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 31, 2012

Out with a bang, 2012

If last night is any indication, 2012 is going out with a bang. A bang that includes high fevers, worried nurses, absent minded and dare I say, careless doctors ... and the sleepless and worry filled nights that seem to always come with life at CHEO. 

Phoebe spiked a fever yesterday morning and despite many signs pointing to a possible bladder infection, she was left to fight it off herself. Thankfully she is a bit better now than she was in the wee hours of the morning when her breathing was labored, her fever was high and not coming down with Tylenol, and she was waiting to receive antibiotics. We waited seventeen hours for antibiotics for a child who has a compromised immune system because the thought was that she would be able to fight this infection herself. Poor Phoebe, already climbing a mountain, was now expected to do more. It was nuts. This waiting turned the situation frantic. At one point this morning, there was a concern that Phoebe may be septic, and we know all too well how quickly a situation like this can turn from okay to terribly frightening and life threatening in a matter of minutes.  

Thankfully, she appears to be on the mend, she has received antibiotics, and as I write this she is not herself but is sleeping relativley peacefully. I hope the worst is over. 

I also hope to end 2012 on a positive note, with a happy, playful Phoebe. And without fevers. 

My family is very superstitious and because of this, as midnight approaches on the 31st of December, I always get a little anxious. I grew up thinking that in order to ensure that the year to come would be prosperous and good, certain things had to be done. I needed money in my pocket, a clean house, to be with friends,family, Jon ... and health. I am fairly certain that spending the eve of the new year in the hospital would not make the list. 

Custom also has it to celebrate the year that is coming, rather than the one that is past, but I am rewriting the rules. I am honoring 2012 for all that it has given us. 

Throughout 2012 we witnessed advances in the treatment of Leukemia, we saw great doctors at work and we benefitted from this hard work and these advances. 

In 2012, the Hospital for Sick Children (SickKids) in Toronto brought the NK cell treatment to Canada, to benefit children that might follow a path like Phoebe's. 

2012 brought us miracles, blessings and victories; some big and some small.

Phoebe started to eat on her own after being tube fed for 18 months.

We saw remission. Complete genetic remission and for many, many months we lived without  cancer. In fact, for all but one month of 2012, all signs and tests pointed to complete health, healing, and a future without cancer for our Phoebe. 

In 2012, at 14 months old, Phoebe walked for the first time. 

And then she ran.  

Phoebe had a tube free bath, she went swimming, she splashed in the splash pad and played in the sand at the park ... all firsts. 

In 2012, Phoebe and Mae attended their very first concert when they saw Raffi at the Roy Thomson Hall in Toronto. 

We witnessed a man walk over Niagara Falls on a tight rope. 

Phoebe Rose turned two.

We trick or treated for the very first time as a family. 

Mae started school, turned four and learned to ride a bicycle. 

In 2012, the bond between Phoebe and Mae blossomed into the most beautiful relationship I have ever been witness to. 

We celebrated one year without cancer in 2012 and we rejoiced as Phoebe reached her first post transplant birthday. I know now that Phoebe was not without cancer on this monumental day, but we believed she was and we celebrated it to be so, and to have had this day makes me thankful and hopeful that there will be another. 

2012 lifted us up far more often than it struck us down and even on the darkest days, hope triumphed over darkness. It was a year of firsts but although it gave us so much to be thankful for, it gave us back cancer and much work to be done in 2013.

We are welcoming the new year with heavy hearts that are made lighter with the hope and promise of a cure. 

Here is to our year. 

Lucky 2013.


Saturday, December 29, 2012

Phoebe the Rockstar





We have been able to get Phoebe out of the hospital during the day since Christmas Eve, returning around bedtime for overnight hydration and blood work, and hoping for some sleep.

Phoebe has been on steroids since all of this began and they are seriously affecting her sleeping schedule. She has gotten used to something of a rock star's schedule and is often in bed and asleep around 4am - earlier if we are lucky. The time before 4 am is often spent jumping on the bed, laughing, playing, or running laps around the ward. Thankfully, however, they have not affected her mood and she is still happy and joyful Phoebe, albeit a bit feistier. It is hard to tell though if this is typical two year Phoebe or Phoebe on steroids.

We are grateful for this time at home and the return to a somewhat normal life, even if it is only during the day. We have enjoyed meals together, lots of play time, time outside in the snow, and Phoebe has had her first ride on a sled (which she loved).

There really is not a lot to do at CHEO during the day (or night), especially during the holiday season as the play room is most often closed, and we can only walk around the ward and look at blank walls so many times before Phoebe gets bored and asks to go home.

So home we have gone and we are hopeful that this will continue.

Phoebe still looks wonderful and is full of energy and smiles. Only time will tell, how the chemotherapy and steroids she has received up until now have affected the size of the mass, but we are hopeful. Hopeful and anxious to put the second part of this plan into place and learn about what awaits Phoebe next for treatment of her disease.

We are grateful for all of the love and prayers that are being sent our way from all corners of the world, as well as corners close by - including the wonderful and thoughtful staff at CHEO, who have once again, become like family.

We have been the very thankful recipients of acts of kindness from strangers, friends, neighbours, family, and our wonderful community and we appreciate every word, act, gift, thought, prayer and message of hope.

A friend told me recently that she has been visualizing Phoebe walking across the stage as she graduates from University. What a wonderful image, and now whenever I am feeling overwhelmed or saddened by all that we are up against, I close my eyes and I picture beautiful Phoebe Rose - with curly hair like her Daddy and full of smiles, proudly marching across that stage. I can see her.

Friends and family are organizing a bottle drive in support of Miss Phoebe Rose. If you find you have extra empty wine and beer bottles after the holiday festivities and would like to donate them to help us to navigate the next path of Phoebe's treatment, please contact kdoull@gmail.com for pick up or donation details, or drop off at 49 Columbus Avenue, in Ottawa on January 6th, 2013, between 10am and 1pm.

Thank-you!






Wednesday, December 26, 2012

Merry Christmas


Christmas time has come and gone. Phoebe was able to get out of the hospital during the day on Christmas Eve and day and so although it was not the Christmas I was imagining, it was spent together and for that we were blessed.

We opened our gifts in the comfort of our home, watched as Mae and Phoebe played with their new toys, and fought over a beautiful new Barbie Fiat. We had a delicious home cooked dinner delivered to us, we pulled our Christmas crackers, most of us wore the paper hats, and we clinked glass to plastic and wished for brighter days ahead. It was as perfect as it could be under the circumstances.

Phoebe is very fond of Santa, so much more than Mae was at this age, and so when Santa visited the children at CHEO on Christmas morning she was very excited. She reached for him as he approached, and with tears in her eyes, said "Santa!" He picked her up and she snuggled into his beard, all the while saying Santa over and over again. I think she thought that Santa would take her away from all of this and when he left without her, there were a lot of tears. I think Mae too wished that Santa was as magical as he is in her imagination.

