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.

Monday, December 30, 2013

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 


Saturday, December 21, 2013

'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.















Sunday, December 1, 2013

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. 



Friday, November 22, 2013

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. 

Friday, November 15, 2013

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 :) 

Tuesday, October 22, 2013

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.



Thursday, October 10, 2013

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. 






Friday, September 27, 2013

September

It is almost the end of September. Childhood Cancer Awareness Month. I have been reading a series of blog posts this month, put together by Mary Tyler Mom - a wonderful childhood cancer advocate and fellow "cancer mom" who lost her beautiful daughter, Donna, to brain cancer. For the past two years in September, I have read Donna's Cancer Story, a heart breaking yet beautiful and inspiring story. Each day of Donna's story is a month of treatment and life and is written by her Mom. This September I read this, but I am also reading the September Series . Each day brings a different childhood cancer story, written by mothers, fathers, a grandmother, a doctor - all people who have been touched by childhood cancer. I am grateful to Mary Tyler Mom and each of the writers of these stories for sharing and shedding a light on childhood cancer and the need for greater awareness.

The stories are hard to read. They are painful and heart breaking and at times while reading I found myself gasping for air, openly sobbing as many stories hit so very close to home. One story in particular is about the only child I have found to relapse just like Phoebe did. Beautiful Lilli, who is now greatly and profoundly missed. Despite the sadness that these stories evoke, they are also incredibly inspiring and captivating. They are full of love and hope and life beyond cancer and grief. Jon and I have read a few together and they have brought up memories of Phoebe's treatment, things we have pushed to the back corners of our minds. It is hard to believe all that Phoebe has been through and we don't often talk about the darker days. It has been therapeutic. 

Some of these stories are still with me. I carry them around everyday, thinking about the children they are written about, thinking about their parents, wishing there was something I could do, going over detail after detail of Phoebe's treatment and worrying. What if. What if we haven't done enough? I haven't scoured the internet lately for new trials and treatment, what if we are missing something? What if the chemo is making things worse. Should we be doing something else? What if it comes back? What if, what if, what if.

The excessive worrying is probably also due to the fact that in a little over a week, we will travel to Memphis and St.Jude for another round of tests. A bone marrow aspiration, an MRI, and a lumbar puncture to give chemo and to check Phoebe's spinal fluid. All of these tests will be looking for cancer. When (because they will be) they are clear, we will have another three months of life without cancer. Another three months to watch our little girl grow and live and love life to the absolute fullest. And then we will go back again for more tests. My hope is that once we have completed treatment,  eventually three months will stretch to six months, then six months to once a year, and eventually, maybe, hopefully, to an even longer period without testing. A life time. And maybe, just maybe, Phoebe's doctors will once again talk of a cure and Phoebe together in one sentence. They have been hesitant to do this since this second relapse, but when they see her some speak of miracles, of how she continues to surprise and others speak of how far she has come. They still believe.

So for now, I will take the three months, the biweekly and sometimes more often trips to the hospital, the chemo, the hurt, the guilt, the fear and worry, and I will hold on to hope because within this time and since this relapse, we have packed in so much life and we have been able to watch Phoebe do things that I once worried would be impossible. And I know that right now, we are among the lucky ones. 

About some of those things that Miss Phoebe has been doing ...

Yesterday while I was making dinner, I looked out the window at Mae, Phoebe and their cousin playing in the yard. Phoebe running so fast that she looked like she might take off in flight shouting "Mae - I will catch you!". And she did.

Last week Phoebe ate more food at dinner than her dad, Mae and I combined and this was done without the help of steroids. I watched her gulp down milk, and clear her plate of its second helping after also having a first course, remembering a time not too long ago when we measured her intake in ounces, happy if she drank a single one while counting the number of cheerios she consumed and considering the juice of a watermelon as liquid. She is growing albeit slowly so I have no idea where all of these calories go. She does jump and run around a lot. 

Phoebe has sat on the potty more than she has not, and I have thought that she was fully potty trained a handful of times now. I'm ready to throw out the pull ups but we fall off the "potty wagon" about once a month. This month due to a urinary tract infection. Most months it is steroids that does it. When she does go, the look of pride on her face is just beautiful. 

Last night we went to meet the teacher night at Mae's school. Upon returning home, Phoebe told her Daddy that she would be in that class next year.

Phoebe has started to talk about having cancer. Out of the blue, one day she told me quite matter-of-factly that she does not have cancer anymore. That her strong cells go "pow pow" (she tells me this while punching the air with her little fists) and that she is okay. If we talk about going to the doctor, she gets very upset and tells us that she is not sick anymore, that she is going to the doctor just so they can see how big she is. 

This summer, Phoebe went down a water slide, she learned to ride a tricycle, and together with Mae, they brought sunshine to each day.

