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.

Monday, April 30, 2012

All our bags are packed ...

We are packing and preparing for our long awaited trip home. It is hard to believe that we have spent seven months in Memphis, but looking back on all that has happened it is seems like a lifetime.

Over the past seven months we have done and seen many things. We have grown and learned. Mae has mastered the peddles on a bike, and Phoebe has learned to walk. Both have learned new words, Mae's are in French and Spanish and Phoebe's are varied and many. We have met many wonderful, courageous and inspiring children and their families. People we will remember and hold close in our hearts for many, many years to come. We have seen and experienced kindness and generosity in abundance. We have mourned the loss of too many children. Watched Phoebe fight to survive in the ICU one day and play joyfully the next. We have heard the most incredible news and we have experienced so much joy. We have met many very wonderful, determined and simply incredible doctors and nurses. We have been listened to and heard. And we have seen an incredible and unforgettable hospital at work.

While at St. Jude, Phoebe has been cared for in every way possible. She has been celebrated and admired and treated for more than the cancer that took up valuable space in her body. Walking through the hospital today and visiting the many people who have shaped this portion of our journey, I was overwhelmed. The physical therapists who worked with Phoebe - helping her learn to walk, stand independently, bounce, and climb. A baby who refused to stand or use her feet seven months ago. The speech and occupational therapists who despite Phoebe's stubborn refusal to cooperate, worked to help her to eat, drink, and form her first words. The nutritionist who worked with us, listened to and cared about Phoebe's needs and was patient when little weight was gained. The ICU nurses who carefully brought our baby back to health. The doctors who cared for Phoebe like she was their own and listened to each of our concerns. Everyone we have met on this journey have treated Phoebe with so with love, compassion and patience. St. Jude is truly a wonderful and very special place.

Today, the words from Phoebe's two doctors summed up our journey thus far, or at least as much a summary as could be possible. One commented on how far Phoebe has come, telling me that "she is my little miracle" and another in response to my thanking everything they have done said "well we are not done yet". No, we are not done and Phoebe will probably be followed and monitored by St. Jude for most,if not all of her childhood, but we have come so far and have accomplished so much. This step towards home is a huge and wonderful step. It is a step towards some kind of normal, and we believe with all of our hearts that we will continue to take many more big and positive steps away from cancer.

Tomorrow we are heading home on day +152 - we have now officially lapped Phoebe's first transplant as she relapsed on day 76. We have come full circle, but instead of celebrating one year post transplant in a few weeks we are celebratng a home coming and a real and wonderful second chance at a cure. Thank you St.Jude for believing in the possibility of a cure for Phoebe and so many other children.

Friday, April 27, 2012

A lovely and unexpected change in plans.

Because it is non stop action around here, we have a surprising change of plans. We are leaving on Tuesday the first on May. Heading home one wonderful week earlier than expected. Mae is beyond happy and she can't wait to get home to see her daddy and her house.

This time last year we were packing things up and heading to Toronto for Phoebe's first transplant. It is unfortunate that we are not celebrating a happy year post transplant but I am happy and I have a wonderful feeling about all that the future holds for Phoebe.

In other Phoebe news, the doctors have decided to stop her tacrolimus, the immuno suppression drug that she was taking to treat her GVHD. They explained that although Phoebe is doing very well and there has been no sign of any bad cells, her Leukemia has proven to be very aggressive and they want to give her every opportunity to fight it. Ending the immuno suppression will allow her new cells to really mature and work their magic. A well functioning immune system, I have learned, has the ability to keep the body free from cancer. The hope is that her GVHD will stay away, but if it does return, we will cross that bridge when it comes. Leukemia is a very scary and aggressive beast and so I am happy that they are doing all that they can to try to keep it where it belongs. Away.

Four more sleeps until we are sleeping in our own beds, cancer free. Thank you St. Jude.

