Our flights are booked

Our flights are booked. We leave for Denver and the Children's Hospital of Colorado on Monday. We are relieved but also very anxious. We are up against incredible odds and we have a lot of hope resting in this treatment.

Yesterday was a difficult day. Phoebe had surgery to have a central line inserted. This is a line that comes out of her chest, is where all of her medicines are given and where her blood will be taken for blood work. We now avoid pokes which is nice, but it is a line that comes out of her chest ... so as you can imagine, not ideal. The clinical trial drug is a 28 day infusion that runs 24 hours a day. We hope that for most of this time, Phoebe will be able to go about her life with the medication running through a portable pump and in a backpack, but it will still be running 24 hours a day, so needs to be given through a central line. 

Phoebe now realizes that things are not as they should be and she is frustrated. Yesterday while we were waiting to go to surgery, she asked to go home, she screamed, shouted, told everyone she could to go away. We have tried to explain what is happening and what to expect and each time she tells us very clearly that she doesn't want to talk about tubies and medicine anymore. She has had enough and it is heartbreaking to think of the road that lies ahead. We are also trying to prepare Mae for this road. Little Mae who is so resilient and from whom we ask so much. Sometimes it seems that she has the weight of the world on her shoulders with this life. I wish I could make all of this better. 

We are being forced to face this reality. Phoebe's blood work looks a bit worse each day - her platelets are low and because she was having surgery yesterday, she needed a platelet transfusion, this was a first in over two years. She is now neutropenic, which means she has no immune system, also a first in over a year. The idea of traveling with a weak immune system is terrifying, but we don't really have a choice. Our appointments in Denver start Tuesday. 

So, off we go. We are grateful to have this chance. We have heard from the doctor running the trial and she is kind and welcoming and truly just lovely. We know Phoebe will be in good hands. We know that this treatment is promising. We just need it to work. We believe it will. There is no other way. 

Phoebe is feisty, but it is clear that this disease is taking a toll on her little body. She still has many moments where it is easy to forget that she is so sick and it is in these moments, where she doesn't let anything slow her down, that our hope lives. I watch her and marvel at all she is able to do despite all that she is up against. Moments like tonight, when she ran up and down the street with Mae in search of a poor little cat that wanted nothing to do with them. Or yesterday, shortly after she got home from her surgery, when all she wanted was to jump on the trampoline. Or this morning, when she woke me up bright and early, demanding her breakfast and jumping on the bed. She is my hero. 

Thank-you all for reading and sharing this story, for praying for Phoebe and keeping us in your thoughts. Thank-you for your support, it truly means so much to us. This road is long and it is hard to believe and accept that we are facing this again. Knowing that Phoebe is surrounded by love, prayers and positive thoughts helps us through.

Phoebe will ...

There IS strength in numbers. Look what we did ... 

Ontario's Minister of Health called ... he said that Ministry of Health will partner with SickKids to fund Phoebe's treatment in the US until it is open in Toronto. He said that Phoebe's story touched his heart, that he agrees that if all of Phoebe's doctors recommend this treatment then we should be listening to them, that children fighting cancer should have access to clinical trials when these clinical trials are their only option, and that the last thing we should worry about is not being able to access the one option we have to save our child.

Thank-you. 

This has not been easy and we should not have to fight so hard for access to clinical trials and potentially life saving treatment. We are grateful, but this situation has opened our eyes to the need for change.

Now that we have waited 6 weeks for this answer, we are racing. We are racing against an aggressive cancer, against time, and reality is setting in. This news is a relief, we are very thankful, and when we heard it we celebrated, but things are still very precarious. 

Today Phoebe's blood work shows elevated kidney function - her one good functioning kidney is working hard. This could be a result of the leukemia cells breaking down - and it needs to be monitored closely. Her platelets have dropped and her once healthy and active bone marrow is overwhelmed with disease. 

When we applied for funding on June 2nd - Phoebe had perfect blood work and a bone marrow that was "only" slightly filled with disease. As far as leukemia patients go, she was healthy and the timing was perfect for her to start treatment. Today, despite the fact that, in her doctors words, "she looks like a million bucks" (and she really does), she is actively fighting this monster and up against the many challenges it brings, and we are running out of time. 

