Swim Phoebe Swim

The wait is over and yet we have no results. The sample that was taken at CHEO and sent to St.Jude (that was also possibly diluted) was not enough to run the RT-PCR test (the minimal residual disease test) and so next week we will be testing again.

Next Tuesday, Phoebe will have another bone marrow aspiration and the sample (which will hopefully be good and plentiful), will be sent to St.Jude and we will hopefully know soon what the MRD results are. These results are especially important as they are the most sensitive and are looking for leukemia at a very low level.

For now we will hold on to the one piece of good news from this bone marrow test. That is the perfect chimerism, and hope that this delay and mix up will not cause any problems. We will hope that when we finally get all of the results, they will be negative.

In other news, and in many ways this is the most important news - Phoebe went swimming yesterday!

Last night as her Daddy put her to bed, I listened as she told and retold the events of her exciting day.

It went something like this. In the cutest voice ever.

"Daddy, I went swimming today. In Granny, Grampa's pool. I wore my puddle jumper. I swam all...by...myself! Daddy ... I also jumped into the pool. All by myself, Daddy. Mae went swimming too. Mae wore her puddle jumper too. Daddy, you swam under the water. I kicked my legs. Like this ... (sound of wee legs kicking the mattress). Like this Daddy (more kicking)."

And on and on she went.

If I could bottle up the joy that Phoebe expressed yesterday as she got into that pool, or the wonderful and joyful energy she created for the people around her. If I could bottle it and share it, I think I could make the world a better place.

It was magic.

Jump Phoebe Jump

We are still waiting for MRD results of Phoebe's most recent bone marrow aspiration, but so far the news - although complicated which I will explain, is good.

The chimerism results are in, and Phoebe continues to have 100% donor 2 cells in her bone marrow.

What makes this complicated is that the sample of bone marrow that was taken at CHEO last week was diluted with blood. They still sent it to St.Jude and St.Jude still ran the tests, but their lab is unable to determine whether or not it is purely bone marrow. So, although we will still wait for the final results to come in, and this initial news is good, the test will probably have to repeated. Sigh ...

All test results, hospital visits, and cancer treatment aside, Phoebe is amazing. She is growing - a whole 3 cm in the past few weeks and she appears to learn a new word every day. And she has learned to jump. A bit later than most, but she makes up for it by jumping all day long. If you even so much as mention jump in her presence, she will stop what she is doing and jump for you. She has now caught up, if not exceeded her milestones, and we are very proud of her.

This Saturday in Ottawa there is a great event -"Clutter and Cupcakes". It is as good as it sounds, and all proceeds go to Candlelighters and CHEO. There will also be a lemonade stand for Miss Phoebe. Special thanks to the organizers, the wonderful Gabriella's Groupies, for thinking of our family. For more information see the photograph below.

Steroids

Phoebe's latest masterpiece. It is a picture of the four of us dancing :)


We are finally finished a five day course of steroids and I can't wait to get my baby back. I don't know if I have mentioned this yet, how much I dislike steroids, but I do. I hate them. They are used often in leukemia treatment as they kill white blood cells and although they have proven effective for us in the past, they are by no means a cure for this awful disease.

These past five days have transformed Phoebe into a very different child. No longer the independent sweet and feisty girl, she is clingy, weepy, and desperate to be held all day long. She would be happy to only eat olives and demands them for breakfast, lunch, and dinner. To say no to her, as that would be logical and is maybe what some of you are thinking, would cause her to cry inconsolably. She has little control over her own behavior and once the steroids run their course she is back to herself, so instead we just ride it out and make frequent trips to Farm Boy.

When not eating olives, she uncharacteristically naps and is often sleepy. And when not napping, she is running around the house, arms flailing and hitting, shouting that Mae needs a time out. "Timeout Mae! Timeout, time-out, timeout!!!". This happens at least ten times a day, but as soon as we drop Mae off at school, Phoebe asks to pick her up again. And then she asks all day long. She is depressed. Sad. Lonely. And this is all thanks to steroids.

I don't know how we ever did long stretches of steroids. Twenty eight days of high dose steroids. How in the world did we do this? But then I can ask that question of all of this.

