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.

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.