check out the following link for more information on how you can help! https://www.facebook.com/events/457208547691692

The photos below are some of the beautiful wishes sent to Phoebe from her friends at Manor Park school.

Tuesday, April 9, 2013

Rock the Arts at Manor Park

All continues to be well and Mae is loving being back at school. On the mornings that I have dropped her off, she has joined her class with ease and excitement, full of smiles. Not at all the tearful girl that that left me each morning in the Fall. It warms my heart to see her so carefree and joyful. The main issue at drop off right now is the fact that Phoebe would like me to leave her at school also. Yesterday she cried and said "drop me off too" and then when I explained that she was too young for school, she cried for Mae ... all the way home. When we went to pick Mae up at the end of her day, the smiles and joy on Phoebe's face were palpable. She was excited to see her sister, but also to be back at the school.

Phoebe had her first round of chemo last week and all went well. She has had no side effects yet, and will have her blood tested on Friday to see what her counts look like. Our doctor has described this as "gentle chemo" and we are hoping this proves to be true and that we continue to see no side effects and that her immune system and counts will remain strong. This plan of maintenance chemo is for a year, but many of Phoebe's doctors worry that before the year is up we will be pursuing other options due to positive minimal residual disease. We will cross that bridge if it comes and I am hopeful it will not. I am, however, still trying to wrap my head around another year of therapy as at times to treat this cancer feels like running a marathon.

We are counting our blessings, as Phoebe has responded to and handled all of her treatment amazingly well. We continue to hold on to hope for more positive news and special moments.

Speaking of special moments, Manor Park Public School continues to be not only a wonderful place but also a great source of support for our family as we get back on our feet. This Thursday night at 6:30 in the school gym is a puppet show fundraiser. "Rock the Arts" will be putting on an Animal Adventure puppet show, it looks to be fantastic and lots of fun.

Friday, April 5, 2013

Phoebe is doing very well. She had an appointment at CHEO today for blood work and a visit with her doctor. Her blood work looks great, everything within normal range and there are no concerns. We saw familiar faces and settled in to the clinic at CHEO well. It is another home away from home in a lot of ways.

The plan has been set and agreed on by all of Phoebe's great doctors and Phoebe started her maintenance chemotherapy today. She will get a combination of three different chemotherapy drugs once a month ... for a year. Or that is the plan right now. She did receive the first dose of two drugs today, the third - a steroid, has been held as we are trying to have Phoebe's t-cells harvested and stored for future use, if necessary. In case of another relapse, they would be available for use in the very promising trial using modified T-cells at the Children's Hospital of Philadelphia (CHOP). With this most recent relapse, we had a very small window of opportunity to harvest these cells and in the end they were not eligible for this study. The hope is that the doctors in Philadelphia will agree to do this and that without steroids on board they will be eligible and can be used if we need them. But the biggest hope of all is that we will never need them.

Throughout this year of maintenance therapy, Phoebe's bone marrow and abdomen (where the mass was, never to return again), will be monitored closely. She will have scans and bone marrow aspirates once every three months, and the first will be at the beginning of May. This will be the first MRI post radiation and I am already envisioning a beautiful belly and healthy bone marrow, empty of anything that does not belong. Perfect scans. My job, among other things, will be to think positively as often as possible and refuse to let those other much darker thoughts in. To continue to believe in mighty Phoebe Rose.

In other news, Mae had her first day back at school today and was very excited to see her friends and her teacher. She had a great day and was welcomed back with open arms. Phoebe, on the other hand, was a bit upset to leave Mae at school and when we picked her up and she told us all about her fun day, Phoebe asked if she could go to school too. When Mae told her no, that she was too little. She crossed her arms over her chest and said "I don't want to talk to you anymore". So eager to do all that her big sister does.

We are back at CHEO in one week, and until then plan to enjoy all that home has to offer. We are hoping we can catch some late season sugar bush fun this weekend which will be another first for Phoebe. Thankfully the snow has stuck around so that we can enjoy a bit of winter in Spring!

Go Phoebe Go ...

Wednesday, April 3, 2013

Home sweet home, once again.

