On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. On November 18th 2015 , she took her last breath. This is her story of hope and love in the face of cancer and despair. Phoebe always brought the joy and continues to inspire us to make a difference. It is best read from the beginning. Thank-you for visiting.

Wednesday, August 27, 2014

Phoebe had a visit to the hospital on Wednesday for blood work, an EKG, a lumbar puncture with chemo, and a visit with the doctors. 

Only in the world of cancer treatment can things be described as well and they are described this way. Phoebe looks well, she is still running around after her sister and telling the nurses exactly what she thinks. She is feisty and full of spunk but there is more to Phoebe than meets the eye. Today her platelets and hemoglobin are dropping, she is close to needing a blood transfusion, she is neutropenic, meaning she has nothing to fight off infections, her EKG was slightly elevated, markers that signify tissue and cell damage are high - this could mean leukemia or it could mean that the drug is doing what we hope and breaking down the leukemia cells. We are hopeful it means the latter, we believe that it does as all of Phoebe's other levels are normal, but it is so hard not to worry. The worry is only compounded because we are exhausted. We are also homesick. Overwhelmed. Anxious. Scared. It is just hard. We need some good news and a real sign that this drug is working but there is no plan in place to test this until the beginning of September with the very end of this cycle. Patience is not a strength I have but something I have been working on for the past almost 4 years. 

We have had a string of bad luck here in Denver to add to the stress of our everyday. Last night our rental car was broken into. They didn't really take anything, just a spray bottle of kid's sunscreen and Jon's sunglasses. It could be worse. They did make a point of using the spray bottle to decorate the interior and exterior of the car with sunscreen though. That was nice of them. Last week this same rental car was towed and because it is a rental, it took two days and too much money to release it. I often say that our life is manageable because everything outside of Phoebe being sick is relatively okay. Lately though, the small stuff is becoming big stuff and we are struggling to cope. 

Sometimes the stress is palpable. I can feel it. It makes my head ache, my chest hurt and my mind race. Despite all of this we continue to breath in and out and put one foot in front of the other. It is the only option, but I long for a day when I no longer cling desperately to hope. When things are not so precarious. 

I am thankful that we are here and I do not take for granted that we have this chance - it is a good and promising chance, but sometimes the bright light that we seek at the end of this long tunnel seems too dim and far away. Today is just one of those days. 

We are back at the hospital tomorrow to repeat the EKG - the EKG is done regularly because some of the adult patients experienced mild heart changes while on the study drug. We need it to be normal. We are in again on Friday for more blood work and to see if Phoebe needs blood products before the weekend. I hope not. I hope to see count recovery, a healthy heart and a sign that we are on the right path. 

Tuesday, August 26, 2014

What you can do ...

On Friday, Phoebe's blood work showed that her counts continued to drop and she was very close to needing a transfusion. The doctors decided to wait, given that Phoebe is a picture of health and has no symptoms. They were especially impressed when she listed off what she had for dinner the night before. "I had capers, artichoke, crab, avocado, kale, hearts of ... what was that a heart of Daddy?" She is eating well, living well, and really does look good. We were given the weekend off and so far all is well and we have been able to avoid an emergency visit to the hospital. With counts as low as Phoebe's, we expect to see bruising, fatigue, and irritability, but we still see joyful Phoebe. For the most part anyway, she does have her moments. We are hoping tomorrow's blood work shows some signs of improvement and that we can avoid a blood transfusion. 

In other news, September has arrived and it is childhood cancer awareness month. There are many things that you can do to make a difference and I challenge you to do something to help, honour, and support children fighting cancer. It is easy to look away and pretend that this disease doesn't exist, but it does, and we need your help. 

In honour of Phoebe and her many friends whose lives will never be the same, please ...
Donate blood or platelets. 

Regsiter to be a bone marrow donor - OneMatch is holding a swab event at the Childhood Cancer Awareness event on Parliament Hill on Sept.7th, so you can do just this. Canadian Blood Services will also be there so that you can also sign up to give blood. 

