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.

Tuesday, December 11, 2012

We Love Phoebe Rose

Once upon a time, an ultrasound meant a beautiful, hopeful, and mesmerizing few moments. The images of my babies dancing around in my belly, the sound of their heart beating. Beautiful. Yesterday, Phoebe had an ultrasound of her very own. It was not her first, she has actually had too many to count, but this one, second to the one that started us on this path, it is the most memorable. And the most heartbreaking.

Two hours, three people, too many tears, and too much confusion. I heard: what is that? Where is her ovary? Is that a vein? Is there blood flow? Is that a clot? What is that? So much confusion and I left feeling defeated and thinking of cancer. Stupid cancer.

I will take you back though because I know this will all seem confusing, considering my last post of celebration. 

I brought Phoebe in to CHEO yesterday morning because her leg is/was swollen. We had an ultrasound, and many hours later, we are now here, admitted. On 4 North, CHEO's oncology ward.

And just like that, our lives have been turned upside down once again.

Her ultrasound showed a "mass", but the images were not the greatest due to the fact that Phoebe was moving around a lot, so we were booked for an MRI. As we were about to leave to go home, to prepare to return the following day for the MRI, we were called back. I heard "you are not going anywhere" and subsequently learned that Phoebe's kidney function blood tests were all elevated. Her kidneys were showing to be in distress and she was admitted for hydration and a medication to bring down the uric acid that was showing up in her blood.

Because of Phoebe's history and the fact that cancer is on everyone's mind, she was also scheduled for a bone marrow aspiration and lumbar puncture.  The MRI results came in first, showing a large mass in the pelvic area.

I can now add a few more words to the list of those that will hunt me down in my dreams, and keep me awake at night. 

The preliminary bone marrow results, however, are clear of Leukemia which is good news. And her spinal fluid is also clear. We know now though, after having been through this many times, that we need to wait to see what the MRD (minimal residual disease) and chimerism show. And so we will wait. But we will take this tiny piece of good news, and run with it.

Phoebe is scheduled for a biopsy tomorrow.  After which they will also place stents/shunts? in her ureter to help her to pass urine and to assist her kidneys which are currently struggling due to the pressure being placed on them by the mass. Her kidneys, among other things, are our primary concern.

After the biopsy we will learn what this is. If it is cancerous. What the treatment course and options are. Right now we know very little.

We know that there is a large mass, and just writing that down is very difficult.

We know that Phoebe once again has to fight and struggle and work to overcome, just one more thing. Whatever this thing may be.

We know that so far, her bone marrow and spinal fluid look good. 

We know that many hard working, caring, and very smart minds are coming together to help our Phoebe. Our doctor at St.Jude is in touch with the doctors here and they are expecting an overnight delivery of Phoebe's bone marrow, to be tested for mrd and chimerism, the results of which we hope to know soon.

We are taking things one day at a time, although at times over the past two days it has been very hard. We are scared and overwhelmed. Phoebe is older and wiser now. She has asked to go home, she has asked for Mae, and she has cried out for the nurses to stop. Telling them, no and that she is finished. Mae has also cried for her sister, and has asked to see her. She kisses her head and hugs her close, and she is all too aware of the reality of this life. 

However, if you ask Phoebe how she is doing, she will tell you very definitively that she is "fine". She has started to take her beloved bear's blood pressure and temperature while the nurse takes hers. She is coping, and if she says she is fine, we will follow her very strong lead, as we always have. 

We will hold on tightly to hope and pray that as more results come in, our path becomes clearer and our sweet Phoebe gets better.

1 comment:

  1. Oh Jenny.

    To say I am sending you love and support through the ether is an understatement. I am praying praying praying! Go Phoebe go!

    -Love Bronwyn