It is so important to all of us to have Phoebe home, but I think that Mae misses the life she came to know with her best friend and sister the most. She is having a difficult time with all that comes with life in the hospital and she will often cry when she leaves Phoebe in the hospital. As we make our daily rounds around and around the ward in the wagon, she will point to rooms that are empty and say "he got to go home". At night time when she goes to sleep she wishes for "Phoebe to come home, and for her to get better and to never have to go back to the hospital". It is enough to break my heart and wonder why all of this is happening to our family.

Today Phoebe had another dose of chemotherapy, methotrexate, and the plan is to repeat this together with one other chemotherapy, every 10 days as a way to manage her disease while we wait to hear about other options. She has an ultrasound once a week to check in on the mass, the last showing that it had shrunk, but was still very much there. Her belly and her leg, however, are back to normal and are no longer swollen as they were when and after we were admitted. And her blood work continues to look good, apart from some electrolyte imbalances that we are managing.

I heard today that the bone marrow that was sent to St.Jude came back with a chimerism of 91% donor 2 cells (I am donor 2). We were already aware that Phoebe's bone marrow was affected, so this is not "news", however it was hard to hear. Perhaps it is because I have gotten so used to hearing news of 100% donor, or maybe it is because today I also decided I needed to cancel our flights to Memphis; flights that were supposed to take us there for Phoebe's one year post transplant check up, or maybe because it is just one more thing, one more piece of bad news, that makes it all especially difficult.

Regardless of what all of the tests show and the reality of what is going on inside Phoebe's body, she is doing well. She is running laps around the oncology ward, eating, drinking, playing, laughing and living life as full as she can right now - she is limited only by her IV pole and the limited areas to play here at CHEO. No one has told her that she is sick and to look at her you would probably not be able to tell. She is a bundle of joy and laughter and she makes it wonderfully easy to follow her lead.

Thank you to the CHEO Santa and all of the volunteers and child life who work hard to put a smile on the faces of children and families who find themselves in the hospital over Christmas. You truly made a difference in our day and helped us to create wonderful and lasting memories.

We learned something this year, or rather we were reminded of this because we have always known it to be true. We learned that it is all about time. It is about how you spend it and who you spend it with. Where you spend it, well that is just gravy.













Saturday, December 22, 2012

Phoebe and her super Daddy, home safe.


Today I wrapped my girls' gifts from Santa. I hid them out of sight and then I cried. I cried for the Christmas that we are supposed to have this year. The one with my family together under one roof, healthy and free from cancer.

Today I am hating cancer more than most. If that is even possible.

My thoughts are full of cancer. I read about cancer, I dream about cancer. Cancer is once again, running my life. It is not enough to have wonderful doctors who care fully and completely for Phoebe, I need to read and to know that they have and are uncovering every stone. And right now, sadly, there seems to be very few stones to uncover.

I have too many questions in my head that I am afraid to ask, and I still feel like one of these days I am going to wake up from this nightmare.

Cancer, is an ugly and hateful monster and I honestly don't think I have the words in my vocabulary to truly give justice to what this is like. To what it is like to be faced with fighting Leukemia a third time with a child who to everyone who sees her, appears perfectly healthy.

But then there it is, the key to all of this. Phoebe is, as usual, defying odds and I am full of hope that she will continue to do this. That she will continue to laugh in the face of cancer. And she literally is laughing ... everyday and most of the day she laughs. 

Jon and Phoebe have finally returned from Toronto. It only took 5 hours to fly from Toronto to Ottawa (you might note a wee bit of sarcasm). Those who are from the area will know that this is typically a one hour flight and it was. Phoebe was picked up by ambulance, taken to her private and tiny plane, they flew to Ottawa and the flight was bumpy, scary bumpy, and while everyone on the flight was close to losing their lunch, Phoebe was laughing. When I asked her about the plane, she said Weeeeeee!! After the flight they waited in the airport during flu season for another ambulance to pick up. They waited for an hour before Jon called 911. Yes, he called 911. He was concerned about the giant plane full of people about to head their way and frustrated by the waiting in a crowded airport during flu season, with an immuno compromised Phoebe. It seemed to work because their ambulance arrived shortly afterwards. 

So, here's to Phoebe's Daddy, who is always doing what he can to keep her safe. 

We are now back at CHEO, settled into our room with the walls that desperately need to be painted and we are preparing for a Christmas spent in the hospital. As long as we are together, it really doesn't matter where we are and we will make wonderful memories here as we would at home, but we are hopeful for a chance to take Phoebe home, even just for a few hours, so she can see her Christmas tree. 

Phoebe is here and for that we are blessed. Next year will be our year, for a Christmas without cancer.

Next year will be our year.



Friday, December 21, 2012

Step one ... complete

Step one is complete.

Phoebe and Jon arrived at SickKids late on Tuesday. On Wednesday she had surgery to insert a new central venous line - this is line number 10 and comes out of her chest. It is where all of her medicines and blood products will be given, and having it avoids the many, many pokes that Phoebe has endured over the past 10 days. She also had a femoral line put in to prepare her for the t-cell collection.

On Thursday Phoebe had her t-cells collected and the photo below shows her sleeping through this procedure.  Her blood was removed from one line, then separated to take out the t-cells, and the rest of her blood was put back in through her other line. She was able to collect enough cells on one day, which is good news, and meant that her femoral line was removed and she was restarted on steroids.



The t-cells should be on their way to Philadelphia. 

As I write this plans are being made to bring Jon and Phoebe back to Ottawa. She will be readmitted to CHEO as she is still very much in the acute phase of all of this and her electrolytes, among other things, have to be closely monitored, but we have a plan and we are moving forward.

Part of this plan is to wait and see. Wait to see how Phoebe's t-cells grow in the lab in Philadelphia, and whether or not she will be eligible for the trial. The concern right now rests in the fact that she has had steroids, something that was unavoidable due to the rapidly growing mass in her pelvis, but the doctors in Philadelphia are not sure if her t-cells will grow as they need to given the steroids.

We are taking things one day at a time and following the advice of Phoebe's many wonderful doctors. The plan in terms of treatment right now seems to be to give lower doses of chemotherapy, to hopefully shrink the mass and manage her disease while we wait to hear about one or both of these clinical trials. In the words of Phoebe's doctor at SickKids, high dose chemotherapy will not cure her and he is concerned both about how this would affect her eligibility for innovative and hopefully curative therapy, but also about the fact that to give her body more chemo in high doses, could possibly do a lot of harm.

The trial in Philadelphia, he said, is promising as the goal is to harness the power of Phoebe's immune system to kill Leukemia cells and if it is successful it has the ability to essentially vaccinate Phoebe against her cancer. It will use an inactivated form of the HIV virus to alter the immune system and train it to find and kill Leukemia cells. It is innovative and very promising research and we are very lucky to have it as an option.

