So long 2013

So long 2013. 

As far as years go, or at least our years since Cancer, this one has been okay. It was spent watching Phoebe fight cancer, but our good news far outweighed the bad and we glimpsed hope and promise on the horizon. Promise of a future without cancer. 

Perhaps 2014 will be our year. 

2013 began in the hospital with a large leukemic mass that filled Phoebe's abdomen and pelvis. The mass didn't grow in 2013, only shrunk, and the superstitious person in me, says that this is a good sign. 

In 2013, our family spent 2 and a half months in Memphis TN at St.Jude Children's Research Hospital. We hoped for a clinical trial but were both relieved and disappointed to learn that despite still having small amounts of disease, Phoebe did not have enough to be eligible for any experimental treatment. We were left with the same drugs and the same treatment that had already failed us twice. Cancer often leaves us wishing for strange things like more cancer to treat the cancer and always frustrated with the lack of available options. 

Phoebe underwent ten days of focal radiation, she had her 9th double lumen central line inserted with expectation of a third transplant, only to have it removed six months later and replaced with a port. 

Despite a devastating relapse and some very dark days where it seemed Phoebe's belly and mass grew before our very eyes, chemotherapy and what can only be explained as a functioning and powerful immune system that still recognized the cancerous cells as foreign, caused the mass to shrink completely, the disease to disappear from bone marrow and for Phoebe to see complete remission once again. Much to the surprise and amazement of her doctors. 

In 2013, against all odds, Phoebe turned three. 

She learned to ride a tricycle, to jump, she had her hair cut for the first time. Her dark curly locks fell out with treatment and were replaced with very blond, a bit wild, and mostly straight hair. 

The Peace Tower was lit gold for Childhood Cancer awareness. This was the work of the childhood cancer community and although the event was well attended and covered by most local and some national media outlets, not a single politician came out to show support, leaving much work to do in 2014 to make sure that not only do they show up, but they too wear gold, listen and take action. 

Mae turned 5; she had her very first birthday party with friends. 

Phoebe sat on Santa's knee, decorated the Christmas tree with Mae and together they celebrated a first Christmas at home. 

In 2013, we were once again left to search for options to treat this leukemia that has been plaguing us for over three years. We were reminded that we are at the mercy of drug companies and governments and the paltry 3.13% of federal funding that is directed by the Canadian government towards pediatric cancer research is not even close to being enough to attempt to cure, or even treat our child. Instead, we were left to search elsewhere and to travel to St.Jude for treatment.

In 2013 we were supported, strengthened and loved by incredible friends and family. Phoebe was cared for by truly wonderful doctors, nurses and nurse practitioners, many of whom advocated on her behalf for treatment and continue to do so. 

In 2013, we lost too many friends to cancer and to the devastating side effects of its treatment. 

2014 is on the horizon. A new year, a fresh start, a chance to do good, to make a difference, to resolve to change bad habits or develop good ones. A chance to be happy and healthy. 

I need 2014 to be our year without chaos and cancer and chemotherapy. We have had news of a cancer diagnosis or a cancer relapse every year for the past three and we need a year (or many) to catch our breath. A year to put our broken pieces back together and to repare the damage that life with cancer has caused; not just to our hearts and souls, but to our lives, our emotional and financial stability, our futures. I hope to be able to squeeze some work next year, whatever that may be, into Phoebe's schedule and to help ease some of the financial stress that has been caused by this cancer (I would love to do some more writing). 

I hope we can continue to move forward and away from reminders of the wreckage that cancer has caused our family. I wish for the good news of 2013 to carry through to the new year and the future. 

More than anything though, I wish for Phoebe to start school, to make friends, to grow and to thrive.

I wish to watch her grow up and run to catch up with her big sister. 

I wish you all a happy and healthy new year. 

A few photos of our 2013 ...

Busting out of CHEO in January 

Dancing on the banks of the mighty Mississippi

Getting ready for another round of radiation at St.Jude 

A break and a first time for little feet in the ocean 

Home and bike riding 

Three 

Light the Hill gold 

Cutest Zebra ever

Shoveling 

First Christmas at home 

'Tis the Season

Phoebe is doing well and on her last visit to CHEO, all looked good. Her blood work is back to her normal, we lived through another five days of steroids, and if all goes well, we will not return to the hospital until after Christmas.

In the meantime, Phoebe has been loving life. She has checked a few more things off of her list of firsts and we are all just relieved and happy to be cruising towards 2014 without the chaos and heart ache that filled our days last year.

