Last minute scrambling ...

We are leaving for Memphis tomorrow and in the short almost two days since our flights were booked, it has been a flurry of activity.

Jon and Mae needed passports, which thanks to good friends, a passport office that opened in the very early morning, and our doctor at CHEO for writing a letter explaining our need for urgent travel, they are ready to be picked up later today - after being applied for this morning. Not without a wee bit of stress. This was no small feat.

Thanks to the wonderful folks in the St.Jude travel office, Jon and Mae have been booked on the same flight as Phoebe and I so we will travel together. Some much needed family time will be had.

Mae visited the world's most kind and generous dentist today, who after learning about Phoebe's story, booked Mae very last minute, not once but twice, for dental work and sent us on our way with only her best wishes for Phoebe's recovery, and no bill. She also showered Mae with compliments, love and attention which she soaked up and needed. The world is filled with many, many wonderful people.

Phoebe is still at CHEO and because it is complicated to send her home for one day as she is on IV antibiotics, she will be discharged tomorrow, just in time to head to airport for her plane ride to Memphis.

Mae visited her class today to say good bye to her friends and wonderful teachers, and temporarily, to the school that has been an incredible source of support.

There are events being planned by this wonderful school and community, together with family and friends, in support of Phoebe's journey. One is a garage sale this Saturday from 9-12 in the Manor Park school gym, which comes complete with delicious baked goods and treasures not to be missed.

And so now that the stress of this day is coming to a end, and loose ends have been tied, we are excited to begin the next part of this journey. We are anxious as we have a full day of appointments for Phoebe on Thursday and we will learn more about where this road will take us. We need to believe that it will take us to Phoebe's much deserved and sought after cure.

This day has brought to light, once again, the love and support that we have felt at each step of this journey - the wonderful friends and family that we have in our lives, the nurses and staff at CHEO that have become like family, our new friends and staff at Manor Park that I will miss seeing each day, and the community that has surrounded us with love and lifted us up on even the darkest days.

Thank-you. Each of you who has read and shared Phoebe's story, who has kept her in your thoughts and prayers - your support, kind words, and love means so much. I wish I could individually thank each and every person who has helped us, but until then please know that you have done so much to make this journey easier.

Now on to a new path, or a new but familiar path that with hope will lead us to a cure.

We believe.

Never a dull moment ...

Our hopes of returning home on oral antibiotics have been delayed with the news of positive blood cultures. Meaning that there is bacteria in Phoebe's blood as well as her urine. The thought is that when the stent was removed, it "showered" her blood with bacteria, causing fevers and requiring IV and quite strong, antibiotics. We were told that this shouldn't affect our plans to go to Memphis and ironically, Phoebe developed a very similar infection just before her first trip to Memphis. Never a dull moment.

With all of the excitement and roller coaster emotions of Friday's events, I didn't get a chance to really thank the wonderful people of Monkey Rock Music for the show they put on in Phoebe's honour on Thursday. Mae had a fantastic time and danced the night away. She was even invited up on stage to play the ukulele. Phoebe was unable to attend, but has watched the video of her sister playing the ukulele about a hundred times, saying "that's Mae!" over and over again. Thank-you Manor Park and Monkey Rock Music for helping to make this journey that much easier. Seeing the school gymnasium filled with so many people, out to help our family, truly lifted our spirits.

The plan for right now is to continue with IV antibiotics, and hope that the coming days include such things as packing bags, booking flights and preparing our family to travel to Memphis. Perhaps even returning home on antibiotics before beginning our next big adventure. Despite this infection that is considered, very serious, Phoebe is doing well. Still playing the days away in her little room at CHEO.

Hope restored

We have hope and a plan.

Thank-you to our wonderful team of doctors, both near and far, for doing all that they can for Phoebe. They put their heads together after learning of the news from Philadelphia this morning and it would seem that all hope is not lost. There is another option, and it is at St.Jude.

This new study ironically reopened today and will use donor Natural Killer cells. It is different from the NK trial that Phoebe has already had at St.Jude as these cells will be modified. It is still new and we haven't yet spoken with the doctors there so we don't have a lot of information, but it is promising and it is likely that Phoebe will be eligible. We could be going back to Memphis as early as next week.

We are relieved and hopeful and just so thankful for these wonderful doctors.

4%

This morning we finally received news from Philadelphia and it is not what we were hoping for. Phoebe's cells have not grown "well enough" to be included in the trial. This breakthrough treatment is no longer an option.

