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.

Tuesday, December 15, 2015

One month ...

A few people have suggested that I keep writing, so here goes ... I'm going to try. 

Writing about Phoebe started as a way to keep family and friends informed on all that was happening, but then it quickly became something more. For me, it was therapy. Writing helped me to feel like I was doing something, and even if it was just getting words out, I felt useful. I was the story teller and it was a joy to write about Phoebe. I wish I wrote more. I wish I shared more of her wit and personality. I honestly don't know if I can write about grief and what is left now without Phoebe. I think, like before, that it could be therapeutic, but it's sad and personal and unlike before where I shared Phoebe's story - this time it's mostly me. And it's hard. 

It has been one month of missing Phoebe. One month of longing for her with every breath I take. One month of holding on. 

It still feels like a nightmare - it most definitely is a nightmare, but it still feels like one I might wake up from. Despite all that Phoebe had been through and all of her many obstacles, I honestly never thought she would leave us. 

Phoebe's death has opened my eyes to the world around me and I notice things I never did before; probably because I look for Phoebe everywhere. Not the Phoebe I need and want, but a sign, anything that will let me know she is here. The sound of the wind in the trees, sunshine through dark clouds, the hint of a rainbow without a drop of rain, three birds - always three, darting across the sky, the cardinal that visits us often, the sky lit up and painted, the brightest stars - to me they are all Phoebe. Noticing these things reminds me of the light that is still here, and so I hold tight to the belief that she is with me. 

But, just like I feel Phoebe everywhere, everything reminds me of Phoebe. When I venture out of my house I am flooded with memories - places we have been, times we shared, food Phoebe loved, toys she would have wanted this Christmas, songs on the radio she would have loved and danced to, songs she did love and dance to, songs she would have told me to turn up, and others that would have her say, "no Mama, not this one". The empty space in the backseat, the empty seat at the table, our quiet house that was once full of the best kind of noise and chaos. The treasured Christmas ornaments Phoebe made that will forever be handled like they are the most breakable. The Christmas lights. Phoebe loved Christmas lights. Sometimes it feels like torture and it often appears so as it can leave me a mess of tears, but it's a welcome torture because it's all about Phoebe and so, I let the waves wash over me. 

Just as there is comfort in the idea that Phoebe is with us, there is the constant reminder that she's not. She is not here, or not in the way that we need and want her to be, and to long for something, to need something that I will never have again - is impossibly hard. And in many ways, it gets harder with each passing day. 

I used to wonder why people say a child is lost when one dies. I have said this myself many times, but Phoebe is not missing. She is not lost. We don't need to simply look for her in the right place and there she will be. Found. Safe and sound. But then, when I find myself looking for her everywhere, when I search for and long for signs of Phoebe - when I wish to find her in a dream, it seems that in some ways, she is lost. She is lost in a way that I will never find. Or more likely, I am terribly lost, and Phoebe is gone. 

I miss her so much. 

We are taking things as they come and doing what we can to honour Phoebe each day. Sometimes honouring Phoebe means getting up, making coffee, and facing the world. Sometimes it is putting up as many Christmas lights as we have because I know it would make her smile. It always means loving and caring for Mae and as Phoebe would insist, making sure she does her school work. Sometimes it is thinking about what's next. Phoebe would not want us to lay down and give up. She would want us to try. She would want us to live. She would want us to find the joy and happiness instead of the anger and hate, and as hard as this is right now - I will try. Everyday, I will try. 

We are thinking about forming a charitable foundation in memory of Phoebe with the goal being to raise money for childhood cancer research while helping to support families like ours, who need to travel far from home to receive treatment. What happened to Phoebe and how hard she fought, is not okay. It never will be, but maybe we can make it better for someone else. All of this is a dream right now, but one that we hope we can make happen. 

Phoebe fought cancer for five years with outdated medicines. There truly was never an answer although we searched and searched and searched for one. There continues to be very few, if any, real answers that solve relapsed MLL + leukemia - in addition to the too many other childhood cancers for which there is no cure and this needs to change. We truly need to do better and I believe we can. 

If you would like to give a gift of hope this Christmas, in memory of Phoebe, please follow the link below to donate to St.Jude. If you are donating from Canada, you need to reset the country of residence from the US. All funds raised will be directed to Dr.Gruber's lab and infantile leukemia research. 

http://fundraising.stjude.org/site/TR/GiftFunds/GiftFunds?px=2109846&pg=personal&fr_id=39300

Thank-you for keeping our family in your thoughts. 





Phoebe's eulogy - November 29th 2015 

It is impossible to put into words how we feel or how much we will miss Phoebe, what she meant to us, and the intense void that she has left in our lives - so instead I thought I would share a few words about the small but mighty person that Phoebe was and the big legacy she leaves behind. 

Phoebe was born on August 8th 2010 and from the very moment she entered this world, she was a force. We chose the name Phoebe because we loved it and it just seemed right. We learned after Phoebe was diagnosed with cancer that her name means "the bright and shining one" and warrior princess and she certainly lived up to her name. Phoebe was our bright and shining star  - she was given a very difficult life, but to Phoebe it was beautiful. To Phoebe everything was worthy of joy and she made the most of every second she had. 

Phoebe was wise beyond her years and often seemed to know more than we did. Looking back now, I think she probably did. Even as an infant, I remember thinking that her eyes were trying to tell me something. Like my Granny May would say - she's been here before. She was a beautiful old soul. 

Phoebe never thought of herself as sick - as her parents, we worried and would always ask her how she was feeling and if she was okay - she would always say in her sassy way that seemed more like a teenager than a five year old - "I'm fine now please stop asking". She would not want to be remembered as the girl who fought cancer  - she would want to be remembered as the girl who lived. Because she did. She lived her life joyfully and she opened our eyes to what life is truly about. Every chance she had Phoebe was trying something new. She laughed and played and jumped and danced and sang her heart out despite all that she was going through. Her energy was contagious and her laugh was the most beautiful sound.  She was just incredible - the coolest kid. She had the best taste in music for a five year old, often requesting we freeze dance to pumped up kicks and weezer. Even at 3 years old, Weezer was her favourite band. She loved good food and much to her daddy's delight, would request he make her "restaurant food" and offer to help. She was fiercely proud - of herself and her big sister and all they would do together. She was feisty - so feisty and not at all afraid to speak her mind. Even at 5 years old, she made her wishes very clear. She bossed us all around, always reminding us to do what was right whether it be to put a seatbelt on, for Mae to do her homework, or to eat healthy food - just this past Halloween she reminded all of us that candy is bad and made sure Mae brushed her teeth after every sweet. we loved it. We loved her little voice. For five years, She defied all logic and science and thrived in the face of a very aggressive cancer. When babies relapse like Phoebe did, there are no treatment options, no cure, and often no hope. This hasn't changed, but Phoebe lived and loved and played for 4 and a half years after her first relapse. 

