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.

Wednesday, October 31, 2012

Trick or Treat on day +335

We are back from a quick trip to Toronto's SickKids Hospital. Phoebe had her blood tested, a lumbar puncture to check the opening pressure of her spinal fluid (because it has been high in the past), and an eye exam. As usual, things were a just a bit complicated. 

The night before Phoebe was due to see her doctors, she started vomiting. She was perfectly fine one minute, vomiting the next, and then perfectly fine soon after. It was a short lived virus which I think is a good sign that her immune system was able to fight it off. It is a wonderful thing, that immune system. 

Her blood work looked good, a bit different because she was fighting something, but good, and her doctor was happy.  According to the eye doctor who looked in Phoebe's eyes yesterday, she still has papilledema. Phoebe is seen by the eye doctor at St.Jude and recently also by SickKids and there seems to be some discrepancy regarding whether or not her optic discs are "normal" or swollen.  St. Jude, who has been looking in Phoebe's eyes, sometimes as often as every two weeks for the past 8 months, says normal.  And SickKids says swollen. Only time, continued tests and good communication between hospitals will tell.  

In addition to this, her pressure was also a bit high for no apparent reason.

The plan is to repeat the eye exam and check the pressure with another lumbar puncture at SickKids in December and then again at St.Jude at the end of January, and hope that there is some improvement.

Each time I visit SickKids I am reminded of all that they do. There is a wonderful and very busy energy in this hospital and I love to just sit and watch all of the comings and goings. While Phoebe was napping, I had a chance to meet with one of her oncologists. The doctor who was responsible for bringing Phoebe to SickKids for that very first clinical trial. The doctor who thankfully gave us something to cling to when our hope for a cure was beginning to slip away. He gave us time, hope and supported us during a very difficult part of this journey and for that I am very grateful.  I am also grateful for all of the work that he continues to do to help other families who find themselves with few options for treatment and I am hopeful and excited to see all of the wonderful progress that is being made at SickKids.

This doctor and I discussed Phoebe and St.Jude and all that she has been through. At one point, he looked at her, sleeping peacefully, and said - I remember when we decided to have the palliative care team visit with your family.  I remember that too, I said.  And I do. That day and being forced to come to terms with facts that we didn't believe, was so difficult.  Then, with a slight grin on his face and pride in his voice he said, "she shouldn't have survived". His comment took my breath away, and with it came a flood of memories. Visiting with palliative care, being told our chances were zero, fighting so hard to be heard, refusing to give up. All of the tears. In that moment I felt like he was acknowledging how much we had struggled, while also saying - we did it. 

No one thought it was possible, but we did it.

And he is right. Statistically, there are very few Infant ALL survivors of a post transplant relapse, especially when a relapse occurs so early.  On paper, Phoebe wasn't supposed to survive. But she is not a piece of paper, or a statistic, or a number in a study and that is why we fought so hard to be heard. She is Phoebe, and like each of us, there isn't another like her. 

This doctor is doing what he can to make sure that the next family like ours does not have to be turned away, that treatment is offered, that stories are told, and that hope is shared. Hope, we have learned, is a beautiful thing.  

Today, Phoebe is 335 days post transplant.  We are so very, very close to the much anticipated and will be celebrated, one year post transplant date.  We are not out of the woods, but each day we get closer and closer to solid ground.  Each day brings with it more opportunities to live, love and experience life with the feistiest two year old I know, and her fabulous big sister. 

Tonight, Phoebe dressed up like a bunny and experienced  trick or treating for the first time. She was accompanied by a fantastic pirate and a beautiful fairy princess (her big sister and cousin) and she had a blast.  She was especially excited when she got her loot home and realized what is was that she had been collecting.  Her daddy also got to experience trick or treating (as a daddy) for the first time, and loved it. 

Note the carrot, what every trick or treating bunny needs.  Go Phoebe go ... 

1 comment:

  1. you bring tears to my eyes this morning! so cute in her costume! So happy for you! xx