But for now we wait. Wait to hear from Philadelphia. Wait to see improvement in the size of the mass. Wait for a treatment that will hopefully cure our Phoebe.

While we are waiting we will surround Phoebe with as much love and support as possible. We will follow her lead; which is joyful and strong and full of life. And we will enjoy this time.

This journey has taught us, among many things, that time is precious, and that whether it is spent in the comfort of our home, or in the hospital, it is a gift.


Phoebe and her new friends, the Ottawa Senators.

Monday, December 17, 2012

The beginnings of a plan ...

We have the beginnings of a plan ...

Phoebe and Jon are hopefully going to leave tomorrow for Toronto and SickKids. How they are getting there is still up in the air, but I think Jon is secretly hoping they will take the air ambulance/helicopter. The plan once they arrive is for Phoebe to have a central line put in and then she will undergo apherisis, to remove her t-cells in preparation for a very innovative clinical trial in Philadelphia. Yes, Philadelphia.

This trial has been referred to as a "breakthrough" and we are very lucky to have it as an option. No one knows for sure whether or not it will cure our Phoebe, but it has seen great success in others and we are hopeful.

All of this considered, we know all too well how complicated all of this clinical trial business can be, and so nothing is certain. Phoebe's cells, once they are sent to the Children's Hospital of Philadelphia, must grow well in the lab and the doctors there are unsure of how they will grow considering the fact that she has had steroids. So we will wait and see.

There is also a phase 2 trial at St.Jude which Phoebe has been placed on a wait list for. The wait is about 8 weeks, and right now, ironically, she does not have enough disease to qualify. Both trials should be available around the same time (it will take some time for Philadelphia to work with Phoebe's cells), and we have been told that we would be lucky to have a choice, meaning that this clinical trial business is complicated and many things have to align perfectly to ensure successful eligibility.

In the meantime, our doctors are working on a plan that will include a reinduction of chemotherapy, but the finer details of that are still being considered and we cannot begin anything until Phoebe's cells have been collected. I am anxious for something to start as although the steroids appeared to shrink the tumour, it is still very much there and leukemia, as we have learned, waits for no one.

We can not predict what the future holds, and if we are given a choice, we will never know which path is the right one to take. We are happy to have options, and to have many doctors working hard for Phoebe and we continue to take each day as it comes.

Phoebe is doing well. She asks to go home at least once a day, but she is making the most of her time at CHEO. To look at her you would never know that she is so sick, she is full of joy and is often a ball of energy. Last night she was up until the wee hours of the morning, playing sleeping bunnies with her Daddy, and despite him avoiding the part in the song where the bunnies jump, Phoebe would spring up in her bed anyway, shouting "watch me hop Daddy!"

We just love her so much and cannot wait for the day that we can bring her home again.

Thank you all for sharing in our hope and for loving our sweet Phoebe right along with us. She can feel your love, as can we and it truly means the world to us.






Saturday, December 15, 2012

Following the leader ...

Lately, I have found myself daydreaming.  Imagining my family walking down a path. In my vision we are camping and on a hike in the woods. Perhaps we are camping because it was something that we put off doing this summer, worried about Phoebe and promising we would do it next year. In this daydream walk, we meander, and we stop often as little ones often do to pick up twigs or rocks or to examine a different bug or plant that catches our eye, and it takes us a very long time to arrive at our destination.

I mention this now because I think it is very symbolic of where we are. We are walking down a path without a clear direction of where we are going and we are waiting. We are trying to be patient, but we are waiting. Sometimes when we are on those walks with little ones, we want to rush them, telling them that there is no time to examine every single twig, to make sure each crack in the sidewalk is stepped on, that we must get to where we are going, but right now is not one of those times. Right now we will wait because what we are waiting for will hopefully bring about as much wonder and miraculous discovery as do those findings by curious little minds in nature. 

After the stent surgery, Phoebe's kidneys improved enough to begin steroids and so far, we have seen much improvement. Her belly appears smaller, she is pooping and peeing normally which is something she wasn't doing before, and she is making progress with each day. She is making regular laps around the ward, with Jon or I speed walking behind her, trying to also manage and steer her IV pole. She is eating, drinking, talking, playing, and even doing some dancing. She is, as she always is, a joy and a wonder to watch in action. She is keeping the nurses busy, asking them to take blood pressure and temperature for each of the bears in her growing collection. And she is feisty.

We are hopeful and blessed. Many reading this may think we are unlucky, and we are definitely that as well, but we are also very blessed. We have love and hope in abundance and we have many wonderful people working to help our Phoebe. Doctors here, at SickKids and at St.Jude are working together to find the best treatment options for Phoebe. The first time we went through this, we were very much alone - searching for options for Phoebe by ourselves and feeling overwhelmed. This time thanks to the many doctor friends that Miss Phoebe has made, we are not alone and instead feel very supported, both in our search and our desire to continue treatment.

Unfortunately however, there is no set path. No definitive treatment for relapsed infant Leukemia, especially one that has relapsed twice and each time in such an aggressive way. We cannot just give Phoebe more of the same drugs that she has already had, drugs that didn't succeed in curing her Leukemia and there are no new drugs, approved by the FDA, to give. In fact, only one new drug has been approved for treatment of children's cancers by the FDA in over 20 years. 

And so, we are left with clinical trials. With innovative and promising new therapies that are still very much in the experimental phase.

The biopsy of the mass and tests of Phoebe's bone marrow show that we are dealing with the exact same cancer. The cancer that one doctor once referred to while speaking to us, as "the worst". This same cancer, hid out in Phoebe's ovary and then divided and divided and divided and continued to grow until it was a mass of cells so large that it caused Phoebe to have mild renal failure due to the pressure it placed on the ureters and kidneys. It did all of this completely undetected, until it began to press on a blood vessel which caused Phoebe's leg to swell, bringing us to CHEO on Monday.

We learned later, that the ovaries are one of a few "sanctuary sites". A place where Leukemia cells will go to hide, where chemotherapy and the therapy that comes with transplant, are unable to penetrate. 

And so, we once again find ourselves in a heartbreaking spot. Living life day to day, with one half of our family at the hospital and the other at home. There have been a lot of tears from each member of this family, but our heart ache cuts deeper than the daily struggles of hospital life. For the past year, we have witnessed the work of many wonderful doctors. We have been on the cutting edge of research and have been able to give Phoebe ground breaking and innovative treatment. We have been living on the front lines of cancer treatment and we have witnessed these wonderful, determined, and courageous doctors at work, knowing very well that they are limited. That there is no money, no attention, and not enough resources to properly devote to finding a cure. 

Phoebe is here, she is strong, but we are once again grasping at straws. Looking to clinical trials, and innovative therapy, and using our child to advance the cure with the hope that this one last treatment, will be the one. The cure. We believe that this is possible, and so we will continue fighting. Always following Phoebe's lead, which right now is so very strong.