Thursday, April 26, 2012

Making plans, booking flights

Today, I learned two very exciting and wonderful pieces of news.  First, that Phoebe's chimerism is 100% donor cells, and second that we are going to go home soon.  Phoebe's doctors gave us the okay to call the St. Jude travel office and organize flights out of Memphis.  We are currently booked on a morning flight, leaving Memphis on May 8th.  I am so excited. 

Seeing looks of pride, excitement and joy on the faces of Phoebe's doctors warms my heart and fills me with so much hope and happiness.  Hope for a future without this leukemia that has plagued us for so long.  Today our doctor told me that Phoebe's risk of relapse is really no bigger now than it would be if she were a year out from transplant, he also said that he thinks they have given her a very real chance at a cure.  She is doing so well, he said, as I knocked just a few times on the wooden door.  Only time will tell, but hearing these words spoken by a doctor who sees many things and treats many children who are high risk like
Phoebe, was simply wonderful.  And yes, they have given Phoebe a very real chance at a cure and a future.  And because this is true, they have given our family so much. 

Phoebe is doing very well and today she showed off some of her new skills.  She walked a few steps right into her doctors arms and even let him hold her.  She knows good people when she sees them. Now that she is more mobile she also took my hands and led me towards the door of the clinic.  She knows that we got good news today and was in a rush to leave and be on her way home. 

Today is day + 147, the future is bright, and we are packing our bags and preparing for our return HOME. 

Phoebe enjoying time in a canoe at the Target House.

Monday, April 23, 2012

Standing, walking, dancing

Phoebe took six beautiful steps all by herself yesterday. At nearly 20 months old and completely on her own terms, she is learning to walk. Unlike her big sister, who when she learned to walk would excitedly walk towards my hands when asked, Phoebe will stand on her own with a big smile on her face, but when I hold out my hands and ask her to walk to me she says, or usually shouts, "no, no" and shakes her head. She chooses, instead, to take her steps when no one is watching and then laughs and claps her hands when we take notice. She is also becoming quite the dancer and will stand up and bounce to music. It is a beautiful sight.

She is doing so well and I am so proud of her. She is drinking milk with every meal and is very slowly gaining weight. Today at the hospital, her blood work looked great. Still wonderfully normal, or as close to normal as we have ever seen. There was even talk of sending us home. Home sweet home. The levels of all of her drugs are within normal range, or close to normal and they are re-checking them on Thursday. Then I am hoping we will talk about travel, airports and future plans.

When we do make it home, Phoebe will still be monitored very closely - about once a week at Sick Kids for blood work and levels of immuno suppression as it is important that everything remain where it should be, within normal range. We will also return to Memphis for more follow up monthly. We will be busy, but I envision it to be a happy busy. Phoebe will continue to be isolated from most things when she returns home - she won't be able to go to the grocery store or the public park, hand sanitizer will travel with us everywhere, she will need to avoid crowds, playgroups, libraries, and all of the "normal" things that most stay at home parents do will be on hold until she is farther out from her transplant. Her immune system is fragile and even a cold could be dangerous. She won't receive any immunizations until a year post transplant either so her immune system will be similar to a new born baby, or a new born on immune suppression. And it is becoming more and more difficult to convince her to wear the mask that is supposed to protect her if she finds herself in a crowded spot (like the airport), but she will be home and all of this aside, I think that just exploring her house, a place where she has only spent 2 months, and her backyard, will be paradise. And one day Phoebe will shop, explore, and do all that she wants to do and I can't wait.

Saturday, April 21, 2012

Just a few things ...

I have written often about how this journey has changed me, about all that I have learned. What I have learned about myself, about capabilities and strength, the human spirit and love, about the importance of time and family. I have seen true and honest kindness, met countless selfless people who devote their lives to helping others. And then there is everything that I have learned about cancer.

Specifically children with cancer.

Before all of this happened to me. Before my life was turned upside down and my sweet baby Phoebe began to fight daily to survive, I knew nothing of this world. I knew nothing of the multitude of children fighting this disease.

