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. 

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

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

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

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.

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.