Making plans

"To live is so startling, it leaves little time for anything else". Emily Dickinson

This is very true of our life. 

Today was hard. Lately, honestly, we have had many hard days. We are hanging on, but at times it is with very little. 

Phoebe had her bone marrow aspiration today. I had convinced myself that the results would be negative. That we were witnessing a miracle, that the remission we saw last week would be more than just fleeting. Phoebe looks wonderful. Her cheeks are rosy, her appetite is as good as always, her energy is perfect, she is a bit grumpy as the high dose steroids wear off, but when she isn't she is a beautiful and happy trooper. Her blood work today looks better than last week - there are no signs of disease. 

Yet we now have 37% leukemic blasts in the bone marrow. From nothing under a microscope to 37% in just over a week. I hate cancer. I hate it with everything I have. It is not supposed to be this way. It is supposed to be slow and calm, not another raging and relentless storm inside my child, who looks and seems perfectly fine. It is not supposed to be at all. 

On the bright side, the bright side that we can glimpse if we strain our necks and stand on the very tops of our toes - is we now probably qualify for the targeted study. This treatment is promising and targeted. Essentially it is what we have been waiting for all of these years. We have hoped for something like it with each relapse - a treatment that is ACTUALLY designed and targeted for MLL + leukemia. Not simply more drugs meant for other cancers thrown desperately at a disease we don't understand. 

We may be going back to Denver very soon. We probably should have stayed,  but at least we were able to sleep in our own beds and experience the comforts of home. For this we are grateful, as there is no place like home and nothing quite like watching Mae and Phoebe play at home. 

The plan right now is to repeat the bone marrow test again on Thursday, as unfortunately, not all tests that need to be run for the study were run. Once we know that Phoebe qualifies we will pack our bags once again. 

We are emotionally exhausted. It is hard to live with so much uncertainty. We long for stability - mostly for Phoebe and Mae.  We have a lot of questions and not many answers. We are trying to go with it and to have faith - we are living life on the tips of our toes, with impossibly strained necks, just so we can glimpse the bright side. 

When we get there it will be magnificent. 

We are thankful that despite all of this, despite this disease that just won't give up, Phoebe is well. She may have cancer but she is not a sick child. She is energetic and full of life and today as I was feeling sorry for myself, I just looked at her and Mae playing the day away and felt better. They make me smile and they give me hope. 

We are also grateful for the support and love being sent our way, for the messages, donations, garage sales, and events that are in the works or have already been held for Phoebe, really mean so much to us. We are doing what we can, but knowing that we can travel this road together without the worry that we will lose all that we have at home in the process, is a huge weight lifted. We read each and every comment and they truly help us through. Thank-you. 

One of the blessings of this life is the beautiful and truly amazing people that we have met. The families that we have met on this journey go out of their way to help us and to help others despite all that they are going through and it warms my heart. It is a beautiful community of people that I am grateful to be a part of although in many ways I wish didn't have to exist. When you share a tiny room in the midst of an impossible crisis, the bonding and friendship is often immediate and life lasting. 

Refuse2Lose Team Bryce - our dear friends who do so much for children fighting cancer in memory of Bryce Jude, a remarkable and unforgettable little boy,  are organizing a "Dine for a Cause" dinner and silent auction on August 28th at Biagio's Italian Kitchen on Richmond Rd. For more details and to purchase tickets, please click here

The Shouldice family, our roommates and friends at CHEO, have dedicated this year's John Shouldice Memorial Golf Tournament on Tuesday August 26th to Phoebe. This is an annual event with proceeds each year benefitting an oncology family. 

For more information, please visit: 

http://m.ottawacommunitynews.com/sports-story/4649487-john-shouldice-memorial-golf-tournament/

or contact Mike Shouldice at johnshouldicememorial@gmail.com

Thank-you.

Home again

We are home and happy to be here despite not knowing how long we will be home for or where we are off to next. Home is the best place to be and it is where Phoebe and Mae are happiest. We also came home to our grass cut, our fridge stocked with the essentials, our car cleaned, and our basement organized - we were exhausted so this was a welcome and beautiful sight. 

We had a visit to CHEO today. Phoebe's blood work looks okay. She is almost neutropenic but her platelets and hemoglobin are on the rise. She is keeping us on our toes and it is hard to tell what is going on in her little body. Her oxygen saturation level is normal - this was an issue with the pneumonia in Denver so is good news. Her liver and kidneys look good. She looks good, albeit a bit tired. She should be tired though as she has been up past midnight for the past two nights. Up past midnight laughing and talking about what she wants to do for her birthday, for Halloween, for Christmas - she has it all planned out.

Go Phoebe go. 

