On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. A not well understood, difficult to treat and cure, Leukemia. This is her story of hope and love in the face of cancer and despair. It is best read from the beginning. Thank-you for visiting.

Friday, August 15, 2014

BackPacking in Denver

The sun has set on day three and all is well. More than that, all is quite good. Phoebe has now been hooked up to a continuous infusion of the study drug for three days. When we heard that this drug was a 24 hour continuous infusion over 28 days we wondered how this could possibly work. Phoebe is a busy and very active four year old. She is also very feisty and stubborn. When she gets going she doesn't stop. I imagined running along side her desperate to keep up while carrying her bag of medicine, I imagined Phoebe refusing to cooperate with any of this, and I am happily and pleasantly surprised. 

Phoebe wakes up each day, jumps out of bed and the first thing she does is put on her back pack. The very first thing. It is really quite something. She wears this backpack for most of the day. She doesn't complain, she just goes about her day. 

There are many things that Mae and Phoebe do that I am proud of, but watching Mae run to help Phoebe put on her back pack, seeing her carry it when Phoebe is tired, and about Phoebe's constant and happy backpack wearing - I am very proud. Not a typical thing to be proud of, but we are beaming with pride nonetheless. 

As far as the clincial trial goes, it is too soon to tell how things are going, but when Phoebe had her blood work done yesterday, there were improvements and signs that her bone marrow is still making healthy cells. Things are moving in the right direction and it is encouraging. We probably and hopefully won't have another bone marrow test until the end of this 28 day cycle. If all continues to look well there is no reason for this test and we can give Phoebe's little back a break and a chance to heal. 

In the meantime, all of the signs point to a healthy Phoebe. She is fierce and fast and full of joy. She keeps us and her doctors on our toes. The drug so far has been gentle and unlike most other treatments she has received. We are happy and relieved. 

In other news, we have lasted about as long as we can in a single room with a microwave and a mini fridge. We miss cooking and space and the stress of living in a room with a family of four while we are also dealing with stress of clinical trials in a new city was getting to be too much, so we found an apartment close to the hospital and are excited to move soon. Quality of life is really important to us and when many other things are falling apart and causing stress, coming home to a quiet space where we can make a healthy meal, is about as good as it gets. 

Wednesday, August 13, 2014

Day 1

Phoebe has officially started the clinical trial. Today was a busy day. 

We are on the front lines and while it can be encouraging and hopeful to be where we are, it is also extremely heartbreaking. Each day we are reminded in some way of our precarious situation and fear starts to set in. Phoebe, our fearless leader, usually brings us back, but it is hard.

Phoebe is the second child to be enrolled on this study. The first child, we learned today, recently lost his battle with infant leukemia. He was 9 years old. The study investigators have searched and searched for a reason that might connect the drug to his death and found nothing. Our doctor also told us that up until this heartbreaking moment, the drug was working. All of the adults who have received the drug have reported no side effects. When you get to this place where we are, the place of relapse and last options, the place where your child has received years and years of toxic and harmful treatments that have done little more than temporarily calm the storm, it becomes painfully clear that the chances that something could go wrong are great. I usually push this to the back of my mind. Not my child. Not Phoebe. I try as best as I can to believe that we are going to change this story, but at the end of the day, this is our reality. Infant Leukemia is a monster. We have lost too many friends to this disease to believe anything but this. My thoughts are with this little boy and his family. To be 9 years old and still fighting this monster - I can't even imagine but at the same time, I can. May be rest in Peace. 

God bless this family. 

We heard this news just before the study drug was set to be started. Our doctor gave us some time to process it and ask questions. We decided to choose hope and continue with the plan. Focusing on the adults in complete remission. Focusing on the reasons this will work rather than why it might not. Remembering how we felt when we woke up this morning, full of hope and excitement at the fact that for once Phoebe would receive a targeted therapy. We chose hope with this family and the many other families we have met on this journey firmly in our thoughts and hearts. There are many little ones whose memory we carry with us each and every day and in many ways, the thought of these brave kids is what keeps us going. 

We need a cure. 

As the study drug was connected there was a tremendous feeling of hope in our little room. We were joined by Phoebe's doctor who is the investigator for this study in both kids and adults and we also met the researcher whose tireless work went in to developing this drug. When this doctor entered the room, she was beaming. She talked about her research and how the drug works - she explained it very simply, telling us that the drug is similar to the make up of human cells; that the production of cells is like a chapter book, but this drug is programmed to tell the cells to "skip a chapter" - skip the chapter, where in Phoebe's case, the chromosomes mix up and cause leukemia. Essentially, the drug is designed to stop the process that causes the MLL gene to function and because this is what started Phoebe's leukemia, there is great hope that by stopping this process, we will stop the leukemia. 