What is the plan? If all looks okay with Phoebe's blood work tomorrow and for the rest of the week and if she is stable enough to travel, we will be boarding a flight to Denver or New York to start the clinical trial early next week. In the meantime, Phoebe will need a double lumen central line - getting this will be hard. Phoebe loves to swim and with this line she can't do this. I think she will be devastated and my heart breaks just thinking about her reaction. She will also need frequent blood work and we need to do a lot of things to get ready to leave. We don't know how long we will be gone which is incredibly hard to prepare for. And we worry about sweet Mae and how she will handle all of this - right now she has her bags packed for camping. 

We are anxious to start this treatment and grateful that our long wait is over. 

A special thank-you to Madeleine Meilleur MPP of Ottawa/Vanier and her office for their leadership in pursuing this and working to make sure that Phoebe's story was told and heard. 

Thank-you to every person who wrote, shared, tweeted - thank-you for adding your voices to this fight and for helping us speak up for Phoebe. Together we proved that we can make a difference. Together we made a difference. 

Thank-you to Phoebe's doctors. Phoebe has amazing doctors. They are not giving up and are fighting as we are, to save Phoebe. We can not thank them enough. They are not only Phoebe's doctors, they are her advocates and they have done so much for Phoebe and for our family. They are patient and kind and just brilliant people. We are beyond lucky to have the team of people that we do looking after Phoebe. They have given us time, hope, and another chance - over and over again. And they have done it with compassion and kindness. 

This is one step of many for Phoebe. There is a long road ahead and so many uncertainties. We are blessed to have this chance. We are blessed to have Phoebe and Mae. We are blessed to have each other and an army of support. 

We hope and pray for a million more steps forward. 

Go Phoebe go. 

Phoebe WILL 

"Love recognizes no barriers, it jumps hurdles, leaps fences, penetrates walls to arrive at its destination full of hope" Maya Angelou 

Phoebe can ...

It has been a while since I have written. There are only so many ways we can say that we are waiting. That we are worried. There are only so many times we can say that we hate cancer and that this situation is beyond devastating.

But, here we are ... still waiting, worried, frustrated and overwhelmed. We are also terrified.

If you ask Phoebe, however, she will tell you she is fine. She will tell you that she can swim underwater, that she can ride a bike and that she can jump higher than her big sister. She will tell you that she loves her new "water park" - a gift that magically appeared on our front lawn with many other treasures; dropped off by a kind and generous friend and stranger (Thank-you!). She may even show you the elaborate "Frozen" cake she has picked out for her birthday. She will tell you that she is starting school soon. When she starts to talk about starting school, it takes everything in me to fight back tears. This is all just so unfair

We heard last week that with the best case scenario, the treatment we need should be at SickKids in 6 weeks. This is already 4 weeks behind schedule. We also heard today that the leukemic blasts in Phoebe's bone marrow have increased to 80%. This is just unbelievable and not at all what we were expecting. Phoebe runs around all day and has no visible symptoms. It is heartbreaking to know that the beautiful energetic little girl that we watch play each day is slowly being taken over by this cancer while we wait for treatment.

We are adding steroids and altering the plan to exactly what has worked for Phoebe in the past, at least in the short term, and then we will check the bone marrow again in 2 weeks. If there has been no improvement, and still no hope of accessing the study drug, we may go to St.Jude for plan b. The worry, among many, many things, is that the plan at St.Jude will be harder on Phoebe and could make her ineligible for the study drug. This new drug is thought to be promising and Phoebe's best option, even though it is "experimental". After all, every cure began with an experiment. I wish Canada would realize this and help children access these new treatments. 

We feel so helpless. We are up against infant Leukemia and the Canadian government. If Canada supported childhood cancer research and recognized the importance of these clinical trials as a way to advance survival rates and find cures, we would have started treatment by now. We would have started treatment when Phoebe had less disease and therefore fewer obstacles. We are in the process of appealing OHIP's decision and I think all of the letter writing and media attention may be helping with this. We are hopeful. Thank-you to everyone who has written to their elected officials on our behalf and for those of you who plan to do so, it is not too late.

We still need a lot of things to happen. We need OHIP to reverse their decision. Or to agree to fund this treatment while we wait for it to open at SickKids. We need Health Canada to work for us and push this drug forward so that it can open at SickKids sooner than 6 weeks. We need the treatment that Phoebe is receiving to, at the very least, keep things at bay. If something happens and Phoebe is not able to access this treatment, I don't know what we will do. 

