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.

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.