Phoebe taught herself to read. One day, she asked if she could read a simple book to us and promptly picked it up and started reading. Jon and I looked at each other and mouthed the words - did you teach her this? She drew and painted with so much talent and creativity, that our hearts bursted with pride, Phoebe could put together lego well beyond her age with one hand; she was always the builder - Jon, Mae and I, the "piece finders". She believed she could and so she did. After spending 2 months in the hospital recovering from a stroke that affected her speech and large and fine motor skills, the very first thing Phoebe did when she got home was ride her tricycle. And she was fast. After a fungal infection that is normally insurmountable - Phoebe learned to ride a bike and a scooter. Ten days before she died she asked to try roller skating - and she did. Phoebe was a miracle - all that she accomplished, the time she had, each milestone - they were all miracles. At times it seemed that Phoebe was unstoppable, but then it was clear that our fearless leader needed a rest. 

We learned so much from Phoebe and in many ways she was our teacher. We learned about love - what it is like to really and truly love because watching the love that was shared between Phoebe and her big sister Mae was the most beautiful thing I have ever seen. Phoebe loved with her whole self and we loved her right back. Phoebe taught us to speak up for what we believe in and to never give up. We learned to seize the day - that all of the little things that we complain about or think we need in life really don't matter. Phoebe taught us to always choose hope - that anything is possible. 

Phoebe inspired us to be better. She inspired her community. Her journey taught us that we need to do better and Phoebe taught us that we can do better. She would often tell us that what she was going through was not okay - she was very clear about this - as much as she loved life and found joy - fighting cancer as a child and all that comes with this -- it was not okay. I have often avoided using the word fight to describe anything about Phoebe - it didn't seem right because it is not right for any child to have to fight for a chance at life, but These past five years, Phoebe really showed us how to fight  - and now that Phoebe is not here we will continue her fight. Telling Phoebe's story does not end here, in fact, in some ways it begins. What we do now. How we honour Phoebe. How we make sure her story continues is so important. We have ideas and plans and we hope that each of you who was inspired by Phoebe, each of you who also grieves for our sweet Phoebe will help us turn our grief into something good. I know Phoebe would have wanted us to make it okay. 

I wish so much that we were able to hold Phoebe longer, to hear her voice, to see her grow up. I know she would have been amazing and I will always wonder what she could have done. The time she had with us although too short was and will always be the most beautiful gift, it may have only been 5 years, but for five years, we watched Phoebe grow. For five years, we laughed and loved. For five years, I got to be Phoebe's mom. 

Monday, December 14, 2015

In memory of Phoebe Rose

Thank-you to everyone who has made a donation in memory of our sweet Phoebe Rose. Giving back to St.Jude and supporting research that will make a difference and give hope to the too many babies diagnosed with this terrible disease and their families means so much to us. We know Phoebe would want us to try to make it okay - thank-you for helping us do this.

Please consider giving a gift of hope this Christmas by making a donation. We need a cure. 


http://fundraising.stjude.org/site/TR/GiftFunds/GiftFunds?px=2109846&pg=personal&fr_id=39300

Thursday, December 3, 2015

We are still here. Making our way through each day without Phoebe is hard, painful, sometimes it feels impossible and still none of these words even begin to describe it, but that is all I have right now. We get caught up in the busyness of the day, and there are moments in which we feel okay, but then the waves come crashing in. How can it be that Phoebe is gone? How can it be over 2 weeks since we last heard her little voice? We long to hold her. To see her smile and hear her laugh. To just have more of her. We watch a lot of Phoebe videos and look at pictures. Mae asks to do this before bed and I am grateful to watch and remember all those times we laughed. Mae will often say - "we had a lot of fun together, me and my Phoebe".

Mae started school on Wednesday and although some tears were shed on the first day (by all of us), she is happy to be back. Seeing her smile and hearing about her day warms my heart. Listening to Mae talk about how they spoke about Phoebe on the first day and the beautiful and warm welcome she received was just what we needed. We are so grateful for the love, open arms and support that Mae and our family continues to receive from Manor Park. 

We are often reminded of how loved Phoebe is or how she is remembered and honoured. We appreciate each comment, message, card, and act of kindness. It means so much to us to hear Phoebe's name and to know how she reached you, inspired you, or simply made you smile. Thank-you for sharing this with us. She does this for us and so much more. 

We would also like to thank the many people who have been making sure we are well fed. We are overwhelmed in the best way by your kindness. We wish we could thank you all in person and hopefully one day we can. Please know that we are so grateful for this support. 

Thank-you to Dave and the staff at the Empire Grill for generously hosting Phoebe's reception. Thank-you to Kinki for making Phoebe's favourite sushi, to Uncle Scot for making all of Phoebe's other favourites, to the Frasers of Fraser's Cafe for the beautiful and delicious food, and to Jacobsens and Wolf and Ada's for contributing delicious deserts. Thank-you to Sue Krueger for the beautiful and perfect flowers and arrangement for Phoebe. We know our foodie Phoebe would have loved all of this. Thank-you to family and friends for helping to organize everything and basically holding us together. 

We are taking things one day at a time - missing our sweet Phoebe so much. In the spirit of Phoebe and following her lead we laugh as often as we can and we do our best. We take nothing for granted. In memory of Phoebe we will continue to shout it from the rooftops for children with cancer - our shout may be more of a whimper at first, but we hope our voices will be heard. We know Phoebe would want us to make this okay. 

We love you Phoebe Rose. 








Tuesday, November 24, 2015

Phoebe's obituary - something I never imagined I would ever write. In fact, most of the things we have been doing lately are things no parent should ever have to do. Each day we wake up without our sweet Phoebe is harder than the last. We miss her so much.

