Day eight

Today is day eight.

This morning, Phoebe was once again sedated and once again, the team of doctors and nurses in radiation oncology proved to be simply wonderful. We have met a lot of anesthesiologists in our time, and to be completely honest, they have never been our favorite doctors. The doctor we have been lucky to have for all but one of these past eight days of sedation at St.Jude is amazing. They all are, but he especially has gotten to know Phoebe. He greets her with a warm and beautiful welcome. Takes time to play with her. He holds her hand as she goes to sleep. He tells her that she is loved and that she is special. And although his job is to put Phoebe to sleep and help her to wake up safely, he relishes the time that he sees her awake.

Pure and simple, these people care for her with so much kindness and she loves them.

This morning, Phoebe put her little head down on the "pillow" that is used for sedation. A round donut type of foam that she also calls a hat and puts on her baby's head. Without being prompted, she asked to lay down and hugged her baby doll tight as the medicine was given. I felt like the odd person out in the room full of nurses and doctors and even more so as Phoebe reached out to hold this anesthesiologist's hand, before she drifted off to sleep. "She always squeezes my hand so tight. She is special", he said with so much warmth and love in his voice. Then I left the room to the sounds of all of these people loving and caring for my child. They have made these soon to be ten days of radiation and sedation bearable. More than bearable, they have created memories for us and for Phoebe.

As I write this, I am sitting in the waiting room, waiting for Phoebe to wake up. I am surrounded by parents and their children, all of whom are waiting to receive radiation in one form or another. Beside me is a beautiful little boy who has an inoperable brain tumor. DIPG. A form of childhood cancer for which there is no cure. His mother cradles his head in her lap as we chat about life and fairly typical childhood stuff. I admire her very much.

The ability to courageously and solidly put one foot in front of the other when you are unsure and fearful of what lies ahead is admirable.

Life around here is celebrated as best as it can be.

Something else worthy of celebration are the consistently perfect blood chimerism tests that Phoebe has had since her arrival here at St.Jude. And to add to this, the fact that Friday will be our last session of radiation and also our last dose of steroids. We also had our (hopefully) last dose of chemotherapy on Monday.

What happens next will depend on what the results of Phoebe's bone marrow tests show and those tests will happen in a couple of weeks.

In the meantime ...

go Phoebe go ...

It's time for mile-raising! Help us reach our goal of 75,000 Aeroplan miles for Phoebe Rose Rocks by March 25th.

If you have miles with Air Canada's Aeroplan, you can donate them to Phoebe Rose Rocks at no charge through Aeroplan's Beyond Miles charitable program. Click on the Donate Aeroplan Miles button in the top right hand corner of the blog or visit http://beyondmiles.aeroplan.com/eng/charity/324.

Aeroplan points will be used by Phoebe’s family for flights, rental cars, groceries and gas. It’s another way to help make ends meet while they are fighting Phoebe’s second relapse of acute lymphoblastic leukemia.

If you have any questions – email us at milesforphoebe@gmail.com. Remember your miles now have an expiry date so donate them before it's too late!

Thank-you for believing in Phoebe Rose ...

Today a wonderful fundraiser was held at the Ottawa Art Gallery in support of Phoebe and our family. I am speechless (which is becoming a common theme these days) and just so thankful for all of the truly incredible and kind people that we have in our lives.

To the organizers, artists, the Ottawa Art Gallery, local businesses, volunteers, and everyone who attended and worked to make this day a success, you have helped in so many ways and I can only scratch the surface of what you all mean to us ...

Thanks to the support we have received, we have been able to travel this road together, to keep our family whole, and to allow Mae and Phoebe to grow up and be sisters. Phoebe has spent most of her life fighting cancer and if we were to have been apart she would not know her sister or have developed such a beautiful bond. Mae has helped Phoebe heal in ways that medicine and doctors cannot and she is arguably the most important member of this team.

When Phoebe was diagnosed in 2010, our world turned upside down. Since then, we have struggled in many ways. We have struggled to survive: to keep things together as a family of four, we have struggled financially having to relocate often for treatment, we have struggled to find treatment that would save Phoebe, we have fought for and searched for options and vowed to never give up on the belief and hope of Phoebe's cure.

This recent relapse hit us hard. It hit our doctors hard. It was devastating and hearing the news that Phoebe's cancer had returned for a second time was by far the worst day of our lives. Worse than the day of diagnosis, worse that the news of the first relapse. It was an unbelievably heartbreaking and devastating day.