We are hoping to have some kind of a plan in place this week. Phoebe still has a ways to go before she is eligible for some of the treatment that we are looking in to. Most clinical trials have a long list of eligibility criteria, but we are slowly checking things off the list.

Thank-you all for the outpouring of love and support. It means so much to us and I know that your love and prayers will help us to move this mountain.







Wednesday, December 12, 2012

Phoebe has relapsed. The mass in her pelvis is cancerous, showing up in early pathology reports with Leukemia cells and preliminary bone marrow results that look deeper than what can be seen from under a microscope show that she has the same genetic markers of her original Leukemia cells. The Leukemia that she has already fought twice has once again reared its very ugly head. 

Cancer is a monster. 

There really are no words that will even come close to describe how we are feeling. We are devastated, heartbroken, desperate, overwhelmed. We hurt for Phoebe, for how hard she has fought and struggled, only to be back here again. It is just not fair. 

We are taking things one day and one task at a time. Today's task was to get Phoebe to pee, which with the help of a stent in her ureter, she is doing very well. Tomorrow, if her kidneys show signs of improvement, we will begin to try to shrink the mass with steroids. 

We don't have a definitive or even a loose plan of treatment, our goal right now being to alleviate some pressure that the tumour is causing and to prevent further growth, while still protecting Phoebe's kidneys. When cancerous cells break down, like the millions that are cowardly hiding in my baby's pelvis, they release toxins that can permenently damage vital organs. So we need to regain some ground before we can look at the next task, which will hopefully be to rid Phoebe of this for good. 

We are not giving up. We are holding on to hope and breathing in and out, keeping Phoebe as close as we can as often as we can, and putting one foot in front of the other. 

We are blessed with many wonderful doctors, both near and far, who are working hard for our sweet Phoebe. And we are blessed with an army of love and support that we have felt at every step. Thank you all for holding Phoebe close. We need your love and prayers now more than ever. 


Tuesday, December 11, 2012

We Love Phoebe Rose


Once upon a time, an ultrasound meant a beautiful, hopeful, and mesmerizing few moments. The images of my babies dancing around in my belly, the sound of their heart beating. Beautiful. Yesterday, Phoebe had an ultrasound of her very own. It was not her first, she has actually had too many to count, but this one, second to the one that started us on this path, it is the most memorable. And the most heartbreaking.

Two hours, three people, too many tears, and too much confusion. I heard: what is that? Where is her ovary? Is that a vein? Is there blood flow? Is that a clot? What is that? So much confusion and I left feeling defeated and thinking of cancer. Stupid cancer.

I will take you back though because I know this will all seem confusing, considering my last post of celebration. 

I brought Phoebe in to CHEO yesterday morning because her leg is/was swollen. We had an ultrasound, and many hours later, we are now here, admitted. On 4 North, CHEO's oncology ward.

And just like that, our lives have been turned upside down once again.

Her ultrasound showed a "mass", but the images were not the greatest due to the fact that Phoebe was moving around a lot, so we were booked for an MRI. As we were about to leave to go home, to prepare to return the following day for the MRI, we were called back. I heard "you are not going anywhere" and subsequently learned that Phoebe's kidney function blood tests were all elevated. Her kidneys were showing to be in distress and she was admitted for hydration and a medication to bring down the uric acid that was showing up in her blood.

Because of Phoebe's history and the fact that cancer is on everyone's mind, she was also scheduled for a bone marrow aspiration and lumbar puncture.  The MRI results came in first, showing a large mass in the pelvic area.

I can now add a few more words to the list of those that will hunt me down in my dreams, and keep me awake at night. 

The preliminary bone marrow results, however, are clear of Leukemia which is good news. And her spinal fluid is also clear. We know now though, after having been through this many times, that we need to wait to see what the MRD (minimal residual disease) and chimerism show. And so we will wait. But we will take this tiny piece of good news, and run with it.

Phoebe is scheduled for a biopsy tomorrow.  After which they will also place stents/shunts? in her ureter to help her to pass urine and to assist her kidneys which are currently struggling due to the pressure being placed on them by the mass. Her kidneys, among other things, are our primary concern.

After the biopsy we will learn what this is. If it is cancerous. What the treatment course and options are. Right now we know very little.

We know that there is a large mass, and just writing that down is very difficult.

We know that Phoebe once again has to fight and struggle and work to overcome, just one more thing. Whatever this thing may be.

We know that so far, her bone marrow and spinal fluid look good. 

We know that many hard working, caring, and very smart minds are coming together to help our Phoebe. Our doctor at St.Jude is in touch with the doctors here and they are expecting an overnight delivery of Phoebe's bone marrow, to be tested for mrd and chimerism, the results of which we hope to know soon.

We are taking things one day at a time, although at times over the past two days it has been very hard. We are scared and overwhelmed. Phoebe is older and wiser now. She has asked to go home, she has asked for Mae, and she has cried out for the nurses to stop. Telling them, no and that she is finished. Mae has also cried for her sister, and has asked to see her. She kisses her head and hugs her close, and she is all too aware of the reality of this life. 

However, if you ask Phoebe how she is doing, she will tell you very definitively that she is "fine". She has started to take her beloved bear's blood pressure and temperature while the nurse takes hers. She is coping, and if she says she is fine, we will follow her very strong lead, as we always have. 

We will hold on tightly to hope and pray that as more results come in, our path becomes clearer and our sweet Phoebe gets better.


Friday, November 30, 2012

Shout it from the Rooftops. Day + 365



It has been 365 days since Phoebe's life saving stem cell transplant.

We have so much to be thankful for.

I have waited for this day for so long, and while we are not out of the woods yet, and Phoebe still has to undergo bone marrow tests at St.Jude in January to ensure that she is still in remission, and it will be years before she is considered "cured", we are on our way to safe ground.  We are carefully making our way to the edge of that once very deep, dark wood, and we are not looking back. 

Shout it from the roof tops. We are day + 365.

It was late in the evening, Dec. 1st of last year, that my stem cells arrived, ready to be given to Phoebe. Mae was thankfully being looked after by a friend who traveled to Memphis to help and I had been in the donor room for the entire day, starting the process at 9am and finishing close to 5. With a needle in each arm, the help of the fabulous donor room nurses, I was able to harvest a large amount of cells. I remember one doctor telling us that Phoebe received one of the highest amounts of t-cells for her small size, that they had ever given.  So much so, she didn't receive the second bag of cells that I gave the following day. It still sits, frozen at St.Jude, just in case.