And so, I thought I would share a few of these things that I have learned with you because I think it is important and I wish I knew then what I know now.

Childhood cancer is not rare. 46 children are diagnosed with cancer everyday in the US. Each year In Canada, approximately 1500 sets of parents will hear those devastating words "your child has cancer".

In the past 20 years, the FDA has approved one single drug for treatment of childhood cancer. One drug in twenty years. This is Clofarabine, a drug that Phoebe received after her relapse and which also potentially helped to save her life.

Cancer is the number one disease killer of children in the US and Canada.

The cause of many children's cancers are unknown and therefore cannot be prevented.

The effect a childhood cancer diagnosis has on a family is devastating. One or both parents often has to stop working, siblings are shuffled from appointment to appointment, families are separated. The emotional, financial and social impact on each family member is huge.

One quarter of all children diagnosed with cancer will die.

Two thirds of children who survive their cancer diagnosis, will live with severe long term side effects. These include, but are not limited to, secondary cancers, heart problems, infertility, cognitive impairment, lung problems, hearing loss, growth deficits. For many children, once the battle with cancer is complete, a new battle begins.

Childhood cancer research is extremely underfunded.

Funding for pediatric cancer clinical trials has gone down every year since 2003.

In 2010, the American Cancer Foundation allocated $0.01 to childhood cancer research (a penny) the Leukemia Lymphoma Society dedicated $0.02 to childhood cancer research.

The National Cancer Institute directs 3.8% of all funding to finding a cure for pediatric cancer. The Canadian government directs, on average, just 3% towards childhood cancer initiatives.

Many organizations, like St. Jude, Alex's Lemonade Stand, St. Baldrick's, and CureSearch direct the majority of funds raised to pediatric cancer research and treatment.

There is hope.

In my own small window into the world of childhood cancer, I have seen and experienced things that I will never forget. Things that are forever ingrained in my mind. I have held Phoebe in the ICU, while she fought just to take a breath, swollen with pounds of excess fluid. I have worried often. About losing her, about the consequences and side effects of her treatment, about the unknown, and I have imagined conversations that we will have when she is older. Conversations about her life and having children and my heart aches. Yet, right now, I am one of the lucky ones. I have met and loved many children who are no longer here. I have comforted parents and have been comforted by others who have walked this path. I have shed so many tears. I have heard the word "zero" spoken in regards to my baby's chance at survival. I have grasped at the straws of phase one clinical trials, desperate to give Phoebe one more chance at life. I have fought with doctors and pleaded for treatment. I have struggled to be heard. I have listened to talk of "data" and "statistics" in relation to Phoebe's cancer, when in reality, there is so very little research directed at curing or treating infant Leukemia. I have been heartbroken to hear that a clinical trial that could potentially cure Phoebe would no longer be offered due to inavailability of a drug. No money can be made if so few children need it.

Despite all of this, the sad realities that surround me - I am constantly amazed and hopeful. The children that I see everyday are incredible, brave, and courageous. Many are bald or losing their hair, some are missing limbs, and many walk with assistance or are being pushed or pulled in a bright red wagon or wheel chairs, but they are beautiful, bright and charming. They are heroes. Many of the doctors and nurses that we have met on this journey are equally as incredible and I have witnessed progress made towards a cure. Wonderful progress. I believe in a cure and I believe in the people that I have met who are working to make it so.

I write this post because these facts, figures, and realities are always on my mind. And i feel a desparate need to give back and to help.

And so, here is a way that myself and others are trying to help - an effort in making a difference. A team is in place to run the "Sears Relay to End Kids' Cancer". This is an event in which the majority of the proceeds raised (80%) go towards treatment and research of pediatric cancer in Ontario. Specifically, to CHEO's oncology ward and Research Institute, and to the SickKids Foundation. A wonderful thing and a wonderful goal - to end kids' cancer.