Our next visit to CHEO will be Tuesday for a bone marrow aspiration. The results of this test will give us a sense of what is going on, and they will hopefully lead to a plan. We have decided that if the results show less disease, we would like to pursue options that will keep Phoebe in remission rather than wait for relapse. If the results show more disease, we will simply wait until there is enough for the trial and hope we can still get in. 

We are happy to have options. Three years ago almost to the day, is when Phoebe relapsed for the first time. I will never forget that day as it holds so many of the reasons why we keep fighting. We have had 3 wonderful years when all statistics and data suggested we would have none. Of course we will keep fighting for more. We have learned that there is value in research and innovative treatment and these treatments have given us the most precious gift of time. 

To people looking in from outside, our life seems messy and chaotic and stressful, but to us, right now, it is whole. It is all of those other things too but we are together and complete, so it is good. 

Maybe this next fight will give us another three years. Maybe it will give us a lifetime. We certainly hope for a lifetime. 

"Is there any medicine in this whole world that will help Phoebe? There should be". Mae Doull-Hoffman 

Yes, there should. And we have to believe there is. 

She believed she could ...

Our time in Denver is coming to an end. We have enjoyed our stay here although it has been busy and filled with the usual bumps. We saw things that we don't see at home, we took in the breathtaking beauty of the mountains, and Phoebe climbed some mountains of her very own. 

We have been living an uncertain, and what can only be described as a roller coaster kind of life for the past three years. This roller coaster is full of ups and downs and twists and turns, it is fear inducing but there is also joy. Phoebe brings the joy. She laughs through the bumps. She smiles and laughs and runs and jumps through pneumonia and leukemia and at times, it is just unbelievable. That she can be so "well" yet also so sick. 

We repeated the bone marrow tests yesterday and the preliminary results are in. Under a microscope, no leukemia cells were found. This means, that technically, Phoebe is in remission. It also means that right now we don't qualify for the study. We know, because we have been on this road before, that just  because no leukemia cells were found under a microscope, doesn't mean that no leukemia exists at a lower level. Given how aggressive Phoebe's disease is and that these cells were there just last week, we know that there is likely something lurking but we need a lot of disease to qualify for this study, so we are a bit stuck. Again. 

Today has been a flurry of activity and our emotions are all over the place. We can't believe after how hard we fought to get here that Phoebe may not get this treatment - or that she won't get the treatment here. As much as fewer leukemia cells makes us happy - we know that standard treatment will not help Phoebe and that is all we are left with right now. That and waiting for disease and another relapse so we might qualify for a clinical trial. Imagine knowing your child has an aggressive disease and not being able to do anything about it but wait. It is excrutiating. 

But ... we do get to go home. We think we may leave tomorrow or the next day. We are not quite sure of the plan. Right now it seems that the plan is to go home to monitor disease and to wait for relapse or disease progression. 

You may be thinking that we should be happy and we are - Phoebe is here and thriving and of course we are happy, but we are also exhausted. The research we need is behind Phoebe. We have also tried many things and when you have tried many things and are in the place we are in you hear many times how small the chances may be and how data and statistics are not in your favour. And when these things that we try continue to fail and things do not work in our favour, we worry that these great doctors that have been working and advocating and fighting for Phoebe, will deem it too difficult. We worry. All the time. 

We are in a place where there is no right answer. Where there is no set path. It is a place of extreme frustration, but it is also a place of beautiful hope. Phoebe has proven once again that anything is possible.

Through leukemia and relapse after relapse after relapse, she proves that anything is possible. 

On a lighter note, a little story about Phoebe's experience in Denver. When we arrived she was on steroids and feisty. She brought new meaning to feisty. She fought constantly with her doctors and nurses and like a school teacher told her new and very kind doctor that "she was on red " and also that she "wouldn't be getting a check" ... then after a sedation while her nurse was helping her to get dressed and commenting on how big she is for a four year old, Phoebe sat up straight, pointed her little finger at this nurse and said "I'm three. And I'm not going to see YOU when I'm four". I guess she was right. Unlike we had expected, we will not be in Denver for Phoebe's fourth birthday. 

Thankfully, the folks in Denver also got to see a bit of happy and joyful Phoebe, when the effects of the steroids finally wore off.

Go Phoebe go.

"She believed she could, and so she did". 

Climbing mountains in Colorado ...

Yesterday, we had a day off from hospital life. We took a drive to the mountains. The narrow road weaved through beautiful red rocks that towered as high and as far as we could see. Mae and Phoebe sat in the backseat in awe and for a moment we were just a regular family on a road trip. We climbed up a huge flight of stairs to the Red Rocks Amphitheater - Phoebe climbed up most of these stairs by herself and Jon and I exchanged looks as she did, both of us thinking - how can this kid possibly be as sick as she is? Later in the evening, Phoebe played with Mae and ran around our little hotel suite laughing. She ate and then ate some more and all seemed right in our little world. 