The events of this time last year and the second relapse that seemed to come out of nowhere, are still very close in our thoughts. It is like our family experienced a trauma, and although most of us have no physical scars or obvious wounds, we hurt and we need to heal. It is stressful and overwhelming and difficult to think about how quickly our lives were turned upside down and the likelihood that it could happen again. This is our year, our year to heal and to make holiday memories that don't include the hospital; memories that aren't grounded in fear.

Lately Mae has been asking a lot of questions about Phoebe's illness and talking about the things that she remembers. It is enough to break my heart over and over again. She mentions Phoebe being really sick. She talks about spending time in the hospital. She asks if there will be a time when Phoebe won't have to have pokes or visits to the hospital. She cries and tells me that she doesn't want anything bad to happen. It is heart breaking, there is no other way to describe it, and I wish so much that she didn't have these worries or fears. We may be on a smooth path and doing well, but the fears and memories of what was and what could have been never really go away. For any of us.

The many families we have met throughout this journey, families who are spending their Christmas without precious loved ones, or spending the holidays in the hospital, are never far from my thoughts. We are thankful and blessed to be together and here and to do simple things like watch Mae and Phoebe decorate the tree for the first time. This is a memory that I will always hold close. Phoebe telling Mae very matter-of-fact that it is "her first tree, you know" and Mae telling her about the other trees we have had. Jon lifting them both up to put the angel on top. I never really realized how truly special moments like these are until we didn't have them. Each moment is a gift. 

In other Phoebe news, she is still in love with Santa and she has revised and asked that we rewrite her letter to Santa almost daily. The most recent revision was done because "my daddy needs slippers. Me and he really needs them. Write it to Santa". Always thinking of others, that's our girl. 

We are so excited to watch Mae and Phoebe experience more firsts together, as it should be, this Christmas.

Merry Christmas! 

On New Year's Day, Phoebe's crazy and wonderful Dad will be jumping in to the frozen Ottawa River to raise awareness for childhood cancer. He is doing this in honour of Phoebe and the many friends we have met on this journey and he is also raising money for pediatric oncology programs and research in Canada via the Sears Foundation. Jumping into the frozen river in minus many degrees below zero weather seems a bit nuts to me, but when I asked Jon if he was sure he wanted to do this he said - "it is nothing compared to what Phoebe goes through". And then he added "I'm going to do it in my underwear". Go Jon go.

If you would like to learn more, come out to cheer, or donate, please visit this link.

Day + 730

Today marks 730 days of new life, new cells, a second chance, renewed hope and growth.

Phoebe received her second life saving transplant two years ago today. This second year has not been without bumps. In fact, the word bump does not even come close to describe the chaos and heartache that rocked our world this past year. We trudged and trudged through relapse, radiation, and more chemotherapy. We moved away from home and outside of Canada once again with hope of a cure. We worried about failing kidneys, side effects, blood infections, and more cancer. We wondered whether or not we were doing the right thing. We struggled with the reality of decisions that were made in desperation. We said good bye to any real hope of Phoebe ever having biological children. We struggled with decisions to give more chemo and the need to resort to radiation. We mourned the loss of many friends. 

We gave thanks for each day and we celebrated life. Pure and simple. Second chances became third chances and Phoebe once again taught us the power of hope and love and strength. 

We held on. Breathless and fearful, but we held on. 

The road became easier, gentler, and with each good test result, more hopeful.

I still wonder if a day will come when I will no longer feel Phoebe's tummy while she sleeps, her lymph nodes, listen to her breathe, and search for clues and answers to calm my worried mind. I do this each night in silent longing for everything I touch to be "normal" and because I just can't help myself. After all, a massive leukemic mass grew in Phoebe's belly, crushing her kidneys, yet remained undetected until it was nearly too late. This will never happen again. 

Sometimes I feel like I am holding my breath, rushing through the days so that we can get closer to solid ground. Then something as simple as watching Phoebe and Mae play stops me in my tracks.  

They play and laugh and fight and love each other and I realize that we are as normal as can be. Or as normal as possible under the circumstances, with trips to CHEO, St.Jude and biweekly chemo thrown into the mix.

We had some normal today and a beautiful memory. 

Today Phoebe sat on Santa's knee for the very first time. With Mae by her side she marched up to him and boldly told him that she would like him to bring her three dollies. To this he said, "3 dollars? Would you like to ride the subway?"

