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.

Kindness Abounds

We are surrounded by kindness and love and I thought what better day to write about this than Valentine's Day.

The TKESaw is in its final stretch. Just under 20 hours of see-sawing fun left and the energy and spirit of this event has stretched all the way to Memphis. Phoebe herself has taken in the fun and stood mesmerized by live feed of the see-saw for quite some time yesterday. I can only scratch the surface of what this means to us and how it feels to know that so many people are behind us and Phoebe in this fight. I have always felt, even when Phoebe was very small, that this love and support helped her to get up every day and face whatever that day had in store. I know that it greatly helped me. I still believe this to be true and think that there is much power in positive energy.

Thank-you to our new TKE friends for all that you have done. You have raised awareness, raised funds, brightened our days and lifted our spirits. You have given much needed attention to pediatric cancer and opened eyes and hearts to the children of St.Jude. You gave us a lesson in twitter to which we are very grateful (although Jon is much better at it than I am). Your energy is contagious and inspiring. You are good people.

Today we moved to the Ronald McDonald House. It is kind of incredible that we have been on this path for so long and have not yet stayed at a RMH. We were greeted with kindness, welcomed with open arms and hearts and served a warm and delicious meal. Mae and Phoebe enjoyed crafts, exploring the many playrooms, and are now fast asleep in their beds. We have a bit more space now and a place to cook and enjoy meals as a family which will make a world of difference.

Our community both near and far is quite possibly the best there is. The love, support and kindness is felt and so very appreciated. It honestly keeps us going.

We wish we were home sometimes so that we could take part in these wonderful events and thank all of you in person but we know that here is where we need to be.

On the 24th of February at the Art Gallery: Art Rental and Sales Gallery, 2 Daly Avenue in Ottawa, a fantastic silent art auction is being held in support of Phoebe. Twenty-five local artists, including some very good friends, have donated their beautiful work. There is a team of organizers working to make this a special day and their hard work, energy and simply beautiful spirits have left me speechless often over the past many weeks. It is an event not to be missed and I wish I could be there, if only to experience the wonderful energy that will undoubtedly be in the space (while admiring the incredible artwork).

For more information on this event, see the event page on Facebook.

https://www.facebook.com/events/478079968919724/?ref=ts&fref=ts

Kindness abounds. And I have said this before, but if love could cure cancer, we would be all home and safe in our beds.

As for Miss Phoebe now, the good news just keeps coming and we are hopeful that it will continue. The chimerism of Phoebe's blood is 100% donor 2 (my cells). There was a bit of a mix up with the bone marrow chimerism in that it wasn't sent, but now that it has been, we should know those results soon. The survey of Phoebe's t-cells shows them all to be within normal range and in the words of our nurse practicioner and doctor, they are "robust". Robust is certainly good. Phoebe starts her radiation on Monday and although she is currently on another course of steroids, she is doing very well.

Go Phoebe Go ...

Mighty mighty Phoebe

We are in the business of surprising doctors. There are the not so nice surprises that come with unexpected news of relapse, but then there are the surprises that are good. So very good.

Like today.

Today while we were meeting with Phoebe's doctor to discuss the few issues we have been dealing with lately, issues like the enlarged bladder which is now normal, the constipation - also fixed, and the long awaited radiation simulation that finally was completed today after three attempted tries and a total of nine unnecessary hours of sedation last week. After we had discussed all of this, we asked about bone marrow results. Those long awaited and so very important results.

Our nurse practitioner went to see if the results were in and came back in the room to give them to Phoebe's doctor. He was obviously impressed and happy and as I always say - happy doctors are a very good thing. He was expecting Phoebe to have 1-2% leukemia in her bone marrow, but these results are much better.

Phoebe's bone marrow, while not clear of leukemia is showing a very low level of disease. Her minimal residual disease is 0.01%.There was joy in that small room when these results were read. Pure joy and hope.

These beautiful results are thought to be the product of chemo together with a very determined and strong immune system. Never underestimate the power of Phoebe Rose, together with her Mama's angry cells. Taking back what's ours.

Our doctor explained that right now 1 in 10,000 cells are leukemia and to qualify for the NK trial, Phoebe would need 1 in 20. We are hoping this tiny amount will continue to go down, not up, and so the trial is not being considered as an option right now. But as he said today we have other options to ensure that this number becomes zero. And having options is good.