To take you back to those days, I have to explain something about my husband. For those of you who know Jon, you know that he is a man of very few words, but that his face will often speak volumes. On that second day, while I was in the donor room giving the cells that we thought would be given to Phoebe later that evening, he came in and the look on his face was one of pure fear. I asked how Phoebe was doing and he said "okay", but written all over his face was panic. Phoebe was reacting to my cells and what he didn't tell me, because he knew that I couldn't be there with her, was that her body was in shock. Her oxygen saturation levels were dropping, heart rate was climbing, her skin began to turn a brilliant red, and she was beginning to have those fevers that were too high to register on a thermometer, only brought down slightly by a cooling blanket and Tylenol. He later told me just how terrifying this was, and apart from that short visit to see me in the donor room (which the doctor forced him to take), he was with her the entire time.

Phoebe fought her way through, one feisty step at a time, and today we are here, at the edge of the woods.

I often replay words spoken by our many doctors, and lately these words have been popping into my head more frequently as I am able now to recall different parts of Phoebe's journey. There are the words that I don't like to remember, that make me cringe and want to cry. The talk of zero and comfort care that we had so many times. Telling Jon and I that we were wrong to be so "fixated" on finding treatment. That "we don't give chemo, just to give chemo". But then there are words of hope. Words spoken by a doctor a few days after Phoebe's diagnosis, after the most frightening and fearful nights in the ICU at CHEO, nights that were spent praying for just one more hour with our baby.  Words spoken in the very beginning that said "we are here to cure her". Those words and their hope carried us so far. They carried us to Toronto and transplant, to hear the words of another hopeful doctor who spoke of Phoebe growing up and going to school. Imagining those milestones took us even further, but when Phoebe relapsed and we were told that all hope was lost and that she probably wouldn't survive, it was the words of another mother that I repeated over and over to myself.  This woman fought infant Leukemia with her child many, many years ago. Her daughter is now a grown woman.  Her words are what I would cling to when all hope seemed lost.  She told me to "always believe that Phoebe will be okay". Even when it seems impossible and very dark. "Believe and stay strong for her".

And so that is what we did.

We made it to St. Jude to where more hopeful doctors spoke words that still echo in my head. Things like; "when we cure Phoebe of her Leukemia". And "she is my little miracle".  Words filled with so much hope for Phoebe's future that they helped.  They may just be words, but they made a difference and they helped us to believe, even on the most terrifying days, that things would be okay.

Not a day goes by that I don't stop and take a moment to say thank-you.  It is usually late at night when I am checking in on Phoebe and Mae. I like to watch them sleeping peacefully and silently say thank-you for the small things, like sleeping in our own beds, and for the bigger things. For every single little breath and for getting to know a life without cancer. The blessing of being able to watch my children grow up.

I know that things could have taken a very different turn, and our lives could have looked very different. We took a chance by continuing treatment after Phoebe relapsed and we went against the advice of many doctors because we didn't want to look back and wonder what if. We didn't want to regret not trying that one more thing, because we believed not only could that one more thing save her, but we believed that by trying and treating Phoebe further, we were hopefully helping other little ones that might follow this unfortunate path.

As we learned, there is no set path for infant Leukemia that relapses so soon post transplant and among many oncologists, it is considered incurable. I am hopeful for change. Hopeful that these brutal, and astonishingly low survival rates will improve.

And so, we have seen six months of inpatient, intense and mostly high dose chemotherapy, countless rounds of chemotherapy injected into Phoebe's spine to target the central nervous system, a bone marrow transplant that came with enough chemotherapy to kill an adult and completely wipe out Phoebe's own marrow, and yet the Leukemia survived and thrived. We turned to a phase one clinical trial; a monoclonal antibody of which Phoebe was the first Canadian child to receive, another month of chemotherapy and high dose steroids, but still no remission. A flight to Memphis and St.Jude, five days and three different types of chemotherapy, an infusion of Natural Killer cells. Finally remission and restored Hope and a second stem cell transplant, this time using my mismatched cells and less intensive chemotherapy.

And now, thankfully, one year without cancer.

We hope that this is the end of all things cancer for Phoebe. I think that it should be enough, but there are children out there who we love who are still fighting after enduring all of this, and more. There are children who we have come to love, who will never grow up. The fear that we have lived with for most of Phoebe's life is still very real. Each day it is numbed a bit more, but it is still there.

One day we will look back at this life that we once came to know, this life with cancer, and it will be far behind us.

Shout it from the rooftops.   


Happy first transplant "birthday" Miss Phoebe Rose.


Hope is a beautiful thing, and we have been lucky to have had it shared with us from many corners of the world throughout this journey. We have been made stronger by the outpouring of love, support, prayers and beautiful positive energy and thoughts that we have felt at every step. Thank-you. There really are no words that match just how much this support has meant to us.



This holiday season, please consider giving a gift of hope. Consider donating to St.Jude and supporting the lifesaving research and work of this wonderful hospital. There are many ways that you can do this. One is to purchase a gift for someone on your list from the St.Jude gift shop as proceeds go directly to the hospital. You can shop by clicking here. Another is to support the fundraising efforts of the Littau family. Wesson's family, who are raising funds for St. Jude and running in the St.Jude Country Music Marathon in his honour. http://heroes.stjude.org/teamwessonwilliam

Thank-you also to everyone who has voted. My goal is to share Phoebe's story as a way to increase awareness and your votes have helped me to do this. Once again, if you have enjoyed reading, please share and/or click the "vote for me" link at the top of this page to vote. Thank-you! 





Monday, November 26, 2012

Bright, beautiful days

Many things have brightened my days lately, so I thought I would share a few.

Phoebe has taken the very last dose of a drug that she has been on for over two years.  She took the last few weeks of this drug, all by herself.  Telling me, "I got it" and snatching it out of my hand to put it in her mouth.  This may not seem like a big deal, but to Jon and I, it is huge. There was a time when we would have to hold Phoebe down and force her to take countless medications. Following advice of well meaning and knowledgable doctors, we did as we were told. This was not only the last dose of this drug, it marks the last dose of all post transplant drugs.  Miss Phoebe is drug free.

Today, Phoebe got into a snowsuit and made her very first snow angel.

Phoebe has taken to carrying a Santa Claus ornament everywhere she goes. She has affectionately named it "Christmas" and will give him hugs and kisses. It is a beautiful sight.

If you ask, Phoebe will tell you she would like Santa to bring her a princess. Mae will tell you that although she does not wish to sit on Santa's lap, she is going to draw him a picture and would like him to bring her a bath for her baby.  And they have decided that Santa would prefer milk instead of juice.

Last weekend we hung our Christmas lights outside. At the sight of these lights, Phoebe said a very long and quite adorable "awwwwwww". Mae was so excited to show Phoebe the lights that she woke her up from her nap. It was worth it, for all the times she said "look Mae".

We are getting ready to celebrate our very first Christmas together, at home, as a family of four.

Last week, Phoebe's check up at CHEO showed wonderfully normal blood work.

While at CHEO we saw many wonderful, familiar and smiling faces.  Happy to see Phoebe growing up. 