Donate to a pediatric cancer specific charity - for ideas, see the list at the right of this page. 

Wear a gold ribbon and tell people what this represents. 

Change your porch light to gold and invite your neighbours to do the same. Take a picture of your beautiful gold light and share on Facebook and twitter with the hashtag #GoGold 

Volunteer in the oncology ward at your local children's hospital. 

Help a local family dealing with a childhood cancer diagnosis by offering to make meals, cut grass, shop for groceries, or assist with childcare. 

Write to your local MP or MPP and ask them to be a voice for the over 10,000 children currently fighting cancer in Canada. These children, the many before them, and the many that will come after them, need a voice. 

If you are in the Ottawa area, please attend the childhood cancer awareness event on Parliament Hill. We are grateful for the support from Ottawa's Mayor, as well as MPP of Ottawa Centre, Yasir Naqvi, MPP of Ottawa South, John Fraser, MPP of Ottawa Vanier, Madeleine Meilleur, and Ontario's Minister of Health, Minister Eric Hoskins. The event begins at 6pm, and for more information, please see www.facebook.com/gogoldcanada 

I challenge you to do just one of the things on this list during the month of September and when you do, please think of families like mine, and know that when September ends and the pink ribbons take over, we still have children that are sick, fighting to survive, or dying from cancer, and are incredibly grateful for the support. 

The Parliament Hill event is organized by local oncology families, our friends, and extended families - mine included. 

Since Phoebe was diagnosed with cancer, I have written what seems like a hundred letters - to Members of Parliament, Ministers of Health, and the Prime Minister. Apart from the positive response from Ontario's health Minister that led to us receiving treatment in Denver, I have received few, if any, heartfelt and sincere replies. I often wonder what it would take for those who have the power to make change, to do something and I am often frustrated by the lack of attention that children fighting cancer receive from the Canadian federal government. Earlier this year, the organizers of the Parliament Hill event sent out hundreds of invitations. Hundreds. Each and every federal Member of Parliament received an inviation. The leaders of each federal political party and the Prime Minister received an invitation and a letter, explaining why this event is important. Slowly the regrets have come in. I have read each and every one. Some are heart felt, but most are standard replies often with at least one careless error, written by a quick hand without acknowledgement of the actual issue. So and so can't attend. The MP is busy. I understand that people are busy and that MPs have demanding jobs, and I don't expect everyone to attend, but what really frustrates me is the lack of understanding. These are CHILDREN. We are asking that attention, support, and recognition be paid to children, who by absolutely no fault of their own, have been dealt an incredibly unlucky and crappy hand. Children who are dying. Children who are suffering and spending many years of their childhoods fighting cancer with out-dated and toxic drugs that all too often do more harm than good. How this is considered okay and not given the attention it so desperately deserves is something I will never understand. 

Cancer is the leading cause of disease related death for Canadian children. It receives, on average, 3% of funding from the federal government. There are 12 different types of pediatric cancer and many of these, including Phoebe's, have very low survival rates. There have been only 2 drugs approved for use in the treatment of children's cancers in over 30 years. This leaves children to fight cancer with outdated and antiquated drugs that are meant for adults, not the developing bodies and minds of children. It leaves children to suffer long term side effects that affect, shorten, and threaten their lives. 80% of children may be "cured", but this cure comes at a devastatingly high price. It can come at the cost of their lungs, their heart, their intellect, their fertility. Children who are cured of their cancer are at high risk of developing a secondary cancer. For many, the struggle to a cure never really ends, it just changes. The "cure" begins to mean something else. Another year. Another battle.

As I sit here and watch Phoebe play, weighed down constantly by a back pack of medicine that weighs a third of her own body weight - something that she carries day in and day out without asking for help or complaining once, I realize that this backpack represents hope. It represents research, determined doctors and scientists, promise, and a chance at a cure for a disease that we have watched Phoebe fight for most of her life. It is progress. We are grateful for this chance, but we fought very hard to receive it and I can't help but think that it should be easier than this. That the same hope that is found in new research and clinical trials should be accessible to all Canadian kids. We have been unable to access innovative treatment for Phoebe's cancer in Canada since 2011. If we had followed the Canadian plan, Phoebe would not be here. The Canadian plan had us giving up before we even got started. 