The team I mention is called "Phoebe Rose Rocks" and the runners are running (100km, from Ottawa to Montebello) with Phoebe and other children in mind and with a unified goal of contributing $10,000 to this very worthy and needy cause. Our first fundraising event is taking place in the Ottawa area but is open to anyone who would like to participate. It is a penny drive and all of the proceeds from this drive - called "Pennies for Phoebe", will go towards our fundraising efforts and therefore, treatment and research of pediatric cancer in Canada. To learn more about this event and how you can donate your pennies, search "Pennies for Phoebe" on Facebook.

To learn more about how you can help, the Sears Relay event and our team see:

I know that at times it seems like I am always asking for help, but I truly feel that if everyone could see what I see everyday, or could experience even a tiny piece of what it means to watch your child fight cancer, then more people would want to help. And really, every single cent and every effort, big or small, makes a difference, as is evident in the progress that has already been made towards a cure for children's cancers. If incredible strides can be made when such little attention is paid, imagine what can be done with help.

Thank you all for following this journey, for your support, love, compassion, and prayers. Writing this blog and knowing that people out in the world are "listening", praying, and sending Phoebe positive thoughts has truly helped us get through many dark days.

And a little piece of Phoebe good news - she continues to have 100% donor cells.

"Do your little bit of good where you are. It is those little bits of good put together that overwhelm the world." Desmond Tutu

Tuesday, April 17, 2012

Milk and Bananas

Phoebe is drinking milk and eating bananas. She will also say "banana" and something that sounds a lot like "milk" in a very proud and excited voice and this all makes me very happy.  Since the removal of her ng tube she has been eating, but it has been the same foods over and over.  And up until this new addition of milk, she would drink only water.  I am imagining happily the weight that she will hopefully gain with these new foods.  And it all seems so wonderfully normal - bananas and milk.  

In other Phoebe news, she is now standing alone for longer periods of time but as soon as I point this out - saying to her "look Phoebe, you are standing!", she gently lowers herself back down to the ground and laughs, as if to say - I will walk and stand on my own terms, thank you.  She is a feisty one, our Phoebe.  Yesterday during her physical therapy appointment she finally allowed the therapist to play with her, but as soon as she did something Phoebe did not approve of, her hands were pushed away, and she was met with intense shouts of "no!" and "ma!" - the latter being Phoebe's way of saying mine. 

Yesterday's check up showed near perfect blood work, including liver enzymes which are finally, for the first time in over a month, under 100.  Still not normal, but close, and very far away from the critical level of 1800 they were previously.  The levels of her medications are still being monitored closely and adjusted until we reach the right dose.  Her immuno suppression at yesterday's check was in the normal range, but her anti fungal drug was a bit too high.  We will be back again this week and next to monitor the levels and then perhaps we will discuss a possible home coming.  Hopefully.

Mae is starting to talk about returning to Ottawa more and more as each day passes.  On the weekend she came to tell me with great excitement in her voice that "Phoebe's rash is gone away, we can go back to Ottawa now!"  I am so very excited for the day that we can board a plane to go home, when Mae is able to get back to her house and her toys and all of the baby dolls that went home with her daddy.  She calls her daddy regularly to check to make sure that he has properly put all of the babies to bed.  We are looking forward to when we can be together again and to adding a bit more normal and fewer doctors visits to our daily and weekly routine. 

Wednesday, April 11, 2012

A little bit of normal ...

We have had many wonderful moments and glimpses of normal over the past week.  On the weekend, Phoebe participated in her first ever Easter egg hunt.  She was a natural, dropping the colorful eggs into her bucket as she said "egg", over and over again.  She was very excited to see all of the other egg hunters and it was so beautiful to see her, just like any other kid, collecting Easter eggs.  She sat by herself for quite some time after the excitement wore off, just marveling at her loot. 

Earlier in the week, while at the hospital, we were treated to a live musical performance by a local children's band.  Phoebe loved it and stood holding on to one of the St.Jude wagons (which she also loves), bouncing and bopping to the music. Once again, a beautiful, wonderful sight. 