Please see the link below for Phoebe's obituary and details on how to make a donation to infant leukemia research at St.Jude in her memory. 

http://beechwood.permavita.com/m/PhoebeRoseDoull-Hoffman

Friday, November 20, 2015

Celebration of Life

We are very touched by the many messages and comments we have received - it is wonderful to know how loved our sweet Phoebe is. And how she touched your lives. We wish we could respond to each of you and thank you personally.  

It's so hard to believe that Phoebe is gone and we just miss her so much. I miss her little voice telling us all what to do. I miss holding her. I miss her joy. I miss everything about her. I keep thinking I am going to wake up from this nightmare, but instead I just feel lost. We all do. Mae cries for her sister and best friend and it breaks my heart. 

We are leaving Memphis tomorrow after 16 months away from home. We wish so much that things were different and our Phoebe was coming with us - healthy and with the cure she so deserved. Instead she is coming home with us so we can put her to rest. We miss her so much. 

The celebration of Phoebe's life will be held on Sunday November 29th at the Beechwood Funeral Home, located at 280 Beechwood Avenue in Ottawa. We will update soon with more details. 

A special thank-you to Ella Berman for writing and singing this beautiful song for Phoebe. I know that Phoebe would have loved this and when I close my eyes I imagine her singing along. https://m.youtube.com/watch?feature=youtu.be&v=1OAhx2alPXc





Wednesday, November 18, 2015

Our sweet Phoebe Rose took her last breath this morning in the ICU at St.Jude. We never made it home with her, but in many ways her beautiful spirit will always be home with us. We are broken, so broken, and just miss her so much. We Love you Phoebe Rose.


Monday, November 16, 2015

Home

We are making plans to come home and are transferring care to CHEO's ICU. Phoebe is very sick with infections, but we hope and plan, as long as it will help Phoebe, to continue treatment for these at home. There is no cure for refractory infantile leukemia and we have tried every single thing we can. 

St.Jude, being the incredible and wonderful place that it is, is going to great lengths to get Phoebe home to Ottawa. I don't know if this would be possible anywhere else. They are arranging a medical transport flight, and because of the extenuating circumstances, they may allow both Jon and I to travel with Phoebe. We could be leaving as early as tomorrow. 

The people who have cared for Phoebe throughout this journey are some of the most beautiful people I have ever met. They have done so much to help Phoebe, but also to help our family, and even though we are going home without the cure we so hoped for, we will always be grateful for this beautiful place and their mission. St.Jude has given us time and will always hold a special place in our hearts. 

We are still hopeful, but our hope has changed. With everything we have, we hoped for a forever cure and to bring home a healthy child, but now we hope for time. We hope for healing. We hope for smiles, good days, and strength - for Phoebe and all of us. We hope Mae and Phoebe understand. 

Phoebe is still sick with many infections, she is requiring high flow oxygen to help her breathe, but each day she spends some time playing, watching movies, and telling us all what to do. At Phoebe's request, we have started playing freeze dance at least once a day. Phoebe plays and pauses the music, we dance, and she smiles. I would do anything for that smile.

We are devastated. There are no words that even come close to expressing how painful and heart shattering this is. How hard it is to watch Phoebe suffer and fight to breathe as we have been doing. We wish things were different. We wish there was something, anything, we could do that would guarantee healing and we will continue to do all that we can. All that we can right now means bringing Phoebe home where she can be surrounded by love. It means holding her, loving her and supporting her through whatever may come. We just love her so much. 

Thank-you all for loving and praying for Phoebe. Please pray for a safe journey home and keep our sweet girl in your thoughts. 






Sunday, November 15, 2015

Saturday, November 14th 


Thank-you all for the love and prayers and messages of support - I believe Phoebe can feel the love and that means the world to me. I was going to wait to update because things are so unpredictable, but I know that you love and worry about Phoebe too.

Last night was so hard and very little sleep was had. We spent the night trying to help Phoebe breathe better. Listening to her grunt and struggle and try to get comfortable. She was placed on high flow oxygen via a nasal cannula - this took some convincing and negotiating as she didn't want something in her nose, but she finally agreed. It took some time for her to settle and today has been very up and down, but overall her breathing has improved although it is still fast. Her heart rate and blood pressure have come down (both were high), and she has managed to maintain her oxygen saturation - although it's at a high setting.

The colitis appears to be a bit better and Phoebe's belly is less distended, but her pancreatic enzymes are more elevated today. We hope they show some improvement tomorrow.

There are blasts in Phoebe's blood, but the doctors are not convinced it is disease progression. They think that her body could be in shock and her bone marrow could be producing everything and anything it can. Right now leukemia is probably the farthest thing on our mind - there are just too many life threatening issues at play.

We are clinging to hope. Phoebe is more comfortable. She slept most of the day, but when she was up she played on the iPad with Mae. She hasn't played with Mae in weeks and her big sister really needed this. We are grateful for each day, each smile, each tiny victory, every moment.

Friday, November 13, 2015

Phoebe had a very hard day today. We all did. On top of everything, she also has pancreatitis and colitis. Her belly is very swollen and it's affecting her breathing - making her work very hard, too hard, to breathe.  It is all just too much. We had some very difficult talks in the ICU tonight and there really aren't any words to describe this. Our hearts are breaking and we are clinging with all that we have to hope. Even if it is just hope for relief for our sweet girl. We need prayers, all of your positive energy, and love.

Thursday, November 12, 2015

ICU

Phoebe is in the ICU. We have been here since Tuesday afternoon when she started having difficulty breathing. The rapid response team was called and within minutes, Phoebe's room on the leukemia ward was full of people trying to help. I can't say enough about the amazing people who work here.

The ICU doctors told us Phoebe was in respiratory failure and once we arrived in the ICU they quickly put her on a biPAP machine to help her breathing. The mask covered her entire face and she screamed at us to help her. We stood by completely helpless, only able to offer our voices to comfort her. When we tried to explain that the mask will help and it will be okay, she screamed "it's not okay". That is Phoebe's standard reply to "it will be okay", and she's right. None of this is okay. 

Thankfully her breathing improved with the help of steroids and the biPAP machine - she tolerated it for about ten hours before she pulled it off her face and demanded she get a break. She is still requiring oxygen all the time via a regular mask and she recently tested positive for adenovirus in her blood, stool, and sinuses - it is also probably in her lungs.