As September comes to an end, please take the time to read the September Series and Donna's Cancer Story and share these beautiful stories. Stories are so powerful and personal and they can move mountains - they are moving mountains. More people are aware of childhood cancer and my hope is that this awareness will lead to action. The common thread of many of these stories is the simple fact that not one of these moms or dads thought that they would ever be a "cancer parent". I can tell you that this was once the last thing on my mind and now it is all that I can think about. It can happen to anyone. Any child. Any family. 

Thank-you for continuing on this journey with us. 

P.S. 
Our garage sale for St.Jude raised $1383! Thank-you to all who came out despite the rain. And it rained all day. If you would like to give please follow this link http://fundraising.stjude.org/site/TR?px=2109846&fr_id=4820&pg=personal

"If you light a lamp for someone else, it brightens your path too" ~ Buddha



Sunday, September 15, 2013

Phoebe's St.Jude Garage Sale ...



It has been a while since I have written an update on Phoebe, which is a good sign. Phoebe has been doing very well. She has enjoyed her summer with Mae and we have avoided the hospital as much as possible.

We visit CHEO about once every two weeks for blood work and chemo and so far Phoebe seems to be tolerating the chemo relatively well. Or as well as can be expected given that it is chemo. Her liver enzymes were elevated last month and we are not sure if it was chemo related or a virus, but they are on their way down. Her kidney function was also elevated but is also on its way down, so her doctors are not concerned. I, on the other hand, have a hard time not worrying about what all of this chemo is doing to her body. I wish there was another way, or at the very least, some answers or data as to how effective all of this extra chemo will be. I wonder often if it is doing more harm than good. These drugs have been given many opportunities to cure Phoebe and each time have failed, but our reality is that we have no other choice but to continue on and hope that each test and each MRI remains negative. So far so good ... 

Phoebe's next MRI and bone marrow aspirate will be done at St.Jude at the beginning of October. Mae will be joining us and she is especially looking forward to being back in Memphis and talks often about all of the fun things she wants to do while at St.Jude. It is amazing to me, how many good memories she has of the time we spent there and I think it is a testament to the efforts made by the staff at St.Jude to make it a place of healing for every family member. I will always be grateful for how warmly Mae was treated while we were there, she was embraced by an extra large and beautiful extended family. 

Next weekend, to raise money for the St.Jude Memphis half marathon that Team Phoebe Rose Rocks will be running in December, we are holding a garage sale. All of the money raised will go to St.Jude and their efforts to find cures for pediatric cancers. My family has greatly benefited from the work being done at St.Jude as have many other families, not just in the US, but around the world. St.Jude openly and freely shares the research that they do with the world and have been behind many advances made in the treatment of childhood cancers. To name a few ...

St. Jude has developed treatment protocols that have helped push overall survival rates for childhood cancers from less than 20 percent when the hospital opened in 1962 to 80 percent today.

Protocols developed at St.Jude for treatment of childhood cancers are used at hospitals around the world. 

In 1962, the survival rate for acute lymphoblastic leukemia (ALL), the most common form of childhood cancer, was 4 percent. Today, the survival rate for one form of this once deadly disease is 94 percent, thanks in part to research and treatment protocols developed at St. Jude.

During the past five years, 81 cents of every dollar received has supported the research and treatment at St. Jude.

There is still much work to be done and St. Jude recently completed an extensive expansion program that bolstered the hospital’s research and treatment efforts. The expansion included an on-site facility for the research and production of highly specialized treatments and vaccines; an expanded Department of Immunology; and a new Department of Chemical Biology and Therapeutics for discovery of new drugs. New drugs, so important as currently very few new drugs have been approved for use in pediatric cancers in the past thirty years. 

St. Jude pioneered a combination of chemotherapy, radiation and surgery to treat childhood cancers.

Research done at St.Jude showed that personalized  chemotherapy can improve the cure rate and avoid the use of radiation in the treatment of Acute Lymphoblastic Leukemia, therefore diminishing the severity of long term side effects.

 St. Jude was the first institution to develop a cure for sickle cell disease with a bone marrow transplant and has one of the largest pediatric sickle cell programs in the US and Canada.

St.Jude has an international outreach program to improve survival rates of children with cancer worldwide, through the sharing of knowledge and information. There are currently 20 official   partner sites in 15 different countries around the world. International Outreach helps partner medical institutions develop tailored evidenced-based protocols for treating children with cancer and other catastrophic diseases. St. Jude physicians serve as mentors to physicians at partner sites and consult on difficult cases. St.Jude also partners with local fundraising foundations that support the medical programs. This model has proven to be highly effective in providing children in developing countries access to modern treatment and care.

St.Jude is a truly remarkable place and I am very happy to be giving back to this hospital that has given us and so many other families hope. While we were there we witnessed the work of many incredible doctors and researchers and the treatment that Phoebe received is now being trialled in Canada. Knowledge is constantly being shared to benefit other children with cancer. 

