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.

Friday, February 21, 2014

A new vision ...

I am feeling especially thankful today.  Thankful for Phoebe's team of doctors and nurses, both near and far - together, they have done amazing things.

I have been filling out Kindergarten registration forms for Phoebe. A task that should only take minutes, is taking me days. It is proving to be emotional, and combined with Phoebe's upcoming end of treatment, I have honestly been a bit of a mess. 

There have been too many days when we worried and feared that Phoebe wouldn't see another birthday, let alone start kindergarten. At the beginning of all of this, when Phoebe was just a baby, my dad would almost always stop me before I started to share details about Phoebe's intense treatment. He would stop me and say, "wait ... let me get my vision". And then, "okay, there she is - running for the school bus". 

That day, the day that Phoebe will run for the school bus, is so close. It is amazing actually, that we have come this far. We are registering for school and about to complete this year of maintenance treatment. We are about to embark on a new journey without chemo and without the strange security that it brings. 

March 21st will be Phoebe's "last chemo". Our end of treatment. We will add a third end of treatment gold bead to Phoebe's now over 50 foot necklace of courage beads to mark this special occasion and we will hope and pray that this is it. 

Today, we had a visit to CHEO for blood work and chemo and I prepared myself for a difficult day. I had heard that Phoebe would be switching clinics and doctors once she completes treatment, and the thought of this honestly had me close to tears and losing sleep. Considering that no one really knows what will happen when we stop chemo, and that the risk of relapse is high, to make changes at this fragile point seemed crazy. It might not seem like a big deal, but there is so much history and heart ache tied in to our experience at CHEO and this particular proposed change to the post bone marrow transplant clinic, at a time filled with so much uncertainty, brought me right back to July of 2011 and Phoebe's first relapse. I have come to realize that there are many things about this particular time that I have not dealt with. At all. And anytime I am faced with CHEO related stress, I return to those days. Probably not healthy at all, but it is what it is.

The memory of being sent home from CHEO with a baby who was thought to have a terminal cancer, sent home without any support or guidance, the incredible stress and heartache we felt, the feelings of complete helplessness, and the pure desperation, all of this came rushing back and with it came anger and resentment. It shouldn't have happened as it did, we should have met social work and palliative care, we should have been given a plan for pain management, we shouldn't have been left to handle it alone, even for a day, and we shouldn't have been judged for decisions to pursue further treatment. We should have been encouraged to seek a second opinion as soon as possible. Although this experience is in the past and thankfully Phoebe is here and healthy, a proposed return to the doctor we saw back then and a change in the schedule that we have become accustomed to, combined with the worry that fills our everyday, brought me back. Because of the history that we have with CHEO, the stress that at one time seemed to completely take over our days, the struggles and fights we once had, I went to the hospital today expecting to have to plead my case to stay with the physican that we have come to know and trust, expecting to have to argue the benefits of continuity of care. Instead, I was met with understanding and agreement. With kindness and caring. With a solution that is in Phoebe's best interest and thankfully, also good for my tired and weary soul. Considering the uncertainty that lies ahead and that no one knows what will happen next, for now, things will stay as is. No more changes. 

After all, Phoebe is more than the pages that make up her chart and the numbers and values on her blood work results and I am thankful that she was seen as a person, rather than just a patient. She is a very opinionated and feisty little person, who has come to love and trust her doctor, and the more normalcy and routine that we can keep in her life right now, the better. 

It is the little things. 

So, we are taking it one day at a time. Following the last date of chemo, we will "graduate" to monthly visits to CHEO and continue to go to St.Jude every three months for MRI and bone marrow tests. The treatment for Phoebe's liver iron overload will coincide with the monthly visits. We are trying to find a way to harvest Phoebe's tcells and store them, just in case she might need to use them in the future. There is a very promising new treatment using modified tcells that is showing great success in patients with relapsed Leukemia, and it remains one of the only things we haven't tried. It is also, hopefully, going to be offered at SickKids later this year. We hope and believe we won't need it, but it is always good to have a just in case plan in place. 

We are excited to finish this chapter and we long for normal. We are trying to put some pieces of our lives back together, and imagining Miss Phoebe running for that school bus. 

It seems though, that it is time for a new vision. 

Close your eyes ... can you see her? 

There she is ... marching to the beat of her own drummer ... running with friends in the school yard ... riding bikes with Mae ... blowing out candles on her birthday cake ... playing outside until the sunsets ... going on her first date ... throwing her graduation cap in the air ... learning to drive ... falling in love ... chasing her own babies on the beach ... climbing mountains ... running marathons ... swimming laps ... growing old ... every day ... doing every little thing she wants to do. 

Anything is possible. 

There she is. I can see her.

“Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be.” 

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