The Relay to End Kid's Cancer

Together, the members of team Phoebe Rose Rocks ran 100 km on Saturday as part of the Sears Relay to End Kid's Cancer.  Together, we raised over $30,000 for treatment and research of pediatric Cancer.

We ran, walked, cheered, shivered, laughed, celebrated and raised awareness for this very important cause.  It is simply amazing, what we can accomplish, when we work together. 

Among us were many truly remarkable individuals.  The volunteers who devoted their day to making sure we were hydrated, fed, happy, motivated and cheered for.  The organizers who worked so hard to make this day a success.  The other teams and runners, who like us worked hard to raise money and awareness for pediatric cancer.  Some were running for children fighting cancer, some in honour of children who are no longer with us, and others because they recognize that children's cancer needs and deserves more awareness and funding.  A few runners completed the entire 100 km distance solo.  Amazing.

One solo runner spoke after the event. He spoke about how he drew his strength when things became difficult, from the children diagnosed with cancer, those who are fighting for their lives and those who are no longer with us.  They are the real heroes, he said.  

It was a heartwarming and unforgettable day and I am so proud to have been a part of it. Team Phoebe Rose Rocks was made up of old and new friends and family. Many team members have been directly affected by a pediatric cancer diagnosis. Some team members traveled from Toronto to be with us, and everyone took time away from their families, not only to prepare for the event, but to be with us for the day.

And it was a long day, starting at 7:30 am and finishing at 7:30 pm with our team crossing the finish line together. It was a pleasure to spend the day with this wonderful team of people and to be a part of an event that is growing by the year and is truly making a difference in the lives of children and families faced with pediatric cancer.

At last count, the Ottawa and Toronto teams of the Sears Great Canadian Run had raised close to $750,000 in support of pediatric cancer research and treatment.  So great.  

Thank-you to the folks at the Sears Foundation, the volunteers, my fellow team members, other participants, all of you who donated and supported our team, and my family for making this day possible and simply wonderful.

I don't know where we would be were it not for advances made in the research and treatment of children's cancers.  It is thanks to the great efforts of the people at the Sears Foundation and many others who are working to raise awareness and funds for much needed pediatric cancer research that my girl is able to keep rockin'.

  

Thankful

The countdown is on to the Great Canadian Run. Team Phoebe Rose Rock's 100km relay trek from Ottawa to Montebello.  We have raised over $26,000 so far, over $2200 of which is pennies. Amazing things can happen, it would seem, when we are all united in a common goal. Look what happened when we all put our pennies together. 

The wonderful staff at Alterna Savings in Ottawa and Toronto put their pennies together and raised $1265. Children have emptied  piggy banks, encouraged their parents to empty pockets, change jars, and together we have made a difference. Thank you to each of you who gave pennies and spare change. To the local businesses who participated in our penny drive - Pizaza on Beechwood, Eufloria, Margot at Fresh, the staff and teachers at Ottawa Carleton District School Board, Ashbury College, to those who have encouraged others to give pennies, and supported our team.

We recently celebrated Thanksgiving here in Canada. Jon and I cooked our very first Turkey and hosted dinner. Thoughts of this time last year crossed my mind often as we prepared for our very "normal" holiday.  This time last year we had just arrived at St. Jude. We were full of so much uncertainty and fear and holding on tightly to hope. Hope was really all that we had.

Fast forward to today and it is amazing how far we have come. Our hope for Phoebe's future has been made stronger by the doctors at St. Jude and every day that we live without cancer, each time tests come back with positive results, it becomes mightier and mightier.

Our lives are good and we have so much to be thankful for. The small things - a roof over our heads after nearly two years without work, sleeping in our own beds at night, watching Mae make new friends at school, enjoying time together as a family, spending very little of that time at the hospital, sitting down to a meal, watching Phoebe eat, grow, take baths, dance, run, and play with her big sister.  Being able to hold our girls tight, cuddle, to rock Phoebe to sleep. A life without feeding tubes, central lines and countless medicines. Looking forward to trick or treating (Jon's first time with the girls), and our first Christmas at home.

We have a Thanksgiving tradition in my family.  Each year (except this one) we go around the table and say what we are thankful for. This year, although our turkey was delicious, it was served rather late, so perhaps the insatiable hunger took over and this was overlooked. The next day however, Jon and I were talking about this and about all that we are thankful for and he told me what he had wanted to say. And because it echoes my own sentiments, I thought I would share. 

We both agreed that we could not have survived this year without the help of our family and friends (old, new and some we have yet to meet), our village, and it is for them that we are so very thankful. At times it has seemed that we have had an army behind us. Holding us up, walking with us through the darkest days, offering a listening ear, a hug, a supportive message, a prayer. Sharing in our hope. You have all helped us immensely. 