Each time this cancer returns it does so in a way that is uncommon and thought to be in curable. That day and in the weeks to come, feeling down and devastated, desperate and depressed, we turned to Phoebe. And she was smiling. And therein lies the key. We follow her lead,which this time has brought us back to Memphis, in the hope that it will lead us back to our life without cancer.

We have seen amazing and miraculous things on this journey. We have witnessed the beautiful spirit of our incredible community, complete with the encouragement and energy of people in junior kindergarten to university and beyond. We have watched Phoebe fight through unimaginable hardships, beat down incredible odds, and survive. Not only survive but thrive. Thrive, dance, sing, play and love life and each day to the fullest. We have watched her sister Mae beautifully make her way in her ever changing reality.

And we have felt a life time of heartache.

We have lost too many friends and have made a promise to share the stories of pediatric cancer to everyone who will listen. To raise awareness, create change, and do what we can to make a difference so that the next child does not have to fight so hard. So that the next parents of a child like Phoebe will not be told that there are no options to cure her.

By being at the fundraiser today, or simply by reading and sharing this story, you are not only helping us, but you are helping all of the children and families affected by pediatric cancer. You have made yourself and others aware and it is through awareness that magic happens.

Phoebe is here today and progress is made because of hard working and determined doctors and scientists. Because of a few doctors who agreed to try one more time to save her. Our doctors in Toronto and Ottawa who work hard to improve treatment options for Canadian children so that they too don't have to travel so far from home. The wonderful doctors at St.Jude who just don't give up. Progress is being made because of children like Phoebe and their parents who without any other options, enroll in clinical trials, with the hope of a cure. Together these parents and these children are advancing a cure. But often at a great cost.

What was done for us today is truly amazing. The wonderful organizers: our friends, together with the community, family, teachers, artists, local businesses, children, and media created a tidal wave of positivity and love. We feel the love here in Memphis and we are comforted by the fact that we know that Phoebe can sense all of your arms wrapped collectively around her, your love and positive energy being sent to her,and your prayers for healing.

Today in the Ottawa Art Gallery, Phoebe's own work of art, one of many paintings she created while in patient at CHEO, hung framed among the works of very fine artists. To see it there in a photograph filled me with pride. Pride for Phoebe, and pride for her family and friends, both new and old (and some we still have to meet) who thought to include her artwork in this special day.

Tomorrow we begin round six of radiation. We had a wonderful weekend away from hospital life, complete with fresh air, time at the park, shouts of laughter and joy (and some not so much due to our toddler on steroids), but we enjoyed life. And we are almost there. Almost home.

Half of this battle is believing in the possibility of a cure and we believe. Thank-you all for believing with us.

Day four Complete!!

Day four complete. Six days to go.

All is going very well and so far, Phoebe appears to have no side effects. Her doctors mentioned that she may lose her appetite and have nausea but so far all is good. Probably thanks in part to the steroids that she is still taking, she is eating up a storm.

She was seen by the eye doctor today as she has had problems in the past with papilledema, which is swelling of the optic nerves, and I am happy to report that that problem appears to be fixed right now. Good news.

And so, for now we continue to forge ahead. Everything is going as planned and we are happy that the treatment is going well and that Phoebe is doing well. She is bossing her big sister around daily and is quick to tell us what she likes and wants. Feisty Phoebe is a force to be reckoned with.

We are once again feeling very thankful for all of the support being sent to us from home.

Tomorrow night at Kalyana Yoga Studio in Ottawa, a very special Karma Yoga class is being held in support of Phoebe. For more information, please visit http://www.kalyanayoga.ca/news-and-events. Thank-you to Pauline and instructor Anne Domitrovits for working to put this together.

On March 9th at the wonderful Thyme and Again Catering in Wellington Village in Ottawa, the amazing and very talented Anne-Marie Bouchard of AMBPhoto is holding a children's portrait fundraiser in support of Phoebe. Thank-you Anne, folks at Thyme and Again and Amy and Jen: Decor for holding this wonderful event. For more information, you can visit Anne's website and blog at http://ambphoto.com/blog/2013/02/21/photos-for-phoebe-a-fundraiser/

And this Sunday, the incredible silent art auction is being held at the Art Gallery Rental and Sales, 2 Daly Ave from 1-4. If you are a lover of art it is not to be missed. I have heard there are many other great items up for grabs as well, and delicious food to be sampled.