Phoebe is doing well, acting more and more like a toddler every day.  Meal times are often loud and chaotic, with regular and often shouts of "more" coming from Phoebe. She loves to eat, and after not doing so for most of her life, this too is an amazing sight.  She has yet to gain any more weight, which completely baffles me as she appears to eat constantly, but she moves constantly too so that might explain things.  She is learning from the best, her big sister Mae - who also never stops moving. 

As for the medical side of things, we have had a few extra trips to the hospital this week. The level of Phoebe's immuno-suppression was very high on Monday. This drug is used to treat and prevent the Graft vs. Host Disease that Phoebe had, but too much of it will suppress Phoebe's immune system and newly developing cells and that is not a good thing.  Like most things, it is a fine balance.  We have been back every day this week to have the level rechecked and it is still high, but coming down.  Until it is back in the range that the doctors want it, Phoebe is short one drug which is okay with both of us as giving the daily medications is exhausting and heart breaking for me, and the least favourite part of both of our days.  This setback will delay our home coming a bit, but as long as we are returning home healthy and cancer free, it is all right.

So for now, I will once again, anxiously await the chimerism results for this week.  Perhaps even more so because of the high level of Phoebe's immuno suppressant.  And we will continue to fill our days here in Memphis.  Excited to hear news from the doctors of plans to send us home.  And to more wonderful and "normal" things that await us on our return.

Friday, April 6, 2012

Sweet, wonderful chaos.

Yesterday was a busy day. It started at 7:30am with Phoebe's eye doctor and ended at 4pm with a visit to the medicine room - the room at St.Jude where all of the chemo, blood products, and other medicines the children need are given. Phoebe was there to get a drug that will help to protect her from the respiratory virus.

In between these two visits, we saw the neurologist whom Phoebe loves. When he sees her, he always picks her up and she giggles and snuggles her head against his chest. It warms my heart and makes me happy to see Phoebe being held and comfortable with someone other than myself or Jon. What also makes me happy is knowing that Phoebe no longer needs to be followed by neurology. We can see her friend the neurologist on social visits only. More happy news yesterday was delivered by the eye doctor, who told me that Phoebe's eyes are stable. They are still slightly elevated but to a degree that can be considered normal. And even more happy news from the transplant team who said that Phoebe's latest chimerism is still 100% donor cells and all of her blood work, apart from her slowly recovering liver enzymes, looks great. Normal.

Other than hospital life, we are making things work as a family of three right now and missing our number four. Phoebe is doing so very well, getting stronger and learning new things everyday. Yesterday she stood up all by herself in the middle of the room, she spends a lot of her time standing while holding on to something and bouncing, and at times she seems to "talk" constantly. I often understand very little of what she says, but she is making sounds and that is a very good thing. Mae is loving these new skills as it opens up a world of play for her with her sister, who up until four months ago, spent much of her days in a crib. Our days can be very busy, however, but I often find myself loving the chaos. Appreciating the fact that my family is complete and together. I have learned that each moment is precious, whether it be a moment spent in complete agony and stress with two kids in a tiny doctor's office, trying to talk seriously over the noise of Caillou or Dora (we had a few of those moments yesterday), or a sweet bedtime moment of stories and songs. Time, how ever it is spent, should not be taken for granted.

Throughout this journey we have met many families who have lost children to cancer and this week a friend said good bye to her sweet and fabulous two year old, Piper. Piper battled infant leukemia for most of her life and touched many lives with her strength and resilience. My heart breaks for each of these families and I wish and ache for a breakthrough, more research, more attention paid to the cancers that are killing children. We have seen first hand how research is evolving and helping to save children, or to give children like Phoebe a second chance and I believe that a cure will be found, hopefully in my lifetime, but I am all too aware of the need for more funding. I see it everyday in the faces of children and their families.