A new vision ...

I am feeling especially thankful today.  Thankful for Phoebe's team of doctors and nurses, both near and far - together, they have done amazing things.

I have been filling out Kindergarten registration forms for Phoebe. A task that should only take minutes, is taking me days. It is proving to be emotional, and combined with Phoebe's upcoming end of treatment, I have honestly been a bit of a mess. 

There have been too many days when we worried and feared that Phoebe wouldn't see another birthday, let alone start kindergarten. At the beginning of all of this, when Phoebe was just a baby, my dad would almost always stop me before I started to share details about Phoebe's intense treatment. He would stop me and say, "wait ... let me get my vision". And then, "okay, there she is - running for the school bus". 

That day, the day that Phoebe will run for the school bus, is so close. It is amazing actually, that we have come this far. We are registering for school and about to complete this year of maintenance treatment. We are about to embark on a new journey without chemo and without the strange security that it brings. 

March 21st will be Phoebe's "last chemo". Our end of treatment. We will add a third end of treatment gold bead to Phoebe's now over 50 foot necklace of courage beads to mark this special occasion and we will hope and pray that this is it. 

Today, we had a visit to CHEO for blood work and chemo and I prepared myself for a difficult day. I had heard that Phoebe would be switching clinics and doctors once she completes treatment, and the thought of this honestly had me close to tears and losing sleep. Considering that no one really knows what will happen when we stop chemo, and that the risk of relapse is high, to make changes at this fragile point seemed crazy. It might not seem like a big deal, but there is so much history and heart ache tied in to our experience at CHEO and this particular proposed change to the post bone marrow transplant clinic, at a time filled with so much uncertainty, brought me right back to July of 2011 and Phoebe's first relapse. I have come to realize that there are many things about this particular time that I have not dealt with. At all. And anytime I am faced with CHEO related stress, I return to those days. Probably not healthy at all, but it is what it is.

The memory of being sent home from CHEO with a baby who was thought to have a terminal cancer, sent home without any support or guidance, the incredible stress and heartache we felt, the feelings of complete helplessness, and the pure desperation, all of this came rushing back and with it came anger and resentment. It shouldn't have happened as it did, we should have met social work and palliative care, we should have been given a plan for pain management, we shouldn't have been left to handle it alone, even for a day, and we shouldn't have been judged for decisions to pursue further treatment. We should have been encouraged to seek a second opinion as soon as possible. Although this experience is in the past and thankfully Phoebe is here and healthy, a proposed return to the doctor we saw back then and a change in the schedule that we have become accustomed to, combined with the worry that fills our everyday, brought me back. Because of the history that we have with CHEO, the stress that at one time seemed to completely take over our days, the struggles and fights we once had, I went to the hospital today expecting to have to plead my case to stay with the physican that we have come to know and trust, expecting to have to argue the benefits of continuity of care. Instead, I was met with understanding and agreement. With kindness and caring. With a solution that is in Phoebe's best interest and thankfully, also good for my tired and weary soul. Considering the uncertainty that lies ahead and that no one knows what will happen next, for now, things will stay as is. No more changes. 

After all, Phoebe is more than the pages that make up her chart and the numbers and values on her blood work results and I am thankful that she was seen as a person, rather than just a patient. She is a very opinionated and feisty little person, who has come to love and trust her doctor, and the more normalcy and routine that we can keep in her life right now, the better. 

It is the little things. 

So, we are taking it one day at a time. Following the last date of chemo, we will "graduate" to monthly visits to CHEO and continue to go to St.Jude every three months for MRI and bone marrow tests. The treatment for Phoebe's liver iron overload will coincide with the monthly visits. We are trying to find a way to harvest Phoebe's tcells and store them, just in case she might need to use them in the future. There is a very promising new treatment using modified tcells that is showing great success in patients with relapsed Leukemia, and it remains one of the only things we haven't tried. It is also, hopefully, going to be offered at SickKids later this year. We hope and believe we won't need it, but it is always good to have a just in case plan in place. 

We are excited to finish this chapter and we long for normal. We are trying to put some pieces of our lives back together, and imagining Miss Phoebe running for that school bus. 

It seems though, that it is time for a new vision. 

Close your eyes ... can you see her? 

There she is ... marching to the beat of her own drummer ... running with friends in the school yard ... riding bikes with Mae ... blowing out candles on her birthday cake ... playing outside until the sunsets ... going on her first date ... throwing her graduation cap in the air ... learning to drive ... falling in love ... chasing her own babies on the beach ... climbing mountains ... running marathons ... swimming laps ... growing old ... every day ... doing every little thing she wants to do. 

Anything is possible. 

There she is. I can see her.

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

― Shel Silverstein

Amazing and Cancer Free

The long awaited MRD (minimal residual disease) results are in and they are negative! No cancer cells were found anywhere in Phoebe's body or bone marrow and I am grateful, ecstatic and just so relieved.

