Wear Gold this September

September is Childhood Cancer Awareness Month and my heart is full of equal parts joy and sadness. 

I haven't written in a little while partly because I don't have much to share which is truly wonderful.  Phoebe is doing very well, loving life and living it as full as a two year old should.  Her last check up at CHEO showed perfect blood work, she is using the potty - randomly but still, and to most people we meet who don't know her she is a regular albeit small two year old.  She makes up for her size with her spunk.  Her big sister is preparing to start Kindergarten in September and together, they fill my heart with joy.  

My heart is heavy and I have not written because there are so many other stories that are not mine to tell that weigh heavily on my thoughts.  Too many children fighting, too many parents forced to make incredibly difficult decisions.  Too much sadness. 

Tonight, as Jon and I were out for a walk with Phoebe and Mae, we were talking about some of these children, children that we have come to love, and I asked him how it is that I had no idea of this world of childhood cancer before it happened to me?  How is it that I was blissfully unaware of the hardships, sadness and pure terror that it brings?  The fact that seven children die of cancer everyday in the US. That the equivalent of an extra large elementary school classroom is diagnosed with cancer everyday.  I remember one child growing up who had cancer.  One.  Today I know far too many.

I have heard many people tell me throughout my journey with Phoebe - of which I have been very open about sharing - that they "just can't read", that it is too much.  And to this I wish I could say ... imagine living it.  Imagine it is your child.  Your life, your devastating new reality, your heart ache, your sadness.  Your loss. 

Something needs to be done and we need to find a cure.  I am obviously very passionate about this because it has happened to me, but my hope is that through writing about Phoebe, one more person might be moved to action - to make a donation, to share a story, to give blood, become a bone marrow donor, volunteer time ... act.

Despite the realities that we have been faced with and the sadness that sometimes fills my days, I am hopeful.  I believe a cure will be found.  I believe in the people that I have met on this journey who are working hard to make it so.  And I have seen progress.  Wonderful progress and positive steps forward.  Phoebe is here because of that progress and because of those steps. 

And so in honor of childhood cancer awareness month and in support of all children who are battling this disease, we have "A Night to End Kid's Cancer".  This special night of music is organized by team "Phoebe Rose Rocks" - a team of twenty (including myself) who are running from Ottawa to Montebello in support of treatment and research of children's cancers in Canada.  It is happening at the one and only Zaphod's http://zaphods.ca/ on Saturday September 15th. 

All money raised from ticket sales will go to CHEO and Sick Kids and their efforts to treat and find CURES for children's cancers.  You have a chance to win prizes, listen to great music, support local talent, laugh, have a few drinks with some great people, wear gold and support children battling cancer and those working hard to find a cure.  A win, win I think. 

For more information on this event, team Phoebe Rose Rocks, or how to purchase tickets, please visit our event page on Facebook.  https://www.facebook.com/events/468169226540055/

Happy Birthday Bright and Shining Phoebe Rose

When Phoebe was in the midst of treatment, I remember thinking often, that to make it through a single day would be a small victory.  I would repeat over and over to myself that tomorrow is a new day.  Today, looking back on all that has happened, I am thinking of what a difference a year has made.  This time last year we were anxiously awaiting a phone call or email from our doctor at Sick Kids about possible treatment options at St. Jude.  It was Phoebe's birthday (August 8th), and I was checking my email constantly, keeping the phone line free, while also trying to have some kind of birthday celebration.  We heard nothing that day and when we eventually heard there was no good news of innovative treatment, or of anything at St.Jude and we were left wondering what, if anything, could be done about the Leukemia that was raging untreated inside our baby's body.   We celebrated Phoebe's first birthday quietly and with intense uncertainty.  My sister bought Phoebe a beautiful outfit to be worn on her first birthday - a pink tutu and t-shirt that said birthday girl.  It was too big and realizing this brought tears and sadness as I worried that Phoebe would never wear it, that she would not have another opportunity.  Another birthday.  

Rewind from this first birthday to Phoebe's day of birth and the joy and excitement that filled those hours and minutes.  The day that Phoebe Rose entered this world.  It was a chaotic, frightening and powerful experience, full of joy and intense emotion and as soon as she entered the world, her strength was unmistakable.  Together we fought and struggled, completely drug free, for her almost 10 pound self to be born and then it seemed that we fought for the entire year that followed. 