The best and really the only way to completely get rid of any virus is with an immune system, something Phoebe doesn't have. There is a drug available to treat adenovirus, but it is very toxic and hard on the kidneys. We were hoping to use an investigational drug, but it is only available on a compassionate care basis to kids who are unable to receive the first - for example if their kidneys are failing. We are trying all we can to get the less toxic investigational drug, but because it would take at least a week even if it were available and Phoebe is very sick with adenovirus now, we are giving one dose of the available drug, holding our breath, and hoping it helps. 

There are so many obstacles and challenges for Phoebe to overcome that it is overwhelming and really just devastating. Each time we move forward, we take a step back. Phoebe is strong and brave and she fights so hard, but she is also five years old and deserves so much more than this. Despite all that is going on, when Phoebe isn't telling her nurses and doctors exactly what she thinks - she smiles. She laughs at her Daddy's jokes, she paints and does crafts. She listens to her favourite music and reminds Mae to do her homework. She keeps all of us on our toes and reminds us what is important. 

We are holding on and hopeful for brighter days. We hope to get out of the ICU. We hope to get out of the hospital. We hope for a better quality of life for Phoebe, and we pray for healing and relief from all of this. One day at a time. 

One thing is for certain, Phoebe can feel the love and prayers and this brings us so much comfort. Thank-you all for keeping Phoebe in your thoughts and prayers and for the beautiful messages of love and support. 







Monday, November 9, 2015

Fevers

We are in patient at St.Jude and have been here since late Saturday night. Phoebe has been having very high and persistent fevers. She had one positive blood culture, but all have since been negative. She is still requiring oxygen and at times her breathing is very labored. Although there are many possibilities, it is not clear exactly what is causing these fevers. Phoebe is struggling with many things and this is so hard. 

Writing down everything that is going wrong lately is incredibly difficult and it takes me places that I just don't want to go. 

Phoebe has blasts in her peripheral blood. Yesterday there was 1% and today it is 9. They are thought to be leukemia. 

Receiving blood products is becoming increasingly more complicated and Phoebe seems to react to everything with fevers, chills, and panic. Considering that leukemia crowds out normal and healthy cells, we rely on blood donors and Phoebe needs to be able to receive blood and platelet transfusions to live. 

When Phoebe's platelets drop below 75,000, which in the world of leukemia is actually not that low, she develops nose bleeds that just won't stop. Imagine your child's nose bleeding and not being able to stop it. Pillows, sheets, tissues, soaked with blood. Wise beyond her years, Phoebe will demand platelets, she will ask for decongestant nasal spray, she will lay tissues on her pillow because the sight of blood staining it and her sheets scares her, and at 5 years old, she knows too much. 

As the days with fevers and everything continue, our hope is wavering. Our hope for a cure has shifted to hope for time, relief, peace and healing. Sometimes it seems as if we are on an island - alone in our belief and hope for healing. We are hanging on with all that we have and really just trying to get back to solid ground. To be able to go for a walk outside with Phoebe, without the worry of oxygen, fevers and nose bleeds, is something we long for. 

Count your blessings, friends, and enjoy your kids and loved ones and the many, many gifts they bring. 

We are so grateful for the support, messages, love and prayers sent our way. I often imagine all of this love wrapped around Phoebe, protecting her from the scary things that tend to fill her days. 

This Sunday November 15th in Ottawa, our friend and very talented photographer, Anne-Marie Bouchard, is holding 'Photos for Phoebe' - this is the third year this event has happened and we are so thankful. It is a wonderful opportunity to get beautiful photos of your kids, yourself, friends, or loved ones in time for the holidays. For more information, please email Anne-Marie at anne@ambphoto.com or visit http://ambphoto.com/blog/2015/11/09/photos-for-phoebe-year-3/





Thursday, November 5, 2015

Phoebe has been doing pretty well. She is getting stronger and is awake and more alert during the day. She often wakes up in the wee hours of the morning too - asking to watch a movie with popcorn - all good signs that she is feeling better. She is still needing oxygen, but her breathing has improved and she hasn't had any fevers.

Tomorrow Jon will go to the blood donor room to harvest granulocytes for Phoebe. My run of 29 granulocyte donations has come to an end and it's bittersweet. I would have continued to donate for Phoebe as long as I could, but each week I gave I was a bit more tired with lower iron. I still would have kept going, but when they retested Phoebe's blood for antibodies, it showed they were still present and the signal was stronger. This suggests that Phoebe is making these antibodies which suggests that somehow, some of her own cells have managed to recover after two transplants and everything else. Her body is rejecting my red blood cells or any A+ red blood cells, which means she is transfusion dependent because any red cells that her transplanted cells (my cells) make, she essentially destroys. It also means that she can't receive my granulocytes because they also contain red cells. All of this is complicated and very rare and we were always told it was impossible for any of Phoebe's original healthy cells to survive. I know this might sound positive, but because Phoebe's cells are what originally and continue to make leukemia - even if what is there now is healthy, it is not really a good thing.

Jon's granulocytes will go to work on the infections Phoebe has, and this is good and needed, but giving them and this latest news complicates things for any next steps that we were holding on to. My frozen stem cells that we were hoping to give to help give Phoebe a boost also contain red blood cells, so they would also be rejected unless Phoebe stops making these antibodies. There is also a chance that she could start to reject Jon's cells too.

For now, we will focus on the progress Phoebe has made and continues to make. She is strong and feisty and happy to be feeling better. She is excited to be getting her Daddy's cells and we know they will work their magic.

Sunday, November 1, 2015

There was a miscommunication about the CT results - it seems that although some things look better, there are new areas of concern in the lungs that explain Phoebe's need for oxygen. Phoebe is now requiring oxygen 24 hours a day, so we have a machine at home and portable tanks in the car. We tried to do some trick or treating last night, mostly for Mae as Phoebe is not a fan of Hallowe'en - she will tell you that "candy is bad for you", if you ask her what she thinks, but her breathing was just too labored and it was too difficult to make our way with the tanks that we gave up and went home after a few houses. It was sad and hard - remembering carefree Hallowe'en nights in the past, but we tried and Mae smiled, so it was worth it. 