To say that we are devastated and heartbroken is an understatement. We are exhausted, desperate, frustrated by this place that we are in. By the fact that so little attention is paid to children's cancer research - to finding a cure for children like Phoebe.

Phoebe has given over two years of her life to Leukemia. She has participated in clinical trials, we have grasped at straws of innovative therapy desperate to cure her and in turn, the National Cancer Institute has given us 4%. 4% of all funding is directed to the twelve different types of pediatric cancers. Pennies of every dollar raised by the American Cancer Society and Canadian Cancer Society go to help the children whose faces appear on their posters.

There are so many things that are just not right about this. It is not right that my daughter has only ever been given at best, a 10-30% chance of survival. That we have exhausted all forms of treatment and without another option, our sweet Phoebe who right now is jumping on her bed, will not survive. That only one drug has been approved for use in the treatment of pediatric cancer in over twenty years. That 1500 children will be diagnosed with cancer this year in Canada. That today in the US, seven children will die from their disease. That so many children, despite being cured, live with devastating long term side effects. Side effects a result of the twenty year old and often multiple year long protocols these kids are given for treatment.

What else is there to do, however, but move forward? We will pound the pavement, continue to search for a cure, shout it from the rooftops that we need attention to be paid and money to be allocated.

We are not giving up. We are hoping that as time passes something else will surface. A door will open. We are holding on tightly to hope. The hope that shines brightly in Phoebe's smile and feisty ways. She is mighty.





Thank-you to Monkey Rock Music for the great show last night. Phoebe loves her new shirt. 

Thank-you Manor Park

Today when I dropped Mae off at school, I couldn't help but notice the beautiful showcase that the school has decorated in honour of Phoebe's fight. It is filled from top to bottom with stars, not a star free space to be seen, and each carries a wish for Phoebe. It was enough to bring tears to my eyes as each wish was beautiful and heartfelt and so personal. It is clear that these kids are aware of Phoebe's struggles and their empathy and wonderful hearts shine brightly. There were wishes about swimming, playing in the park, getting better. Wishes for sunshine, time at home, time as a "regular kid". There were hugs sent and reading the hopes and wishes of these kids, many of whom have never met Phoebe - made one other thing very clear.

Manor Park Public School, its staff, students and community rock.

Mae's teacher Donna Muldoon together with fellow teacher Sarah Horton, principal Shari Brodie, and staff have truly made a difference. Reading the wishes lifted my spirits in a way that I cannot describe. The wonderful staff have taken on the task of helping our family with so much enthusiasm and heart and I am so overwhelmed (in a good way) by all that they have done.

Tomorrow night in the school gymnasium there will be a fundraiser for Phoebe. It is a performance of the popular and fantastic, Monkey Rock Music. Thank you to Manor Park, staff and students, and the wonderful folks at Monkey Rock Music for organizing this great event. I am looking forward to watching Mae dance and rock to her heart's content. For more information please visit www.monkeyrockmusic.com

And now for sweet Phoebe Rose. She continues to keep all of us on our toes. Today she spiked another fever. This time is was not questionable and it was not low grade. She has had blood and urine cultures taken, and an ultrasound of her belly. Her counts look good, thankfully. She is still holding on to her platelets and red blood cells, even making some platelets, and her white blood cells are within normal range. The steady climb of white cells however does suggest that she is fighting something and the ultrasound shows an infection in her ureter. Probably related to the stent that is still there and so she is being started on antibiotics and admitted, once again, to 4 North. Our home away from home.

We have not yet heard from Philadelphia and to be honest, it is hard not to worry. My greatest anxiety rests in the fear that they will say no, but also if this is the case, that our doctors will stop trying to find a cure for Phoebe. That the task to cure her will be considered too hard. It keeps me awake at night.

We can only hope that Philadelphia will come through, or that something else, some other innovative and promising option will surface.

Please continue to hold on to hope and pray for our sweet Phoebe Rose.

We need a cure.

Let it be ...

We have no news to share. Or at least of the kind that we are all desperate to hear. The news from Philadelphia.

I have decided, however, that rather than obsessively email our doctors, or worry about what they are going to tell us, I will follow the advice of a wise mother and choose hope. I will do this and continue to focus on what we have. We have Phoebe. She is here. She is not in the hospital. In fact she has the "weekend off" from hospital life and as I write this, she is playing happily with her sister.

