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 28, 2015

It's almost Childhood Cancer Awareness Month and I am exhausted. Everyday is childhood cancer awareness day for my family and this unfortunate truth is catching up to me. There is no walking away, or taking a break - in fact childhood cancer is often all we think about because it is all around us. Everyday, all day, and it needs to stop. 

This week we learned that the transplant trial that we have been waiting to reopen since February is now permanently closed. It was under review by the FDA and after 6 months, they decided to close it completely. Phoebe is not ready for a transplant right now, but this was our only option. It was our chance. Phoebe can't receive a standard transplant because it wouldn't work and it would be too hard on her, but this transplant promised to be more gentle, innovative, and because Phoebe now has both AML and ALL leukemia, her only curative option. Phoebe's transplant doctor is writing a new trial but it could take up to a year ... that is a long time for a little person like Phoebe to wait. We believe she will get there, but as more and more obstacles are put in front of us, we are beginning to feel alone in this. 

We are determined to put one foot in front of the other and move forward. Our plan was to start the gemtuzumab on Monday, but that has now been moved to Tuesday because Phoebe has developed a few new spots on her skin. We thought one was a mosquito bite, but nothing is so simple when your child has cancer and no immune system, and now there are more and they look too much like the fungal infection we need to never return. Phoebe received granulocytes on Friday and because the gemtuzumab can target these cells too, it has been moved to Tuesday to maximize the potential of the granulocytes. 

Most days I can't decide what scares me more - fungus or leukemia. To properly treat and cure the fungal infection and heal long term, Phoebe needs an immune system and right now, the leukemia has crowded out all of her healthy cells, making her immune system non-existant. Chemotherapy - the only option we have at treating the leukemia right now, damages the immune system even further, killing leukemia along with any healthy cells. We can't aggressively treat leukemia when there are infections. It is a terrifying place to be in and I wish there were another way. 

We are hopeful that gemtuzomab will help to rid Phoebe's body of the AML leukemia, giving her healthy donor cells a chance to recover, but we don't have much of a plan beyond this. We have some ideas and always hope, but no real plan. 

Right now, the next step is to do a skin biopsy of these new spots on Tuesday. We need good news and Phoebe deserves a break. No one should have to fight so hard but this is life for a child with cancer. 

We hear often of how Phoebe is so strong and brave, and she is, but she is also just five years old. She has no option or choice but to be brave and every day she confronts things that would cause most adults to completely break down. She deserves better than this and I often dream of a life without tubes and central lines - a life with school buses, soccer practice, swimming lessons, and packed lunches. A simple life with our family complete and without cancer. 

Phoebe, and every child with cancer, deserves more than 3% of federal research funding. They deserve more than toxic outdated chemotherapies, more than pennies from a billion dollar health care budget. 

This September, please remember that kids get cancer too. Despite statistics that boast 80% survival rates, this is not a problem solved. It is not even close. Phoebe will soon be included in this statistic, and although she has technically survived five years, she is nowhere near cured. 

If you are in Ottawa, please join us on Parliament Hill September 13th and help us raise childhood cancer awareness. Together we can work to change this story by sending a message to the Canadian government that we need to do better. And what better place to do this than where change happens. 

Mae, who is so strong and brave just like Phoebe, will often burst into tears and tell us she "dreams of Ottawa". She is desperate to visit home and I was hoping to be able to take her to the event, but because Cancer runs our lives, I just don't know if we can. If we don't make it home, this will be the second time we are canceling a trip home with Mae. It is the second year in a row that we are not able to attend the event because we are in the US pursuing treatment for Phoebe. We have now been away from home for over a year and Phoebe has spent more time in US hospitals than she has at home. 

We are not alone in this and we need to do better.

Please speak up and stand up for children fighting cancer this September - and all year. Donate blood. Register to be a bone marrow donor. Donate to a childhood cancer specific charity. Tell the stories of children whose lives are forever changed by a cancer diagnosis. Tell the stories of their siblings. Wear gold. Ask your federal candidate how they will help and invite them to do these things too.










Friday, August 21, 2015

The tiny boss lady ...

Phoebe has been out of the hospital since her birthday. We did wake up in the hospital on her big day, but thankfully got out soon after to enjoy a very small celebration at home. Phoebe's only birthday requests were a "wiggle cake" - (she calls minions, wiggles) and a ride on the horse and carriage through downtown Memphis.