A funny Santa made my day. That and the smiles on Mae and Phoebe's faces. And 730 days of life. 

And this, the cutest Rudolf ever. 

Better

Phoebe has had a rough week. Steroids on top of fighting a cold, she was miserable. This combined with the worry about last week's blood work made for some sleepless nights.

I am happy to write that the steroids are finished for another month and Phoebe is already on her way back. Unlike other courses of steroids when she has been too depressed to eat, this time around, she ate her way through the sorrow and has finally surpassed 12 kilos. Just. She is 12.1. 

We had a visit to CHEO today for blood work and an infusion of immunoglobulin. Phoebe's blood work looks much better this week. Her platelets are on the rise, still low for her, but on the rise which is good news. Her bone marrow is making these important cells. Her white count has also come down a bit and her cold is improving. All good news and a great big sigh of relief from me today. 

We are back at CHEO next week for more chemo and more blood work. In the meantime, we are celebrating Mae's fifth birthday and hoping to forget about cancer for another week, or as much as that is possible. 

It has been a while since my last post and for most of that time, all has been going very well. Phoebe has been to the hospital for her regular visits, and when not there, she has been growing and thriving as any three year old should.

Last week she had a lumbar puncture with chemotherapy at CHEO and since then, she has been a bit off. The lumbar puncture is usually one poke or needle in the spine and once the needle is in, chemotherapy is injected into the spinal fluid, the purpose being to target the central nervous system as this is an area that Leukemia likes to hide and therefore a common site of relapse. Phoebe also had disease here at diagnosis. Because we have a blood-brain barrier, our brain is protected from harm but this also means that the chemotherapy that is given through the blood stream does not penetrate this area, so we have lumbar punctures and chemotherapy. This all makes me nauseous and the morning of this test I was feeling especially anxious. Despite the number of times that Phoebe has had this procedure done, it still makes me nervous. This time around I just kept thinking of something that one of Phoebe's doctors told me once. She said it is 80% skill, 20% luck. 20% luck is not very reassuring when the tiny spine being punctured is that of your child.

This lumbar puncture was unlucky, I guess. The first needle wasn't in the right place, despite being in Phoebe's spine and so another needle and another doctor gave it a try. The second time was successful, but Phoebe was left complaining of back pain.

The back pain was followed by complaints of mouth pain unrelated to the LP and chemo, but still a cause of worry. The mouth pain was followed by a runny nose and congestion and then today a cough that sounds like croup and now the mouth pain is throat pain. All of this on top of a particularly rough week of typical toddler bumps and bruises and an irritible Phoebe has left us all exhausted and worried.

We had a scheduled visit to CHEO today for blood work and chemo and because of Phoebe's symptoms, a visit with the doctor. Phoebe's blood work is off. Her platelets which normally sit at at least 300 dropped to 92 and her hemoglobin also dropped a bit. It is worry on top of worry on top of anxiety on top of just pure desperation. We long for normal, we are desperate to stay on this smooth path and although we believe and are incredibly hopeful, we can't help but worry that heartache and chaos will strike again. Christmas is coming and there is nothing I want more than for my family of four to stay as far away from the hospital as possible at this time of year. If and when we do stay far away from the hospital at Christmas, it will mark Phoebe's very first Christmas in her own bed, under her own roof, with her family.

This drop in counts could be and is probably related to the virus that Phoebe is fighting or it could even be related to chemo. It is "normal" to see a drop in platelets with a virus and chemo, but Phoebe is not normal and so my mind races to those very dark places and I worry. The phrase "worried sick" was probably coined by a frantic and anxious mother (or father) with a sick child. Phoebe's platelets last week when she was not fighting a virus were normal as was her hemoglobin. Her body is probably tired as it should be, a lot is expected of it. Her body is expected to fight cancer and everything else that a three year old might pick up, all while still undergoing chemotherapy and acting completely normally and full of energy. We expect a lot and Phoebe usually delivers. She is as normal as normal can be despite chemotherapy, lumbar punctures, and the incredibly long history of treatment that she carries with her.

The plan is to bring Phoebe back in a week to check her blood again and hope that all is back up and back to normal. I hope that what she is fighting passes quickly and that she is back to herself. I find myself frantically asking her to tell me how she feels, looking for clues and she normally responds by laughing at me or ignoring me, but then will tell me very matter-of-factly that something is wrong. This morning when she discovered she had a croupy sounding cough she said "something is up with my mouth! What is going on!?"

