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, August 24, 2011

Non-stop action

As usual, I am amazed at how quickly things can change from one day to the next.  The one remaining spot in the clinical trial at Sick Kids, for the treatment that could very possibly put Phoebe back into remission, has opened up.  We are going back to Toronto.  Phoebe has to have some more testing done to make sure that she is definitely eligible for the trial, but if all of that goes well, she will be starting treatment on Monday.  Finally some good news.

Our doctor at Sick Kids, who will also be following Phoebe's progress while she is enrolled in the trial, in addition to being a brilliant doctor, is also a very special person.  He shares our hope and our belief that there is a chance, although it may be small, that a cure can be found.  Today when I spoke with him on the phone, he told me that he is a hopeful person, that he has to be in order to do what he does, but that he also realizes that right now the odds are very much stacked up against Phoebe.  Does that mean that we shouldn't try?  Definitely not - he agrees that Phoebe's journey and her fight, is far from being over.   

When Phoebe was initially diagnosed, we were handed a "road map".  This was her protocol and schedule of treatment, and over the course of treatment, everything on these sheets of paper, whether it was anti-nausea drugs, chemotherapy, or scheduled rest, was given.  Today, because Phoebe relapsed so soon after her transplant - we are in somewhat uncharted territory.  There is no road map and no real plan of action. We are hopefully starting this treatment, and this treatment will hopefully lead us to remission.  It is agreed that this clinical trial is not meant to be curative therapy, only therapy that will lead us to a curative therapy.  When I asked our doctor today what the next step is, he said - keep asking me that question and eventually I will give you the answer.  He is looking at other clinical trials, speaking with the transplant physicians and I am imagining a wonderful plan beginning to take shape. 

Tonight in our house, it was non-stop action.  At 7 o'clock our doctor from Sick Kids phoned to tell me about some "twists" that had developed in Phoebe's case.  He explained that Sick Kids wasn't able to accommodate Phoebe for a bone marrow test, something that is necessary for eligibility, until Tuesday - pushing her start date to Wednesday and perhaps later.  Because Phoebe's white blood cell count has been climbing and was 26 yesterday, we both agreed that waiting that long was not really an option if it could be avoided.  Thankfully he had an interesting plan of action to help to give Phoebe the best chance at getting this spot in the trial.  He explained that Phoebe's blood and bone marrow can be taken at CHEO ... good, but then he explained that the "box" containing all of the vials that her blood must be put in to before it is sent off to Maryland and the National Cancer Institute (by 3 o'clock tomorrow afternoon), is at Sick Kids.  This, we decided, is a bit of a problem.  To make a long story short ... tonight, at 11 o'clock, plans have been made and Jon is booked on an early morning flight to Toronto (this thanks in part to our concerned oncologist at CHEO, who worried about his safety after hearing warnings of a very large and impending storm and convinced him not to drive).  His mission is to pick up the "box", head back to the airport, board another flight and return to CHEO - all in time for Phoebe's precious blood to be taken, the vials to be filled and the blood and box to finally be couriered to Maryland to guarantee Phoebe the spot in the trial. 

We are hoping that all of this hard work will pay off and that Phoebe's bone marrow and blood tests will allow her to start this treatment on Monday.  We are happy to do our part to help to make this clinical trial a reality for Phoebe, and we are anxious to get onto a path that will hopefully lead us to remission. 

No comments:

Post a Comment