Thank-you.  

All of the funds raised for the Sears Great Canadian Run will go to CHEO and Sick Kids. Life saving and so very important, Pediatric cancer treatment and research.  If you would like to make a donation, please click here .

I have sat down and started writing this blog post countless times.  There is so much to say, yet I don't know how to say it.  My heart is heavy.  My friends, Kristi and Logan, recently lost their sweet baby. This is a family that we met while at St.Jude, their baby Wesson, was diagnosed with Infant Leukemia and their older son, Keegan, is the same age as Mae. Mae and Keegan became instant friends and they connected in a way that I have yet to see with another little person.  Wesson was just 13 months old when he died.

Now today, another friend, another baby, another fight to survive. Brave Matthew, also diagnosed with Infant Leukemia, is now in the ICU and working so hard to overcome all of the obstacles that have been placed before him.  He is on breathing support, completely sedated to allow his body to heal.  I cannot imagine what his parents, or Wesson's parents are going through. Just the thought of all that they have seen and are witnessing brings me to tears.  It is just not fair.

We need to do better for our babies. These babies deserve more than just "options" for treatment, more than the small chance of a cure that they are given, a cure that is all too wrought with complications.  They deserve to grow up without cancer.  

Last month was Childhood Cancer Awareness month and I really struggled with what to post in this blog. I wanted to challenge everyone to give blood because one single Leukemia patient requires blood from 3 donors each week just to survive. I wanted to urge each of you to join the bone marrow donor's registry as many people who fight cancer will need this to survive.  I wanted to ask you to give. To give to organizations like St.Baldricks, St.Jude, Alex's Lemonade Stand, Cure Search, Childhood Cancer Canada and others that support and fund childhood cancer research. I wanted to tell you stories of the many children that I have met, that have inspired me and moved me to be a better person. I wanted to increase awareness and support for children fighting cancer.  Instead I wrote and I erased.  Over and over again.

Last month we lost too many friends.  We spoke with families who are in the midst of the terror that comes with treatment, the devastation that comes with complications, relapse, death. Last month there was too much grief.

Yet in the midst of all of this, we lived. 

I brought Mae to school (without tears), I played with Phoebe, I listened as complete strangers commented on how cute my sweet girl is, how small, her "unique" hair style.  To those who focused on size and hair, it took almost everything in me not to blurt out ... she is small because she has fought cancer, and as crazy as this hair is - it is precious because it is growing back for the third time. But instead I said nothing.

All around you are children who are fighting or have fought cancer.  All around you are parents who have had to say good bye to a child. Who are picking up the pieces.  We are not obvious, and you probably can't pick most of us out in a crowd.  Our children are not necessarily bald, or small, or obviously sick.

In Canada, this year, 1500 sets of parents will hear those devastating words - your child has cancer.  1500 lives will be turned upside down.  While all of this is true, the statistics surrounding childhood cancer and its support remain dismal at best.  One new drug in twenty years, 4% of National funding, a penny from each dollar raised, a disease often referred to as orphaned.  Our children deserve better.

And so, if you are able.  I would ask you to please give blood, register as a bone marrow donor.  Donate.  I truly belief that a difference can be made.  I have seen miracles happen and I have witnessed wonderful progress.  We have met many amazing people on this journey, people who are working tirelessly to save our children, to advance the cure, to better the lives of children and families who are fighting cancer. Phoebe has benefited from this progress, and she is here today because of these blood and bone marrow donors, this hard work, and these people who work tirelessly to advance the cure.

Please also take a moment and send some love and prayers to sweet Matthew and his family.  He is working so hard, as he always has, to survive and his family deserves some good news.

To register as a bone marrow or stem cell donor, please visit.
www.onematch.ca

To give blood, please visit. 
www.blood.ca

Three hundred days without Cancer

We have been busy.  Adjusting to school life has been difficult for Mae.  Despite the fact that her first week was wonderful and she would run to join her class in line, she has since become the child that cries and clings to her mother screaming "I don't feel well, I am going to vomit!!" while her teacher asks, "do you want me to just take her?", at which point she is pulled from me as if the place she is going is one of extreme torture.  It is not, and I need to keep reminding myself of this.  It is "just" school.  

All of this crying and chaos is hard on Phoebe too and she will often say, "what happened?" when Mae starts to cry and then she will cry as Mae is pulled from us and brought into school.  It is hard, but I know that it will get better.  Our lives have not been normal, and Mae and I have rarely been  separated for the past 2 years so it will take some time.  Time, as they say, heals all wounds.  I see glimpses of my social and happy girl emerging at school and this makes me smile. I know that Mae loves school, she just wishes Phoebe and I could join her in all of this excitement.