We are still out patient, but only because St.Jude places a lot of faith and trust in parent's ability to care for their child and they know that the best place for Phoebe is at home with us. We are still at St.Jude daily, but when we are at home we are running IV antibiotics every eight hours, giving Phoebe her daily oral medications, switching out and setting up IV nutrition, monitoring oxygen saturation levels and making sure Phoebe is getting enough oxygen, doing dressing changes and the maintainance of Phoebe's central line, taking Phoebe's temperature, trying to get her to eat and drink which means frequent trips to the store to get anything her little heart desires, all while trying to prevent and control the nose bleeds that seem to be chronic right now, and homeschooling Mae. I am thankful there are two of us. It is absolutely exhausting and some nights we get very little sleep, but Phoebe is happiest at home, Mae is happiest when Phoebe is home, and we will do anything to make them smile, and so we do. 

In other news, although I donated granulocytes to Phoebe for I think the 30th time this week - a process that takes two and a half hours and is getting more exhausting as the weeks pass, Phoebe was not able to receive them. Each week her blood is checked to make sure that she will not reject the granulocytes and each week it has been fine. This week however, they discovered that Phoebe somehow developed antibodies to my granulocytes and if we were to give them they would cause her to be very sick as her body would reject them. The granulocytes were thrown out and we plan to test again on Wednesday because Phoebe is still neutropenic and she needs these cells to fight the many infections she has. I don't know where we go from here if she is unable to receive them. I also don't understand why she is suddenly rejecting them and it is very complicated. Phoebe's doctor explained two possibilities - one is that Phoebe picked up antibodies from an infusion of IVIG in which case it is temporary, but the other is that Phoebe's own cells have somehow managed to mature lymphocytes. The latter would be very rare and actually kind of crazy because after two transplants and all that Phoebe's body has been through it is very unlikely and almost impossible for any of her healthy cells to survive. 

We will know more next week and until then will continue to put one foot in front of the other, breathe in and out, hug our girls tight, laugh as often as possible, and hope with all we have for healing. 

Thank-you all for keeping Phoebe in your thoughts and prayers. 





Wednesday, October 28, 2015

Phoebe was admitted to the hospital on Monday because her oxygen saturation was low. Her hemoglobin was also critically low and she was just not doing well. They wanted to keep a close eye on her and get her ready for her tests on Tuesday. The plan was to do a CT scan of Phoebe's lungs and sinuses, under sedation like we always do because Phoebe is afraid of the CT machine and panics when she goes near it, and a bone marrow aspirate. 


Bright and early Tuesday morning, Phoebe got over her fear of the CT machine and went for her CT scan without sedation. She protested a lot, but her Daddy was able to convince her to try so she could avoid the extra sedation given she was already having issues with her breathing. She told him over and over "I'm not going to cooperate, I'm not going to stop moving, I won't stop talking", but she eventually listened to the technician and did everything she was supposed to - even the breath holds! This news shocked the many doctors, nurses and child life who have been trying to convince Phoebe to do a CT without sedation for amost a year.


Because of all the issues Phoebe has been having with her breathing, the coughing, and her oxygen saturation levels, we have been very worried about these tests and what they would show.


The CT of Phoebe's lungs is the same - nothing new, nothing worse, nothing that explains Phoebe's need for oxygen.


The CT of Phoebe's sinuses showed a mass, or drainage, or fungus, so ENT was called and they wanted to look in Phoebe's nose for fungus with a scope ... again. We didn't want to traumatize Phoebe by looking up her nose with a camera and by this point, Phoebe still had to have her bone marrow aspirate under sedation, so they agreed to wait and look while she was asleep. The ENT doctors come from another children's hospital in Memphis so that they waited and worked with Phoebe's schedule is really great. This great timing is also thanks to Jon who asked that the CT scans were read before moving forward with sedation just in case something like this came up. As it often does with Phoebe. Thankfully it worked out as it did because they found and pulled out two hard clots, one looked impossibly huge and was wrapped through the hole that Phoebe has in her septum and lodged in the back of her throat. The ENT doctor said it wouldn't have come out any other way but surgically. Never a dull moment, but this explains the cough Phoebe has had all week and why she hasn't been able to speak very well. And it is a huge relief that it's not fungus. The doctor said the tissue looked beautiful, which we kind of already knew because Phoebe had exploratory sinus surgery last month, but anything is possible.


Phoebe slept the rest of the day following this excitement and although she still needed some blow by oxygen, her breathing was back to normal. She also stopped having fevers and so she was discharged this morning and we had the rest of the day at the target house to wait for a phone call with the rest of the results. 


The bone marrow results are better with the level of disease down to 50% from 75. We are relieved that things are moving in the right direction after just two doses of chemo and we will meet with Phoebe's doctor on Friday to talk about next steps - if Phoebe is able and well enough to continue this treatment. 


Somewhere in all of this, Phoebe also tested positive for adenovirus - it is mild and it doesn't look like it will require treatment which is good as the drugs used are hard on the kidneys, but this could also explain some of the symptoms Phoebe has been having. There has been a lot going on, but all things are improving and we are hopeful. Always hopeful, and grateful for better news.


The best part of our day was driving home and listening to Phoebe ask for a snack and sing along to the radio again. She has been so quiet lately and it's so nice to hear her voice. She also started telling us exactly how she feels and getting mad that she needs a bath ... it's like music to my ears, her little feisty voice. 


Thank-you all for keeping Phoebe in your thoughts and prayers. 

Saturday, October 24, 2015

5 years

"Because of significant advances in therapy, 78% of children diagnosed with cancer will survive 5 years or more, an increase of almost 46% since the early 1960s". Childhood Cancer Canada 

Today, Phoebe has "survived" 5 years. It was 5 years ago that she was diagnosed with infant leukemia. 5 years ago that we were thrust into this world of childhood cancer - a world I honestly never knew existed until I was part of it. All that has happened since that day five years ago, it is almost unbelievable. It still feels like a nightmare that we just need to wake up from. 

Phoebe has truly never fit into this statistic. Her initial diagnosis carried a somber 10-15% survival rate. With transplant it increased to 30%. Now it is zero. There are no survivors of refractory infant leukemia. A very harsh reality and so very far from 80% it hurts. But yes, Phoebe has survived 5 years from her diagnosis, so she is now counted among the 80%. We are so grateful - many of our friends whose children had cancer were not so fortunate, but this survival is not what it seems. We are led to believe that childhood cancer is a success story - we hear that 80% survive and this really is good, but the next time you hear this statistic, I want you to think of Phoebe. There is still so much that needs to be done. 

This is what "surviving" 5 years of childhood cancer looks like for Phoebe and we are not alone in this. 