If you would like to help, please stop by our Great New Edinburgh Garage Sale, at 124 Keefer St., off Chricton Ave. There will be delicious baked goods, Mae, Phoebe and friends will be serving up lemonade, and we will have treasures galore! Not to be missed! 

If you are unable to come and would like to donate, please visit:

http://fundraising.stjude.org/site/TR?px=2109846&fr_id=4820&pg=personal


Sunday, September 8, 2013

Our Childhood Cancer Awareness Rally was a success! Tonight the Peace Tower was lit gold in honour of the many children who are fighting cancer, the survivors and the many children who are deeply missed.

It was beautiful and powerful and a truly amazing night. Many people came out to show their support. Hundreds of people. I am overwhelmed with how well it turned out.

The Rally went from a petition to light the Peace Tower gold to a beautiful showing of support and awareness for children with cancer on a national stage.

The guest speakers shared important and invaluable insight into the challenges that families, researchers, doctors and children face in the fight against cancer.

The kids in attendance had a blast with Monkey Rock Music, Rock the Arts Puppets, crafts, face painting and delicious treats.

There was a beautiful candlelit tribute in honour of the many children who have lost their lives.

And then the Peace Tower was lit top to bottom in gold. It was beautiful. It was the product of the hard work, persistence, determination and strength of the childhood cancer community and supporters. The Childhood Cancer Foundation of Canada sponsored the lighting as a tribute to the many Canadian children who have been touched by cancer.

I hope that this event will bring greater awareness, which will result in more funding, more research, better treatment options and ultimately, a cure. We need these things. Throughout my own personal journey with childhood cancer, I have met many determined people. Doctors, nurses, researchers, parents, siblings, advocates, patients all working towards the same goal of making this better, some working around the clock to save a child, advance research or make a family comfortable. I believe that it is these people who are going to cure cancer. It is these people who are going to make it better, but they need our help. The Peace Tower lit up Gold tonight, it was beautiful, it raised awareness, but it is important to note that it was not the Prime Minister of Canada that chose to light it gold in support and acknowledgement of children touched by cancer., it was the collective voices of the childhood cancer community and supporters, pleading for help.

We need to keep the momentum going. Please support the people working to save and improve the lives of children with cancer. Help to change this story. To make treatments and new therapies available for every Canadian child, to advance research, to allow survivors of childhood cancer a chance to grow up healthy and happy without the burden of long term side effects. Please give to organizations that support childhood cancer research and support initiatives. Help us change this story so that every child diagnosed with cancer has the opportunity to grow up. Kids can't fight cancer alone. If you are reading this, I know you know this. Now we need to let everyone  else know.

Thank-you to everyone who came out to show their support on Parliament Hill tonight. You made us proud.

Photo credits: Chris Hofley www.hofley.com









Monday, August 26, 2013

Childhood Cancer Awareness Rally on Parliament Hill

Join us on Parliament Hill this September 8th, from 6-7:30pm. We will be shouting it from the roof tops.

Kids get cancer too.

We have a fun night lined up. The much loved and very entertaining, Monkey Rock Music will be performing. Rock the Arts Puppets and Molly Penny will be there. There will be crafts, face painting and guest speakers.

Our goal is to raise awareness. To share the message and the hope that greater awareness will lead to increased funding and more research. A cure. That 3.13% of funding from the Canadian Government and only two drugs approved for use in the treatment of pediatric cancer in over twenty years is not enough. That too many children are suffering and dying from this disease and we need a cure. Or at the very least, we need a greater hope of a cure that will come with new therapies and drugs and advances in treatment.

I need to know that if something else happens to throw us off of this smooth road, that there will be something out there to cure Phoebe.

Please join us and help to raise awareness. What better place to share this message than in front of Canada's Parliament Buildings? Where it all happens. We hope that the people who make things happen are listening.

Wear gold or yellow and bring a lawn chair or blanket to sit on if you would prefer not to stand.

Phoebe, Mae, Jon and I will be there to greet you.







Friday, August 16, 2013

Go gold ...

Sitting here at CHEO waiting for Phoebe's blood work results and listening to a little girl screaming in the room next to us. Her screams reduced me to tears. She cried out for nurses to stop, to wait, that she couldn't take it anymore, that it hurt, then she cried for her hands. She just wanted to see her hands. Earlier in the day, Phoebe's nurse was reduced to tears at Phoebe's screams. Phoebe is so used to being poked and prodded that she rarely asks nurses to stop, or says she has had enough. She just cries. Today she was poked twice for blood work. Cancer is especially ugly today.

Phoebe's blood work results show extremely high liver enzymes. Her doctor suspects that she may be fighting a virus, but she is showing no signs or symptoms other than these very high liver enzymes. Phoebe's liver works very hard, it needs to to clear all of the chemotherapy and medications that she receives. It has been through a lot and we need it working well to continue on this path. Each time we hit a bump in this road, I worry. We have dodged many bullets and the fear of the unknown is real and terrifying. We are testing for viruses and will recheck her liver again next week. If the results are still high, her chemo will be put on hold. Fighting a virus and healing a tired liver is dangerous when you add toxic chemotherapy.