Great hope, but also great fear. 

To watch such a simple procedure - one IV tubing being connected to Phoebe's central line and a few pushes of a button, but to know the great work that went in to getting to this moment, was really something. To watch the researcher watch in awe as Phoebe was hooked up to this medicine, and to know that in that moment she saw her hard work come to fruition, was an amazing thing. I am glad we had this moment and I am relieved that this group of researchers has been able to get this drug to trial, that they have chosen this leukemia to focus on, and I have great hope. I pray that this is the breakthrough that Phoebe and so many others need. 

Shortly after Phoebe was hooked up to the study drug, she remembered that there was a toy ride on car in the playroom and promptly decided that she was going to have a "little race" around the clinic with Mae. After trying to keep up with her while carrying her IV bag and trying not to trip on the IV tubing, I convinced Phoebe that she would be faster if she wore her back pack - she agreed, strapped it to her back and off she went. Like the wind. 

When she tired of carrying her back pack, her big sister offered to do it for her. "Where would you like to go, Phoebe? I've got your medicine". And off they went. 

We are back at the clinic tomorrow and then, if all is well, we will have the weekend off of hospital life. 

We've got some more exploring to do. 

Tuesday, August 12, 2014

We believe ...

We officially and finally qualify for the study and tomorrow is the big day. The day we have been trying to get to for the past 10 weeks. It is amazing to think that it has been that long since Phoebe relapsed and Jon and I still watch her and wonder how any of this can be possible. I know I have said it before, but Phoebe is not a sick girl. I take this as a good sign and I am happy that she is starting this clinical trial tomorrow in what at least from the outside appears to be excellent health. 

Phoebe's bone marrow results were "patchy", meaning that some spots had more disease than others. This is not common with leukemia but the doctors did find a good spot in her left hip with 60% disease. More than enough to qualify for the study and so tomorrow Phoebe will be hooked up to this targeted medicine and she will continue to be hooked up for the next 28 days. 24 hours a day. The medicine will run through her central line while she sleeps and while she is awake but if all goes well we will be able to receive all of this treatment out patient. We have been trying to prepare Phoebe for this and she has been "practicing" carrying around a little back pack. She loves her back pack and often carries it around with her toys, so hopefully she will get used to having it hold her medicine. I think it will take some adjustments and getting used to. It is heartbreaking, just how many things Phoebe has to endure and get used to. Instead of picking out a backpack to hold what we hope is lifesaving medicine, we should be back to school shopping for Phoebe's first school bag and planning her first day of school. Life just isn't fair sometimes. 

We are grateful to have this chance. With each relapse, we worry and fear that we have tried all that there is to try. With each relapse in the past, we wished for an option like this. A targeted drug that is actually meant for MLL+ leukemia. Phoebe will be the second child to receive this drug. Scary yes, but no scarier than chemotherapy and the multitude of side effects that it brings. We are excited to actually give Phoebe a medicine that is designed with her in mind. A medicine that won't make her terribly sick before it makes her well. It only takes one and perhaps this is the one medicine that will make the difference for Phoebe and children like her. Perhaps this is the breakthrough that the infant leukemia world so desperately needs. We need a breakthrough. 

We believe. 

Sunday, August 10, 2014

A week without doctors ...

We are still here in Denver. After seeing that Phoebe had just 3% disease, the doctors decided to recheck her bone marrow in a week. Considering that the bone marrow results were low and that Phoebe's blood work looks good, this gave us an entire week off of hospital life. 

We did some exploring and pretending that we are in Denver on vacation and not for a clinical trial. We saw more of the mountains. We drove as high as any road in North America will take you, up to the top of Mount Evans. We got out to do a bit of hiking and exploring around Summit Lake. It was freezing (for August) - a brisk 12 degrees Celsius at the top so we didn't stay very long, but the views were breathtaking. Thankfully Jon was driving or we would still be up there in the mountains, frozen with fear at the side of the road. Those roads are narrow and scary! We saw a wild animal sanctuary, road on carousels and trains, and even found fossils of dinosaur footprints. We did some more hiking, explored some more, and just had good qualify family fun. 

Phoebe celebrated her fourth birthday with a trip to the zoo, a sushi dinner, and a surprise "frozen" cake that was a gift from a very kind and thoughtful nurse from CHEO. Kindness abounds. This cake made Phoebe's day and seeing her light up with happiness, made our day too. 