We are home. This feeling of coming home after time away has become somewhat familiar to us. The excitement, the joy, the looks of pure happiness on Phoebe and Mae's faces. It is always so good. And it is so good to be home.

We are thankful for family and friends and to be back among these people that we love and have missed.

Soon after our arrival, Phoebe's doctor from St.Jude called and so we now also have some answers to our questions. I really can't say enough about how wonderful the doctors that care for Phoebe are. Despite this disease that has proven so difficult to cure, the amount of treatment that Phoebe has received, the number of times she has relapsed, and the odds that continue to stack up against us, there is always a beautiful glimmer of hope in these conversations. The heartache we went through with Phoebe's first relapse, almost two years ago, and the fight we had to have to convince our doctors at home that it was worth it to try one more time to cure Phoebe, has me always expecting the "talk". The talk that parents who are in a situation like ours come to expect. Depressing and heartbreaking talk of odds, slim chances, risk versus benefit, toxicity, trying to decide what is best from the dismal and sad options available. While we have had our fair share of these talks, today I was met with hope, optimism, and promise. Not promise of a cure because that is something that no doctor can promise to us right now, but promise to try to do as much as is possible. Promise of contingency plans, promise to search for options. To advocate for Phoebe. This warms my heart.

We have truly remarkable doctors on our side. And I like to think that Phoebe has changed some minds about just how impossible some things may seem. She has made believers out of her doctors. Or more likely, many of them have always believed.

The plan, that is agreed upon by our doctor at St.Jude, SickKids and CHEO is to continue a regimen of maintenance chemo. This will be low dose chemotherapy, given for a year, with the hope that it may be all she needs to remain without disease for life. It will allow her to live a somewhat "normal" life as although it will suppress her immune system, it is not designed to wipe it out or make her sick. If she gets sick we will stop, her doctors have said. She will also be monitored closely with regular bone marrow aspirations and scans every 3 months or so. Samples of bone marrow will be sent to St.Jude for testing, but most of the tests will be done at home. Phoebe will get to live her life. I would go back to St.Jude for each and every test if that was what was decided. It is there that I feel the safest and it is there that I feel closest to a cure, but it was clear when I spoke with Phoebe's doctor that he wants her to live her life as fully and as normally as possible. It is not about me, after all, and he is right.

The plan is to give us time with a hope and a goal to cure Phoebe of this disease. There is no right answer or right path to take. There is no one who is just like Phoebe and so she is blazing her own trail and we are following the advice of these doctors who have Phoebe's best interest at heart.

When I spoke with this doctor today about the potential of still getting into the NK trial at St.Jude - I asked about it for the future, for when it is in its next phase and therefore not requiring so much disease to qualify. He replied, well I hope Phoebe will be cured by then or have pursued other innovative treatment.

A believer.

Because really, when you are faced with this reality and these never before charted waters, why not believe that anything is possible. We have had nothing but good news since beginning to treat this relapse. Phoebe has surprised her doctors and exceeded all expectations. She has fought and proven that it is worth it to try one more time. Or as many times as we need to to guarantee a life time and a cure.

We are home. We are blessed. We are grateful and we are full of hope that Miss Phoebe will continue to shine.

She is mighty.

Thank-you also to our community of believers. To each of you who have come along with us on our journey. We are still traveling but on a road made easier by your love and support.

Phoebe hopes to see some of you "out and about" soon.

Monday, April 1, 2013

Coming home without cancer ...

We are once again booking flights. This time we are heading home to Ottawa and we have good news.

The final minimal residual disease bone marrow results are back and they are negative. No leukemia was found.

Go Phoebe go!

We have a few details to work out regarding what is next, as our doctors are still in agreement that more treatment is needed, but this is amazing news. The dark cloud that followed us here has parted and we are so relieved.

There is no way to predict what will happen next, what the future holds. We can only take it one day at a time and hope and pray for more days and more time.

Thank-you to Phoebe's incredible team of doctors and nurses both at St.Jude and at SickKids and CHEO for always taking such good care of our sweet girl. We are blessed.