Phoebe's other blood work looks good. Her platelets are a bit lower than they are usually but are still normal, and her white blood count is also a touch lower than it is usually, but is still relatively normal.

September is Childhood Cancer Awareness Month. Please don't forget that kids get cancer too. Please honour these young people, that are fighting for their lives and living through so much pain. Honour their families. Phoebe has fought cancer for most of her life. We are grateful for each day but we live in fear. We rely on advances in research as without them, Phoebe would not be here. Plain and simple, she would not have survived her first relapse.

Awareness is key and there are many things that you can do this September to help.

You can tell the stories of children with cancer, you can wear gold, you can donate blood and/or platelets, you can register to become a bone marrow donor. You can give to an organization that supports childhood cancer research and children fighting cancer. Many large cancer organizations like the Canadian Cancer Society and the Leukemia, Lymphoma Society give very little towards children's cancer research.

You can attend our Childhood Cancer Awareness Rally on September 8th on Parliament Hill and like us on Facebook for more information and updates. www.facebook.com/gogoldcanada.

You can come to The Big Rig in Ottawa on September the 3rd between 3-4pm as Ottawa Mayor Jim Watson proclaims this day as Childhood Cancer Awareness Day. Phoebe Rose will be the Candlelighters' Ambassador and we are very honored to be involved. Thank-you Candlelighters for all that you do for families and children fighting cancer.

We need this story to change. Children should not be spending beautiful summer days screaming for help in a small hospital room.

I would love to hear about what you are doing to raise childhood cancer awareness this September.





Wednesday, August 7, 2013

Phoebe is Three!

Phoebe turns three today. She is busy and joyful and always has something to say. She is boisterous, tenacious and so much fun. She is amazing and has come so far. She is full of life. She is mine, and so I am biased, but she really is something special.

Each year we celebrate with Phoebe is amazing. We are so grateful to be able to watch her grow and thrive, despite all of the ups and downs and challenges that her life has brought her. To watch her you would never know the challenges she has faced, and if you ask her, she will tell you that she is just fine.

After what Phoebe has been through to be here, each day is a big day and reason for celebration, but birthdays are extra special. I have been reflecting a lot recently on Phoebe's journey and on all of the people we have met who have helped her to be who she is today. We have a lot to be thankful for and many people to thank.

I always come back to St.Jude and all that they have done for our family. I don't know where we would be without the doctors and staff there. They saved us when we had nowhere else to turn, and they kept our family whole while doing it. I have decided to give back to this wonderful hospital in a way that I know how, and so I am running the St.Jude Memphis half marathon in December. It will be the second anniversary of Phoebe's second and more successful transplant. A transplant that we hope will continue to save her and keep her cancer free.

I made a short video to honor Phoebe's journey to age three. She has endured more in her three years than most people will in a lifetime and yet she continues to smile and take on everything that is thrown at her. She inspires me.

Happy birthday bright and shining Phoebe Rose.

I have been having some technical difficulties on this site lately, so once again you have to copy and paste the links.

Below is the link to the video:

http://www.youtube.com/watch?v=4HcMx3aqMLM

And here is the link to team Phoebe Rose Rocks, running for St.Jude

http://fundraising.stjude.org/site/TR?px=2109846&fr_id=4820&pg=personal

Thank-you for continuing on Phoebe's journey with us ...



Friday, August 2, 2013

Music to my ears ... go Phoebe go

All is right in our little world today.

First thing this morning, Phoebe woke up and wanted to sit on the potty (this makes for big news around here), she did indeed sit and has been, in her words, in "big girl underwear" all day long. I am very proud of her. Despite my requests and efforts for her do this in the past, like everything else, she is doing it on her own time and in her own way. And that is okay.

This afternoon, we got results from Phoebe's MRI and lumbar puncture. Phoebe's spinal fluid is clear and the MRI is normal. Normal. That word is music to my ears. The MRI is a test that is particularly stressful for me. I feel like we can handle nasty cells in the bone marrow (although I hope we never have to), as that is what we have been handling and dealing with for so long, but nasty cells in the belly, I am not so sure. I am so thankful for this good news.

Our next test will be a bone marrow aspirate, at the beginning October and it will be done at St.Jude. We are looking forward to seeing familiar faces and being back at this wonderful hospital. Phoebe is particularly looking forward to visiting the zoo and riding the horse and carriage in downtown Memphis.

Today we have had big and small victories. And tomorrow I know we will have more.

Go Phoebe go ...

We are still working to light Parliament Hill gold this September, but I learned recently (after speaking to many different people in many different government departments) that to light the Peace Tower from top to bottom gold (like was done in blue for Prince George), it will cost $14,000.

