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.

Tuesday, September 25, 2012

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.

Monday, September 17, 2012

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 :)

Friday, September 14, 2012

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. 

Happy day +288 for Phoebe Rose.

Thursday, September 6, 2012

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.