We didn't know what Phoebe's name was going to be until she was a few days old.  We went back and forth quite a bit, between Rose and Phoebe for her first name, and because the name Phoebe was met with a few adverse reactions from family members, we wondered and worried if it was right.  In the end, it just was.  She was Phoebe and there was no other name that suited her like it did.  A few months later and when we were in the midst of treatment, we learned that the meaning of the name Phoebe is bright and shining and that in Greek mythology Phoebe is a warrior princess.  How wonderfully fitting for our girl. 

And so here we are today, two years later and what an amazing and incredible difference this year has made.  Phoebe will be 2 years old tomorrow.  We had a little birthday party for her on the weekend and she wore her pink tutu and birthday girl t-shirt and she is celebrating and living life as a 2 year old should.  She is now 250 days post transplant and at her latest check up, all of her blood work looked to be perfect.  Life is no longer lived hour to hour or day to day, but we cautiously and excitedly look forward months to Halloween and Christmas, to more birthdays and happy years.  Tonight as I was putting Mae to bed, and almost as if she was reading my thoughts, she said - "I wish that Phoebe grows up to be as big and strong as me, and that she learns more words, and goes to school like me". 

We have met many wonderful people on this journey.  Friends whose children are still in the midst of their battle with this disease, who are faced with uncertainty or a new hurdle.  Friends who will not see their children grow up.  I can honestly say that not a day goes by that I don't think of these beautiful and courageous children and feel so incredibly thankful and blessed for all that we have seen this year. 

This is Phoebe with her "courage beads" - an almost finished necklace that tells a story of her many months of treatment.

Life at home

This day, one year ago, was probably one of the worst of my life.  Learning that Phoebe had relapsed, that all of the treatment she had received had been unsuccessful, that her cancer was back with a vengeance, and that now it would be even more difficult to treat and cure, was devastating.  However, knowing that this unfortunate anniversary has passed by without much agony or stress, and really without many thoughts is kind of wonderful.  It is not an anniversary that I think I will choose to remember.

Today Phoebe is 240 days post transplant, she is loving her new life and instead on focusing on this day last year, I will focus on today and all we have been up to.  On life.

And so here are a few shots of all that Phoebe and Mae have been doing since she has been home.  She has been having fun. 

We have been hanging out at airports, watching planes and taking off to not so far destinations

 To Memphis for check ups and fun at St. Jude

Spending time at home

 Loving new found freedom, life without a central line and getting dirty ...

 

"The pool"

 

 Cruising in the 'hood ...

 

 ... with a baby in tow.  

 Blowing kisses

Visiting lovely small towns, and sitting in extra large chairs.  Just for fun.  

 An unexpected trip to the splash pad - no time to change out of jeans.

More splash pad fun

Walking ...

Cuddling

Growing up

Princess Phoebe with her many crowns ...

I am rarely speechless.  I am the type of person that will chat nervously when I am uncomfortable - something I have done a lot of over the past 22 months.  However, today at the dentist's office with Phoebe, I found myself at a complete loss for words.

It would seem that the many, many months of toxic and high dose chemotherapy, the steroids, all of the other medications that Phoebe has taken over the course of treatment, the constant vomiting while on chemo, the way she held food in her mouth when she was (re)learning how to eat - all of this has taken a toll on her teeth.  It appears that she has little to no enamel on many of her teeth - I noticed that they looked "different" when I was brushing last week and scheduled a visit with the dentist.  I just wasn't expecting it to be so bad ...

I learned that in the opinion of the dentist that Phoebe saw today, a pediatric dentist working out of CHEO, she will need a crown on every single tooth on the top of her mouth and four on the bottom.  One of her bottom teeth may need to be pulled if it cannot be repaired.  This was the moment in which I became speechless.  What is there to say to that ... I think I mumbled something about brushing teeth and how we do it at least twice a day.  Which we do. 

I feel terrible.  On one hand I think that if this is what we are dealing with after all that Phoebe has been through, that is okay.  The list of possible long term complications for a child who has gone through treatment for cancer is very long and very frightening.  But we can fix teeth, these are her baby teeth, and I know that it could be very much worse.  On the other hand, I think - hasn't Phoebe been through enough?  Seriously.  All of this dental work will need to be done under general anesthetic and there is no guarantee that Phoebe's adult teeth will not come in with similar issues. 

Last night Jon and I were watching Mae and Phoebe in the bath and discussing Phoebe's teeth.  This was before we saw the dentist and I asked him - do you think she will need a crown? (a single crown, what was I thinking?)  Mae then piped up - a crown?  on her teeth?  I want a crown for my teeth too.  Can I get a crown like Phoebe?  

She will be Princess Phoebe with her many crowns. 