Phoebe loved every minute of the horse and carriage ride and Jon and I pulled together the cake at the last minute. It looked nothing like the shiny picture we followed on the internet, but Phoebe loved it. Or she loved looking at it and blowing out the candles. She would rather eat sushi and salty things. 

Shortly after the big birthday, Phoebe had a repeat bone marrow aspiration to check on the level of leukemia, but also to see if she qualifies for a drug that targets a specific protein often found on leukemia cells. The good news is that Phoebe can receive this drug. It will target the Myleoid leukemia that she has and because these cells now make up all but 7% of Phoebe's leukemia, we are hopeful that it could actually work. The bad news is that Phoebe's bone marrow is still very full of leukemia. How it is contained here and not affecting her life, is a mystery, but one we are very thankful for. 

This new (to Phoebe) drug, called gemtuzomab, is no longer on the market, so our doctor had to request it directly from the drug company and then have it approved by the hospital's review board. She is hopeful that Phoebe can receive it on Friday and we are so thankful for the team of people who take part in Phoebe's care. 

Phoebe's latest bone marrow chimerism shows that just 9% of her cells are donor cells and the remaining 91% are leukemia. This is slightly higher than on the last test. The leukemia is now predominantly AML, with some ALL still present. Phoebe's blood and spinal fluid remain clear of leukemia and although the bone marrow results are terrible and devastating, Phoebe is not a sick little girl. She is eating, playing, laughing, singing and telling us exactly how she feels. She is often the last person to go to sleep and the first to wake up in the morning and she brings the joy and spunk to our days. She has earned the title of "tiny boss lady" because as joyful as she is, she is also very bossy and determined. At least once a day, I hear Mae tell Phoebe - "you are not the boss of me". Phoebe has so little control over her days that she tries her best to control what she can, including Mae ... and Jon and I too. 

We are tired and weary, but hopeful. Phoebe has come so far and every day she proves that anything is possible. I was speaking to one of Phoebe's doctors about the fungal infection recently and I commented that it is hard to know how Phoebe's skin, that was once black with fungal lesions, will look when completely healed because I just can't find any information or images - to this she said, well that is because Phoebe is one of the only survivors. This. It is truly amazing how well Phoebe is doing considering all that has happened and so, we keep on. The bravest tiny boss, two exhausted parents, and the glue that is Mae that holds us up and keeps us all together.

We believe. 

Go Phoebe go ...









Thursday, August 6, 2015

Happy Birthday Phoebe


We are back in the hospital. Phoebe spiked a fever last night and because she has no immune system and nothing to fight off an infection, she was admitted to the hospital and started on IV antibiotics. 

This morning she still has a low grade fever and the infection marker in her blood is very high. Blood cultures have since come back positive with a gram
positive bacteria in both lumens of her central line, so antibiotics have been adjusted and we are planning to give more granulocytes tomorrow. 

We are worried, scared, anxious, upset ... we have been here too many times before and Phoebe has been through too much. To add to the heartache, Phoebe makes sure to tell every nurse, doctor, nurse practitioner and anyone else that enters her room that she wants to go home and that it's her birthday in two days.

On Saturday, Phoebe will turn five amazing and miraculous years old. Many times throughout her fourth year, we worried that Phoebe would not see her fifth birthday. We had too many impossible discussions with doctors this year - talks that no parent should have to have, yet here we are. Phoebe fought every single day that she was four. She fought and struggled more than anyone should have to, just to be five. 

When I look back on the past year, I am overwhelmed with all that has happened. It's almost hard to believe that one little person should have to go through so much just to have a chance at life. 

Phoebe turned four in Denver when we started a clinical trial that was supposed to be the answer - a drug actually targeted to her leukemia. The first of its kind and what we had been waiting for. It failed to help and her leukemia actually increased while she received it, so we stopped and booked a flight to Memphis. 

We have been in Memphis and at St.Jude ever since and during our time here, during Phoebe's fourth year, she has spent over 100 days in the hospital, she has suffered two strokes initially leaving her speech slurred and her left arm and hand limp, she has had seizures, blood infections, remission and relapse of her leukemia, and fungal infections in her brain, lungs, skin, and blood. Phoebe's skin is still marked with spots that were once black with fungus. This most recent fungal infection came with a devastating prognosis, but Phoebe  exceeded all expectations. That she is here is a blessing and a miracle. 