Never mind that Phoebe still has active disease and no cure or effective treatments available, never mind that there truly have never been any effective treatments, what she has had to endure to survive these 5 years is simply incomprehensible. It is just not okay. 

This past year alone she has suffered strokes, seizures, and infections - all a result of treatment. She has spent countless days in the hospital. She has suffered greatly. We have tried just about everything we can try to rid her body of leukemia, but nothing is working and it's getting harder. I can't even write about all that has happened this year or these past five years without sobbing. It is all just too much. 

Today, Phoebe is a very sick little girl. She is tired and spends most of the day sleeping or lying on the couch. I can't remember the last time she ran or played. She is not eating and she hardly talks to us. She has had low grade fevers almost every day for over a week and is requiring oxygen. It is absolutely heartbreaking and watching Phoebe fight and struggle each day is so hard. We are not sure what is going on and there are many possibilities. We worry all the time. Are we making the right decisions? What is best for Phoebe? Is it too much? And each day we are faced with decisions and choices that no parent should ever even have to think about. 

We were reminded this week, when we met with Phoebe's transplant doctor to have another painful discussion about the lack of options, that we have always made the right decisions because we have made them out of love for Phoebe and with an intense longing to help her survive. We were reminded that statistically, Phoebe shouldn't be here. That she is a miracle. That to have survived these 5 years - especially considering all that has happened, is medically unexplainable and miraculous. This we know. Phoebe is amazing and strong. This we know, but it's not enough. It will never be enough until there is a cure. 

No one should have to fight so hard to survive five years and five years of struggle and heartache does not equal cure. 

We hope this latest treatment plan is working. We hope to be able to do a bone marrow aspiration tomorrow. We hope for good news. We hope to figure out why Phoebe is so sick right now. We hope. We hope. We hope. 

Thank-you all for continuing to read and follow Phoebe's journey. Despite the struggles and heartache, there is always joy and hope and always something to be thankful for. We have been blessed with an army of support and for this we are so grateful. We have had five beautiful years of life with our family complete and we will never give up. There has always been light even in the most overwhelming darkness. 

Here is light and joy personified ... 












Monday, October 19, 2015

Phoebe is struggling with many things right now. She started the new protocol and was fine until Thursday when it looked like she had a reaction to a blood transfusion. We were admitted to the hospital and the next morning Phoebe woke up with a nose bleed - it just wouldn't stop. She was losing a lot of blood so the ENT doctor packed her nostrils to stop the bleeding. This worked but traumatized poor Phoebe. While all this was happening her lips started bleeding and she developed some blisters and sores that have yet to go away. Each morning since she has woken with a mouth full of blood and painful swollen lips black with dried blood. It is as awful as it seems. It is all just too much.

We were discharged late Saturday and went back to the Target House. Phoebe had a difficult night and so we brought her to the hospital last night because we were worried about her breathing and the bleeding. She was listless and just looked to be working too hard to breath. Phoebe actually asked to go to the hospital which was a first and just made us worry more. Her oxygen saturation was low and so we were sent home with instructions to use supplemental oxygen. Many questions and not many answers. 

Today we are back in the clinic for labs and hoping to get some answers and relief for Phoebe. They are running tests for viruses, but the common ones have come back negative so far. We are waiting to see the infectious disease doctors. And because Phoebe isn't eating, she is being started on IV nutrition - a feeding tube isn't an option with everything going on with her mouth and nose. She is not herself although when her favourite song comes on the radio she asks us to turn it up so she can sing along, her lips make singing difficult but she still tries. Beautiful Phoebe Rose. 

Please keep Phoebe in your thoughts and prayers. All of this is on top of the many other issues we deal with on a daily basis and Phoebe needs a break. It is so hard to see her struggle with so much every day.  

Thank-you all for loving Phoebe and helping our family through this. We are so grateful for the help and support we have received. 

This week at Mostly Danish Furniture on Wellington St in Ottawa, 10% of all sales will go to Phoebe. This week also marks 5 years since Phoebe was originally diagnosed. 5 long years of ups and downs made easier with the support from friends, family and our community. Thank-you. 





Saturday, October 10, 2015

Phoebe had a bone marrow aspirate on Friday and the results are not good. 73% of the cells they see are leukemia. This is up from 8% just a few weeks ago and it is heartbreakingly clear that the gemtuzomab has not been successful. We will not be finishing the trial and giving the final dose. 

We don't have the chimerism results back yet, and we are holding on to hope that they might paint a brighter picture. This result actually makes sense when we consider the chimerism from 3 weeks ago. 

It is devastating and we feel helpless. I don't know how many times I have written that, but lately it seems like it's every day. It is impossible to explain how this feels - how desperate and sad it feels to be here. 

We met with Phoebe's doctor today and she has suggested two drugs. These are not new drugs - Phoebe has had them many times before, but she has never had them together. The doctors at St.Jude have found that when given together, they have a synergistic effect and have helped to put kids with mll+ leukemia in remission - for most it has been temporary, but we will take what we can get. You see, when there are so few things to choose from and no new drugs for pediatric cancer, smart doctors begin to combine things and search for solutions with what they have. We are incredibly thankful for these doctors who continue to try for our Phoebe and so many others. They have given us the most precious gift. Time. 

Our options are very limited. We have tried many things and it has been almost a year since Phoebe has fully responded to any treatment. Each time something fails, she is considered more high risk. Refractory. Incurable. This is our reality. Even if a clinical trial were available, which it's not, the fungal infection makes Phoebe ineligible. 

Phoebe is our leader and throughout this "journey" she has always led us with her bright smile and her feisty spirit. Right now she is tired and all of this is so hard on her. It is emotionally and physically exhausting. She is still feisty and bright, but she spends less time playing and running and more time sitting and just taking it all in. 

Please keep our sweet Phoebe in your thoughts and prayers. 

Hope. 



Wednesday, September 30, 2015

Roller-coaster

When I think of all that has happened these past almost 5 years, the first word that comes to mind is rollercoaster. It has been a rollercoaster of thoughts, emotions and events - there have been ups and downs, joy and sorrow, light and darkness, and a lot of the time we haven't known what to think or what to believe. It just keeps going and we keep hanging on. 