I try really hard not to dwell on all that is wrong with this. We have been on this road for too long and know too many families who wake up each day with a piece of them missing to dwell on all that we don't have. Right now we have the most important thing and that is all of us under one roof. Phoebe wakes up each day smiling and ready to take on the world, and so we do too. We may be in complete denial, but in this place of denial, we are able to cope.

We are still hopeful. Our hope for Phoebe's future and a cure for this disease has been reduced to a tiny little voice that encourages us each day to keep fighting. It is the most beautiful tiny little voice and it is also incredibly strong and wise. It belongs to Phoebe. She is not giving up and so neither are we. 

Phoebe's oncologist from CHEO and I were on CBC radio yesterday morning. Here is a link to the interview. Please listen and share. Please. 

http://www.cbc.ca/player/Shows/ID/2470161910/

Help us shout it from the rooftops. We need to do better than this.

Thank-you all for your support and for continuing on this road with us.

18 days later ...

After waiting 18 days, we finally heard from OHIP today.

They have denied our application for funding of Phoebe's treatment at Sloan Kettering. The letter outlines that the Ministry of Health does not cover anything "experimental" or done for the purpose of research. This speaks volumes to the lack of support and attention given to children fighting cancer in Canada. Children with relapsed cancer depend on research and clinical trials. It was a series of phase 1 clinical trials that gave us a year without cancer after Phoebe's first relapse. In fact, one of these treatments was brought back to Canada after the success it showed with Phoebe. It is because of advances in research that Phoebe is still here. The only way we are going to find a cure for this disease, a leukemia with little hope of a cure, that has seen no advances in treatment or survival rates in over 10 years, is through research. How are we meant to move forward if we do not invest in research? Why are we not supporting the doctors and researchers who are working hard to find cures? Phoebe's doctors are spending their invaluable time advocating for new treatments and we are all spinning tires because most of these treatments are not available in Canada or accessible to Canadians. This is not okay. 

It is not okay that we can't access the one targeted "experimental" treatment being developed for Phoebe's cancer. It is not okay that Phoebe has been without options in Canada since 2011. She and all of the children fighting cancer deserve better than this. We deserve more than 3% from the federal government, but see, this is what 3% gives us. It gives us outdated toxic chemotherapies, very little progress, and a serious lack of options and innovation.

What makes all of this crazy and even more frustrating is that this treatment is supposed to, hopefully, open at SickKids in 1-2 months. Once there, it is STILL experimental and STILL research, there will still be no published data showing success, but OHIP will cover it because it is at SickKids. They will only cover it, however, for kids who live in Ontario. This is our "universal" health care system at work. SickKids has treatments that children in other provinces cannot access. Were you aware of this? 

Each day that we wait for this treatment is one more day that Phoebe has an untreated, relapsed, and aggressive cancer. It is one more day that this cancer that we have fought for almost 4 years, can get worse, spread, and threaten her life. Each dose of chemotherapy we give to Phoebe to stop the progression of this disease, something we need to do to prevent it from getting out of control, affects her in ways that may cause her to be ineligible for further treatment. And yes, Phoebe eats a healthy and organic diet made up of whole foods that we hope will help to heal her and keep her strong. We are doing everything we can.

Where do we go from here? What is the plan? To be honest, I don't really know. Our doctor at SickKids is working hard to get this treatment to SickKids and expects it to open in about 6 weeks. The only option we have right now is to wait for it to open at SickKids and while we are waiting, continue to give Phoebe low dose chemo and hope that this disease remains under control. If the chemo proves to be ineffective or we are unable to get this treatment, we have another option at St.Jude, but this targeted therapy is preferred because it will have the fewest side effects. There are no guarantees and it is experimental, but it is promising.

We are tired and angry and we hurt for Phoebe. She doesn't deserve any of this. She has done enough - she has given 3 and a half years of her life to fighting this cancer, and she has also given this time to finding a cure for this disease. She has participated in clinical trials and she has forwarded research. Her little 26 pound self has done more to forward research and find cures than those who are appointed and elected to protect and support her.

We need our government to start caring about children with cancer. These kids are giving their childhoods, and in many cases, their lives, and in turn, they are given 3 % of federal government funding, outdated treatments, antiquated drugs, and little chance at surviving without life threatening side effects.