We are surrounded by kindness and are so grateful for this support. Thank-you all for continuing to follow Phoebe's journey. When I started writing in this blog I never imagined that two and a half years later I would still be writing and we would still be fighting. I have now written over 294 posts. A novel. One day when my girls are all grown up, I hope to give them this story to read. Perhaps when they are rebellious teenagers.

Here is to those rebellious years. In many ways I can't wait.

Written by my amazing friend Heather about Miss Phoebe and her journey. I wanted to share it with all of you.

Thank-you Heather for writing this.

"Phoebe Changed the World"

Phoebe Rose Doull-Hoffman: innovator, pioneer, and inspiration to thousands of people worldwide, is all of two years old. She is a chubby-cheeked toddler who wakes up each day laughing. It was not so long ago her beautiful face was topped with a smooth, bald head. In October 2010, Phoebe was diagnosed with Infant Acute Lymphoblastic Leukemia. Acute Lymphoblastic Leukemia (ALL) accounts for slightly over 30% of all of Canada’s 900 children diagnosed with cancer each year. Four percent of those cases occur in infants under twelve months of age. The disease complicates in younger children, reducing statistical prognosis percentages from the high 80s to the mid-50s. There are rarer complications involving mutations. At nine weeks old, Phoebe had Infant ALL and its mutations. Her prognosis was expressed as a single digit. In exchange for an unknown chance to live, Phoebe has changed the world by giving her body to science, allowing the children who will come after her to benefit from more advanced therapies, and inspiring thousands of people across the world.

It had been nine years since the hospital where Phoebe was diagnosed had seen a case of Infant ALL. A rare, and therefore less studied, disease means options are limited. The initial part of Phoebe’s treatment involved a chemotherapy regimen followed by a bone marrow transplant. A harrowing experience that had Phoebe fighting every day, she relapsed within three months. Her parents were told to bring her home and enjoy her last days. Instead, they looked everywhere, and fought to find medicine to treat her and move her towards a cure. In another city, Phoebe was accepted as a guinea pig for a new drug. At that time, no new pediatric cancer drugs had been approved in 20 years. It was not this drug that would gain approval. The trial failed, and once again Phoebe was left without treatment options.

Time is the enemy in battle against aggressive cells; calls were made all over the world searching for treatment. In what seemed like divine intervention, an innovative and promising protocol was being used at St. Jude’s Hospital and Phoebe fit the tight set of criteria needed to qualify. Phoebe spent nine months in treatment, thrived, and remained cancer free for many more joy filled months. Her treatment in Tennessee was ground-breaking; physicians from Canada flew to St. Jude to study and bring it home with them.

Phoebe’s story, shared in moving eloquence by her mother at http://phoeberoserocks.blogspot.ca, reaches people all over the world. In Spain, a video with “ÁNIMO FIBI!" (Go Phoebe!) was made to raise funds and awareness. Wayne Gretzky autographed memorabilia to be auctioned. Closer to home is Mae, Phoebe’s sister, who attends Kindergarten. Mae’s entire school, staff and students alike, have become invested in helping Phoebe reach her potential. Taped on a huge wall dedicated to her journey are paper stars with simple wishes of health and happiness for Phoebe, written in childish hand and smooth cursive alike.

Phoebe journeys again for new treatments and trials and new hopes for cure. She arrived in Memphis recently, her cancer returned, once again headed into the unknown to be the living pioneer for advancements in medical science, a shining cherub of hope for thousands. In twenty years, Phoebe’s contributions to science and medicine will be mentioned in medical journals, discussed as a ‘case’ and used to educate. Her name will not be mentioned, of course. By then, her body being used to test new treatments will be a statistic, used for tallying how protocols need to change and improve for the children who will be diagnosed after her. Cancer will be a distant memory as she lives her life happy and healthy. However Phoebe chooses to live it, her life will have changed the world for generations to come.

Day 1 complete ...

Sitting here waiting for Phoebe to finish with her radiation. This afternoon she went from happily playing with Mr.Potato Head to fast asleep with sedation. I wonder often, especially now that she is older, just what she is thinking when this happens and when she wakes up. I have been sedated only once in my life and I remember waking up so confused and disoriented. I wonder if Phoebe wonders what happened, where she went, what they did. And then I think about the total number of hours that Phoebe has been sedated for all of her many tests and surgeries. It is measured in days. Despite these facts, that we have lost days to drug induced sleep, I still get to hold Phoebe when this is all done and I will count my blessings and hold her tightly for as long as she will let me.