Our visit included a flu shot and a shot, given in each leg, to help prevent RSV. So many pokes. Mae spotted Phoebe's many band aids, and as I was putting her to bed she asked if we could make a wish. She wished for Phoebe to get "better and better, and for her bobos to go away". The first part of this wish was a nightly one while Phoebe was going through treatment, and hearing it again made me realize how much this has affected Mae. The sight of the band aids, hearing Phoebe tell her she had "bobos", brought back this familiar wish and a longing for her sister to be healthy, and it had me in tears.  Sweet, sweet Mae. Best big sister ever.

We celebrated Mae's fourth birthday yesterday, in the comfort of our own home, surrounded by family. 

We are looking forward to many more holidays, birthdays, and just regular days if it means they are spent together, and we are holding on to hope that we will continue to live this new life that we have gotten so used to. 

We are 360 days post transplant. 360 days without cancer.  

Go Phoebe go.  



You may have noticed the new icons at the top right side of this blog. They say, "vote for me", and if you like what you have read, please click to vote. Thankyou. 






Tuesday, November 13, 2012

First swim, first play group, first snowfall.


Day + 348 today.  Life is good and Phoebe is growing. She can now add swimming and playgroups to her list of things tried for the first time. She loved both. She took to the water in a wonderfully easy and natural way, kicking her legs, using her arms, and "swimming".  She smiled non stop and it was a beautiful sight.  Her big sister Mae held on to her for most of the time that she was in the water, "helping" her to swim and making sure she was safe.  Mae was also very excited to be in the water with her sister as she has gone swimming too many times without.

Phoebe is loving her new freedom and is becoming a "regular" at playgroup.  On our first visit, she walked right in, got settled and played her little heart out.  When I asked her the following week, if she wanted to go back, she answered with a very enthusiastic "yes!". It is interesting to watch and interact with other parents as it has been a while since I have frequented play groups and "normal" stay at home mom outings. The talk usually revolves around size, age, accomplishments, milestones ... as in, how old is she? She is small. Is she talking? Potty trained? I honestly try to avoid these conversations as I would like nothing more than for Phoebe to just be Phoebe, instead of Phoebe who has spent most of her life in the hospital. For the most part, she is, and most parents are unaware of the hardship and struggle she has faced. I have noticed as some notice her beautiful silver teeth with looks of wonder on their faces, however. Princess Phoebe with her many crowns.

Today, Phoebe saw her very first snowflakes. We stood at the window and watched as the very tiny snowflakes fell to the ground (and thankfully melted). Phoebe said "it's raining, look!" and when I told her that it was snow and not rain, she very thoughtfully answered, "it's raining snow, Mama".  Smart cookie.  I don't know how she will like the snow when it falls non-stop, covers the ground, needs to be shovelled, and when we are freezing our buns off waiting for the car to warm up to take Mae to school.  For that we will have to wait and see. I do not love winter, or snow, but I am so excited to take Phoebe toboganning, "skating" on the canal, and maybe even cross country skiing for the very first time.  Winter, snow and so much more awaits us.

For now, we will continue to take things one day post transplant at a time.  Working our way to one year and beyond, all the while keeping our eyes and hearts fixed tightly on the future and all of the bright things that await Miss Phoebe Rose.





This beautiful photo of Phoebe in action was taken by http://vinidhillonphotography.com/ It is not an easy feat to get this two year old to look at the camera.

Wednesday, October 31, 2012

Trick or Treat on day +335

We are back from a quick trip to Toronto's SickKids Hospital. Phoebe had her blood tested, a lumbar puncture to check the opening pressure of her spinal fluid (because it has been high in the past), and an eye exam. As usual, things were a just a bit complicated. 

The night before Phoebe was due to see her doctors, she started vomiting. She was perfectly fine one minute, vomiting the next, and then perfectly fine soon after. It was a short lived virus which I think is a good sign that her immune system was able to fight it off. It is a wonderful thing, that immune system. 

Her blood work looked good, a bit different because she was fighting something, but good, and her doctor was happy.  According to the eye doctor who looked in Phoebe's eyes yesterday, she still has papilledema. Phoebe is seen by the eye doctor at St.Jude and recently also by SickKids and there seems to be some discrepancy regarding whether or not her optic discs are "normal" or swollen.  St. Jude, who has been looking in Phoebe's eyes, sometimes as often as every two weeks for the past 8 months, says normal.  And SickKids says swollen. Only time, continued tests and good communication between hospitals will tell.  

In addition to this, her pressure was also a bit high for no apparent reason.

The plan is to repeat the eye exam and check the pressure with another lumbar puncture at SickKids in December and then again at St.Jude at the end of January, and hope that there is some improvement.

Each time I visit SickKids I am reminded of all that they do. There is a wonderful and very busy energy in this hospital and I love to just sit and watch all of the comings and goings. While Phoebe was napping, I had a chance to meet with one of her oncologists. The doctor who was responsible for bringing Phoebe to SickKids for that very first clinical trial. The doctor who thankfully gave us something to cling to when our hope for a cure was beginning to slip away. He gave us time, hope and supported us during a very difficult part of this journey and for that I am very grateful.  I am also grateful for all of the work that he continues to do to help other families who find themselves with few options for treatment and I am hopeful and excited to see all of the wonderful progress that is being made at SickKids.

This doctor and I discussed Phoebe and St.Jude and all that she has been through. At one point, he looked at her, sleeping peacefully, and said - I remember when we decided to have the palliative care team visit with your family.  I remember that too, I said.  And I do. That day and being forced to come to terms with facts that we didn't believe, was so difficult.  Then, with a slight grin on his face and pride in his voice he said, "she shouldn't have survived". His comment took my breath away, and with it came a flood of memories. Visiting with palliative care, being told our chances were zero, fighting so hard to be heard, refusing to give up. All of the tears. In that moment I felt like he was acknowledging how much we had struggled, while also saying - we did it. 

No one thought it was possible, but we did it.

And he is right. Statistically, there are very few Infant ALL survivors of a post transplant relapse, especially when a relapse occurs so early.  On paper, Phoebe wasn't supposed to survive. But she is not a piece of paper, or a statistic, or a number in a study and that is why we fought so hard to be heard. She is Phoebe, and like each of us, there isn't another like her. 

This doctor is doing what he can to make sure that the next family like ours does not have to be turned away, that treatment is offered, that stories are told, and that hope is shared. Hope, we have learned, is a beautiful thing.  

Today, Phoebe is 335 days post transplant.  We are so very, very close to the much anticipated and will be celebrated, one year post transplant date.  We are not out of the woods, but each day we get closer and closer to solid ground.  Each day brings with it more opportunities to live, love and experience life with the feistiest two year old I know, and her fabulous big sister. 

Tonight, Phoebe dressed up like a bunny and experienced  trick or treating for the first time. She was accompanied by a fantastic pirate and a beautiful fairy princess (her big sister and cousin) and she had a blast.  She was especially excited when she got her loot home and realized what is was that she had been collecting.  Her daddy also got to experience trick or treating (as a daddy) for the first time, and loved it. 