Following these infections, Phoebe fought her way to recovery. Every day through fevers, nausea, weakness, and pain, she fought. She had to learn to walk again, to use her left arm and hand, and to speak - she fought her body just to be able do all of this and also just to be here. She fought to turn five.

I used to avoid using the word fight to describe Phoebe's journey but right now, it is the only word that fits. More than a journey (which is also the wrong word) it has been a fight and a struggle every single day and with every single aspect of this. 

But Phoebe is here and she will turn five on Saturday and despite all of these struggles, she is amazing. She is feisty and opinionated and strong. She is gentle and kind and full of joy. Her laugh will instantly make you laugh and her smile lights up a room. She loves her big sister with everything she has and is excited to join her at "homeschool" in September. She is so smart. She loves music and dancing and sings along even when she doesn't know the words. Weezer is still her favourite, but lately she only wants to listen to and sing "Fix You" by ColdPlay. 

She has come so far. She is a warrior and a fighter, but she is also just a little girl who shouldn't have to fight. Phoebe would like nothing more than to ride her bike, swim and play without worry of infection, she would love to go to school and just be 5. No child or person should have to endure so much. 

We are so grateful for the care that Phoebe receives, for the nurses who have become her friends and the doctors who work so hard to fix this, but we need to do more. We need to support them in their efforts. We need more funding, more research, more attention, more cures, and less heart ache. 

Nine weeks after she turns five, Phoebe will be five years post diagnosis. She will be among the 80% of children who have "survived" 5 years but for Phoebe, this survival includes relapse, infection, trauma, and it is completely absent of a cure. There is no cure for Phoebe right now, only hopes and dreams and chances. We are grateful because we have Phoebe, but please - the next time you hear this statistic, think of Phoebe,  and know that we are not alone in this. 

Please keep Phoebe in your thoughts and prayers. Please pray for healing, a birthday at home and a five year old Phoebe who doesn't have to fight so hard to be six. 

A few pictures from our year ... 

Phoebe turning 4 










An early birthday cake for the soon to be 5 year old. 


Saturday, July 25, 2015


Phoebe has been busy. Last week, she had a repeat bone marrow aspiration, lumbar puncture and CT scan. The results came in one by one ... her spinal fluid is clear of leukemia, her lungs are much improved ... her bone marrow is still overwhelmed with disease. There is less leukemia in the bone marrow than on the last test, so we are making progress, but it's still very much there.

This is after four weeks with a very low dose chemo that is not expected to cure - we are not sure if we should feel happy that it has not raged out of control or disappointed that it is still there. I feel both and more - happy and relieved that for whatever reason, this terribly aggressive disease is "controlled" and isolated to Phoebe's bone marrow, but so disappointed that it is still there, and terrified by what all of this means. 

We have tried so many things and right now there is no answer, no drug and no treatment that can fix this. Actually, there truly has never been an answer, a drug or a treatment to fix this. We will keep trying, as long as Phoebe is well, and we believe that one day, we will find what we have been looking for, we have to, but we can't help but wish there were more. More answers, more research, more options, more attention paid to cancers that affect children. 

Right now, Phoebe wakes up each morning smiling (or yelling at us for breakfast), so we are okay. I just can't think about what all of this disease means, so I focus on the good things.

Phoebe is now eating on her own - she has been without her feeding tube for 2 weeks and although she hasn't gained any weight, she hasn't lost any either. 

The fungal infection continues to improve. Phoebe's skin is still marked where the lesions were once black and awful, but compared to 3 months ago, the progress is amazing. 

Phoebe continues to blaze her own trail and in less than two weeks she will turn five years old. Five amazing and miraculous years old. 

We are all together - or we will be again soon. Jon has been home for the past two weeks and returns to Memphis tomorrow. We have been away from Ottawa and our little house for a year and life outside of cancer and Memphis needed some attention. We can't wait to see him and I am so thankful to be able to travel this road together. 

We are not sure of what happens next and right now, we are just thankful that Phoebe is "well" despite the many reasons she has not to be. Our doctor is looking into a few things that we haven't tried yet, and we are hopeful she will find something that will help.  It just takes one. 

Please keep Phoebe in your thoughts and prayers. 

We believe. 