I don't think that there should be such a huge cost associated with raising awareness, especially when the point of increasing awareness is to hopefully encourage an increase in funding for childhood cancer research. The Canadian Government, through the Canadian Institute for Health Research, dedicated only 3.13% in 2006-2012 to finding cures for the twelve unique cancers that affect children. Thousands of children are living with cancer in Canada today, and many, like Phoebe, are unable to find options to treat their disease at home. We need to do better. And so, we are thinking outside of the box, and trying to come up with ways that we can light the Hill gold ourselves. We have some ideas, so stay tuned.

In the meantime, if you have not yet signed or shared the petition to light Parliament Hill Gold, please do. And if you have signed and shared, please share again. http://www.change.org/en-CA/petitions/light-parliament-hill-gold-on-sept-21st-for-childhood-cancer-awareness







Sunday, July 28, 2013

Phoebe and Mae go camping

We had our first camping trip and now I can say, without a doubt, that if you ever find yourself stranded in the woods, or on a deserted island, Jon is someone you will want to have on your team. The man is very handy and can put up a giant tarp perfectly as a storm approaches, in seconds. Seconds. We brought along a camp stove (or I should say, I brought this), and Jon refused to use it, cooking everything on the open fire. He made campfire coffee actually taste good. Although we were far from stranded, as our car was parked a short walk away, I was glad to have him as my camping partner.

I can also say that Mae is perhaps the world's greatest camper. She is enthusiastic, happy, helpful, and never complains. Through rain, uncomfortable pillow-less sleeps, mosquito bites the size of Oreo cookies, she still sang the praises of the great outdoors. Phoebe not so much.

Phoebe said about an hour into our trip, after the tent had been set up, beds had been made and dinner was on the fire. "Are we going home?" Then at bedtime she really wanted to go home. She wanted her bed and her books and her nighttime episode of Max and Ruby. I think if Phoebe were ever to be stranded in the woods, Max and Ruby would be who she would like to join her. Phoebe asked to go home quite often but eventually warmed up to the idea of camping, and when she wasn't asking about home she was trying to have fun. In hindsight, perhaps camping while on steroids is not much fun, or perhaps so much new is hard to take in all at once.

This weekend everything was new for Phoebe. She slept in a tent for the first time. Sat in front of her first campfire. Had a first taste of campfire cooking which she loved. She roasted her first marshmallow. Experienced bath time in the outdoors, or lack thereof. She had to quickly get used to walking over rocks and tree roots after losing her footing a few times. She eventually took it all in stride. She created a stage with Mae on an exposed rock and put on shows, complete with dancing and an enthusiastic audience. They played hide and seek, relaxed in a hammock, we took long walks and in between the clouds and rain, we found some time at the beach.

Phoebe and Mae tasted s'mores for the first time. Phoebe picked out the chocolate and threw away the rest.

All mood swings, steroids and requests to go home aside, we had a great weekend. We expected Phoebe to love camping as much as her sister but she doesn't and that is okay. Maybe she will love it when she has a chance to go without her steroids on board, or maybe she will always prefer home. We made the most of the camping trip that we were able to take right now and I am grateful that we were able to camp at all.

On to the next adventure!












Sunday, July 21, 2013

Phoebe and her friends sent me ...

Thank-you to everyone who has signed and shared the petition to light Parliament Hill Gold. We are now close to 900 signatures. I wish we had more, and I can't understand why after all of my and others' constant tweeting and sharing we don't have more. (I am on twitter now, and not quite sure what I am doing, but if you wish to follow I am @jennydoull1). I hope that as the momentum grows so will the number of people signing and sharing and that we can make this happen. We are moving a mountain, and I am learning to be patient. I just want the world to know how hard these kids fight just to be kids. They really shouldn't have to fight so hard.

If you haven't signed the petition yet, please do and if you would like to help us make this happen, you can also write to your local MP - tell them Phoebe and her friends sent you and that they want and deserve a cure and some attention. Tell them that you too would like to see greater awareness for pediatric cancer and that you would like to see Parliament Hill lit up gold. Tell them that children shouldn't have to suffer as they do to be cured of this disease. Tell them that cancer is the leading cause of disease related death among Canadian children. Tell them that too many children are dying of cancer and that we need better and more targeted therapy.

I believe that together we can make this happen. Are you with me?

The link to the petition: http://www.change.org/en-CA/petitions/light-the-parliament-hill-gold-we-will-light-the-hill-gold-on-sept-21st-for-childhood-cancer

As for Phoebe, she is doing very well. She is having fun just being a kid and growing and learning everyday. She has been swimming, to the beach, we are going camping this weekend for the first time as a family of four, and I am really excited. I am also very aware of how blessed we are to have these moments.

We will be celebrating Phoebe's third birthday very soon which is simply amazing and quite miraculous. Two years ago, almost to the day, we were told to take our baby home and enjoy her. That there were likely no options to cure her of her disease and very little hope.