Note the carrot, what every trick or treating bunny needs.  Go Phoebe go ... 

Friday, October 26, 2012

Two Years

Two years. It has been two years since Phoebe's original diagnosis. I talk about Phoebe a lot, about all that she has gone through, but I very rarely go there. To those early days. It is painful and really just very difficult to remember and think about. The days leading up to the diagnosis; life with a fussy baby Phoebe who was presumably just colicky. Us trying desperately to settle her and to also settle into our new house with our new family of four.

Then just like that, it was gone. Just like that we found ourselves in a tiny room in the emergency area of CHEO, watching nurses struggle to get blood from our very, very sick baby. And just like that our lives were forever changed.

I am a different person today and one of my biggest regrets rests with the memory of too many visits to the emergency room before Phoebe's diagnosis. I knew something was wrong with my baby, but I never let myself go there. I never let myself believe that cancer could be a real possibility. I took comfort in the words of one emergency room doctor who said that cancer in someone as young as Phoebe was "so rare that it was practically impossible". I held on tightly to those words and I took my baby home. Without any answers, and after no tests were run.  The person I am today probably wouldn't let that happen and I wish I could go back and insist on a test. A simple blood test. I wish I could do this because it would not only have helped Phoebe but it would have changed the mind of this one emergency room doctor who spoke words to me that should not have been spoken.  Nothing, my friends, is impossible.

There are many details of those early days that I have never written about and that I rarely speak about. How Phoebe was poked to have her blood tested every four hours with great difficulty. The fact that her white count was so high that the lab was unable to read it. The looks of sadness, panic and worry on the faces of ICU nurses and doctors. The fear and unbelievable heartache. The blood exchange that undoubtedly saved Phoebe's life. The blood of so many generous donors transfused in, after Phoebe's own diseased blood, thick with Leukemia, was pumped out. This blood gave our baby strength and allowed her to simply begin her fight, thus beginning my extreme appreciation and admiration of blood donors.

I found myself a bit more emotional than usual today, and then I realized that today is the anniversary of Phoebe's diagnosis. Then I realized that we have other anniversaries that are far more important and I wondered if perhaps those very early days would be best laid to rest. That we should celebrate end of treatment, remission, birthdays, and all of the wonderful days in which we have lived without cancer. The days that we are blessed to have our family living, complete, and together under one roof. We should look ahead but never forget all that Phoebe has endured to be here today.  

A sweet and beautiful baby lost her battle with infant Leukemia today. She fought for most of her life and I was very lucky to meet her and her very special Mama while at St. Jude. Her family now has another anniversary to think about and it is one that no family should have to keep.

Hug, kiss, love, and hold your children tightly tonight and each night in which you are blessed to have them.  

Rest in peace sweet Ella.  

Monday, October 15, 2012

The Relay to End Kid's Cancer


Together, the members of team Phoebe Rose Rocks ran 100 km on Saturday as part of the Sears Relay to End Kid's Cancer.  Together, we raised over $30,000 for treatment and research of pediatric Cancer.

We ran, walked, cheered, shivered, laughed, celebrated and raised awareness for this very important cause.  It is simply amazing, what we can accomplish, when we work together. 

Among us were many truly remarkable individuals.  The volunteers who devoted their day to making sure we were hydrated, fed, happy, motivated and cheered for.  The organizers who worked so hard to make this day a success.  The other teams and runners, who like us worked hard to raise money and awareness for pediatric cancer.  Some were running for children fighting cancer, some in honour of children who are no longer with us, and others because they recognize that children's cancer needs and deserves more awareness and funding.  A few runners completed the entire 100 km distance solo.  Amazing.

One solo runner spoke after the event. He spoke about how he drew his strength when things became difficult, from the children diagnosed with cancer, those who are fighting for their lives and those who are no longer with us.  They are the real heroes, he said.  

It was a heartwarming and unforgettable day and I am so proud to have been a part of it. Team Phoebe Rose Rocks was made up of old and new friends and family. Many team members have been directly affected by a pediatric cancer diagnosis. Some team members traveled from Toronto to be with us, and everyone took time away from their families, not only to prepare for the event, but to be with us for the day.

And it was a long day, starting at 7:30 am and finishing at 7:30 pm with our team crossing the finish line together. It was a pleasure to spend the day with this wonderful team of people and to be a part of an event that is growing by the year and is truly making a difference in the lives of children and families faced with pediatric cancer.

At last count, the Ottawa and Toronto teams of the Sears Great Canadian Run had raised close to $750,000 in support of pediatric cancer research and treatment.  So great.  

Thank-you to the folks at the Sears Foundation, the volunteers, my fellow team members, other participants, all of you who donated and supported our team, and my family for making this day possible and simply wonderful.

I don't know where we would be were it not for advances made in the research and treatment of children's cancers.  It is thanks to the great efforts of the people at the Sears Foundation and many others who are working to raise awareness and funds for much needed pediatric cancer research that my girl is able to keep rockin'.



  

Wednesday, October 10, 2012

Thankful

The countdown is on to the Great Canadian Run. Team Phoebe Rose Rock's 100km relay trek from Ottawa to Montebello.  We have raised over $26,000 so far, over $2200 of which is pennies. Amazing things can happen, it would seem, when we are all united in a common goal. Look what happened when we all put our pennies together. 

The wonderful staff at Alterna Savings in Ottawa and Toronto put their pennies together and raised $1265. Children have emptied  piggy banks, encouraged their parents to empty pockets, change jars, and together we have made a difference. Thank you to each of you who gave pennies and spare change. To the local businesses who participated in our penny drive - Pizaza on Beechwood, Eufloria, Margot at Fresh, the staff and teachers at Ottawa Carleton District School Board, Ashbury College, to those who have encouraged others to give pennies, and supported our team.

We recently celebrated Thanksgiving here in Canada. Jon and I cooked our very first Turkey and hosted dinner. Thoughts of this time last year crossed my mind often as we prepared for our very "normal" holiday.  This time last year we had just arrived at St. Jude. We were full of so much uncertainty and fear and holding on tightly to hope. Hope was really all that we had.

Fast forward to today and it is amazing how far we have come. Our hope for Phoebe's future has been made stronger by the doctors at St. Jude and every day that we live without cancer, each time tests come back with positive results, it becomes mightier and mightier.

Our lives are good and we have so much to be thankful for. The small things - a roof over our heads after nearly two years without work, sleeping in our own beds at night, watching Mae make new friends at school, enjoying time together as a family, spending very little of that time at the hospital, sitting down to a meal, watching Phoebe eat, grow, take baths, dance, run, and play with her big sister.  Being able to hold our girls tight, cuddle, to rock Phoebe to sleep. A life without feeding tubes, central lines and countless medicines. Looking forward to trick or treating (Jon's first time with the girls), and our first Christmas at home.