We are pushing forward and we are not giving up. We are determined to do what we can to cure Phoebe of this disease and to give her another chance. We are doing this for all of the sweet babies that we have met on this journey and the many others that we did not have the opportunity to meet. We need to find a cure, so that the next family does not suffer this heartache. We also need to fix this system, so that the next family does not have to fight like we have for a chance at a life with our family complete.

If you would like to help - you can write to your MP, or your MPP, and you can ask them to be a voice for kids like Phoebe. You can share this story, or share a story of a child in your community who is fighting cancer. Share Anya's story as she is also fighting with OHIP for access to promising treatment.  Yes, there are good stories too, but there are far too many like ours.

You can also ask them to join us on Parliament Hill on September 7th, for the 2nd annual Childhood Cancer Awareness Event, to show support for the thousands of Canadian children fighting Cancer. You can join us too.

There is strength in numbers. 

Still waiting ....

We are still waiting to hear from OHIP.

In the twelve days that we have waited, the disease in Phoebe's bone marrow has grown and now takes up 50% of this precious and valuable space. We heard these results yesterday and we are no longer in denial. This nightmare is actually happening. Phoebe has an amazing ability to live and thrive despite this - she looks perfect, her blood work looks perfect, but we know, because we have been here before, that if left untreated, this disease will quickly spill into her blood stream, her liver and spleen will swell, and it will become increasingly difficult to control. Had this promising and targeted therapy been available in Canada as a clinical trial, we would have started treatment by now. We would have started with a lower level of disease, giving Phoebe fewer challenges. We would not be forced to give Phoebe more of the same old chemotherapies that not only have failed us multiple times, but are hard on Phoebe's body. Drugs that still cost OHIP money, drugs that OHIP will pay for over targeted therapies that are less toxic and actually have a chance at working. If our health care system prioritized high risk cases and listened to Phoebe's doctor's pleas, that we don't have 2 weeks to wait, we would have heard by now and we would have been able to plan, start some kind of treatment, or even think of alternate ways to get this treatment at Sloan Kettering. Everything, all plans, all decisions, rest on this answer from OHIP. It is not okay that we are still waiting. It is not okay that OHIP often refuses to cover experimental treatment. How are we supposed to move forward and towards a cure if we don't support research and innovation? The clinical trials that Phoebe has participated in have been less invasive and less toxic than any treatment she has received from any approved protocol, but most importantly, they have been more successful and they have given us TIME - the most precious and valuable gift and something we are desperate for more of.

We are hanging on, some days by a very thin and precarious thread, but we are hanging on. Phoebe is the beautiful and joyful soul that she always is and we love her so much. This morning, her big sister climbed into her bed just to cuddle her and there they were when I went upstairs, arms wrapped around each other, giggling. We have been here before - 3 years ago we waited 7 weeks for a clinical trial without giving any treatment. We arrived at SickKids with a very, very sick baby, but we made it through. We have had 3 years since those very dark days. We have two kids who are growing and thriving in the face of the struggles that this life has given us. We are complete. Unlike previous relapses, we have the potential to receive a new treatment, something we haven't tried, something that is actually targeted to MLL+ leukemia. Sometimes it seems like we are not moving forward, but in many ways, we have taken huge steps. We have many things that 3 years ago we worried were impossible. At times, the future is hard to imagine, but when we do, it is still bright. 

We are at CHEO today to start low dose chemo, we are planning to do this as we wait in the hopes that we can find a balance between enough disease to qualify for the trial and enough chemo to stop the storm from raging out of control. In the meantime, we will live our lives as we have for much of his journey - with hope. We will watch Phoebe as she chooses to laugh and play despite all that is going on, and we will try to keep if together. 

Thank-you all for your support as we travel this very long journey. Your messages, comments, phone calls, offers to help, gifts, prayers, positive thoughts, and love, truly do help us through. There is strength in numbers. 

Hope

Phoebe has been busy. Since we learned of this relapse, we have been back to CHEO every other day for blood work.  All continues to look good with Phoebe's blood work and everything is within normal range. We have seen no changes. This is another small victory. With previous relapses, we have found ourselves racing against time, desperate to calm the storm inside Phoebe's little body, all while watching her tire out after the smallest tasks and looking sicker with each day. This time it is different, there are no symptoms, no signs; Phoebe runs and she plays, she is the first to wake up in the morning and often outlasts her big sister at bedtime, she is eating as she usually does - a lot, and she is joyful and feisty. What we know is happening, because we have seen bone marrow results and pathology reports, just doesn't match what we see in front of us everyday. Phoebe is not a sick little girl.