Today I was hoping that the blood work results would calm my worried mind, but instead they did the opposite. They showed that Phoebe is fighting something, that she has reason to be acting unlike herself. Despite all of this, that Phoebe is feeling unwell, she still received her biweekly doses of chemotherapy and today she will start steroids. We expect a lot from her and I can only begin to imagine how exhausted she is. 



Making our own fun after five hours in an isolation room at CHEO. Mae finally go Phoebe to wear a mask! 

Phoebe writing :) 

Three years ...

Three years ago,almost to the day, I brought my newborn baby to her family doctor for a two month check up. It was this check up that would change our lives and send us down the path we are still traveling, and in some ways, will probably always travel. I remember the doctor feeling Phoebe's lymph nodes and when she got to the ones in her groin, squeezing a walnut sized lump and saying "this isn't normal". That was all she would say, that and that our lymph nodes are part of our lymphatic system and then she uttered one word, "bone marrow". My heart sunk and my mind searched for answers. Looking back, I had no idea the severity of what she was saying.

A week and three trips to the hospital later, Phoebe was diagnosed with cancer. Three trips. We brought Phoebe in when she spat up what I was sure was blood, but was later assured it was "just bile", another visit came after she stopped having bowel movements. Ten days without a single one. Our final ER trip before diagnosis was for a fever. It was on this visit that the ER doctor told me that he knew what my family doctor was thinking but that "cancer in someone as young as Phoebe is so rare it is practically impossible" and sent us home. In fact, we were sent home without any tests run each time, and the person I am today wants to scream at the person I was then, but instead, I left the hospital after each visit clinging to the hope given to me by those ER doctors. Desperate to believe that my baby was okay. That is was just bile, gas, colic. That Phoebe was simply working things out in her tiny self. That it was okay to not have a single test run. I convinced myself that they were the experts and that they knew what was best.

The day before we went in for the blood tests and ultrasound, ordered by my family doctor. Tests we waited 8 days for. I remember thinking that based on what the ER pediatricians were saying, Phoebe didn't need the tests. I wondered if I needed to or should put her through the poke and ultrasound. Thank God I did as she was dying. We had no idea the severity at the time, but she was critically ill and had been for weeks. The results of blood work showed a white count of 698,000. Phoebe had virtually no platelets and her hemoglobin was dangerously low. She was at risk for a stroke at any moment and we had no idea. This still blows my mind. How could I have been so blind? I ask myself this often, I also ask it when I remember the giant mass that was growing before our eyes yet amazingly undetected in Phoebe's pelvis, and I always come up with the same answer. Phoebe is a super hero. She has an uncanny ability to look "well" when she is anything and everything but. 

The rest of this story is history but each year, as we approach this unfortunate anniversary, our  "cancerversary" as it is referred to in the cancer world, I feel the need to rehash these events. I relive the guilt and the heart ache and I am soothed by the intense hope and belief that I feel; that despite our rocky start, all will be okay. I just can't help but wish things could be different. 

Then I think about Phoebe.  I think about all that she has been through, about all of the memories we have made in the face of cancer and the things we have experienced and I am calmed. She is here. I take a great big heaving sigh of relief. We have a beautiful family. We have a lot to be thankful for. All of this doesn't negate the past or make it okay. It will never be okay, but it makes me feel better. It is therapeutic. Phoebe doesn't deserve any of this, but more than that, she doesn't deserve to or need to relive the past and the mistakes that were made. And for every mistake, there have been many blessings and more days filled with luck. 

We have dodged what at times has seemed like a million bullets and every day without cancer, we dodge a few more.

I have learned more in the past three years than I would have thought possible. Besides learning how to care for a very sick child, I have learned to follow my instincts. I knew that something was very wrong with Phoebe. I tried every way that I knew to get answers. I brought her to the doctor, I asked questions and I returned home with very few answers. So I brought her again and again and I tried to follow my instincts. This lesson has helped us the most throughout these three years. Knowing the importance of speaking up led us to search for second opinions after Phoebe's first and thought to be fatal relapse over two years ago and it was this determination and persistence, with the support of Phoebe's doctors, that helped to save her life. I only wish I had learned it before those initial visits. I wish I had asked for tests rather than let myself be calmed by the words of well meaning doctors.