We have a Thanksgiving tradition in my family.  Each year (except this one) we go around the table and say what we are thankful for. This year, although our turkey was delicious, it was served rather late, so perhaps the insatiable hunger took over and this was overlooked. The next day however, Jon and I were talking about this and about all that we are thankful for and he told me what he had wanted to say. And because it echoes my own sentiments, I thought I would share. 

We both agreed that we could not have survived this year without the help of our family and friends (old, new and some we have yet to meet), our village, and it is for them that we are so very thankful. At times it has seemed that we have had an army behind us. Holding us up, walking with us through the darkest days, offering a listening ear, a hug, a supportive message, a prayer. Sharing in our hope. You have all helped us immensely. 

Thank-you.  

All of the funds raised for the Sears Great Canadian Run will go to CHEO and Sick Kids. Life saving and so very important, Pediatric cancer treatment and research.  If you would like to make a donation, please click here .




Thursday, October 4, 2012

I have sat down and started writing this blog post countless times.  There is so much to say, yet I don't know how to say it.  My heart is heavy.  My friends, Kristi and Logan, recently lost their sweet baby. This is a family that we met while at St.Jude, their baby Wesson, was diagnosed with Infant Leukemia and their older son, Keegan, is the same age as Mae. Mae and Keegan became instant friends and they connected in a way that I have yet to see with another little person.  Wesson was just 13 months old when he died.

Now today, another friend, another baby, another fight to survive. Brave Matthew, also diagnosed with Infant Leukemia, is now in the ICU and working so hard to overcome all of the obstacles that have been placed before him.  He is on breathing support, completely sedated to allow his body to heal.  I cannot imagine what his parents, or Wesson's parents are going through. Just the thought of all that they have seen and are witnessing brings me to tears.  It is just not fair.

We need to do better for our babies. These babies deserve more than just "options" for treatment, more than the small chance of a cure that they are given, a cure that is all too wrought with complications.  They deserve to grow up without cancer.  

Last month was Childhood Cancer Awareness month and I really struggled with what to post in this blog. I wanted to challenge everyone to give blood because one single Leukemia patient requires blood from 3 donors each week just to survive. I wanted to urge each of you to join the bone marrow donor's registry as many people who fight cancer will need this to survive.  I wanted to ask you to give. To give to organizations like St.Baldricks, St.Jude, Alex's Lemonade Stand, Cure Search, Childhood Cancer Canada and others that support and fund childhood cancer research. I wanted to tell you stories of the many children that I have met, that have inspired me and moved me to be a better person. I wanted to increase awareness and support for children fighting cancer.  Instead I wrote and I erased.  Over and over again.

Last month we lost too many friends.  We spoke with families who are in the midst of the terror that comes with treatment, the devastation that comes with complications, relapse, death. Last month there was too much grief.

Yet in the midst of all of this, we lived. 

I brought Mae to school (without tears), I played with Phoebe, I listened as complete strangers commented on how cute my sweet girl is, how small, her "unique" hair style.  To those who focused on size and hair, it took almost everything in me not to blurt out ... she is small because she has fought cancer, and as crazy as this hair is - it is precious because it is growing back for the third time. But instead I said nothing.

All around you are children who are fighting or have fought cancer.  All around you are parents who have had to say good bye to a child. Who are picking up the pieces.  We are not obvious, and you probably can't pick most of us out in a crowd.  Our children are not necessarily bald, or small, or obviously sick.

In Canada, this year, 1500 sets of parents will hear those devastating words - your child has cancer.  1500 lives will be turned upside down.  While all of this is true, the statistics surrounding childhood cancer and its support remain dismal at best.  One new drug in twenty years, 4% of National funding, a penny from each dollar raised, a disease often referred to as orphaned.  Our children deserve better.

And so, if you are able.  I would ask you to please give blood, register as a bone marrow donor.  Donate.  I truly belief that a difference can be made.  I have seen miracles happen and I have witnessed wonderful progress.  We have met many amazing people on this journey, people who are working tirelessly to save our children, to advance the cure, to better the lives of children and families who are fighting cancer. Phoebe has benefited from this progress, and she is here today because of these blood and bone marrow donors, this hard work, and these people who work tirelessly to advance the cure.

Please also take a moment and send some love and prayers to sweet Matthew and his family.  He is working so hard, as he always has, to survive and his family deserves some good news.

To register as a bone marrow or stem cell donor, please visit.
www.onematch.ca

To give blood, please visit. 
www.blood.ca






Tuesday, September 25, 2012

Three hundred days without Cancer

We have been busy.  Adjusting to school life has been difficult for Mae.  Despite the fact that her first week was wonderful and she would run to join her class in line, she has since become the child that cries and clings to her mother screaming "I don't feel well, I am going to vomit!!" while her teacher asks, "do you want me to just take her?", at which point she is pulled from me as if the place she is going is one of extreme torture.  It is not, and I need to keep reminding myself of this.  It is "just" school.  

All of this crying and chaos is hard on Phoebe too and she will often say, "what happened?" when Mae starts to cry and then she will cry as Mae is pulled from us and brought into school.  It is hard, but I know that it will get better.  Our lives have not been normal, and Mae and I have rarely been  separated for the past 2 years so it will take some time.  Time, as they say, heals all wounds.  I see glimpses of my social and happy girl emerging at school and this makes me smile. I know that Mae loves school, she just wishes Phoebe and I could join her in all of this excitement.

In other news, we have recently returned from Memphis.  Phoebe saw her transplant doctor, the dentist, and had her blood tested.  We returned home happy, tired, and 4 teeth lighter.  That's right ... 4 teeth lighter.  It would seem that Phoebe's four front teeth were loose and an x-ray showed a lot of damage to the root.  They had to go, or they would have fallen out themselves and caused more trouble.  They are just teeth, is what I have been telling myself, and she will get another set in good time.  Until then she will have a lovely gummy grin.  This gummy grin also includes some shiny silver as a few of her back teeth have also been crowned.

A few more stories to tell her friends when she starts school. 

I have found myself thinking lately about what life will look like when Phoebe starts school.  I have been worrying about her missing teeth and wondering if she will be teased or if her speech will be affected.  Then I stop, because to be thinking of Phoebe going to school is simply amazing as there was a time not too long ago that we weren't sure if Phoebe would see another birthday.  And now school?  Wonderful.  All of those other things will just work themselves out, and as Jon likes to tell me, if anyone even thinks of teasing Phoebe, she will tell them where to go.

Yes, I think she will.  

Tomorrow we will be 300 magical days post transplant, Phoebe's bloodwork at last check looked excellent and her doctor even gave her the okay to start daycare, if she so desires.  He commented on the strength of her "warrior immune system". We are so very close to our one year milestone and Phoebe is doing so well.   

Shout it from the roof tops.  Happy day + 300.