Today, thanks to options, hope, research, persistence, a bit of luck, a lot of support and prayers and some incredible doctors, she is here. We don't know what the future holds, but as long as Phoebe is here and fighting, we are blessed.

We believe.

A big thank-you to Daun Lynch and her friends - they have just completed their ride across Newfoundland to raise awareness for childhood cancer. I am so grateful for all that they have done. To read about their journey, please see www.ridingforphoeberose.blogspot.com. Mae, Phoebe and I have really enjoyed following their adventure through the blog!





Thursday, July 11, 2013

Light Parliament Hill Gold and other things ...

This week has been difficult; waiting for results, the stress and anxiety that comes with that and yesterday we heard news that one of Phoebe's little friends passed away. Brave Molly Campbell. Our family was truly blessed to have met her and her family in Memphis and I will never forget them. They are a beautiful family and Molly was a courageous and amazing little girl who inspired so many. My heart is heavy. This road that we are on is one that no family should have to travel, and what the Campbell family has endured, no family or child should have to endure. It is all too much.

Since our journey began, many of the friends we have met and loved with the same diagnosis as Phoebe, are no longer here. Piper, Matthew, Wesson, Ella, Molly. Beautiful, energetic, brave, captivating children. It is hard not to worry. Hard not to wonder if our time will come. And we do worry about that. Every day. We worry every time Phoebe sleeps in late, eats too much to show a bloated belly, or too little, every bruise and bump, every change. The mother of one of these beautiful babies once said to me when I met her for the first time at St.Jude, she said; "I wonder and worry all the time ... when is my baby going to die". It is all too much and we need to do better.

For many of these babies, it was not Leukemia that ended their lives, but the treatment used to cure. You see, the treatment used for Infant ALL is not targeted to the genetic mutation that many of these babies have. It is, in my opinion, a shot in the dark. Drugs used to treat various other types of Leukemia are used in higher and more frequent doses for infant Leukemia. The treatment is so intense that many babies are seldom out of the hospital and they suffer severely. Many of these drugs were developed over 25 years ago and come with a list of possible complications so long it makes me shudder to think about it. Brain damage, infertility, secondary cancers, lung disease, heart disease, growth deficits, hearing loss ... and the list goes on and on and on. Reading the list when we began this journey, I wondered - why are we doing this? Why are we putting our baby through this? And then I learned very quickly that we had no other choice. Without these second hand, antiquated, adult drugs, our baby would die.

And so, with these treatment options, some babies are cured. Many are not. Some babies develop devastating and life altering long term side effects from this treatment meant to cure them. And for those with infant Leukemia that relapses, the treatment options are few and ineffective and often, all that is left are straws to grasp and talks of time. We have been grasping at straws for two years and frankly, I am sick of it. Sick of the lack of attention paid to the children who are fighting cancer. Frustrated by the band aid approach to treating pediatric cancer. Tired of the lack of change. How many years should pass before something changes? How many children need to suffer? I am tired of watching my baby and other children suffer. Of reading about families who are left to pick up the pieces and live their lives without precious children. Or families and children living with devastating long term side effects. I am so tired of worrying, but in many ways I am thankful for the worry because it means that Phoebe is still here.

I wonder sometimes, what it would take to open the eyes of those who have the power and influence to make change. To open the eyes of drug company executives and those in government to the reality of childhood cancer. How would they feel when offered a protocol for treatment of their child that had more chances to harm than to cure. A protocol like Phoebe's with a 10% chance of success and enough toxins and chemotherapy to kill an adult. A protocol using drugs that are 25 or more years old and used to treat other cancers? Or once they had exhausted all conventional treatment, how would they feel about having to pound the pavement, to raise money for research in the hopes that they could beat the clock. How would you feel? I feel overwhelmed, exhausted, weary, hopeful, worried, and most days I feel like screaming. Screaming that this is not good enough. My baby deserves better. The babies and children that we have met on this journey, deserve better.

How can you help? If you feel strongly like I do, that we need a cure, and that the facts surrounding pediatric cancer, the leading cause of death by disease for children in Canada, are shameful, you can share the stories of children who have been touched by cancer. You can raise awareness. If one more person becomes aware by reading this blog, then I have done well. You can donate to an organization that raises money specifically for childhood cancer research. In October, the world is showered in pink (in fact the world is often showered in pink). I support breast cancer research and the need for breast cancer awareness, but sometimes I wish that the world could also be showered in gold. Gold, in case you are not aware, is the colour of childhood cancer. September, is childhood cancer awareness month. I hope this September will be showered in gold. I hope that Gold becomes as recognizable and synonymous to childhood cancer as pink is to breast cancer. I hope. I hope. I hope.

