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.

Monday, September 15, 2014

Day 4

I have been struggling with what to write and I have started and stopped this blog post so many times.   I am exhausted and worried and cancer is wearing me down. It is also wearing Phoebe down which is so very difficult to see. 

Phoebe is tired and not herself. She is sleeping more and eating less. She is sad and depressed, thanks to the steroids, and it is so hard to watch her struggle. She slept and rested most of today and when she was up she wanted to be walked around in the stroller or wagon. The little girl that spends most of her days running around, did not walk a single step today.

We have been able to avoid any aggressive treatment for quite some time that being here and watching Phoebe fight this terrible disease again is so hard. Phoebe bounced back and was in remission so quickly after her second relapse, it was like it never happened. The treatment was so gentle during our year of maintenance that we were able to live a "normal" life, but this is not like that at all. This treatment is hard on Phoebe and we are only on day 4 of 36. 

We made it to Memphis on Thursday and Phoebe started treatment on Friday. Since we have been here, Phoebe has had a bone marrow aspiration, lumbar puncture, and MRI - all checking for disease. Thankfully, there is no disease in Phoebe's spinal fluid and no sign of a mass on the MRI - this is good news, but there is still a lot of disease in Phoebe's bone marrow. 

The disease in the bone marrow is about 78% and it seems that we are now dealing with both ALL and AML - Phoebe's doctor explained that it is not uncommon for MLL + leukemia to switch type or have characteristics of both types of leukemia and Phoebe has had some suspicious AML cells in the past. The chemo Phoebe is receiving targets both ALL and AML so being here and on this treatment is what Phoebe needs, but it is still terrifying. 

When Phoebe was diagnosed in 2010 and we watched her fight through months of treatment and then transplant, I thought we had seen the worst. I couldn't imagine feeling anymore pain, worry or heartache, but then Phoebe relapsed and the worry and fear that we felt before the relapse was nothing in comparison to hearing we had no options and should take Phoebe home. We found options and hope and what we felt most was relief. We would get another chance. We watched Phoebe suffer and fight through a second transplant, stays in the ICU, infections, nausea, and incredible pain and it was so difficult but it gave Phoebe a chance at life. We believed and hoped that she would be cured and her doctors did too. Everything looked perfect. Phoebe was healthy. We were beginning to heal as a family and we had a year without cancer. 

With the second relapse, we worried that we would lose Phoebe. Whatever fear and worry we felt before was nothing. We watched as the mass in Phoebe's belly grew before our eyes and we were helpless. Completely helpless. Phoebe pulled through and we once again began to believe in our miracle. That anything is possible. We began to hope for a future without cancer. Phoebe was growing and thriving and we started to dream about her starting school with her big sister. We had 16 beautiful months without cancer and we enjoyed every one. 

Then Phoebe relapsed for a third time. There are no words to describe the fear and the worry that we feel each day. It is unlike anything we have felt before. The conversations we have with doctors now mainly focus on giving us more time instead of the cure that we are so desperate for. There is hope and no one is giving up, but this is so very hard. We hope and pray that this is the answer for Phoebe. We continue to believe in our miracle. We just love her so much. 

Tuesday, September 9, 2014

The hospital of hope

We have the final bone marrow results and it seems that there is still about 60% disease in Phoebe's bone marrow. After considering many things and doing a lot of talking and listening, we have decided not to continue another cycle of the trial and instead move on to something else. 

In the patients who have responded to the treatment, the researchers have seen maturation of the leukemia cells, it seems that the cells mature and then stop producing, but in Phoebe's case, they unfortunately see much of the same immature MLL+ leukemia cells. We had a lot of hope resting in this treatment, we fought hard to be able to receive it, and I wouldn't change a thing. It is promising, we gave it a chance, and it wasn't meant to be. It is still a drug that is being developed and researched with the goal of improving survival rates for this awful leukemia and I am grateful it exists. It isn't the answer for us, but I hope it can still be an answer. Despite this, what remains an incredibly unfortunate and sad reality for us at almost every turn in this journey is that the research is not moving fast enough for Phoebe. It is keeping us afloat, and we will take this and are so grateful to be able to tuck Phoebe into bed each night, but we need a cure. 