This photo is of Mae and Phoebe walking the famous Memphis Peabody Ducks up to their rooftop home in honor and memory of Matthew Robert Pierce. Matthew's sisters were honorary duck masters and they invited Mae and Phoebe to join them. It was a beautiful afternoon spent with amazing people in honor of a little boy who has changed and touched many lives. We miss you Matthew.


This photo is a save the date postcard for the childhood cancer awareness event on Parliament Hill. There is strength in numbers. Please pass it on ... 








Monday, July 6, 2015



We are still here ... 

It has been a while since I have written - there is so much to say and also so little; if that makes sense. Phoebe has been doing well - she is energetic, joyful, happy, and so feisty. She is getting stronger, gaining weight and doctors are once again cautiously optimistic. We are hopeful. Always hopeful. Phoebe has exceeded all expectations. That she is here is a miracle. 

There is not a lot to update. We are on the same path of weekly granulocytes, very low dose chemo, and antifungals. Phoebe still needs blood and platelet transfusions (thank-you blood donors), but sometimes they seem not as frequent. We aren't making any changes and right now, there are no plans for any immediate next steps. We are rechecking Phoebe's bone marrow and lungs on the 16th and hopeful for progress. 

Behind all of this good news with few updates is leukemia, fungus, and fear. We are living with leukemia. It is amazing to me how Phoebe can thrive in the face of this cancer, how there can be something so terrible and dangerous inside of her, yet she tolerates it. She lives with it. More than that, every day that she gets up and plays her heart out, she defeats it. 

For us, despite how "well" Phoebe seems, the fact that she has a thought to be incurable cancer on top of an often deadly fungal infection - it is all we think about. We look for symptoms, we worry, we wonder. At times it is overwhelming. There is so much to write and also so little. 

Phoebe leads the way. She really does. When she is up, we are too. When she is down, we are broken. Right now she is well and up and feisty and we are all happy. Mae especially - her joy is a beautiful thing. We are following advice of brave friends and seizing the day ... or we are trying to. We are cautiously seizing the day, avoiding crowds and germs with a mask on Phoebe. It is the best we can do. When not at the hospital, we try to explore. We have visited Nashville and Little Rock and even escaped to the Gulf Shores - which is amazingly close to Memphis. Mae swam in the ocean, we saw dolphins, Phoebe started a shell collection and we all felt the sand in between our toes. We tried to just be despite the weight of cancer. We imagined a day when Phoebe can splash in the ocean. We breathed in and out and we celebrated hope. Anything is possible. 

Go Phoebe go. 

In other news, a date is set for the 3rd annual Childhood Cancer Awareness Event. It will be on the 13th of September, at 6pm, in front of the Peace Tower. If you are in Ottawa, please consider attending and helping us shine a light on this devastating disease and the need for more research and better treatments and cures. Cancer is the leading cause of disease related death for Canadian kids and this is not okay. For more information and updates please visit www.facebook.com/gogoldcanada or follow us on Twitter @goldonthehill

There is strength in numbers, please share! 







Wednesday, June 17, 2015



Phoebe's bone marrow results are the same. The level of disease is very high, filling up most of the space in her bone marrow. Her chimerism is now just 7% donor cells, but miraculously, there are no signs of leukemia in her blood, so I guess although things are bad, they are not any worse. 

It is still just hard to believe. It is hard to believe that Phoebe is so sick and that we have tried every medicine available to treat leukemia and yet this relentless monster just won't stop. We have been running, desperate for anything that offered hope, for almost five years - and now here we are at a bit of a standstill because, right now, there is nothing left to try. 

We are taking things one day at a time and apart from the addition of one new/old drug that will hopefully help reduce the leukemia burden, we are not making any changes. We are continuing to treat the fungal infection with my weekly granulocyte infusions (Phoebe is not making her own cells) and we are doing what we can to keep the leukemia from raging out of control. So far, it appears to be isolated to Phoebe's bone marrow and we hope to never see it spill to her blood. Even if we wanted to, we are not able to give Phoebe intense chemo due to the infection and the fact that her little body needs rest. It would make her sick and so this break is a blessing in disguise as these weeks and now months without intense chemo have allowed Phoebe to heal and thrive. We will recheck the bone marrow in two weeks and although we are always hopeful - Phoebe and Mae help us believe that anything is possible - we are also terribly worried and broken. We are desperate for some good news. 