The relief and happiness we felt after hearing the bone marrow results lasted for a few days, or until we heard the chimerism. The chimerism is improved, but does not match the just 8% leukemia that was reported by MRD. We are confused and feel helpless. Add to this that over the past three days Phoebe has had blast cells show up in her labs and we are just terrified. The blasts are not consistent - the first day there was 3%, then just 1 that didn't look like leukemia, but today although there are still few, they are "suspicious for leukemia". They could be something else and in a perfect world they would be recovering cells that will mature and help Phoebe fight infection. 

Up and down and around we go. 

Phoebe doesn't know what blast cells are and if you ask her she will tell you that there are no more "bad cells", that she feels fine, and to please stop asking. She is our leader and so we will follow her, but we have been on this road for far too long to ignore the fear and the worry. 

For now, we will keep putting one foot in front of the other. Phoebe wants to ride her bike, she is eating, laughing, and playing. She has her Hallowe'en costume picked out - in fact she has permanently draped it over a chair in our small apartment in anticipation for the big day. She has also picked out her costume for next year. She is strength, resilience and hope all wrapped up in a small but incredibly mighty package. 

She is a force and we will always fight for her. I just wish there were options and solutions to this problem that at times is completely suffocating and seems insurmountable. 

Today is the last day of childhood cancer awareness month, but for us, it doesn't end here. Everyday is childhood cancer awareness day and we are surrounded by sick children who need help, more options and more funding for research. 

Please remember that kids get cancer too. 

You can help by donating blood, registering to be a bone marrow donor, donating money to an organization that helps children - like those listed at the right of this page because many large cancer charities direct very little of the money raised to kids. You can share stories of kids with cancer and wear a gold ribbon. You can help by telling your now candidate, but soon to be elected official (in Canada), that finding a cure for childhood cancers and supporting survivors should be a national priority. 

Thank-you for reading and sharing Phoebe's story. 

"Nothing can dim the light which shines from within". Maya Angelou

 

Thursday, September 24, 2015

Mae

Mae ...

Today Mae proudly walked 5km for her sister Phoebe and all of the kids at St.Jude. She raised close to $1500 by making and selling rainbow loom bracelets. We are very proud of her. 

Mae was just 23 months when her baby sister was diagnosed with cancer and like Phoebe, she has grown up and experienced many firsts and milestones in the hospital. 

Despite the struggles and heartache that have shaped her life, Mae shines. She is happy. She is like a breath of fresh air and although she is only 6 years old, she is wise beyond her years. If you ask her, she will tell you everything you ever wanted to know about the immune system, blood, children's hospitals and her sister Phoebe. 

This year has been so hard. It has been by far the most difficult despite everything we had already been through. Mae has been witness to too many traumatizing and devastating things. She has sat quietly as doctors have discussed infections, strokes, seizures, cancer, and terrible odds. She has seen her baby sister scream in pain. She has walked beside us the many times Phoebe has been transferred to the ICU. She has seen Jon and I completely broken. She has asked if Phoebe will ever come home. She has watched as Phoebe is sedated. She has wondered out loud if the Phoebe that she loves so much would come back to her after a stroke and fungal infection in the brain caused her to be unrecognizable. She has sat by and held her little sister's hand through days that would cause the strongest people to completely break down. Despite a fungal infection that has left marks and scars on Phoebe's skin that are most likely permanent - Mae sees nothing but pure beautiful and brave Phoebe. Unlike some adults who have asked, "what is wrong with your baby", Mae chooses kindness and focuses on what is important. 

Mae talks about her dreams - she too dreams of cancer and of Phoebe. She says that "the guys with swords are the bad guys, but then there are good guys with shields and they are protecting Phoebe". I hope the good guys win, she says. 

She worries about Phoebe and has asked me the most heartbreaking things these past few months. Words that I can't bring myself to write down because it makes all of this even more real and heartbreaking. Questions about life and death and heaven. No six year old should dream of cancer and wonder where her friends have gone and if they are hurting. 

Throughout all of this heartache and trauma, time and time again, Mae chooses hope.

She has helped Phoebe learn to walk again after strokes and too much time in the hospital. She is the first to cheer her sister on as she tries something new. She has patiently waited for Phoebe to be well enough to play. Time and time again. She will do anything and everything for Phoebe and she knows that she helps Phoebe to heal and thrive. Despite many opportunities to go home - Mae chooses to stay in Memphis, "because Phoebe needs me". 

I have never seen love like the love that Mae has for her sister. It breaks my heart and fills me with pride all at the same time. 

September is childhood cancer awareness month - and a childhood cancer diagnosis affects the entire family. Siblings, like our sweet Mae, are often the unsung but very brave heroes. 



Friday, September 18, 2015

Getting there ...

All things considered, Phoebe is doing well. We are still at the hospital everyday and many days are very long - some stretch into the wee hours of the morning and have us returning home when other people are getting up, but when we are home, Phoebe is up and joyful. She loves playing 'just dance', she is learning to ride a bike with training wheels, and she has started to ask her Daddy to make "his special restaurant food" - her old favourites which is a great sign that her appetite and love for food is back. Phoebe has always been a "foodie". 

Yesterday was the bone marrow aspiration and while Phoebe was sedated, her central line was replaced to hopefully avoid another infection. I have honestly lost count of how many of these central lines Phoebe has had, but I think this is number 13. We are still waiting for the chimerism results, but so far, the bone marrow looks better. Before the gemtuzomab, Phoebe had 91% disease in her bone marrow and it was a mix of ALL and AML. Today, her MRD (minimal residual disease) is 8% and it appears to only be AML. This is interesting and encouraging as the gemtuzomab is only targeting the myeloid leukemia (AML), and the concern among all of Phoebe's doctors was that it would get rid of this population of leukemia and cause the other, the ALL, to take over. This is not what is happening and so we are continuing with this treatment and Phoebe will receive 2 additional doses over 4 weeks. This result is really the effect of one single dose and we are relieved. Finally, something is working. 

Thank-you all for keeping Phoebe in your thoughts and prayers. This road is long, so much more so than I could have ever imagined. We are so grateful for the love and support we continue to receive. We are weary but hopeful. Always hopeful. And thankful for each day. 

Go Phoebe go ... 




Friday, September 11, 2015

Phoebe had exploratory surgery and a biopsy of her sinuses on Thursday. She is still recovering and her little nose is sore, often bleeding, and congested, but the ENT found no signs of a fungal infection. This is great news and Jon and I breathed out a collective and huge sigh of relief when the doctor came to give us the results. 

