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.

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. 









Wednesday, May 27, 2015

Progress

We are still here. Phoebe has had some very good days. Great days in fact. She has started walking, riding her bike, and playing with Mae. The way they interact reminds me of how they played before all of this happened - before the stroke and the seizures, the fungal infections and brain lesions. It is a beautiful sight. Phoebe will say; "Mae, will you play with me?" and Mae's face will light up with a big "yes!". And then they will get right to it. I think Mae needs this as much as Phoebe and it does my heart good to see them together and happy. 

Yesterday, Phoebe had a CT scan of her lungs and thankfully things look good. The fungal lesions that we have been watching since October are smaller and overall, her lungs look better. We are making progress. 

This progress is a result of a lot of time spent at the hospital and endless dedication by staff throughout St.Jude. Phoebe is a busy girl and we are so thankful for the army of people who take care of her. Sometimes it seems that every department of the hospital plays a role in helping Phoebe get well. From oncology to transplant, the blood donor centre, the blood bank, pathology, radiology, child life, infectious disease, wound care, occupational therapy, quality of life, music therapy, psychology, nutrition, neurology, nursing, and the food services staff who have gone grocery shopping so Phoebe has her favourites when we are in patient - this hospital is a beautiful place and we are so grateful for the care Phoebe receives and the people who care for her and about her while also looking after sweet Mae and our whole family. 

We are at the hospital every day, sometimes two or three times a day if the day includes labs and doctors visits in addition to the daily two hour infusion of anti-fungal medicine. This medicine can cause a drop in potassium, so each morning we arrive to check Phoebe's potassium and then return hours later for the medicine. We try to time this around meal times and quality time so that it doesn't feel like we are always at the hospital. The days that include infusions of granulocytes are especially busy and include an overnight stay at the hospital. The granulocytes need to be given 12 hours after the antifungal medicine, so on these days, Jon brings Phoebe in to the medicine room at 4 am and I arrive at the hospital at 8:30am to donate granulocytes. The donation process takes about two and a half hours and the granulocytes are started once we are admitted to the in patient unit in the early evening. It's busy. Right now we are giving granulocytes once a week on Fridays and I'm hoping that I can continue to donate these cells to Phoebe although my hemoglobin has been slowly and steadily dropping. Phoebe is still neutropenic and she needs granulocytes to fight the infection, so in case I am unable to give, the hospital is testing a few family members to see if they are an HLA match to Phoebe, so they may be able to give too. Another reason St.Jude is great.

The plan for now is to continue with the granulocytes and the anti-fungal medicines that Phoebe is receiving and hope and pray that this progress continues and brings Phoebe to a point where curative leukemia therapy is possible. Next week brings an MRI of Phoebe's brain and a bone marrow aspirate. Phoebe is still neutropenic, but she is needing fewer transfusions and has some signs of count recovery, so we are anxious to see what is going on in her bone marrow. We need good news of healthy recovering cells and no leukemia as to effectively fight this fungal infection and heal long term, Phoebe needs her own immune system to recover. 

Phoebe has already greatly surpassed expectations and overcome so many odds - so much so that her doctors have started to refer to her as a miracle. If the shoe fits ... 

Go Phoebe go ... 

"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." Albert Einstein 





Tuesday, May 12, 2015

The makings of a miracle ...

We are back at the Target House, returning to St.Jude daily for labs and an antifungal medicine that can only be given in the hospital. We are busy - caring for Phoebe is a full-time job, but we get to sleep in our own beds at night. It's the little things. 

Against all odds, Phoebe has been doing well. She is getting stronger, and although she has a long way to go, things are improving. She is still weak, but she surprised us by riding her bike the first day we were home, and today she walked for the first time in three weeks. The fungal lesions are very slowly healing. It is a painful and slow process but we are starting to see some improvements.

Phoebe's bone marrow results show a very low level of disease (less than 1%) and an improved chimerism. I like to think the leukemia is "stable" and we are relieved that the clinical trial was successful. There are some signs of count recovery - Phoebe is maintaining a very low ANC and needing fewer platelet and blood transfusions. She will receive another unit of my granulocytes on Friday and after that ... decisions and plans are made one day at a time. 

We are hanging on, grateful for progress and hopeful for continued miracles. 

And now from Phoebe's Daddy who can tell it like it is far better than I can ... 

"I couldn't hold back the tears today. 3 weeks ago Phoebe was diagnosed with a very serious systemic fungal infection. Fusarium fungemia. If you google it you'll find that in someone like Phoebe who has no immune system there is a 100% death rate. The first thing the doctors did was to call in the quality of life team to ask us our expectations of the hospital when Phoebe's life was to come to an end. Instead, we fought for treatment using Jenny's white cells and 4 anti fungal antibiotics to build a bridge so Phoebe could gain some time for her own immune system to have a chance to return as we get further out from the last experimental trial which she responded well to. We fought for life. Today I cried. I cried because the bridge we built is holding. Phoebe's blood work today shows her immune system is in recovery and with it we will defeat this horrendous fungus. I absolutely love how Phoebe continues to put doctors on the side of hope. I believe".





Sunday, May 10, 2015

Go Phoebe go

Phoebe is out of the ICU. It was a short stay - just twelve hours until we were back on the regular floor. In typical Phoebe style, she had a room full of very worried doctors, but she appeared to improve without any intervention as soon as we entered the ICU. In fact, as we wheeled her in her bed through the halls towards the ICU she perked up and pointed out the murals and pictures on the walls. It was and is very serious, but in that moment, it seemed that Phoebe just wanted to take a ride outside of her little room. 

We are now back on the regular ward and things are slowly improving. We are cautiously optimistic. Terrified but always hopeful. Phoebe is fighting and so we are too. 

Here is what we know ...

What we once called a rash is fungal
lesions that cover Phoebe's face, legs and arms. Most have turned black and are angry and painful. It is as awful as it sounds, but they are not as painful as they once were and there are no new lesions which is a good sign. They do have a lot of healing to do and they make Phoebe sad. When we ask her if she is feeling better, she says "no, because these spots are just not going away". 

The granulocytes are helping to temporarily boost Phoebe's immune system which together with the many medicines she receives is helping to clear the infection, but she still has very few signs of count recovery. We need count recovery and in the absence of this, Phoebe will probably continue to receive granulocytes. The plan is very much one day at a time. 

The infection/inflammation marker in Phoebe's blood is coming down and took another big jump in the right direction today. 

The CT scan of Phoebe's lungs shows the same small lesions from the previous infection and some other "gunk". The granulocytes were given right before the scan so things may look worse as they cause inflammation. 

We finally have negative blood cultures. 

Phoebe is still needing blow by oxygen, mostly just when she's sleeping and her breathing has improved. 

Today, our infectious disease doctor told Phoebe that she was their "most improved patient". Go Phoebe go. 

Today, Phoebe colored a picture and wrote her name for the first time in weeks. 

We love her so much. 

We are following Phoebe's lead and hopeful that she will be able to leave the hospital soon. We are still isolated, so when Phoebe is in patient she spends every day in a little room. It's hard and she usually shuts down and refuses to leave her bed. She is depressed and some time outside of these walls would do a world of good.

Mae is busy making friends and dates to colour with many of the nurses. She is surrounded by love, support and friendship and for that I am so grateful. Phoebe's nurses are beautiful kind souls who recognize her for the unique little person that she is and care for her with incredible patience and understanding while always making time for Mae. 

Thank-you all for continuing to think of Phoebe and our family. Your words and kindness help us through.