Every so often though, the real reason we are here sneaks in. It is easy to forget why we are here as most of time we look at Phoebe she is running, jumping and playing. She doesn't nap, she isn't tired, and she has absolutely no symptoms of this disease. It is quite something how she manages to live with cancer. We go about our life and no one suspects that this little girl that runs along beside us often giggling with her big sister, has cancer. 

We are rechecking the bone marrow tomorrow. If Phoebe has enough disease for the study - 10% under the microscope, we will stay in Denver for at least a month so that we can give Phoebe one cycle of the study drug. If Phoebe doesn't have enough disease, I don't know what we will do. Probably go home and wait some more. We don't really have a plan. 

It is hard to know what to hope for. Although we need more disease for this study, I refuse to hope and pray that Phoebe get sicker. It just doesn't seem right. Instead I pray and I hope that these next results lead us to the path that we are meant to take. We are thankful that we have options and we are thankful that Phoebe continues to stump her doctors. I write this because although I wish that we had answers I also realize that the answers that are out there are not what we want to hear. Despite how hopeful our doctors may be, I know that they expect Phoebe to get sicker and sicker because statistically, they know that after this many relapses of this disease, there are few to no survivors. Phoebe is proving them wrong and I hope and pray that she always will. I know that they hope for the same thing too. 

Tomorrow Phoebe goes in at 10am for her procedures. This will be her twelfth bone marrow aspirate in just over two months. She has many tiny little holes in her back. I find myself staring at these litle holes that are trying hard to be scars and visualizing a healthy and grown up Phoebe telling stories of how she once was known to stump and mystify doctors. Telling stories of how she survived. 

There she is. I can see her. 

Monday, August 4, 2014

Groundhog Day

We are back in Denver. We arrived yesterday after a long journey and Phoebe had her bone marrow, spinal fluid, blood and heart tested today. 

Her spinal fluid is clear and her heart is healthy. Her blood work looks good. 

The next piece of news ... I don't even know what to say about the next piece of news. 

The disease in Phoebe's bone marrow is at 3%. This is down from 35-40% without treatment, after going from 85% to zero with very little treatment a couple of weeks ago. This is a disease that we have watched Phoebe fight for close to 4 years. A disease that we know to be aggressive, that we have seen rage out of control in the past, that we have seen grow inside her belly, literally grow, and cause acute kidney failure, a disease that we know is there. This place that we are in is as hopeful as it is terrifying. 

Right now, Phoebe doesn't qualify for the study. This is despite the fact that just last week she had two bone marrow tests done, one on Tuesday and another on Thursday that showed 35% disease. The level of disease didn't increase from Tuesday to Thursday which left Phoebe's doctors confused, and now, I am sure they are more so. 

I feel like we are stuck in a really bad version of that not so good movie, Groundhog Day. 

We have a lot of questions and no one seems to have answers. 

But ... Phoebe is great. We arrived last night and she promptly got to jumping on the bed with Mae. She has thankfully decided that she likes the hospital here and the people in it which makes hospital visits much easier. She is eating well, playing hard, and laughing often. She is a picture of health. 

We are not sure of the plan. We hope to hear more tomorrow. We are confused, frustrated, but also thankful that this disease is not raging out of control. We are thankful for Phoebe and her many tricks, but are anxious to have bone marrow results that show no disease and to have a treatment that will take us there. 

In the meantime, it looks like we have a few days off of hospital life and some exploring to do. 

“I love to see a young girl go out and grab the world by the lapels. Life's a bitch. You've got to go out and kick ass.”
Maya Angelou 

Monday, July 28, 2014

Making plans

"To live is so startling, it leaves little time for anything else". Emily Dickinson

This is very true of our life. 

Today was hard. Lately, honestly, we have had many hard days. We are hanging on, but at times it is with very little. 

Phoebe had her bone marrow aspiration today. I had convinced myself that the results would be negative. That we were witnessing a miracle, that the remission we saw last week would be more than just fleeting. Phoebe looks wonderful. Her cheeks are rosy, her appetite is as good as always, her energy is perfect, she is a bit grumpy as the high dose steroids wear off, but when she isn't she is a beautiful and happy trooper. Her blood work today looks better than last week - there are no signs of disease. 

Yet we now have 37% leukemic blasts in the bone marrow. From nothing under a microscope to 37% in just over a week. I hate cancer. I hate it with everything I have. It is not supposed to be this way. It is supposed to be slow and calm, not another raging and relentless storm inside my child, who looks and seems perfectly fine. It is not supposed to be at all. 

