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.

Monday, December 31, 2012

Out with a bang, 2012

If last night is any indication, 2012 is going out with a bang. A bang that includes high fevers, worried nurses, absent minded and dare I say, careless doctors ... and the sleepless and worry filled nights that seem to always come with life at CHEO. 

Phoebe spiked a fever yesterday morning and despite many signs pointing to a possible bladder infection, she was left to fight it off herself. Thankfully she is a bit better now than she was in the wee hours of the morning when her breathing was labored, her fever was high and not coming down with Tylenol, and she was waiting to receive antibiotics. We waited seventeen hours for antibiotics for a child who has a compromised immune system because the thought was that she would be able to fight this infection herself. Poor Phoebe, already climbing a mountain, was now expected to do more. It was nuts. This waiting turned the situation frantic. At one point this morning, there was a concern that Phoebe may be septic, and we know all too well how quickly a situation like this can turn from okay to terribly frightening and life threatening in a matter of minutes.  

Thankfully, she appears to be on the mend, she has received antibiotics, and as I write this she is not herself but is sleeping relativley peacefully. I hope the worst is over. 

I also hope to end 2012 on a positive note, with a happy, playful Phoebe. And without fevers. 

My family is very superstitious and because of this, as midnight approaches on the 31st of December, I always get a little anxious. I grew up thinking that in order to ensure that the year to come would be prosperous and good, certain things had to be done. I needed money in my pocket, a clean house, to be with friends,family, Jon ... and health. I am fairly certain that spending the eve of the new year in the hospital would not make the list. 

Custom also has it to celebrate the year that is coming, rather than the one that is past, but I am rewriting the rules. I am honoring 2012 for all that it has given us. 

Throughout 2012 we witnessed advances in the treatment of Leukemia, we saw great doctors at work and we benefitted from this hard work and these advances. 

In 2012, the Hospital for Sick Children (SickKids) in Toronto brought the NK cell treatment to Canada, to benefit children that might follow a path like Phoebe's. 

2012 brought us miracles, blessings and victories; some big and some small.

Phoebe started to eat on her own after being tube fed for 18 months.

We saw remission. Complete genetic remission and for many, many months we lived without  cancer. In fact, for all but one month of 2012, all signs and tests pointed to complete health, healing, and a future without cancer for our Phoebe. 

In 2012, at 14 months old, Phoebe walked for the first time. 

And then she ran.  

Phoebe had a tube free bath, she went swimming, she splashed in the splash pad and played in the sand at the park ... all firsts. 

In 2012, Phoebe and Mae attended their very first concert when they saw Raffi at the Roy Thomson Hall in Toronto. 

We witnessed a man walk over Niagara Falls on a tight rope. 

Phoebe Rose turned two.

We trick or treated for the very first time as a family. 

Mae started school, turned four and learned to ride a bicycle. 

In 2012, the bond between Phoebe and Mae blossomed into the most beautiful relationship I have ever been witness to. 

We celebrated one year without cancer in 2012 and we rejoiced as Phoebe reached her first post transplant birthday. I know now that Phoebe was not without cancer on this monumental day, but we believed she was and we celebrated it to be so, and to have had this day makes me thankful and hopeful that there will be another. 

2012 lifted us up far more often than it struck us down and even on the darkest days, hope triumphed over darkness. It was a year of firsts but although it gave us so much to be thankful for, it gave us back cancer and much work to be done in 2013.

We are welcoming the new year with heavy hearts that are made lighter with the hope and promise of a cure. 

Here is to our year. 

Lucky 2013.

1 comment:

  1. Jenny,
    I am in tears reading all your posts. We love and support you always.