Shortly after bedtime, Phoebe's daddy noticed that she just didn't seem comfortable. She didn't have a fever, so we thought maybe she was having a bad dream, but as the night went on, her breathing became labored as if she were in pain. Jon stayed awake all night to make sure she was okay, and good thing he did as at 3am she had a high fever and we were rushing to get her to the emergency room. Her little body was hot to touch. We put her in the stroller and I got ready to take her to the hospital. As soon as we got to the elevator, Phoebe realized that Jon was not with her and started to cry for her daddy. I worried she wouldn't calm down and things would get worse, so we did a quick switch and I watched from the window as Jon sprinted across the parking lot and towards the hospital. Super Daddy. 

What happened next I can imagine was terrifying. Phoebe's breathing was labored, her heart rate high, she was upset and angry and was so exhausted that she was drifting in and out of sleep. All of this and they were both in a completely new and unfamiliar place. X-rays were done of her belly and lungs, blood cultures were taken as Phoebe now has a central line which is always at risk for infection, and antibiotics were started. Jon and Phoebe spent the night in the emergency room and were finally moved to the BMT unit at 8 in the morning ... exhausted. 

Today, Phoebe is her usual spunky self, albeit a bit tired. She has been without a fever since late morning and is on antibiotics. It looks like she has something in her lungs - it could be an infection or it could be leftover from the croup that Phoebe had a couple weeks ago. It may be pneumonia so that is what she is being treated for right now. She is in the hospital and will remain until the blood cultures are back and she is without fevers. Any kind of infection in a little person who has a recovering and weak immune system is dangerous and it is hard not to worry. 

This is just one of the things we are dealing with right now ... we also have the other much bigger problem of the relapsed leukemia to contend with, and in typical Phoebe style, things are a wee bit complicated. The results from the bone marrow are in and Phoebe has just 3% disease. This is a huge decrease from the 85% of the last test and is quite remarkable and completely unexpected, especially given how little time has passed since the last test and that Phoebe has only received steroids as treatment. It does mean, that right now, Phoebe does not qualify for the study, so while it is good news, it is also not very good as this treatment is promising and we want Phoebe to receive it. Only in the world of relapsed leukemia and clinical trials are we left wishing for more disease. All of this said, we would much rather deal with 3% than 85. 

We are doing another bone marrow test on Monday and all of Phoebe's doctors plan to regroup once we receive these results to look at all of the options. There has been talk of remission, of Phoebe's immune system still having an effect on this leukemia and while we are in uncharted waters and there is so much uncertainty, it is clear that since Phoebe's first relapse and this second transplant, things are different. With Phoebe's first relapse, things spiraled out of control so quickly. There was no stopping the disease as it raged out of control. With these past two relapses, something is keeping things under control and we hope that this means that Phoebe may have other options to rid her little body of this terrible disease. 

We are thankful for the ever growing and fantastic team of doctors that Phoebe has on her side. They have been nothing but wonderful here and often ask us - "what else can we do to make all of this easier for you". And then they do everything they can to make this easier for us. 

We are positive and hopeful and Phoebe is living up to her reputation. Always showing us the way. 

Go Phoebe go. 

Denver Hope

We made it to Denver and are getting settled. The hospital is beautiful, bright and friendly and Phoebe's new doctor is kind and welcoming. She is also very understanding of this place we are in and we spoke quite a bit about quality of life while we are here - about how when you get to this place, the place of clinical trials and few and last options, there is so much uncertainty but also a great need to live life and make the most of it - this means keeping Phoebe out of the hospital as much as possible and doing what we can to make this easier for us and Phoebe. She mentioned road trips, exploring, and VIP access to the zoo. We plan to try to make the most of our time here so it was wonderful to see that this doctor recognizes the need for special moments on this journey. She also spoke of hope and this promising treatment - telling us that the other child currently enrolled is doing very well and in some adults, there have been complete remissions. 

Hope. 

Mae is excited to be here, she loves staying in hotels and meeting new people. Phoebe, on the other hand, is grumpy, moody, and upset, and although there are moments where we see joyful Phoebe, she is not herself. It is the steroids and we hope happy Phoebe comes back to us soon. We are starting to wean her off of these drugs today in preparation for the study.

Tomorrow Phoebe will have another bone marrow test, a lumbar puncture, and an EKG - these tests are all to determine if she qualifies for the study. If all goes well, we will start treatment on Monday, or possibly sooner if we can. 

Tonight, Phoebe ate her weight in guacamole and when she isn't shouting at us, she is laughing. Despite the steroids, she seems good. Her blood work today looked good. Her platelets are up which is a surprise but a good one that we will take. Miss Phoebe is full of surprises and she is clearly not done showing us the way just yet. 

We are thankful for all of the love being sent our way. I know I say this a lot but it truly does help us in so many ways. Thank-you for holding us up and helping us through. 

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.