We just did and we do and although I have had moments over the past five days where I have wanted to lock myself in the bathroom just to get a bit of peace, I am still grateful. I often think of what one very wise mother and friend once said after saying goodbye to her precious baby. She said, be thankful for even the most difficult days because if they are over, you will miss them and long for them too.

And so we will welcome our angry, clingy, insatiably hungry, moody, olive eating, aggressive yet beautifully cuddly toddler for five or more days each month and we will keep holding her tight.

Some good news (other than the news of the end of steroids) is that we have now graduated to biweekly blood draws, or we will graduate if we can make it two weeks without any thing happening. We are due at Cheo again on the 14th and will also be getting another bone marrow aspiration sometime around then too. The bone marrow samples will once again be send off to St.Jude for testing.

Please keep Phoebe in your prayers, this is another very important test.

We are also amazed and overwhelmed (in the best way) at the support our community continues to give us. There are two fundraising events being held in Ottawa, this weekend and next. Funds raised at these events will allow us to pursue further treatment away from home, if and when that time comes, while also helping to manage medical expenses.

Thank-you also to the runners who ran in events on Ottawa's race weekend in honour of Phoebe! To Alyson who ran a personal best in the half marathon and to the amazing Manor Park kids who ran the 2k with their families and teacher - you have all warmed our hearts! Thank-you!

Out with the old ...

Out with the old, in with the new. Line number 10 (I think, although I may have lost track), is out and a new port is in.

The surgeon who did this procedure today also put in Phoebe's very first line. She was so young and so very small, just 10 weeks old and he had to order the line from the US as she was the smallest patient that CHEO had ever given a central line to. Today he removed what we hope is her very last central line and put in what we hope is her one and only, and last port.

In the recovery room after Phoebe woke up and was happily munching on a post-op popsicle, I pointed out that her "tubies" were gone. She looked down at her chest and a look of sadness appeared on her face - I worried that she was upset as these lines have essentially become a part of her, but she burst into joyful tears and said "I can go swimming now!" Then, after a thoughtful lick of her popsicle, she said, "no, I won't go swimming now. After my Popsicle".

Sweet Phoebe Rose.

We are back at CHEO on Monday for chemo as Phoebe's counts have recovered and her blood work looks great and this weekend starts our five day course of steroids.

Splashing in the bath, cooling off on the splash pad, and swimming will all happen as soon as Phoebe has recovered - and we can't wait.

Phoebe getting her last dressing change at home for her central line.

Sleeping after surgery

Popsicle!

Phoebe Rose

Phoebe had her weekly visit at CHEO today. Jon brought her and has been with Mae and Phoebe full time for the past two days as I am sick. Phoebe's blood work shows that she is just slightly neutropenic, meaning she has very little to fight off infections. Her platelets and red blood cells are on the rise though so we are hoping that her bone marrow is recovering and that this low is short lived.

She also had a visit with an anesthesiologist today as next week there is a plan to remove her double lumen central line and put in a port. A port will give her much more freedom and allow her to enjoy summer complete with splash pads, sprinklers and swimming. We don't know what the future holds and because of the uncertainty surrounding Phoebe's treatment, it is difficult to make a decision to replace a line that she may very well need again in the future as any more intensive treatment, like transplant, needs a central line. But, right now, Phoebe needs to live and life for an almost three year old includes running through sprinklers, swimming and playing in the bath tub, so we are choosing hope, opting for the port and a better quality of life for Phoebe. The port sits under the skin and so unless it is accessed, is not visible, unlike the central line that has "tubies" that hang down from Phoebe's chest. Swimming and really any time in the water or getting wet is not allowed with a central line as it comes with a high risk of infection.

We are hopeful that this procedure will go smoothly and that we have made the right decision, that Phoebe's counts recover quickly and with only healthy cells and that I start to feel better so that I can be reunited with my family that I miss so much.

If you are in the Ottawa area tomorrow, Refuse2Lose Team Bryce is holding their inaugural fundraising event at the Great Glebe Garage Sale. 108 First Avenue is the place to be! There will be treats, lemonade, coffee, music and bargains. All proceeds going towards the Refuse2Lose initiative to support Candlelighters' Suite Seats program. Have fun, eat good food, warm up with a hot coffee (it looks like it might be chilly!), bring home some fabulous treasures and support local children with cancer and a wonderful program.

All is not lost

All is not lost. Of course it's not. Today is a new and better day.