Phoebe, on the other hand, is "fine". She doesn't know that she is so sick and if you ask her, she will say that her spots are healing, that she can jump high and ride her bike, that she can do everything without any help, and that when her hair grows back (she currently has a beautiful dusting of blond fuzz) she wants a braid just like Mae. She often sings at the very top of her voice to her favourite songs even if she doesn't know the words, and she is a joy. She really has come so far. 

We try to shelter Phoebe and Mae from the stress and worry that we feel each day, but they are both incredibly smart and they often surprise us with their insight and maturity. Mae is very sensitive and kind and she knows and has seen too much. She shares our worries - having a sister with cancer is a weight that no 6 year old should ever have to bear and I wish I could somehow protect her from all of this. In many ways, it is Phoebe who protects her as she asks her to play, makes her laugh, and some of the worries melt away. Phoebe regularly "helps" the nurses with her central line care and blood work - making sure to tell them how she likes things just so. Today she noticed that her nose was bleeding and immediately said - "it looks like I'll need platelets today". Some four year olds are learning letters and numbers, Phoebe knows this and has moved on to the blood system. 

We are holding on to hope and we are grateful for the many, many good days that we have. The light that Mae and Phoebe bring to our days is a beautiful thing and it truly keeps us afloat. 


We are also grateful for the support and love that we continue to receive from Ottawa. A big and special thank-you to John Gomes and those involved in the Fifty-seven Ride - they are riding their bikes from Ottawa to Toronto, raising awareness for childhood cancers all in honour and support of Phoebe. We are amazed, thankful and blessed. 

There is a fundraising BBQ and kick off party with live music, games, and prizes  this Sunday from 10am to 2pm at Stanley Park in New Edinburgh. All proceeds go to the 57 Ride for Phoebe Rose. For more information about this and the 57Ride, please visit : www.57ride.ca 


Thursday, June 4, 2015

Results

Phoebe appears to be feeling great. Her doctors and nurses comment on how far she has come, how happy she is, how great she looks. She is gaining weight, eating more by mouth, the fungal lesions are still improving, she has more energy, and each day seems to bring progress. 

I wish so much that Phoebe's test results matched her beautiful and healthy spirit, but they don't. 

Phoebe's bone marrow results are confusing. The MRD test found just 4% leukemia cells. This is more than the .08% from three weeks ago, but still low and manageable. We heard this result first and thought - we can handle 4% - we are still okay. Results of the chimerism test came next and reported 90% Phoebe cells and just 10% donor cells. All of Phoebe's cells express the MLL gene and are cancerous, so this is not good, but it is also hard to be believe considering the other result and Phoebe. These results just don't match Phoebe and I keep expecting someone to call and tell us that they made a mistake. On Friday, when Phoebe's doctor called with the chimerism results she expressed concern that the leukemia would soon break into Phoebe's blood stream - making things harder to control. There are no signs of this, rather Phoebe's labs today show low but stable counts and even some improvement. Phoebe herself appears to be "well" and asymptomatic, but we still worry. We worry all the time and now we worry even more. 

We are dealing with two very aggressive and life threatening diseases. The fungal infection and refractory infant leukemia - both have very limited, if any, effective treatment options and both take far more than are cured. Phoebe is here because she has overcome incredible odds. For the fungal infection, we are continuing with the weekly granulocytes and antifungal drugs and hoping that this is enough. Phoebe needs her own cells to recover but if she really does have only 10% donor cells, I don't know if this is possible. As for leukemia - we have tried almost everything we can try. There is one drug that Phoebe hasn't received and it is low dose and well tolerated, so we are going for it. It is used in the maintenance cycle of leukemia treatment and we are hoping that it can calm the storm and keep things under control. The transplant trial is still on hold and not an option right now, but we will never give up hope that one day, we will get there. 

We will continue to support Phoebe's healing with a good and healthy diet and all the love and hope in the world and we believe that this makes a difference, but the key to all of this is Phoebe. Phoebe is here and more than this, she appears to be thriving in the face of leukemia and this terrible infection. This is what keeps us from completely breaking down and gives us the strength we need to face this day after day. 

We are rechecking Phoebe's bone marrow in a week and a half and hopefully these results will bring clarity and good news. In the meantime, we will continue to take each day as it comes, always hopeful and grateful that the good days far outnumber the bad. 

Go Phoebe go.