You can help light the world gold by signing this petition. http://www.change.org/en-CA/petitions/light-the-parliament-hill-gold-we-will-light-the-hill-gold-on-sept-21st-for-childhood-cancer
It is to light Parliament Hill Gold on Sept. 21st to raise awareness for childhood cancer, to honour those children fighting, the survivors, and the children who are no longer with us. It has been circulating for over two months now and has just over 300 signatures. Just 300 signatures. This speaks volumes. Please take the time to sign.

Today, we are one of the lucky ones. Today, Phoebe is here and she is thriving. Truly and miraculously thriving. Today and every day, I am thankful. Today, Phoebe's bone marrow results have come back negative for Leukemia. The MLL gene that plagues us is undetectable by minimal residual disease. That's right, it is negative. Today we have given cancer another swift kick to the curb.

If you would like to send Molly's family a message of support or perhaps donate aeroplan miles or funds to help them return home, please visit www.mollycampbell.ca

Wednesday, July 3, 2013

A few things ...

Phoebe had her bone marrow test yesterday and the sample has arrived at St.Jude. We should know something next week or the week after.

We are anxious - actually this is an understatement, we are a lot anxious but holding on to hope and watching our girl shine.

Phoebe is finished her pulse of steroids for this month. Tonight at dinner, she ate more fish than the rest of our family combined, and she may have also eaten her weight in cheese today, but she has been incredibly moody and often inconsolable. I am hoping that she is on her way back. The days she is on steroids are particularly difficult because she acts similarly to how she did when she was sick. The bad kind of sick. Every month we are shocked back to those days that were filled with so much worry and fear. We are thankful when she is back to herself, but it can't come soon enough and the fear truly never disappears.

Tonight Phoebe took her weekly medication like a big girl, from a teaspoon. She is very proud and now takes all of her medications by herself, including her steroids which come in pill form. She just picks them up and pops them in her mouth. I am also proud, but wish she didn't have to learn these skills.

We will continue to hold on to hope as we wait for these results. They will be good. Please keep Phoebe in your thoughts and prayers.




Friday, June 28, 2013

Croup, last day of school, and more waiting

We almost made it two weeks without a visit to CHEO. We were so close, but on Wednesday in the very early morning, Phoebe woke up with croup. She also had a fever, so off we went, our bags packed, to the emergency department. It was our shortest visit to CHEO ever and we were in and out in just over 3 hours. Phoebe got a mask to help her breathing, a dose of steroids and Tylenol, she was poked, her blood work was done which showed perfectly normal counts, and off we went. I left CHEO with a smile on my face and a bounce in my step. Even Phoebe was excited. "We don't have to sleepover?" she asked. And then she said excitedly, "we get to go home!" as we left the hospital and headed to the car. It would be my first visit to the hospital with Phoebe for something "normal". She was not hooked up to a ton of machines and admitted, I wasn't questioned by multiple doctors about her and my history and her disease, instead we saw one doctor, who was not an oncologist, and we got to sleep in our own beds.

It is the little things.

Phoebe was back at CHEO today for her monthly chemo and a visit with her doctor. Her blood work continues to look good and normal. She is scheduled for the repeat/redo bone marrow aspiration on Tuesday and we are all hoping that her cough will be completely cleared up or she may not be able to have the procedure as it requires sedation and going under sedation with a swollen airway, like that caused by croup, is very dangerous. I mentioned to Phoebe's doctor that to wait any longer for this test and results will turn me into a stressed out mess - or even more so than I already am. This waiting and this cancer is wearing me down. She commented that I would not be the only one stressed. The stress, it seems, is shared by all of Phoebe's doctor friends. We need these results soon and we need them to be good and free of Leukemia. The idea of monitoring Phoebe closely with these tests only works if we get results. And not far from anyone's mind is the monster that is Infant Leukemia.

In other, very big news, Mae had her last day of school yesterday. Her first year of school, a year that has been filled with many ups and downs, has flown by. We said good bye to her wonderful Kindergarten teachers and I had a hard time keeping my tears at bay. We were blessed this year, with an army of support from Manor Park School, and to know that Mae was going to school in a place that not only understood what she was going through, but supported her and encouraged her to share Phoebe's story, truly meant the world to us.

Phoebe is very happy to have her sister home and we are excited and hopeful for a fun-filled and uneventful (of the hospital variety) summer.




Monday, June 24, 2013

Swim Phoebe Swim

The wait is over and yet we have no results. The sample that was taken at CHEO and sent to St.Jude (that was also possibly diluted) was not enough to run the RT-PCR test (the minimal residual disease test) and so next week we will be testing again.

Next Tuesday, Phoebe will have another bone marrow aspiration and the sample (which will hopefully be good and plentiful), will be sent to St.Jude and we will hopefully know soon what the MRD results are. These results are especially important as they are the most sensitive and are looking for leukemia at a very low level.

For now we will hold on to the one piece of good news from this bone marrow test. That is the perfect chimerism, and hope that this delay and mix up will not cause any problems. We will hope that when we finally get all of the results, they will be negative.