Our days at the hospital are long and often exhausting. Yesterday was "granulocyte day", and we were in the medicine room at St.Jude until 4:30 in the morning. Because Phoebe's skin biopsy once again tested positive for fungus, we have gone back to receiving the anti-fungal medicine daily, and as long as my hemoglobin allows it, granulocytes weekly. We are waiting for final pathology results regarding the skin biopsy and until then we are staying the course and hoping this fungal infection remains under control. 

Phoebe is tired and most days she spends her time sleeping or relaxing on the couch. She is still complaining of tummy pain and we still have not been able to figure out a cause. Because of this, she is not eating very much and with all of the trauma to her little nose, we can't put in a feeding tube. She has a lot of healing to do and we just want her well. 

Phoebe will receive another dose of gemtuzomab on Monday and on Friday she will have a bone marrow aspirate. We are hoping and praying that this drug has been successful - there is still no sign of leukemia in Phoebe's blood, so I believe it is helping. 

Please keep our sweet Phoebe in your thoughts and prayers. 

If you are in Ottawa, please attend the childhood cancer awareness event on Parliament Hill tomorrow. There is strength in numbers and we need your support. We are not able to attend this year and wish we could be there. Mae is busy drawing pictures of the Peace Tower in gold to commemorate this great event. So much hard work, love, and dedication goes in to making this event happen each year - to the "Gold on the Hill" team of amazing people - thank-you! 






Tuesday, September 8, 2015

The first day of school ...

Today is the first day of school. We didn't pick out a first day outfit and pack lunches. We didn't rush out the door to catch the school bus. I didn't drive behind the bus to see my girls reunited with their friends and teachers, and I won't be picking them up afterschool - with smiles and excitement to tell me about their day with new friends and a new teacher. 

Instead, we woke up in the hospital this morning in preparation for exploratory surgery on Phoebe's sinuses. We have been in the hospital since Thursday and things are improving, but the doctors want to be sure that we aren't missing anything - like an aggressive fungal infection in Phoebe's sinuses, and so today, on the first day of school, Phoebe was supposed to have surgery. This surgery has since been postponed because Phoebe's hemoglobin is too low and blood wasn't able to be given in time, so instead we woke up in the hospital on the first day of school for just another day of doctors, tests, blood work and a sad Phoebe who just wants to be home. 

Inspired by all of the first day pictures on Facebook, we also took some pictures, but they are not the first day pictures that we hoped to take - with both girls smiling on the front steps, or getting ready to board the school bus. Phoebe is in senior kindergarten, yet she has never set foot in a classroom or on a school bus, and this year will be the second year that Mae starts school without her friends. We are homeschooling, and even if it is between appointments and in the shadow of cancer, it is with both our girls - and for that we know we are among the lucky ones. 

Please remember that kids get cancer too. It is devastating and traumatic and just not fair and we need to do better. 3% of all federal research funds is simply not enough. It is not enough to support childhood cancer survivors, over 80% of whom are living with a chronic or life threatening long term health issue. It is not enough to cure our kids as there continue to be childhood cancers for which there is no hope of a cure and very little research to advance it, and it is not enough to ensure that all kids with cancer in Canada have access to the treatment they need regardless of where they live as this currently does not happen. 

We need to invest in research, and by doing so, invest in our children's futures, because all children should get to stand proudly on the front steps as their just as proud parents take a back to school picture. 

First day of school photos should not look like this. 









Friday, September 4, 2015

3%


Phoebe spiked a fever yesterday and is now in patient at St.Jude. Blood cultures were taken and show a gram positive infection in her blood. It looks like the same infection she had last month. 

Although she wasn't herself yesterday, she was sitting up, watching movies and asking her daddy to make rainbow loom bracelets for her. He was making them to order and she would happily show the nurses her latest one. She went to sleep with an arm of rainbow loom and woke up in extreme pain. 

Phoebe woke up in the middle of the night screaming and crying out in pain. She was holding her stomach and asking for medicine to help. Despite all that she has been through, I have never seen her scream in pain like she did last night and it was so difficult to stand by and know that there was nothing I could do to take it away. I was helpless. The pain escalated and Phoebe began crying to the nurse to give her pain medication - something else she has never done. Just writing this causes me to break down - tears filling my eyes. It shouldn't have to be this hard. Phoebe was given morphine for her pain and even after that she was still uncomfortable - grunting and moaning as she slept. 

They did an X-ray in the middle of the night, and didn't find anything alarming and today an ultrasound also showed no inflammation. 

The skin biopsy is positive for fungus. What type of fungus, we don't know, but it looks to be in the same family as the fusarium and given Phoebe's history, all of the doctors are concerned. It appears to be more controlled than when it first appeared in April - but that it is still threatening Phoebe's life is just devastating. 

Each time the doctors walk in the room I brace myself. I worry all the time. I worry about what they will say, what else have they found, what else does Phoebe have to overcome? Will tell us there is nothing else they can do? That is my fear and each day they promise to do all that they can I breathe a sigh of relief. 

Right now Phoebe is not well and we need all the love, prayers and good and positive thoughts you can send. She is in pain and needing oxygen, she is still having fevers, and her body is full of infections that she doesn't have an immune system to fight off. 

I think of all Phoebe has overcome and it both settles my weary soul and breaks my heart. I think that she has come so far - she is a miracle and so strong and she will continue to push on and fight, but then I am stopped by the pure sadness and heartache for all my sweet Phoebe has had to endure. None of this is okay and we need to do better. This is what pennies from a billion dollar research budget gives us. 

Please keep telling Phoebe's story. Help us raise awareness so we can change this story. No one should have to go through even one of Phoebe's hard days yet she lives through so many, thousands of miles from home. 

To date, only 2 federal candidates have confirmed they will attend the Childhood Cancer Awareness Event on Parliament Hill. This is two more than last year and the year before and Elizabeth May is sending a representative on her behalf, so I guess we should be happy. I'm not. For the past three years, this event has been completely ignored by the other federal leaders despite many emails, invitations, and tweets. Invitations, frequent requests to send a representative, or to simply wear a gold ribbon are unanswered. We have not even been granted a reply and I often wonder what it would take to get their attention - I wonder how they would feel and what they would do if they sat where I do right now. 

Among so many things, we need a cure. We also need treatments that don't "slash, burn, and poison" our children. Canada, we need more than 3%.






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 ...