This story of multiple visits to the ER before a childhood cancer diagnosis is not unique to my family. It is a story that is told often by cancer moms and dads. Childhood cancer is not rare. It can happen to any child, any parent, at any hospital, in any city or town, and it is important that we are all aware of this. Had Phoebe been diagnosed on our very first visit to the ER, she would not have arrived in critical condition, she would not have needed to spend over a week in the ICU, her leukemia may not have penetrated her central nervous system, her white count may not have required an exchange transfusion to become manageable and to simply begin treatment. Listening to and hearing my fears and concerns, really hearing them, would not have changed the outcome, Phoebe was always going to have cancer, but it would have helped.

Phoebe had her biweekly chemo on Friday and began her steroid pulse. She is moody, depressed, extra feisty, and overall just seems a bit "off" but hopefully will be back to herself soon. If all goes as planned, we have just over 4 months left of this phase of treatment and potentially this amount of time left for any kind of treatment. I can't imagine giving Phoebe more chemo and I honestly don't think her little self can take anymore, so I hope and pray that this is it. 

On our recent trip to St.Jude I heard the words "uncharted territory" a few times. I heard this spoken by doctors who see many unique patients like Phoebe. Doctors who I am sure have charted a few unfamiliar waters themselves. I am learning to embrace these uncharted but thankfully relatively calm waters, but it is hard not to know what to expect. Phoebe's doctor in Toronto told us recently that one of the clinical trials we had hoped Phoebe would qualify for after her second relapse has now reopened. It closed after an unexpected and unrelated death and was expected to reopen in February of 2013. Thank goodness things worked out as they did and we weren't relying on this for treatment as we wouldn't have been able to wait this long. The business of clinical trials is hard and frustrating and the most stress I have ever felt and hope to ever feel was after Phoebe's first relapse, waiting for the one remaining spot in a shot in the dark phase one clinical trial, all the while begging the heavens above that it would save Phoebe's life. I never want to be back there again. The other clinical trial we had hoped for - the very promising one using modified t-cells, will be offered at Toronto SickKids in 2014. It is reassuring to know that steps are being made towards a cure, but these trials are just that - trials. They are only available to the children who have exhausted all conventional therapy, and they come with a long list of criteria. Getting in to a clinical trial, when you are in a race against time and cancer, is akin to winning the lottery. I hope that these promising trials make their way to mainstream treatment so that children like Phoebe who are left without options no longer have to grasp at straws and battle for remaining spots. So that they become options for all children. For this to happen we need greater awareness and more funding for pediatric cancer, among other things. But we're making progress.

October 26th is Phoebe's official "cancerversary" - on this day, take a moment to reflect on what you have to be thankful for. Hug your kids, your parents, your pets, your friends. Do some good. Spread some kindness in honour of sweet Phoebe Rose and her friends. As always, thank-you all for following Phoebe's journey. Your support, love, encouragement and prayers are truly what has gotten us through these past three years.

Free and Clear

We are back from St.Jude and all is well. 

Everything went smoothly apart from the fact that Phoebe greatly missed her Daddy. While we were there she had a visit with her transplant physician and nurse practitioner, she was excited to see them both and they were happy with how well she is doing. Despite the chemo that Phoebe has and continues to receive, her immune function tests are normal, which I believe came as a pleasant surprise. She has a lot of healthy, cancer fighting and very important t-cells. Great news. 

She had her bone marrow aspirate, a lumbar puncture and an MRI. She was sedated and woke up happy and ready to eat. She munched on sushi in the hospital cafeteria and got right back to playing as soon as possible. Mae came to Memphis with us and I am so glad she did. She brought the joy and helped Phoebe deal with her difficult and long day of tests. 

All results are negative. Phoebe's spinal fluid is clear, her bone marrow is MRD (minimal residual disease) negative, her belly is free and clear of disease. She has 100% donor cells in her bone marrow and blood. No mass, no cancer, no leukemia. Great news. So much to be thankful for. 

The MRI does show iron overload on Phoebe's liver and a kidney that is still very much atrophied and may never recover. These are all things, in addition to the bigger and scarier things, that we will continue to monitor with the help of her amazing team. 

Our next round of tests will be done at St.Jude in January. In many ways it is easier to travel to Memphis for these tests as they know Phoebe and her unique situation best. We are always greeted with such warmth and kindness from everyone we meet. True Southern hospitality at its finest in a place I am so thankful exists. We love St.Jude. 

Another three months of life is upon us. Three months without cancer with hope for a lifetime. 

Happy Thanksgiving y'all, there is so much to be thankful for.