She woke up laughing this morning and I can tell you that the sound of her laughter is perhaps the most beautiful sound I have ever heard.

I know many families like mine. Families who have spent years of their lives watching their children fight cancer. I know that some of these families would love to be where we are right now. They would give anything to have another chance to cure their child of cancer, to hold their baby in their arms, or to have time to watch their little one play and for these reasons, we are blessed.

And so we will continue to put one foot in front of the other and to live life. Right now life includes a significant amount of screaming and shouts of "no Mae!" and "it's mine, Mae!!!" from feisty Phoebe. Yesterday she put her big sister in a time out. She shouted - "time out!" while clapping her hands together quite aggressively for more effect. She is certainly feisty and two. Thankfully, Mae is very easy going and understanding and if you ask her she will tell you that it is "Phoebe's medicines that make her mad sometimes".

About these medicines ... we are beginning to wean Phoebe from her steroids and yesterday she had another dose of chemotherapy. One of the chemotherapies she receives has been held because her counts are still recovering. She is neutropenic right now, or at least she was on Friday - this means she has very little white blood cells and cannot fight infection. It also means that we need to be very careful.

And so we will keep Phoebe close, and continue to wait. Wait for news from Philadelphia, for news of next steps, news of contingency plans. For news of a cure for Phoebe Rose wherever it may be.

As I was about to post this I heard Mae singing. In her sweet voice she sang a song that has been popular in this house this weekend ... "Let it be, let it be, let it be, oh let it be ... there will be an answer, let it be". I think I will follow her wise advice.

"Shine on until tomorrow, let it be."

Our little friend Matthew is working very hard to recover and is in the ICU at St.Jude. He is on life support and needs prayers and love. I am sending him all the love I have and prayers full of hope.

Still waiting ...

The doctors in Philadelphia have decided to extend the testing window to 10 days and so we will know on Thursday (hopefully), how Phoebe's cells have grown.

The initial results show that they seem to be a bit slow to start off but slow and steady often wins the race, and so we will wait, and we will hope.

The cell number needs to be at 4 to qualify and right now Phoebe has 1.3.

Phoebe and I share the same t-cells as her last transplant was with my stem cells and I know that in many aspects of life, I am slow and steady. She however, is feisty, energetic and full of spunk, so between the two of us those cells will grow.

I believe they will. I have to because I honestly don't know where we go from here.

Please pray for strong cells.

This is a photo of Phoebe, stringing her necklace of courage beads. This necklace, that we have been making throughout Phoebe's journey, has a bead to commemorate and acknowledge each step. It is almost fifty feet long.

Home

Phoebe is home. Home sweet, sweet home. The contents of her room at CHEO filled a wagon, a stroller, and many, many bags, and barely fit inside our very small car. She left with a collection of medications, an IV pump, overnight IV hydration, IV antibiotics, central line care, and most importantly; many, many smiles.

We are overjoyed to have her home as there were a few moments upon our arrival back in the hospital when we worried this would be impossible. Many thanks to the doctors and nurses at CHEO for bringing her safely through those very difficult first days.

On her first morning at home, Phoebe's big sister Mae woke up early like she usually does and came to our room for some cuddles. Her face lit up when she realized that Phoebe was there too and they shared many hugs. It is hard to know how much all of this is affecting Mae, but it is very clear that she misses Phoebe when she is in the hospital and loves having her home.

Phoebe wakes up every morning smiling and laughing. Literally. And these smiles and her laughter are even more joyful when at home. If we could each greet each day with such joy and enthusiasm despite how we may be feeling or what we are faced with, I believe the world would be a better place. Or at the very least, a happier place.

Every day Mae and Phoebe do something that reminds me to be strong. Today, this lesson came from Mae. Mae, who during her school assembly, stood up in front of the entire school (she is in junior kindergarten) to answer questions about her sister Phoebe. Just thinking about this brings tears to my eyes because I know that it is something that she will probably always remember and I am amazed by her bravery. I have a junior kindergarten Christmas concert memory of being the letter "p for Poinsetta", but this is far more important. I am so proud of her. I thank her wonderful teacher and school for giving her the opportunity to speak about Phoebe and for their support. Today there was a pajama day fundraiser held in Phoebe's honour.

Each day on this journey I am reminded and humbled by just how blessed we are. We are surrounded by so many caring people whose support we feel at every step.