It doesn't have to be this way. I expect more. At the very least, I expect the Prime Minister, and the leaders of each Federal party to encourage their MPs to attend the Childhood Cancer Awareness event on their behalf. I expect a federal Member of Parliament to join us and offer to stand with the thousands of Canadian children fighting cancer. I expect someone to offer to be their voice in the House of Commons. It is really easy to look away, but it takes courage to stand with us. 

In the month of September, I challenge you not to look away.

Please stand with us. Please share. 

Go Phoebe Go. 

Wednesday, August 20, 2014

Up and down

Denver life is exhausting, terrifying, joyful and full of hope all at the same time. Much like this journey has been. Each day we go through a very intense mix of emotions. We are up and down and all over the place. There is reason to hope and believe that all will be right in our world, but there is also great fear, uncertainty and sadness.

The kids in Denver have started school. I am surprised by how much this is affecting me. Seeing kids ready for school with their backpacks filled with supplies rather than medicine is hard. When Phoebe turned four one of the first things she said to me was, "Mama, I'm four now, I need to be going to school not going to the hospital". If only it were that simple. It is heartbreaking to have to explain why she can't go to school. Add to this that Mae won't start grade 1 with her friends and the uncertainty of where she will go to school for her grade 1 year sometimes leaves me feeling like these everyday things are spiraling out of control. To see that this journey is also affecting Mae's life and her happiness is hard. I was also really looking forward to the first day of school - to seeing Phoebe line up with her class and hearing about the day and the friends that were made. I wanted so much for Phoebe to have this experience. Cancer takes so much from her and as much as we look on the brightside, have perspective, and are grateful, it is impossible to ignore the sadness of a little girl who just wants to have her first day of kindergarten and can't. She won't experience it this year, but one day, she will. 

Here in Denver we are taking things as they come. We are dealing with a rash that is not bothering Phoebe at all but that looks very similar to GVHD. Phoebe's doctor suspects that this might be what is happening and has said that this is not a bad thing as long as it remains under control. It could actually be very good. Phoebe still has a large population of donor cells which are hopefully getting stronger as this drug works its magic. These donor cells could be fighting against Phoebe's body and causing graft versus host disease (GVHD). What makes this a good thing is that with GVHD comes Graft vs Leukemia as when the graft fights the host (Phoebe) it also fights the cancer. There is also a chance that this rash is simply a drug reaction but this has not been documented in any other patients and we all prefer the GVHD theory. 

If you ask Phoebe her opinion on what her cells are doing she will jump up, smile, and say "getting bad guys and smacking bums!" - I don't know where this came from and we don't go around smacking bums here, but it has caught on and it is impossible not to laugh when she says it. 

Phoebe's blood work today showed some count recovery and healthy cells. Earlier this week we had elevated kidney function and today, these tests show close to normal levels. This is all good news. Phoebe's kidneys work hard and after one was crushed by the mass with the second relapse, we rely on the other stronger kidney to do a lot. Our minds race whenever we see elevated kidney function as this was one of the symptoms of the second relapse. With each abnormal test result we worry that we are asking too much of Phoebe's little body. That it will get to be too much. Thankfully, all looks relatively normal and this drug continues to be gentle and easy. Remembering that Phoebe is constantly connected to a pump is often our biggest challenge. Phoebe helps us with that by continuing to carry her backpack around everywhere she goes. She has now carried it for 8 days and has not asked for help once. 

Go Phoebe go. 

In other news, the Childhood Cancer Awareness Event is going to be great and you should really go. Help us shout it from the roof tops that kids get cancer too. They need our help. See the poster below for details and follow us on Facebook at www.facebook.com/gogoldcanada or on twitter @goldonthehill for updates. 


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