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 ... 

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.  

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'.

  

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 .

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