I will, however, never get used to watching my baby fall into a drug induced sleep and I often leave the room quickly so that the nurses and doctors don't see the tears. It is something that, even with everything we have seen and the tough skin we have acquired, that I will never get used to.

But, day one of radiation is under our belts. All went smoothly and despite being unable to eat for most of the day, Phoebe was a beautiful trooper. It wasn't until she woke up, had her dinner/lunch/breakfast, and then was told that she still needed to go to the medicine room to receive her weekly dose of vincristine, that she lost it. And I mean lost it. Her little self thrown on the ground, tight fists, screams of "I don't want to!". A complete melt down and she did not recover until we were well outside of the hospital and on our way "home".

In addition to the busyness of today, we heard more good news. The chimerism of Phoebe's bone marrow came back with 100% donor cells. The last chimerism that was done, when we discovered the relapse in December, was a devastating 91% donor cells. This is good news, but knowing that Phoebe does have a low level of disease in her bone marrow, I wonder if we will ever rest easy. When I told Phoebe's doctor about my worries and skepticism of these results, he said that part of transplant is ensuring that all of the leukemia cells are wiped out, but also that Phoebe is given an immune system that will carry her, leukemia free, for life. News of 100% chimerism is an assurance that Phoebe's immune system is working as hard as it can to make this right for her.

A strong and well functioning immune system is something that should never be taken for granted. It is a beautiful thing.

In other news, Jon donated his third double unit of platelets (of this trip) today. Filling the need here at St.Jude and hopeful that he will meet his goal to donate another gallon while we are here.

If you would like to fill the need in your community, please visit a local blood donor clinic. For those of you in Canada, you can call 1-888-2-donate to make an appointment to give. It truly is a life saving gift.

The night before radiation ...

Tomorrow Phoebe begins radiation. It will be day one of ten days of radiation, all of which requires sedation. Ten days of sedation and radiation with a toddler on steroids. We are anticipating an action packed and fun-filled two weeks.

Tomorrow's sedation and subsequent radiation will start at 12:45pm ... this means that the meal and snacks that Phoebe had tonight before she went to bed, will be her last until after she wakes up from sedation. Did I mention the steroids and insatiable hunger? Tomorrow may be a very long day.

The radiation will target Phoebe's pelvis and belly only, as this is the area where she relapsed. The hope is that this will be all she needs to ensure that these bad cells, that once hid there, will never return.

Once we are finished with radiation, Phoebe's bone marrow will be rechecked and from there and depending on the results, her doctors will put together a plan. We know that right now she has a very low level of disease in her bone marrow, but that even a fraction of a leukemia cell can cause trouble and so we will need to make sure that it is zero. Right now and since this relapse, the main problem and concern is the leukemia that appeared in Phoebe's belly, and so once we do what we can to treat that, we will move on to worrying about the bone marrow.

One day at a time.

We did have a good weekend and managed to stay away from the hospital for its duration. Phoebe is a bit more irritable than usual and she can scream like no other (I am pretty sure that everyone living at the Ronald McDonald House knows who she is), but once she is fed she is usually her happy self. The steroids seem to affect her in a different way each time and right now they cause her to scream at the top of her lungs when she is hungry. The only break from these screams comes when Jon or I asks "do you want to go to the kitchen to get some snacks?". Then, sweet relief comes in the form of goldfish crackers or pretzels or some other salty goodness. Yesterday, Phoebe ate a giant chunk of red onion. Picked it up, bit down while I watched horrified expecting her to scream that it was "too spicy!!", and then said "mmmmm, yum, this is good", and continued to reach for another. To look on the bright side, steroids are also allowing us to explore new vegetables that are often not well enjoyed by toddlers.

When not eating, Phoebe and Mae cheered on their TKE-Saw friends in the final hours of the amazing see-saw 100 hour marathon, explored the playrooms at the Ronald McDonald House and even took to the park where Phoebe took a turn on the "big girl swing" for the very first time. Our little girl is growing up and if you ask her she will tell you, very assertively that she is a "big girl".

Go Phoebe go.