Courage Beads

I have been making a necklace for Phoebe.  It is made up of "courage beads" and many of the children here have similar ones.  Each tiny glass bead represents a step taken towards recovery.  The red beads represent all of the pokes and intravenous lines that Phoebe has been given, she has over 200 red beads on her necklace.  Each white bead symbolizes a treatment of chemotherapy, the black are for antibiotics, blue are for days spent in the hospital, there is a bead for the ICU, and one for bone marrow aspirations and lumbar punctures.  Each bead tells a story.
Although Phoebe is too young to understand what the beads mean or even why she is at the hospital, we have decided to make her a necklace because one day in the future we will have to tell her this story. The necklace is a symbol of her strength and courage, and of all that we have gone through as a family.
Today we will add five beads to her necklace: two for her daily injections, one for chemotherapy, one for the catheter that she had inserted to protect her skin from the chemo, and one for being brave because today she will receive her 6th treatment of high dose methotrexate, a chemotherapy that runs through her body over a 24 hour period and causes mouth sores, mucositis, and terrible nausea. 
I look forward to the day when we can sit down with Phoebe and Mae and look at the necklace and tell them the story of Phoebe's journey to recovery.  Perhaps Phoebe will also want to visit the oncology ward to proudly display how her necklace will easily stretch from one end of the long hallway to the other.

Fundraiser Update

Hi all, Just a note to say that children are most welcome to the fundraiser. So we can keep track of numbers please send me a note to let me know if you will be attending & are bringing wee ones, spouses, partners, lovers, friends. Email: mariondoull@hotmail.com. We are being overwhelmed with generous donations for the silent auction so be prepared to be wowed!! Feel like a night or two at the Westin in Whistler, Toronto or Montreal? A makeover? Great seats to cheer on the Sens? Make sure to bring your bidding spirit!! Thanks, thanks, thanks. xox Marion - Auntie Mamoo to Miss. Phoebe Rose

Goodness

On Wednesday afternoons in the oncology ward at CHEO an unfortunate group of people convene.  They are different ages and have different backgrounds, some have traveled far distances to be there, they have different likes and dislikes, and they probably would never have had the chance to meet be it not for the one common bond that they share.  They each have a child with cancer.  They sit together for an hour, sometimes more, and they talk about their children and their cancer.  I was fortunate enough to sit with this group of people this week, and although the subject matter was serious - one father was back at CHEO after learning that his daughter had relapsed after a year off treatment, another parent learned that her child would have to have radiation therapy, and another mother discovered that her son's cancer had spread and he would need another 6 rounds of chemotherapy, the mood was unbelievably uplifting and positive.  Each person told their story, and ended it saying ... the good thing is.

So many good things.  I left the meeting feeling fortunate, blessed, and happy.  Happy to be in a place where so many people care so much.  Where our nurses and doctors share in Phoebe's triumphs and cheer her on as she rolls over and sits up by herself for the first time.  Where the same nurses and doctors patiently guide us through the difficult days and listen to our concerns.  Fortunate for the people who work tirelessly behind the scenes to find a cure for cancer, for the short but wonderful breath of winter air that my little family experienced together this week, and for the thousands of people who are ready and waiting to be bone marrow donors.

We learned this week that a few possible donors have been found for Phoebe, and that they are working behind the scenes to choose the closest match.  Soon we will learn the type of donor, be it stem cell, cord blood, or bone marrow and how close the match is.  Once a donor is found, we will sit down with the transplant doctors to hear about the procedure and what to expect.  But for now, we will focus on the task at hand, and that is getting Phoebe safely through this round of chemotherapy.  Her fourth phase of treatment started on Tuesday with a lumbar puncture followed by a 24 hour infusion of high dose chemo.  She has already cleared the high dose chemo, it is crucial that it clear out of her system quickly to avoid any damage to her kidneys, and now we wait to receive the next infusion.  She has some mouth sores, mucositis and nausea as a result of the chemo, but is still smiling and reminding everyone around her just what is important.  Right now that is love, laughter, strength, perseverance and an unwavering belief that everything will be okay. 

Our journey so far ...

