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, October 26, 2014

Four Years ...

Four years ago today we were told that Phoebe has leukemia. I knew that something was wrong and had visited the emergency room at CHEO multiple times only to be sent home with a "healthy baby", a hand-out on fevers, and a label of anxious new mother. I wish they had taken me seriously and run a simple blood test. 

Although I knew something was wrong, nothing could have prepared me for that day. The thought that my child would have cancer never crossed my mind. 

That day seems so far away today as I write this from the ICU at St. Jude. Back then we were unaware of the road we were about to take, the shockingly low survival rate for infant leukemia, the harsh treatment, the side effects, the lack of funding, the absence of new medicines and funding for research to find cures. We didn't know about the lack of advances in the treatment of this disease and the far too many unanswered questions. We just wanted our baby well and had no idea what we would need to go through to achieve this. 

Since that day, we have watched Phoebe endure more than most of us will in a lifetime. In fact, she endured more today than most of us will in a lifetime. We have struggled in every way a family like ours can struggle. We have fought for treatment. We have had to relocate to Memphis and St. Jude multiple times. We exhausted all treatment options in Canada in 2011 and have been unable to access anything new at home since then. We have fought the Ontario government to gain access to a targeted therapy that was only available in the US. Thanks to the hard work and determination of an amazing community combined with an understanding and sympathetic Health Minister, we were able to receive this treatment, but the long wait to receive it caused Phoebe's disease to spread. The effects of this wait and a lack of availability for these treatments in Canada resonates today as we watch Phoebe fight for her life in the ICU. If we had been able to start treatment as soon as Phoebe relapsed. If this treatment had been available in Canada or if Canada had a system in place to allow families to access out of country clinical trials, we would have been months ahead of this disease. Phoebe would not have been without an immune system for a month before starting this most recent treatment. We probably wouldn't be in the place we are in today. If. If. If. 

It doesn't help Phoebe to look back and wonder if all of this could have been avoided, but we can work to make change, and part of that change is awareness and sharing Phoebe's story.

Today, Phoebe is still in the ICU. We have seen some improvement but there are still so many unanswered questions. Each day we watch her bilirubin climb, her belly swell, and her fevers continue. She still has no immune system and so nothing to fight the multitude of infections that we know she has. She is on so many antibiotics and antifungal medicines that it is hard to know what is causing what and at times it feels like we are spiraling out of control. We are weighing impossible risks versus hopeful benefits and there are no right answers. At times there are no answers at all. 

We are scaling back on some of the antibiotics and antifungal medicines to help Phoebe's liver and tomorrow, Phoebe will receive a boost of granulocytes - these are the cells that we desperately need as they fight infection. I will go to the donor room at St. Jude and give my cells, and later in the day, they will be given to Phoebe. This will make Phoebe very sick. Sicker than she has been because these cells will go to the many infections that Phoebe has, but the hope is that although she will probably get worse, she will hopefully also get better. We need Phoebe's own immune system to recover so this is a temporary fix, but we are hopeful that it will carry us until we see count recovery. 

To everyone who has been traveling with us on this journey, thank-you. We have been blessed with an army of support and love and for this we are so grateful. If love could cure cancer we would all be at home and safe in our beds. 

It has been a long and very hard road, and sometimes it seems impossible, but when I think back to the past four years, I remember more joy than sadness. When I think back I see feisty Phoebe and I am filled with hope.

We have come so far. 

1 comment:

  1. Standing with you and your army of support & love <3 Praying & sending love & hugs to your sweet Phoebe & you from the Henry family.