The results of the tests that Phoebe had on Tuesday are slowly coming in. Her spinal fluid is clear of leukemia cells, which is wonderful news. The preliminary results of her bone marrow are clear of leukemia cells and the MRI shows a "significant decrease in the size of the mass". Her first MRI showed a large mass that was close to the size of a large grapefruit. Tuesday's results measured it smaller - a small walnut. Wonderful progress. Our MRI report has also decreased from a very lengthy, complicated, and intense 7 pages, to this week's much more hopeful and less dense and complex 3 pages. More good news. We are waiting for results of the MRD (minimal residual disease) tests of her bone marrow, but we should know those very soon.

Taking this good news and running with it all through the weekend. Monday will hopefully bring us good news from Philadelphia of strong, robust and growing t-cells.

Mae and some of her friends made Phoebe a beautiful welcome home sign. If you look closely, you can see Mae, Phoebe, Jon and I dancing.

Grow cells, grow.

Phoebe received her chemo on Saturday and she has been doing very well. Still happy and still a bundle of energy. She is mine and so I am biased, but she really is adorable and just so lovely. She is an absolute joy. She is speaking very well now and spends her days chatting away, never forgetting to say thank-you - even if it is to an ultrasound technician. The best and my most favourite Phoebe thing, however, are the hugs that she gives. She stretches her arms out wide, says "hug", and wraps her little arms tight around me. And then she pats - she pats my back every time as if to say "it's okay, Mama".

Every little thing gonna be all right.

We heard from Philadelphia. The t-cells are now in the lab at the University of Pennsilvania, under the watchful eyes of brilliant doctors and researchers and they will have preliminary results on the 14th of January. We should know on the 14th if Phoebe is eligible for the treatment in Philadelphia.

For now, we wait. We wait and enjoy this time with sweet Phoebe and Mae. We are hoping to be discharged from the hospital tomorrow. This was originally planned for today, but the doctors decided to send us off with an MRI, lumbar puncture with chemotherapy and a bone marrow aspiration. It is sometimes easier to coordinate these things while in patient and they need to be done, so we postponed Phoebe's return home.

The MRI is to look at and measure the mass, check in on Phoebe's kidneys, and determine if the stent (that is in her ureter and possibly the cause of the recent infecion) can be removed. The bone marrow aspiration will check for disease and together with the results of the MRI, will determine how effective the treatment has been so far.

We are hoping for change and progress. We know that the chemo that Phoebe has received up until now is not designed to cure her, but it is expected to continue to reduce the mass and I believe that it will act as a stepping stone to our next phase of treatment.

We are moving forward.

We are also wonderfully supported by friends, family, neighbours, strangers, teachers, and our community. On the weekend, many wonderful people worked to make Phoebe's bottle drive a success. A shout out to all of you who took time out of your weekend to sort, return, drop off, and help us to take a few more steps forward. Over 15,000 bottles were dropped off to the Eastview Beer Store in Ottawa, which really is quite amazing. To the employees of this store for their incredible patience, staff at the Pelican Grill and Lieutenants Pump for donating bottles, and everyone who helped to make this day a success. Thank-you.

We are looking forward ... full of hope that these steps will lead us to where we need to be. That these steps will lead us towards Phoebe's cure.

Go Phoebe go. Grow cells, grow.

Happy New Year

Happy new year and welcome 2013. Lucky 2013.

The first good sign this year came with Phoebe staying up late to bring in the new year. She is feeling much better since the onset of her fevers and infection. The bacteria that was found in her urine had spread to her blood, but once antibiotics were started, she began to improve and yesterday her blood appeared clear of bacteria. We are still waiting for her to sit on the potty to test her urine.

We are also still waiting to hear from Philadelphia but moving forward with the plan in the meantime. Phoebe will get another two doses of chemotherapy tomorrow. Her blood work still looks okay, but her platelets, hemoglobin and white blood cell count have been dropping a little more everyday. It is hard to know if this is a result of the chemo she has had, the infection, or her disease, but we are still moving forward and happy that Phoebe continues to be a bundle of energy.

The most recent ultrasound showed a reduction in the size of the mass, which is good news and another step in the right direction.

Every day brings with it progress and for that and so many other things, we are grateful.

Phoebe has only needed one blood transfusion since her relapse, but we know that she will need more as we continue on this path. Please give blood if you can, it is a gift that allows Phoebe and people like her, to continue their fight. You can call 1-888-2-donate to make an appointment to give.

Happy new year! May 2013 be everyone's year.