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.

Saturday, March 22, 2014

The end ... of treatment

Phoebe had her last chemo yesterday. She rang the end of treatment bell and was cheered on by her wonderful nurses and staff at CHEO.  We left the hospital full of hope and joy. After 15 months of chemotherapy and steroids for this relapse, after radiation, and after treating this cancer for a third time, we are once again finished. It is exciting and terrifying all at the same time. Thankfully the excitement and joy outweighs the terror, but still, it is there. 

We have been here before. We have felt the joy and the hope and the terror of the end of treatment. We have worried about what will happen next and we have been heartbroken at news of relapse after relapse. Yesterday, we put worry aside and celebrated Phoebe. Phoebe doesn't know the fear of relapse. She doesn't worry that her cancer may return. She doesn't think in terms of data and statistics or odds. She is joy and life personified. She is hope and we will follow her lead as we always have. There is no way to predict what the future holds, for any of us, and it is much easier and more fulfilling to live each day than to worry about what happens next. This is what Phoebe does, and I believe that it helps her to thrive. It is, as one wise ICU nurse once said to us, the gift of blissful ignorance.

Childhood cancer is an unpredictable and terrifying monster. It has crept up on us when we have least expected it. It has surfaced in the middle of plans and completely turned our lives around and upside down, but I refuse to let it define us. At the end of the day, I am sure we will wish that we had worried less and lived more. After all, and as we heard a few times yesterday, to see Phoebe you would never know the obstacles that she has had to overcome, the struggles she has had to endure just to be with us, and I would like to keep it that way. I would like nothing more than for her to be "normal". She is our perfect leader in all of this, and with Mae, she has taught us how to live with childhood cancer. 

To be completely honest though, as hard as we try not to, we will live with the fear of relapse and the worry of side effects despite treatment being over.  Our reality is that "this" will never be over. Phoebe will be watched and monitored and tested for most, if not all, of her life. We live differently because of what we have been through, but rather than let it completely take over our days, we will put one foot in front of the other and watch Phoebe and Mae grow. It really is a gift. 

Yesterday, Mae and Phoebe climbed up and together they rang the end of treatment bell. They needed a bit of help, but they did it. It was a beautiful moment that I am thankful to have as a memory. Thank-you to CHEO and Candlelighters for recognizing the joy that comes with these small, yet very significant moments and for giving children and families a chance to celebrate and acknowledge the struggle and hardships of this life. Thank-you to CHEO's child life, Molly Penny and our wonderful nurses and doctors both near and far for celebrating and acknowledging Mae just as much as you have celebrated Phoebe and for recognizing that together, they are the most important members of this team. It is a beautiful thing to see Mae visit the hospital and be treated like the super star that she is and I will forever be grateful to all of our hospitals for this. Mae might be the only child out there that considers a visit to the hospital, a "fun time", but this speaks volumes for the hospitals that we frequent and the people that work there. She identifies each hospital for something unique. At CHEO, it is Molly Penny, SickKids has the play park that she loves, and at St.Jude, she loves the play rooms, wagons, and drawing pictures for our friends in the B clinic. She also prefers Memphis weather.  We all do. 

To Phoebe's doctors, nurse practitioners and nurses at CHEO, SickKids and St.Jude, thank-you for taking care of our girl. Thank-you to our child life specialists, interlink nurses, therapists, pharmacists, social work, technicians, researchers, fundraisers, volunteers, blood donors, friends and family. It takes a village and we are so grateful to have the team that we do. 

It is really hard to put into words just how grateful we are or how we feel about this army of people who have nursed Phoebe back to health countless times. How do you thank someone for saving your child? How do you put into words how this feels? I have no idea and I am often at a loss for words. These people who spend their lives taking care of children, researching cures, making things better, listening to parents, helping, providing shoulders to cry on or arms to hold us up when we are weak, who have saved Phoebe's life countless times, advocated on her behalf and given us hope. Who have sat with us on some of our darkest days and shared so many happy and miraculous moments. I have spent many days of this journey talking and venting and crying and questioning but also celebrating and laughing and sharing hope for Phoebe's future. To have this hope reciprocated is a beautiful thing. Together, Phoebe's army has saved our life. They have given us back the most precious gift. I hope that they know what they mean to us and to their many, many other patients and families. They are real life super heroes. Each and every one.

I am forever grateful and will probably spend the rest of my life trying to pay all of this kindness forward.

Speaking of paying it forward ... stay tuned for some big news about the second annual Parliament Hill Rally for a CURE. It is happening folks and there is strength in numbers. We are proof of that.

Go Phoebe Rose GO ....








Photo www.thesaltandlightstudio.com 

2 comments:

  1. Hi Jenny! As always, your words are poignant and profound - you had me in tears reading this! I am so so happy that Phoebe has reached this milestone, for her and for all of you, this is such a special day. I can't imagine what those nagging fears of relapse must be like but I am so very glad to know that no matter what may come, you truly do have an army of people who will be there for all of you. Hugs to you and your girls.
    -Lisa Kelly

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