In other news, we have recently returned from Memphis.  Phoebe saw her transplant doctor, the dentist, and had her blood tested.  We returned home happy, tired, and 4 teeth lighter.  That's right ... 4 teeth lighter.  It would seem that Phoebe's four front teeth were loose and an x-ray showed a lot of damage to the root.  They had to go, or they would have fallen out themselves and caused more trouble.  They are just teeth, is what I have been telling myself, and she will get another set in good time.  Until then she will have a lovely gummy grin.  This gummy grin also includes some shiny silver as a few of her back teeth have also been crowned.

A few more stories to tell her friends when she starts school. 

I have found myself thinking lately about what life will look like when Phoebe starts school.  I have been worrying about her missing teeth and wondering if she will be teased or if her speech will be affected.  Then I stop, because to be thinking of Phoebe going to school is simply amazing as there was a time not too long ago that we weren't sure if Phoebe would see another birthday.  And now school?  Wonderful.  All of those other things will just work themselves out, and as Jon likes to tell me, if anyone even thinks of teasing Phoebe, she will tell them where to go.

Yes, I think she will.  

Tomorrow we will be 300 magical days post transplant, Phoebe's bloodwork at last check looked excellent and her doctor even gave her the okay to start daycare, if she so desires.  He commented on the strength of her "warrior immune system". We are so very close to our one year milestone and Phoebe is doing so well.   

Shout it from the roof tops.  Happy day + 300.

Beautiful Bryce

Yesterday we celebrated the life of one very exceptional little boy.  Bryce Jude.  Bryce was one of the first people that we met while at CHEO.  Although we didn't truly meet him at first, only heard him.  We were the lucky family that was placed in the room beside the playroom and Bryce would play hockey with his family in the hallway outside our room.  I remember hearing him play, and the sounds of joy and laughter and life going on despite all that he was going through became a wonderful source of comfort for me in those very early days following Phoebe's diagnosis.

We did eventually have the pleasure of meeting Bryce and I can honestly say that I will never forget him.  Bryce was a beautiful boy with a simply amazing spirit.  He radiated warmth and happiness and his energy was contagious.  The first time I met him, really met him and spoke to him, he told me more about Phoebe's central line and dressing supplies than any nurse or doctor.  He knew what type of line it was, what dressing we used and he even had suggestions as to how it could be dressed differently.  He asked to look at it, which he did very gently with big eyes full of wonder and an eagerness to learn.  I thought he was amazing.  The smartest and most interesting six year old I have ever met.  He seemed to understand all that Phoebe had been through and treated her with so much care and compassion that thinking back to it now brings tears to my eyes.  Two kindred spirits united in their courage, strength and tenacity.

Yesterday at his service, many, many people gathered, most dressed in brightly coloured hockey (mostly Sens) jerseys, to pay tribute to a beautiful and courageous seven year old boy who despite his all too short time on this earth made a huge impact.  It was a beautiful sight and a true testament to just how many lives Bryce touched so deeply.  His mother and the reverend spoke about his lust for life, his energy and eagerness to take it all in, to relish in all that life had to offer.  The message was clear and the reverend said it often.  Seize the day.  Do as Bryce and his family would have done and take nothing for granted.  Live life to the fullest and enjoy even the simplest things.  Have fun and play hard.  Love and share and appreciate even the small things.  This is a lesson that I have often heard families who have been affected by Cancer share.  It is incredibly unfortunate and unfair that our children and loved ones suffer or are taken from us for us to gain this perspective or to learn these lessons, but with a cancer diagnosis comes a heightened sense of just how important life is.  Each day truly is a gift. 

Last night as I came home, I looked up to the sky and the stars seemed to shine just a bit brighter than usual.  I immediately thought of sweet Bryce and his beautiful spirit and thanked him for the many things that he has taught me. 

Hug your children and loved ones tightly today, tonight and every day and night in which you are blessed to have them with you.  Never forget just how precious life is.

 Phoebe and her friend Bryce :)

Go team Phoebe!

This is a busy weekend for team Phoebe Rose Rocks.  On Saturday, we are holding a garage sale with all proceeds going to support our fundraising efforts for pediatric oncology at CHEO and Sick Kids.  If you are in the area, and would like to shop fabulous treasures and/or munch on delicious baked goods, please visit us at 35 Crichton St. in New Edinburgh.

Or, if music is your thing, A Night To End Kid's Cancer, happening on Saturday night at Zaphod's in the Byward Market should not be missed.  Doors open at 7pm, tickets are $20 and can be purchased at the door, and we have a wonderful line up of performers.  Once again all proceeds from ticket sales will go to this wonderful, very worthy and needy cause.