Our next round of tests will be done in Memphis in 3 months and Phoebe will be finishing this year of maintenance chemo, sometime in April. I think it will be the beginning of April, but we don't have an exact date yet. This will hopefully mark the end of chemotherapy and cancer treatment for Phoebe forever, but as we are often reminded, we are in uncharted territory.  There is no data to look to for answers and no one who can tell us what may happen next. We believe that Phoebe will be okay, and that is enough for us right now.

Embracing all things hopeful and believing that all will remain right in our little world, I picked up Kindergarten registration forms for Phoebe today.

In other news, the voting for CTV's Amazing People has started. Phoebe is among these incredible and inspiring and simply amazing people and you can vote for her or for her friend, Bryce Jude, whose story is also featured, by clicking this link. I think you can vote everyday. The stories are amazing and well worth watching. We are very proud and honoured that Phoebe's story is among them and looking forward to taking her to her very first "Gala". She has her party dress and fancy shoes all picked out and tries them on at least once a day. Thank-you to CTV for sharing her story.

And thank-you to all of you for continuing to travel this road with us. 

Back from Memphis

We are back from a very busy trip to Memphis. This was Phoebe's second annual post transplant check up. It is hard to believe that it has been over two years since Phoebe's second transplant. Two years! In many ways, it feels like yesterday. I am often in complete awe of Phoebe and all that her little body has been through, and this visit was no exception.

On this trip, Phoebe had her regular every three month MRI to look for disease in her belly and pelvis, her bone marrow aspirate and lumbar puncture. In addition to these tests, she had an MRI of her heart and liver, an MRI to look for avascular necrosis, a CT scan to monitor bone density (a common side effect for children who have received steroids for treatment), an x-ray to determine her bone age, she had an eye exam, her hearing was checked, she saw the dentist (who despite my worries, she loved and even drew a picture for and insisted we deliver it the following day), she had her blood tested, her thyroid, kidney and heart function was monitored and lastly, she saw the hospital photographer.

This last visit really got to me. That St.Jude takes the time to photograph their patients each year, to have a real and honest portrayal of how they are doing, not just as numbers on a chart, blood levels and test results, but how they, as little growing, living, smiling children are doing, to capture their personality on that day, their spirit, it just warmed my heart. The photographs are done in a studio by one of the hospital's professional photographers. It took a second try to get Phoebe's photographs, but in them she is smiling big, saying cheese and I am just grateful to the hospital for acknowledging the importance of this moment and for recognizing Phoebe for more than just her cancer. I think it speaks volumes to the type of hospital that St.Jude is and to the fact that they often go out of their way to truly celebrate their patients.

As for our test results ... they are good. They are not all back yet, but what we have so far is good news. Phoebe's MRI shows no evidence of disease, her spinal fluid is clear, and the chimerism of her bone marrow is 100% donor 2 (still all my cells). We are just waiting for the MRD results. This is the most sensitive test and so really important. We have had a perfect chimerism with positive MRD before, so I am anxious to know the results.

In terms of all of the other tests, most are good. Phoebe's hearing and vision is perfect, her heart is functioning well, her kidneys, despite having one that has never fully recovered from the damage done by the mass, appear to be working well. She does seem to be suffering from hypothyroidism which is a common side effect for children who have received total body irradiation (which Phoebe has not), so we will be adding an endocrinologist to our list of doctors. The iron overload on Phoebe's liver is severe and requires treatment before it causes more problems, but treatment can't begin until we are finished with chemotherapy, so we will wait. This was caused by the countless blood and platelet transfusions that Phoebe required during treatment, transplant and after her relapse(s) to survive. To put in perspective, during her first transplant, Phoebe required daily and sometimes twice daily transfusions of blood and platelets to survive the first two months as her body recovered and without the blood she received after her first relapse, which was also every day or every other day for many months, she would not be here today. Her body just wasn't making any healthy cells, or anything except for the Leukemia cells, so without blood donors, she would not have survived. It's as simple as that and we are forever thankful to everyone out in the world who donates blood. Phoebe does now have a huge build up of iron on her liver and how this is typically treated is by phlebotomy -  essentially taking blood from Phoebe to draw the excess iron out of her system.

Had any of these issues occurred in my healthy child before Cancer struck, I would be scared, worried, heart broken. I would probably have cried and wondered what I did to cause this. Today, I am relieved. It is not cancer. My motto these days is anything but cancer, but as these issues start to add up and as we learn more about the devastating effects of these harsh treatments, I worry that this will change. There are many side effects of childhood cancer treatment that are as scary and life threatening, if not more so, than the big C. Right now, however, if these issues are treated they will not threaten Phoebe's life and so we are lucky and grateful and will continue to put one foot in front of the other, thankful to be moving forward and away from cancer.