On the bright side, the bright side that we can glimpse if we strain our necks and stand on the very tops of our toes - is we now probably qualify for the targeted study. This treatment is promising and targeted. Essentially it is what we have been waiting for all of these years. We have hoped for something like it with each relapse - a treatment that is ACTUALLY designed and targeted for MLL + leukemia. Not simply more drugs meant for other cancers thrown desperately at a disease we don't understand. 

We may be going back to Denver very soon. We probably should have stayed,  but at least we were able to sleep in our own beds and experience the comforts of home. For this we are grateful, as there is no place like home and nothing quite like watching Mae and Phoebe play at home. 

The plan right now is to repeat the bone marrow test again on Thursday, as unfortunately, not all tests that need to be run for the study were run. Once we know that Phoebe qualifies we will pack our bags once again. 

We are emotionally exhausted. It is hard to live with so much uncertainty. We long for stability - mostly for Phoebe and Mae.  We have a lot of questions and not many answers. We are trying to go with it and to have faith - we are living life on the tips of our toes, with impossibly strained necks, just so we can glimpse the bright side. 

When we get there it will be magnificent. 

We are thankful that despite all of this, despite this disease that just won't give up, Phoebe is well. She may have cancer but she is not a sick child. She is energetic and full of life and today as I was feeling sorry for myself, I just looked at her and Mae playing the day away and felt better. They make me smile and they give me hope. 

We are also grateful for the support and love being sent our way, for the messages, donations, garage sales, and events that are in the works or have already been held for Phoebe, really mean so much to us. We are doing what we can, but knowing that we can travel this road together without the worry that we will lose all that we have at home in the process, is a huge weight lifted. We read each and every comment and they truly help us through. Thank-you. 

One of the blessings of this life is the beautiful and truly amazing people that we have met. The families that we have met on this journey go out of their way to help us and to help others despite all that they are going through and it warms my heart. It is a beautiful community of people that I am grateful to be a part of although in many ways I wish didn't have to exist. When you share a tiny room in the midst of an impossible crisis, the bonding and friendship is often immediate and life lasting. 

Refuse2Lose Team Bryce - our dear friends who do so much for children fighting cancer in memory of Bryce Jude, a remarkable and unforgettable little boy,  are organizing a "Dine for a Cause" dinner and silent auction on August 28th at Biagio's Italian Kitchen on Richmond Rd. For more details and to purchase tickets, please click here

The Shouldice family, our roommates and friends at CHEO, have dedicated this year's John Shouldice Memorial Golf Tournament on Tuesday August 26th to Phoebe. This is an annual event with proceeds each year benefitting an oncology family. 

For more information, please visit: 

or contact Mike Shouldice at johnshouldicememorial@gmail.com


Friday, July 25, 2014

Home again

We are home and happy to be here despite not knowing how long we will be home for or where we are off to next. Home is the best place to be and it is where Phoebe and Mae are happiest. We also came home to our grass cut, our fridge stocked with the essentials, our car cleaned, and our basement organized - we were exhausted so this was a welcome and beautiful sight. 

We had a visit to CHEO today. Phoebe's blood work looks okay. She is almost neutropenic but her platelets and hemoglobin are on the rise. She is keeping us on our toes and it is hard to tell what is going on in her little body. Her oxygen saturation level is normal - this was an issue with the pneumonia in Denver so is good news. Her liver and kidneys look good. She looks good, albeit a bit tired. She should be tired though as she has been up past midnight for the past two nights. Up past midnight laughing and talking about what she wants to do for her birthday, for Halloween, for Christmas - she has it all planned out.

Go Phoebe go. 

Our next visit to CHEO will be Tuesday for a bone marrow aspiration. The results of this test will give us a sense of what is going on, and they will hopefully lead to a plan. We have decided that if the results show less disease, we would like to pursue options that will keep Phoebe in remission rather than wait for relapse. If the results show more disease, we will simply wait until there is enough for the trial and hope we can still get in. 

We are happy to have options. Three years ago almost to the day, is when Phoebe relapsed for the first time. I will never forget that day as it holds so many of the reasons why we keep fighting. We have had 3 wonderful years when all statistics and data suggested we would have none. Of course we will keep fighting for more. We have learned that there is value in research and innovative treatment and these treatments have given us the most precious gift of time. 

To people looking in from outside, our life seems messy and chaotic and stressful, but to us, right now, it is whole. It is all of those other things too but we are together and complete, so it is good. 

Maybe this next fight will give us another three years. Maybe it will give us a lifetime. We certainly hope for a lifetime. 

"Is there any medicine in this whole world that will help Phoebe? There should be". Mae Doull-Hoffman 

Yes, there should. And we have to believe there is.