We still have only pieces of a plan but we are moving forward and realize that the plan will depend on Phoebe and what happens after this round of chemo and radiation. Perhaps the plan will simply be to return home after this next round of radiation and chemo. To return home to enjoy life. That is to life, without cancer.

We can always hope.

Go, Phoebe go!

TKE-Saw

I would like to share something with all of you. Below is a note from the President of the Ottawa Chapter of the Tau Kappa Epsilon Fraternity at Carleton University. Jon and I are just so overwhelmed with and grateful for the kindness that our community has shown us, and today by the enthusiasm, spirit, and generosity of the TKE fraternity. We are committed to paying all of these acts of kindness forward and to working to improve the lives of children affected by cancer. Right now, that is by telling our story to anyone that will listen and by doing so, hopefully spreading awareness of the need for more research funding and attention.

"I am the president of the Ottawa chapter of Tau Kappa Epsilon Fraternity at Carleton University, and sit on the board of directors for our international fraternity in the US. TKE was founded 114 years ago on the principles of love, charity, and esteem with a goal to assist in the academic, social, and moral development of its members to create "better men for a better world."
Danny Thomas, the founder of St Jude Hospital was a lifelong member of Tau Kappa Epsilon. TKE chapters across North America continue raising funds and awareness to support the dream of Danny that "no child should die in the dawn of life," with a renewed pledge to the hospital in 2010 to raise one million dollars for St Jude.

When I learned of Phoebe Rose through last weekend's CTV news coverage, I was touched by her story. What a remarkable child she is!The story reminded me how important it is for TKE to continue to propagate awareness for the hope St. Jude brings to the lives of children like Phoebe, and to continue our commitment to financial support of St. Jude. But what the story really showed me is that the families of children like Phoebe often face devastating disruption to their lives and real financial hardship in order that treatment at St. Jude can be an option to them without support from their communities.

The young men of Tau Kappa Epsilon in Ottawa want to raise awareness among supporters of St Jude that there are children and families in our own communities who benefit from what we do to support the hospital, but that we should be supporting those children and families as well. To that end, we will be running a campaign, beginning on the this morning, February 11th, and continuing through the week until Feb 15th, to attract donations and to spread the word about what a beautiful, lively, resilient child and her loving family can accomplish with the help of a strong community and the brilliant work of St Jude Hospital.

In the Atrium at Carleton University, we will be doing what most take for granted as a simple take-it-or-leave it pleasure of childhood, but that young children struggling for their lives might only get to dream about doing: being in a playground bouncing up and down on a see-saw. We will keep that see-saw going for 100 hours non-stop while using the attention we can attract to reach out to people to support Phoebe Rose and her family.

We want no one to take playing for granted.

Details about our campaign (including live video feed of the 100 hour see-saw) can be found on the event page on facebook at: https://www.facebook.com/events/344470799004931/."



Thank-you Tau Kappa Epsilon. I also believe no one should take the joys of play for granted and think this is a beautiful way to honour sweet Phoebe Rose. She can't wait to see the live video of the see-saw in action.

Sister cuddles and more chemo

All things are well here. Or as well as can be expected when you are in a new city and battling cancer. We had a meeting with Phoebe's transplant doctor today, the main purpose being to sign consent forms for the next part of treatment. More chemo.

We were originally apprehensive about Phoebe having more chemo as we were hopeful that she would qualify for the NK trial, or that her own immune system would be considered strong enough to keep the disease at bay while we wait. Our doctor, however, is worried that while we wait for radiation to start and finish, and because it has been some time since Phoebe has had any treatment, and because her bone marrow is most likely not in complete remission (we have yet to hear chimerism and MRD results), we need to give something to make sure that we remain in control of the disease in her bone marrow while we hopefully eliminate the disease in the pelvis. The chemo is much of the same that Phoebe has received since this relapse and has done wonders already by shrinking the mass completely and we are hopeful that this will continue. It is also, as far as chemo goes, relatively well tolerated by Phoebe and it is a short cycle, meant only to take her through to the end of the radiation treatment, at which point, her doctors will reassess.

We do have the weekend off from hospital life once again and we will be breaking free from the hotel room in which we are all staying and getting some much needed fresh air. I think the week ahead will be a busy one for Phoebe and so we will take our free time and cherish it while it lasts.