In other news, and in many ways this is the most important news - Phoebe went swimming yesterday!

Last night as her Daddy put her to bed, I listened as she told and retold the events of her exciting day.

It went something like this. In the cutest voice ever.

"Daddy, I went swimming today. In Granny, Grampa's pool. I wore my puddle jumper. I swam all...by...myself! Daddy ... I also jumped into the pool. All by myself, Daddy. Mae went swimming too. Mae wore her puddle jumper too. Daddy, you swam under the water. I kicked my legs. Like this ... (sound of wee legs kicking the mattress). Like this Daddy (more kicking)."

And on and on she went.

If I could bottle up the joy that Phoebe expressed yesterday as she got into that pool, or the wonderful and joyful energy she created for the people around her. If I could bottle it and share it, I think I could make the world a better place.

It was magic.



Wednesday, June 19, 2013

Jump Phoebe Jump

We are still waiting for MRD results of Phoebe's most recent bone marrow aspiration, but so far the news - although complicated which I will explain, is good.

The chimerism results are in, and Phoebe continues to have 100% donor 2 cells in her bone marrow.

What makes this complicated is that the sample of bone marrow that was taken at CHEO last week was diluted with blood. They still sent it to St.Jude and St.Jude still ran the tests, but their lab is unable to determine whether or not it is purely bone marrow. So, although we will still wait for the final results to come in, and this initial news is good, the test will probably have to repeated. Sigh ...

All test results, hospital visits, and cancer treatment aside, Phoebe is amazing. She is growing - a whole 3 cm in the past few weeks and she appears to learn a new word every day. And she has learned to jump. A bit later than most, but she makes up for it by jumping all day long. If you even so much as mention jump in her presence, she will stop what she is doing and jump for you. She has now caught up, if not exceeded her milestones, and we are very proud of her.

This Saturday in Ottawa there is a great event -"Clutter and Cupcakes". It is as good as it sounds, and all proceeds go to Candlelighters and CHEO. There will also be a lemonade stand for Miss Phoebe. Special thanks to the organizers, the wonderful Gabriella's Groupies, for thinking of our family. For more information see the photograph below.







Tuesday, June 4, 2013

Steroids



Phoebe's latest masterpiece. It is a picture of the four of us dancing :)


We are finally finished a five day course of steroids and I can't wait to get my baby back. I don't know if I have mentioned this yet, how much I dislike steroids, but I do. I hate them. They are used often in leukemia treatment as they kill white blood cells and although they have proven effective for us in the past, they are by no means a cure for this awful disease.

These past five days have transformed Phoebe into a very different child. No longer the independent sweet and feisty girl, she is clingy, weepy, and desperate to be held all day long. She would be happy to only eat olives and demands them for breakfast, lunch, and dinner. To say no to her, as that would be logical and is maybe what some of you are thinking, would cause her to cry inconsolably. She has little control over her own behavior and once the steroids run their course she is back to herself, so instead we just ride it out and make frequent trips to Farm Boy.

When not eating olives, she uncharacteristically naps and is often sleepy. And when not napping, she is running around the house, arms flailing and hitting, shouting that Mae needs a time out. "Timeout Mae! Timeout, time-out, timeout!!!". This happens at least ten times a day, but as soon as we drop Mae off at school, Phoebe asks to pick her up again. And then she asks all day long. She is depressed. Sad. Lonely. And this is all thanks to steroids.

I don't know how we ever did long stretches of steroids. Twenty eight days of high dose steroids. How in the world did we do this? But then I can ask that question of all of this.

We just did and we do and although I have had moments over the past five days where I have wanted to lock myself in the bathroom just to get a bit of peace, I am still grateful. I often think of what one very wise mother and friend once said after saying goodbye to her precious baby. She said, be thankful for even the most difficult days because if they are over, you will miss them and long for them too.

And so we will welcome our angry, clingy, insatiably hungry, moody, olive eating, aggressive yet beautifully cuddly toddler for five or more days each month and we will keep holding her tight.

Some good news (other than the news of the end of steroids) is that we have now graduated to biweekly blood draws, or we will graduate if we can make it two weeks without any thing happening. We are due at Cheo again on the 14th and will also be getting another bone marrow aspiration sometime around then too. The bone marrow samples will once again be send off to St.Jude for testing.

Please keep Phoebe in your prayers, this is another very important test.

We are also amazed and overwhelmed (in the best way) at the support our community continues to give us. There are two fundraising events being held in Ottawa, this weekend and next. Funds raised at these events will allow us to pursue further treatment away from home, if and when that time comes, while also helping to manage medical expenses.

Thank-you also to the runners who ran in events on Ottawa's race weekend in honour of Phoebe! To Alyson who ran a personal best in the half marathon and to the amazing Manor Park kids who ran the 2k with their families and teacher - you have all warmed our hearts! Thank-you!