Please keep Landon's family in your thoughts and prayers as they grieve the loss of their beautiful boy. Landon passed away early Sunday morning after fighting Leukemia for most of his life. We spent some time with Landon while Phoebe was in patient at CHEO and he literally lit up the ward with his energy and beautiful spirit. The joy he brought to everyone around him was contagious. Back then, there was a bright, red shiny tricycle on the ward, which has since gone, but I remember watching Landon race around the ward on this bike. He truly made our days there brighter. Rest in Peace, Landon.

We need a cure.

Phoebe, the Teacher

We are making our way through another 5 day course of steroids and Phoebe is not herself. She is clingy, she wants to eat everything and nothing all at the same time, she is moody and sleepy and we are all counting down the days until she is back to herself. It is especially hard on Mae and there are often a lot of tears during steroid week. This particular round seems to be worse than most and this morning Phoebe had a melt down that was unlike anything I have ever experienced. It was an all out, on the floor, kicking and screaming, refusing to put on clothes, and even throwing away her beloved soother, melt down. Later today, I overheard Mae telling her cousin that it would be "just a few more days before Phoebe is back to normal". Sigh .... 

Phoebe's blood work taken at CHEO last week looked great and we are coming up to our next trip to Memphis. We leave on the 21st for a few days and a lot of tests. We will see Phoebe's transplant doctor, the ophthalmologist, the dentist and Phoebe's heart, lungs, bones, hearing, teeth, eyes, blood, kidneys and liver will be checked in addition to the tests of her bone marrow, blood, spinal fluid and MRI of her belly and pelvis to check for disease. So many tests. Phoebe's days will start at 7am and finish at 5pm. Despite these long days and Phoebe's busy schedule, we have decided that we will all go to Memphis this time. The long days and hospital life is hard on Phoebe so we are trying to make the most of it. We have plans to squeeze in a ride on the Memphis trolley, a visit with the famous Peabody Ducks, and Phoebe has requested barbeque for dinner.  

It is also an important visit, both because it is our second annual post transplant visit where everything is tested and also because we will hopefully hear some news of when this chemotherapy plan that we are currently on will stop. We are coming up to a year post radiation and depending on which doctor we ask, this may also be when we will be ending this year of chemotherapy and steroids. So long to steroids and chemo may be just around the corner. 

So, why all of these tests at St.Jude? It is very common for children who have been treated for cancer to develop complications related to treatment. I read a study published by St.Jude recently that stated that 98% of survivors will develop some form of chronic long term side effects. 98%!  This statistic makes me want to scream. 68% of these side effects will be life threatening or disabling and some, fatal. It appears then that is not a quesiton of if, it is what. What chronic or possibly life threatening side effect will Phoebe be dealt? She has had a lot of aggressive therapy, so the likelihood of something happening is great. The journey, it seems, never ends for these kids. Not surprising though, given that the drugs used to treat childhood cancer are mostly 40 years old and meant for adults. Not at all meant for the developing bodies and minds of children. 

I dream of a day when pharmaceutical companies develop drugs for children just because it is the right thing to do. Drugs that will cure and allow children to grow up happy and healthy. Drugs that won't rob children of childhood due to short term side effects like the rages and mood swings of steroids, drugs that don't cause 98% of survivors a long term health concern. We are making progress, but still have a long way to go. 

We are thankful to be followed by St.Jude and also incredibly grateful for how well Phoebe is doing. I will take the steroids and the melt downs if they mean that she is here. She is growing into quite the hilarious and feisty little lady and she just amazes me. She is brave and fearless. Last week I took her swimming and she insisted on trying without her "puddle jumper" to help her stay afloat. She told me she wanted to "swim by herself" and marched towards the pool, down the steps, little arms and legs pumping and paddling she may have got in one stroke towards me before she dipped under and I caught her. I expected her to want to put her puddle jumper on right away but she shook it off and insisted on trying again and again, and did just that six times before choosing to float with help. When she was all dressed after her swim she proudly exclaimed that she would teach Mae to swim and "not to be scared". Love her. 

Go Phoebe go. 

http://healthland.time.com/2013/06/12/childhood-cancer-survivors-have-significant-chronic-disease/

So long 2013

So long 2013. 

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

Perhaps 2014 will be our year. 

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

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

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

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

In 2013, against all odds, Phoebe turned three. 

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

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

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

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

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

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

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

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

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

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

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

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

I wish you all a happy and healthy new year. 

A few photos of our 2013 ...

Busting out of CHEO in January 

Dancing on the banks of the mighty Mississippi

Getting ready for another round of radiation at St.Jude 

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

Home and bike riding 

Three 

Light the Hill gold 

Cutest Zebra ever

Shoveling 

First Christmas at home 

'Tis the Season

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

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

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

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

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

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

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

Merry Christmas! 

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

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

Day + 730

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

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

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

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

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

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

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

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

We had some normal today and a beautiful memory. 

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

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

And this, the cutest Rudolf ever.