We are feeling hopeful but overwhelmed. Hopeful because we have a wonderful team of doctors and nurses dedicated to Phoebe's care and to doing all that they can to get her well, but overwhelmed because we are very much in uncharted territory and despite how intelligent and amazing the doctors we have met are, there is not one who can tell us what the right thing to do is and right now we have already tried many treatments unsuccessfully. I have to believe that the path we are on will lead us to a cure because frankly, if I let the other much darker thoughts in, I will risk losing this faith in our doctors and the decisions they are making and my faith in our ability to get through this.

I have always believed that regardless of the hurdles that Phoebe may have to face to get her well, these hurdles that have and continue to prove to be immense, well she will be. I will not give up on that now. I need to believe because without this and without hope, what else do we have?

And when I look at Phoebe who appears right now to be a picture of health, my belief in her cure and in her ability to get well, just becomes stronger. Together, we will do this.

This morning Phoebe and Mae woke up cuddling. Literally, cuddling. Their little arms wrapped around one another in a beautiful embrace.

Phoebe has to get well.

Good news day

Another beautiful day in Memphis and we have good news to share.

The bone marrow results are in and morphologically, they are negative. The cytogenetics testing that looks at the make up of the cells, is normal. We are still waiting for chimerism and other MRD (minimal residual disease) results, but this is good.

When I heard this news, I wasn't sure if it was good however, because It does mean that right now, Phoebe does not qualify for the trial, but it also means that she has a very low level of disease. We haven't spoken with Phoebe's transplant physician yet, but the plan right now seems to be to recheck the bone marrow in a few weeks in consideration for the trial.

Our plan right now also includes radiation. Ten days of radiation to Phoebe's pelvis. For these ten days and to ensure that Phoebe remains still so that the treatment is effective, she will be sedated. The hope is that this can be done with relatively minor side effects, other than the major side effect of infertility. The meeting with the radiation oncologist was difficult. It is hard to imagine and come to terms with radiation; that after all of the treatment that Phoebe has received, all of this innovative therapy, that we are now resorting to radiation. It seems sometimes like we are taking steps backwards but radiation has shown to be an effective, although extreme form of treatment. And it will hopefully effectively target cells in the pelvis that the other treatment has missed. It is fitting, I guess, considering that we are dealing with a monster.

For now, we will take things as they come. We don't really have a plan, but that is okay. We have pieces of a plan and we are where we need to be to get Phoebe better. We are celebrating this news because it is worthy of celebration, but are also aware of just how evil this disease is, and the need for further treatment to ensure that we do kick it to the curb, for the very last time.

Go Phoebe go ...

Today was a good day. Phoebe had her bone marrow aspirate and MRI and we heard not too long after that the radiologist was "unable to definitively identify any residual focal mass in the pelvis". To the naked eye, the mass is gone. It is no longer the size of a walnut.

Good riddance.

The bone marrow results should be back in a couple of days and we will know then more about the plan and if Phoebe qualifies for the NK trial, but for now, we will enjoy this piece of good news.

We have another visit to see the radiation oncologist tomorrow. Phoebe will actually have a radiation simulation, to prepare her if she needs radiation, which it is looking like she will. The simulation is a CT scan, again under sedation, and it will help the doctors to customize a plan for Phoebe. We are anxious to talk to the radiation oncologist about Phoebe's MRI and this plan. We are aware that this treatment may come with significant long term side effects, the details of which we are not sure of, and the decision to use radiation is one that is not taken lightly by anyone.

Cancer as I have said again and again, is a monster.

So far this cancer has done all it can to wreak havoc in Phoebe's body and the worry is that if we do nothing to target cells that may be hiding, invisible to the naked eye, in the belly, it will just come back again. And each time it comes back, it will be more difficult to treat and cure. Radiation is a way to target these cells and possibly, hopefully, get rid of them for good.

Our wonderful doctor in Toronto told me once, when discussing radiation when Phoebe was so very young and everyone was hesitant, he said, "Jenny, you need to have a surviving child to experience long term side effects". I will never forget those words and today they carry a whole new meaning. Perhaps radiation is what Phoebe needs to cure her once and for all, and when I have a surviving child I will be so grateful and thankful that we did what we could. That we did all that we could to save Phoebe. I would love to be able to have the opportunity to fight with a teenage Phoebe about why she will not be able to naturally have children. To explain to her why we made the decisions we did. I want desperately to watch her grow up. What I will not be okay with, probably ever, is the length at which these children need to go to be cured.

There needs to be an easier way.

