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

All went well yesterday. Phoebe was sedated for her MRI, bone marrow and lumbar puncture. She was well taken care of by the nurses and doctors at CHEO. The MRI nurses remembered us from the scans that found the devastating pelvic mass and were happy to see that Phoebe recovered and is doing well.

As I sat in the waiting room, our doctor, who personally did the procedures, came out with the package of tubes, all filled with Phoebe's bone marrow cells to be sent to St.Jude. They should be arriving shortly if not already, and we hope to have some results by the end of the week.

The MRI is looking at Phoebe's belly and pelvis and essentially for any evidence of disease as we know that this is an area where her disease once filled. The lumbar puncture looks for leukemia cells in the spinal fluid as this is a site that is high risk for relapse. Phoebe also had chemotherapy injected into her spine yesterday. Something that she has had many times and our doctors want her to continue every three months, just in case. She is doing well and although she was a bit tired after her big day, she perked up when we picked Mae up from school. She is always at her best and happiest when her big sister is close by. She asks Mae the same question almost every day after school. "Did you have fun, Mae?", and when Mae answers yes, she smiles, happy to know that her sister is enjoying her day.

Yesterday, Mae told her class all about our walk for CHEO this weekend. She told them that it was to help kids with cancer. She is doing her part to raise awareness too. Bless her heart.

Phoebe is on day four of a five day pulse of steroids as part of her maintenance therapy and she is surprisingly extra cuddly and clingy, not the feisty girl we are used to. She is experiencing mood swings as a result of this drug and would be happy to only eat sushi, for each meal and snack. When I put her dinner in front of her last night, she looked at it then up at me and said "where's my sushi?".

We are back to CHEO for blood work this week, and hopefully MRI results, so we can relax and enjoy the weekend with good news.

Big day ...

Tomorrow is our big day. We start bright and early at 7am and Phoebe is scheduled for an MRI, bone marrow aspiration and lumbar puncture with chemo.

Following the tests, CHEO will send samples of bone marrow to St.Jude so they can run chimerism and MRD tests. And then we will wait. And hope that our miraculous good news continue.

We are enjoying our days and life is getting back to normal once again. To add to this normalcy, Phoebe's doctor at CHEO is working on replacing her central venous line with a port. A port can also be used for medicine and blood products, but it sits under the skin, whereas the CVL comes directly out of Phoebe's chest. With a port, Phoebe can bathe normally. She can swim, run through sprinklers, and enjoy her summer. We would love to be able to live without any line at all, but if we need a line (which we do), this is the best one for Phoebe right now. The CVL will be necessary again if Phoebe needs more intensive therapy, but we are hopeful that will never happen and we can simply ride out the rest of treatment with a port.

In other news, today we walked 5km as part of the "CN cycle for CHEO", an event that raises awareness and money for treatment and research of oncology at CHEO as well as supporting Candlelighters and the Ronald McDonald House. All important charities. Today's event raised 726,410 for pediatric cancer initiatives in Ottawa.

It was a good time and Phoebe walked and walked and truly enjoyed her day. She pointed out geese, balloons, flowers, and anything and everything else she spotted along the way. We walked among family and friends and childhood cancer heroes. It was a good day.

As anyone who has been reading this blog knows, awareness is very important to me. It is through awareness that funds are raised and research happens. And it is through research that answers and cures are found. And to be honest, without the progress that has been made recently in the research of Phoebe's cancer through clinical trials and new treatment, we would not have our girl with us today. We have relied on research, new treatment and new options for some time now. Research is so very important and it will continue to be important and essential until pediatric cancer no longer exists.

1500 children will be diagnosed with one of the twelve different types of pediatric cancer this year in Canada. One in four of these children will die. There are children's cancers that are very treatable, overall I have read that 70-80% of children are cured. While this is a wonderful and encouraging statistic it does not tell the whole story. What is not told in this statistic is that many children are treated for 3-4 years and many suffer from devastating and life altering long term side effects as a result. Including secondary cancers. That many childhood cancers are not even close to being cured. Many, like infant Leukemia, have devastatingly low survival rates. Some are without any proper treatment at all.

Phoebe will be cured of her disease, I believe she will. I believe that she will continue to beat down the odds that at times have seemed insurmountable, but at the end of the day, when we have fought this beast for years, we will spend the rest of our lives worrying that she will be among the children who receive radiation and chemotherapy and develop a secondary cancer. Or we will worry that she will suffer one of the many, many other devastating long term side effects.

But for now we will do what we can. We will live and celebrate life. We will work through whatever we are given and we will continue to walk and run and write and do what we can to raise awareness.