We are going to have another bone marrow test done on Thursday. We want to see what is going on. We are worried that this disease will rage out of control, but we are also worried that doing something right now, like giving a low dose chemo to control the disease, could make Phoebe ineligible for any clinical trials. When Phoebe relapsed the second time, the low dose chemo she was given ended up surprising everyone and putting her disease in to a complete remission, making her ineligible for any trials or new treatment, and so she received the same outdated old drugs that are obviously not working. Given how Phoebe's disease presented so aggressively at diagnosis and with each relapse, her doctors recognize that something is different this time. They think that there may be a fight going on between the monster Leukemia cells and my stem cells. We hope they are right and we hope that we are winning. We believe we are, even in the face of all that we know this disease to be capable of, we have to believe this. It keeps us going each day, but we are also realistic. We have fought this leukemia for too long, we have lost too many friends; we are all too aware of what we are up against. It is terrifying and we live our days in a constant state of stress and disbelief, alternating between pure joy as we watch Phoebe and Mae play, to pure heartache as we confront the harsh reality of our situation and push the impossibly difficult thoughts out of mind. We have faced incredible odds for some time now and we have tried many things.  

Despite all of this, we have hope and we have a complete family. This gets us out of bed each morning, it fuels us as we move forward with very little knowledge of where we are going, and Phoebe is its very essence. She thrives in the face of this cancer. She is bright and she is shining just like the meaning of her name. 

And so, we hope that these bone marrow results bring good news and if they don't deliver good news, then we hope that they bring us closer to a plan. We hope we are able to get this new treatment and that it is "the" answer that we have been searching for, it certainly appears to be very promising. At the very least, we hope that tomorrow brings progress and another step forward. 

We hope we finally have an answer from OHIP. Phoebe's doctor was asked to send more information today. It is not okay that we are left to wait with an acute and aggressive cancer. This treatment should be available in Canada or if not, it should be accessible to Canadians. We need to start helping and supporting the people who are working to save the lives of children with cancer. 

Here is hope personified. This is what fuels us. How can we be anything but positive and hopeful when we see these beautiful faces each day? 

Small Victories

Little by little, we are making our way through. 

Phoebe's MRI is clear. Good news. Phoebe's belly and pelvis were where she relapsed the second time, but this time, this area remains cancer free. A small victory. 

Phoebe's blood work remains good and normal. No evidence of the storm that is thought to be raging in her bone marrow. I am holding on to hope that it will not rage, but rather remain controlled, but life with this leukemia tells me that it is probably only a matter of time before we start to see signs. It is not kind or gentle. We will take this good news though and run with it as far as it will take us. And then we will run some more. 

We are looking into a clinical trial that right now is only available in NY - it is for a promising new drug that actually targets MLL+ leukemia, which is what Phoebe has. It is the first of its kind and if we are able to get it, Phoebe may be the first child to receive it. It is the first drug developed, but not yet approved, that aims to target the MLL gene - amazing and depressing all at the same time. 

What makes this complicated is that the treatment in New York would cost us every single thing we currently own and then some. It is not likely to be covered by our provincial health insurance because it is experimental and part of a research study. Never mind that it has shown success, has no side effects, specifically targets a rare leukemia that currently has a very low survival rate, could very well help Phoebe, and is one of our only options. It is expensive and innovative, so most likely not covered. Our doctors are expecting a refusal letter from OHIP. The lack of support for pediatric cancer research and children fighting cancer is simply not enough. It is infuriating and we need to do better.

Our next step is to wait for this letter of refusal and then to wait for this treatment to come to Canada. Phoebe's doctor at SickKids is hopeful and confident that it will make it there sooner rather than later, and we hope to have more answers and a plan that will start Phoebe, once again, on a path towards complete healing, soon.

In the meantime, we are enjoying every moment that Phoebe is well and supporting her in every way we can. She spends her days running and playing and I often watch her in amazement, wondering how can this be possible? I am honestly still in shock that this is actually happening. 

"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." Shel Silverstein 

Anything is possible - even the very good things.

Go Phoebe go.