Today is world cancer day. Please remember that children get cancer too. That childhood cancer is not rare, but rather the number one disease killer of our children in Canada and the United States. That worldwide, every three seconds, a set of parents will hear those life changing and devastating words. Your child has cancer. Awareness is the first step towards a cure.

Go Mighty Phoebe go ...






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Sunshine and happiness

It was a beautiful day here in Memphis today. The sun was shining, the air was warm (by this Canadian's standards) and our time was spent outside.

It was a good day.

Phoebe is doing well, but on our first few days here, she was a bit down. She was not eating. She would cry as soon as we entered the clinic or any small hospital room. I think she understands a lot more than we give her two year old self credit for. Today, however, thanks to a weekend away from hospital life, time spent outside in the fresh air, and her big sister; she is joyful. Mae can work wonders that doctors and medicine cannot. She brings the joy and the normalcy that is so desperately needed.

We are getting ready for another big day tomorrow. Phoebe had her blood work done tonight to prepare for her early morning MRI and bone marrow aspirate. Her blood work looks "normal", everything appears to be where it should be which is nice to see but a bit nerve wracking considering that she will need evidence of disease to qualify for this trial. More than 5% to be precise. Cancer and clinical trials leave me wishing for strange things; wishing for my baby to get sicker so she can get well again.

Our day begins at 7am with a visit to the clinic and a check up before Phoebe goes in for her tests. Jon will be starting his weekly platelet donation regimen once again and is due in the donor room at 8am. I hope we all get some good rest tonight.

In the meantime, we are just so relieved to be here. Each day that passes brings us one step closer to bringing Phoebe home, healthy and free from this cancer that is so not welcome where we live.

And about where we live ... thank-you Manor Park, friends, family, and the wonderful community we miss so much. The garage sale on Saturday looked to be a wonderful event, and even made it on to the news. If you didn't catch it on the weekend, here it is: http://ottawa.ctvnews.ca/community-rallies-around-toddler-battling-rare-cancer-1.1140706.

The money raised from these events is helping us to make ends meet while we are here in Memphis, and allowing us all to be here to support Phoebe. I really can't put into words what it means to us to be able to keep our family together throughout all of this. Thank-you.

Welcome back Phoebe

We made it to Memphis. Yesterday was a busy day, filled with appointments for Phoebe and I. Phoebe saw the radiation oncologist, her transplant doctor, nurses, child life, she had her blood taken, a check up done, and we did a lot of talking and listening to her wonderful doctors.

The day started at 8:30 in the morning, and ended at 5:30 with a talk with Phoebe's transplant doctor. A doctor who we are so thankful to have on our team as he has done wonders already in the treatment of Phoebe's disease.

We are happy to be here. We wish we were home, healthy and tucking our kids into their own beds each night, but if we have to fight cancer, this is where we need to be.

We saw many familiar faces yesterday, families that we met when first here who are back for a check up, or back to fighting cancer again like us. Nurses, doctors, child life specialists, staff in the cafeteria and coffee shop, all who we came to know. All greeted our news with a similar answer - I am so sorry that you are faced with this, but happy you are here to face it.

The radiation oncologist has been brought into the picture because our transplant doctor is concerned that without something to target Phoebe's belly, where the relapse occurred, a relapse would just happen again. We are in uncharted territory, however, and we heard often yesterday that Phoebe is unique. As rare as the infant Leukemia that Phoebe has is, it is even more uncommon to relapse in this way. What makes things difficult and complicated is that chemotherapy and cellular therapy will not effectively penetrate nasty cells that may be hiding in the belly as it needs to, hence the reason to consult with radiation oncology and also some insight into why Phoebe relapsed here when the transplant appeared to be so successful.

The trial that Phoebe is here for is one that will use my natural killer cells (my appointments are to make sure that I am able to be her donor again). This trial is different from the first one she received in that these cells will be expanded and modified, making them more plentiful and targeted to kill her leukemia cells. It is a new trial so there are many unknowns but Phoebe may have an advantage in that she is getting cells from her original donor, and my immune system has already proven effective against this Leukemia. It gave us one year without cancer.

Phoebe has an MRI and bone marrow aspiration scheduled for Monday and these tests will help to determine our path. She needs more than 5% disease in her bone marrow to qualify and the results of the MRI will help all of the doctors decide if radiation is necessary.

For now, we are all settling in, soaking up the sun and the hope that Memphis and St.Jude are providing and anxious to really begin to treat and with hope, cure, this cancer for good.