In other news, I have now rolled just over $300 in pennies (with more to go) all of which is going to support out fundraising efforts for CHEO and Sick Kids.  That is a lot of pennies, so thank-you very much to all of you out there who donated. 

I believe that a cure will be found and I also believe in the doctors that we have met on this journey who are working to make it so.  So many work tirelessly to make life better for children with Cancer.  While we were in Memphis, one of our transplant physicians came to visit St. Jude to learn about the natural killer cell therapy that Phoebe received with the hopes of bringing it back to Canada.  We met with her while she was there and I remember her telling me how excited she was to do this, and how it would mean that now there will be something else to offer families who find themselves where we were a year ago.  Sick Kids is going to be one of only four hospitals in Canada and the US to be offering this groundbreaking, promising and innovative treatment and this is just one of the positive steps that they are taking forward and towards a cure.

This makes me happy beyond words because it means that the treatment that Phoebe received is recognized as a viable option, but also that the next family like us will not have to travel so far from home to find their cure.  Progress is being made.  Wonderful progress, and it is because of this progress and these determined doctors that I am running in the Sears Relay to end Kid's Cancer.   

Please come out this weekend, help us give back to CHEO and to support Sick Kids in their efforts to find a cure for children's cancers.  Help us make a difference in the lives of children with cancer. 

If you are unable to come out and would like to donate, you can do so at  http://searscanada.akaraisin.com/Pledge/Participant/Home.aspx?seid=4840&pid=893841&mid=9

Finally, a fellow Sears runner,  member of our team "Phoebe Rose Rocks, and mother to Cole who is an amazing and very brave childhood cancer Survivor,  made this beautiful video that I think everyone should watch.  It is called CHEO Warriors and offers a glimpse into what these tiny fighters and their families go through each day.  Please watch. 
https://www.youtube.com/watch?feature=player_embedded&v=6V1GHLWuJ4I

Happy day +288 for Phoebe Rose.

First day of school and 100 % chimerism

Tomorrow is a big day.  It is Mae's very first day of junior Kindergarten.  She is excited and nervous and I am excited and nervous for her.  We went to meet her teacher yesterday, who oddly enough, taught me French in grade 4.  I am so happy that we are all back home so that Mae can make this huge step and I am hoping to not be the mother who can't hold back her tears or leave the school, come tomorrow.  I will, however, be the mother taking as many pictures as I possibly can. 

As for Phoebe, she is great.  Growing and bossing her big sister around everyday.  Her latest word is "space", and she will make herself heard if anyone is following her too closely up the stairs to the slide.  After shouting "need space!" she will usually say in a proud voice, "by myself" - she is an independent little lady, our Phoebe.

Phoebe and I went to Memphis last week.  She had her blood tested and her chimerism is perfect at 100% donor cells.  They also tested her T helper cells, these are very important cells as they will protect her against viruses and they have also shown to be effective in fighting cancer cells.  They are wonderfully within normal range and have also increased, from 400 to 490.  Go Phoebe go.  As each day passes and we move further away from this cancer, the worry and anxiety that I feel becomes smaller.  Talking to Phoebe's doctors also helps to manage my fears and on this trip to Memphis he reminded me that as we get further out, Phoebe's chance of relapse becomes smaller.  He also used the word "strong" to describe Phoebe's new immune system.  Strong.  It is strong and the hope is that if any bad cells try to come back, she will fight them off. 

While we were there we also saw the eye doctor who was happy to report no change to Phoebe's eyes or vision and said that everything looks normal.  Again, loving that word, normal.  We also saw the dentist who agrees that Phoebe's teeth need a lot of work.  They will do the work at St. Jude sooner than here at home, and so we are headed back there in a couple of weeks for dental surgery. They plan to do an xray to assess the damage before doing any repair to Phoebe's teeth, but the dentist did say that she will need crowns on most if not all of her top teeth and a few of her bottom ones.

In other news, please don't forget that September is Childhood Cancer Awareness Month.  Wear gold, not pink this month.  Honor the children who are fighting this disease, the ones who have lost their lives, and the families who are left to pick up the pieces. 1400 children will be diagnosed with Cancer this year in Canada.  46 children will be diagnosed with cancer today in the US.  


This picture was taken a week before Phoebe was diagnosed with infant Leukemia.  Before our lives were turned upside down.  She is two months old.  I remember working so hard to get that smile.  I look at this picture now and I search for clues, things I should have seen that might have alerted us to how sick she was.  There is nothing.  Just like today, she is beautiful and bright.