We are moving on and moving forward and doing what we can to put one foot in front of the other. We are sad that this was not what we had hoped for and we are tired, but we still have options and we still have hope. I often think of the words of one wise and brave mom when we come to points like this. She said, "if we still had options, we would still be fighting". And so, on we will travel.

We are leaving for St.Jude on Thursday. The hospital of hope. There is a trial there that has seen success in MLL + leukemia patients with a doctor whose focus is MLL + leukemia and we can start right away. These drugs and this trial are not available in Canada and will not be available anytime soon, or possibly ever. There is another promising immunotherapy trial that has been suggested which is also not available in Canada ... and I can assure you that we are not the only Canadian family looking for options like these. We are so thankful for St.Jude and to have been able to receive treatment in Denver, but we need these treatments in Canada. 

Despite all of this excitement, after a blood transfusion today (thank-you blood donors), Phoebe seems as good as new. Her blood work without the transfusions is not the greatest, but we hope that things remain under control until we can start something new. Mae and Phoebe are both happy to be going back to St.Jude and in many ways it is like home - a home we hoped we would never need but are so grateful it is there. 

Tomorrow we are at the hospital to disconnect the last of the study drug and to say good bye to the backpack that has been like an extra limb for the past 28 days, and then we will hurry to make plans to get out of town. 

Monday, September 8, 2014

We will know more tomorrow ...

Over the past two weeks, Phoebe's blood counts have been slowly dropping. Not consistently, some days they are up and some days they are down, but they have been down more than up and it is definitely a cause for concern, and worry, and stress. Today we arrived at the hospital certain we would see some recovery - Phoebe spent the weekend running and playing. We noticed that she started to carry her backpack on her back again, instead of dragging it behind her as she has been lately. She wanted to swing at the park - we took this as a sign that she wasn't feeling dizzy due to low hemoglobin. We watched her run fast after Mae, her backpack on, her little legs looking like they might let her take off in flight. We listened to her sweet laugh and we soaked it all in, certain that we would see a rise in her blood work. 

This morning, Phoebe's hemoglobin and platelets were at an all time low. She received a platelet transfusion and will most likely get blood tomorrow. Phoebe hasn't needed a blood or platelet transfusion in over two years. These results are very difficult to take. 

Phoebe also had a long awaited bone marrow aspiration today. We have now been on this study drug for one full 28 day cycle. When we began the study, Phoebe had about 60% disease in her bone marrow. We don't have enough results to have a definite answer, but when the doctors were able to "glimpse" Phoebe's bone marrow under the microscope at the end of the day, they saw blasts. Blasts can mean leukemia but in a perfect world they can also mean recovering cells. Today, they saw about 60% blasts in Phoebe's bone marrow. I am hopeful and I am an optimist, but the chance that all of those are recovering cells, I would think, is extremely unlikely. Not impossible, but unlikely. 

We will know more tomorrow. 

Right now we know very little. We know that despite what Phoebe looks like on paper, she is still feisty and full of energy and spunk. We know that Phoebe has been on this experimental drug for a month and that while this drug may not have moved us further ahead in our search for a cure, it has not moved us any farther behind. It has given us time and without it I am certain that we would be seeing much more than 60% blasts. If we do in fact have 60% leukemic blasts, well, we have no more than what we started with and the time we have spent in Denver although it has been incredibly stressful, has also brought us joy and beauty and peace. 

We have climbed to the top of mountains to see views that have literally taken our breath away, we have walked through red rocks to see ancient fossils of dinosaur footprints, we have gone for long walks in search of bunnies and new parks, we have seen things we would never have seen at home and we have made the most of our time here. 

We will know more tomorrow.

Thank-you, to all of you, for continuing on this journey with us, please keep our sweet and feisty Phoebe in your prayers. 

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.