Phoebe's journey began on Oct. 21st 2010, when during a routine 2 month check up, our doctor noticed that the lymph nodes in her groin were swollen.  We were sent to CHEO for blood tests and an ultrasound and within minutes of returning home from the tests the phone rang.  Phoebe's blood work showed some irregularities, could we bring her back in for more tests?  We arrived back at CHEO with Phoebe and were ushered in to the emergency room.  We had no idea what to expect and nothing could have prepared us for what we were about to hear.  Phoebe has Leukemia.  The doctor explained that Phoebe's ultrasound showed an enlarged liver and spleen and that her blood tests showed a white blood cell count of 675,000.  An average person has somewhere between 4000 and 15,000 white blood cells. We were shocked, devastated and speechless.  I remember thinking that there must be some mistake and I convinced myself that the doctor was going to come back in and tell us just that.  Unfortunately, that never happened.  

Our lives changed in an instant. 
 
Shortly after hearing the diagnosis, a flurry of activity commenced and the heartache and feelings of extreme helplessness would begin.  I remember a nurse entering the room with what looked like about 20 small plastic tubes. She told us that she needed to take some of Phoebe's blood.  Another nurse came in and asked if she needed help and the first nurse looked relieved.  I would soon understand why.   Phoebe's blood was so distorted that when they tried to fill the vials it clotted instantly.  Instantly.  So there is our tiny Phoebe screaming while nurses desperately try to pull blood from her veins.  I remember the nurse saying over and over "i'm so sorry".
 
We spent most of that night in the emergency area of CHEO, Phoebe underwent countless tests and we were introduced to one of the oncologists on staff.  She told us that there is no known cause for Leukemia, and that infant Leukemia is extremely rare and very aggressive.  Because it is so aggressive it requires equally aggressive treatment - you will be in hospital for a year she said.  A year?  I remember repeating it over and over again throughout the night.  I even asked her if she was sure.  I remember Jon telling her that Phoebe was okay, look at her, he said, she seems perfectly healthy and she is doing everything she is supposed to be doing at this age.  I thought about little Mae at home in her bed.  The sister that she was just starting to accept and love would live apart from her for a year.  Our little family would be split up. 
 
Later that night, exhausted and weary, we were led to the ICU where we would spend the next 6 days.  Phoebe's treatment started almost immediately as it was critical that her white count be brought down to a manageable level.  She was started on a course of steroids, and pumped full of fluid to help flush everything out. The fluid would also help to protect her organs as the leukemia cells were breaking down.  Her weight climbed from 5.7 to 7.4 kilos.  The six days we spent in the ICU were a whirlwind of emotion and activity.  Phoebe's blood was tested every four hours, and we held her hand while IV nurses struggled to put IV lines in her tiny veins, in her hands, feet, and head, often times unsuccessfully.  We soothed her after each poke and prod and quietly told her that it would be okay, that tomorrow was a new day.  We watched as she underwent an exchange transfusion to help her dangerously high white count come down.  Her blood was pumped out and new blood pumped in. We struggled through medical and human error. Questioning if we were in the right place. We saw stress, anxiety, worry and even tears on the faces of doctors and nurses and we listened as they told us the seriousness of Phoebe's situation and her small chances for survival. There were times in the ICU when worry and sadness took over and we sat and prayed for just one more day with Phoebe.  Throughout the difficult days, the days when life seemed impossible, I found myself repeating something that one of our oncologists told us very early on.  She said, we are here to cure her. 
  
After six days in the ICU, Phoebe would prove to be stable enough to move, so onwards and upwards to the 4th floor and the oncology unit we went.  And now, one hundred and ten days later, Phoebe has proven herself to be the bravest, strongest and most courageous person I will probably ever know.  Phoebe has fought her way to complete genetic remission.
 
We still have a very long way to go.  We are about to enter our fourth phase of treatment, after which, if (and when) a perfect donor is found, we will move our little family to Toronto for a bone marrow transplant.  We still have difficult days, but now when something seems impossible I look back and remember how far we have come, what Phoebe has gone through just to be here.  Then I look at Phoebe and she flashes me her fabulously wise grin and the road seems a little less bumpy.