St.Jude looked at the most recent MRI images and compared them to the last scan. They are exactly the same. No lesion, or anything to worry about. Our doctor at CHEO has reassured me of this many times, but knowing that there has been no change, that the dreaded mass is still gone, is a good feeling. Why the radiologist at CHEO chose the words "mass" and "lesion" to describe no change is beyond me. Words matter and should be chosen very carefully when dealing with cancer. 

The bone marrow results are 1 in 100,000 cells. So a very small amount, an amount that on some methods of testing disease (measures used by CHEO for example) is actually undetectable and an amount that is also below what is considered the reliable range measured by this test. It is showing to be there and that is devastating, but it could be a lot worse. Phoebe's doctors have said that at this point, it could go either way. Up or down. It could be negative again with the next test and it could also have been a testing error. I will focus on that, that it will be negative on the next test.

The plan then, is to continue with maintenance chemo and repeat the bone marrow test in six weeks. Today Phoebe's blood work reflects the chemo that she has received. It is not normal and most of her counts are low, so we need to be extra careful with her so that she stays well.

Right now, with this low and sometimes, undetectable, level of disease, Phoebe does not qualify for any clinical trials. If it goes up, we will go there, but we are hopeful that we will have more time before we need to pursue further treatment.

When I look at Miss Phoebe, she is not a sick child. She is feisty and joyful and often incredibly full of energy. She is our leader and we will keep following her.

Thank-you all for the many messages of hope that we have received - there is so much love, hope and prayer surrounding Phoebe and we are very grateful for this.

The journey continues ...

Tonight Phoebe was featured on CTV as one of the many amazing people in her community.

Today we learned that the bone marrow sample that was sent to St.Jude, came back positive for Leukemia. It is at a very low level, less than one in ten thousand cells, but coupled with the word "lesion" on the MRI report, it is enough to send me over the edge. I am so sick of this disease and what it is doing to our family. What it has the potential of doing to Phoebe terrifies me. I cannot put into words how this feels. I have no idea what this means. I am exhausted, angry and so very weary. I am allowing myself today to wallow in this misery. The misery that is infant leukemia. Tomorrow will be a new day.

Throughout this journey, I have rarely stopped to ask why, but today I had many of those moments. Why us? Why Phoebe? What went so horribly wrong during my pregnancy when I tried to do everything right? Why are we continually asked for so much? Hasn't Phoebe fought enough? Hasn't she given enough? We have been without any FDA approved or guaranteed options for treatment for almost two years. That is two years of grasping at straws. Two years of clinical trials, of trying to get innovative and new treatment, of praying for the last spot in a study that is "promising". Two years of packing up and moving.

Fighting desperately for just one more chance.

We spend our days researching and searching and are doing all that we can. We feed our kids healthy and organic, we give them all of our love, Phoebe takes vitamins and supplements, we understand and try to implement any so-called natural "cure" that makes sense. This leukemia is built into Phoebe's DNA - it is smart and it is fierce. But we are not backing down.

Ask Phoebe if she is sick and she will tell you no. She will tell you that she used to be sick. She may even tell you that she used to vomit a lot which is the truth, but today, oh no, today she is fine. This means something to me. Phoebe has an unstoppable and fierce will to live and to beat this monster. She, pure and simple, and just like the meaning of her name, is bright and shining, and she inspires me everyday.

She is an amazing person.

It was in July of 2011 after the first relapse that we were told that Phoebe had weeks to live. Told that the leukemia that was left to rage untreated inside of her would most likely take her life. That there were no options for a cure. We have had almost two years of life since then.

Two years.

Two birthdays and so many joyful and unforgettable moments. We have lived with and without cancer, we have been witness to terrible and heart wrenching moments, but we have also managed to flourish and grow and simply be. I have cherished each and every moment. Why I have had to cherish moments and pray that i will be given more, I will never completely understand, but we have and will continue to take this life and make of it all that we can.

And we will Believe because Phoebe does. And we will believe because we have an amazing team of doctors on our side, doctors who are working hard for Phoebe.

Please pray for our girl. Please pray for options and a cure.

Thank-you to the journalists, producers and everyone at CTV news who had a part in so eloquently telling Phoebe's story and bringing this disease to the forefront. You can watch Phoebe online at http://ottawa.ctvnews.ca/features/amazing-people