And because I like to end my blog posts on a good note, I will say that in regards to the long list of possible long term and life altering complications, Phoebe also had her hearing tested today.  I am happy to report that she hears perfectly well and the audiologist even commented that she was impressed by Phoebe's speech.  
 

Thank-you Nurses ...

Yesterday we went to CHEO to have Phoebe's blood work done.  Our doctor at Sick Kids thought that since it is only blood work that Phoebe needs, we should save the time and gas that it takes to get to and from Toronto and go to CHEO.  We did and despite the pretty intense anxiety that I feel when I walk through the doors of this hospital in particular, everything went well.  The blood work looks normal and Phoebe was happy and excited to see many familiar faces.

Being back at CHEO it is hard to believe that we lived here for 6 months.  That the very small and not at all private rooms were home to Phoebe.  It was on 4 North that Phoebe first rolled over, sat up by herself, she celebrated her first Halloween in the ICU, Christmas in room 1 - complete with an early morning visit from a very real Santa Claus, Valentine's day was in room 6 and her first Easter was in room 14.  We brought in the new year with chocolate covered strawberries and smuggled in champagne and we rejoiced in the simple and small victories that we won each day.

While we were at CHEO yesterday we went upstairs to 4 North, CHEO's oncology ward, to visit with some of Phoebe's nurses.  They were very happy to see her and the feeling was mutual.  The nurses that spend their days on this ward are some of the most wonderfully kind and caring people that I have ever met.  They take the time to get to know the patients and their families and they helped us through many long days and nights.  I remember our first night on 4 North.  Phoebe was finally out of the ICU and she was wheeled up in her big hospital crib to the place where she would spend the next 6 months.  We entered the dark room and tears instantly started to flow.  It was dark and cold - not a place where I envisioned rocking my baby to sleep, or watching her grow.  I was devastated and Jon was obviously upset.  I remember him saying - this is where we are going to live over and over again.

We stayed in that room for a long time, never coming out for fear that if we did what we were going through would be even more real.  Child life specialists and the wonderful clown, Molly Penny would come in, trying to coax us out with talk of the playroom and activities, suggesting we take a walk, or let Phoebe sit with the nurses.  Go and get a coffee they would say - I will look after your baby.  No, I would answer politely - we are okay.  I want to stay.  And in all honesty, I was afraid to leave her in those early days, even if it were just for a second.  The nurses became a constant source of support in a sea of uncertainty - we didn't know what each day would bring, how Phoebe would react or respond to treatment, what obstacle or hurdle we would face but we knew that with all of that there would be an incredibly supportive person or people to walk through it with us.  They would often sit down and talk to us about Phoebe and life - getting to know us and day after day they would calm my fears. 

Slowly 4 North became home.  The nurses and staff became family.  Phoebe shared smiles and giggles with her nurse friends and occasionally she would even let one nurse hold her.  But only one.  What we thought would never happen did - we warmed up to the very cold walls that surrounded us. And this was all the work of these special nurses, child life specialists and the wonderful Molly Penny.

Our experience at CHEO was not ideal - how could it have been given the circumstances?  It was full of worry, hurt, anger - mistakes were made and there were times when I felt like no matter how many times I spoke the same sentence to our doctors, I was not heard.  All of this is true but I have come to realize that I remember more the friendships we made, the nurses who came to love our Phoebe and care for our family and the support we felt while in their care, than the hardships we endured. 

And so I would like to do what I can to help this little hospital be as big as it can be.  To honour the people who work tirelessly to make the children on 4 North smile.  This is why we are running in the Sears Great Canadian Run.  All proceeds from this event will go to CHEO and The Hospital for Sick Children in Toronto.  The money will be used for research initiatives at Sick Kids, working to find a cure for children's cancers, and treatment of children and their cancers at CHEO.  It will go towards making the lives of these children better.

If you would like to help - please visit http://searscanada.akaraisin.com/RunOttawa2012/jennydoull

To all of the nurses and child life specialists at Sick Kids, CHEO and St. Jude, that we have had the pleasure of meeting on this journey, who have cared for Phoebe, nursed her back to health, brought smiles to our faces, celebrated our victories and supported us through our grief.  We thank you from the bottom of our hearts.  You are doing a wonderful and very difficult job and we admire you.

Phoebe at 6 months old, laughing and playing with her friend Molly Penny.

Counting my blessings ...

There is an element of fear in each of my days.  Sometimes I hardly notice it - it might happen when I realize that Phoebe has slept in, or when she doesn't eat as much for lunch, when she naps longer than usual, cries more often - I brush it off, thinking to myself that I am crazy and neurotic and that everything is fine.  It is hot, we are all tired and cranky.  It is fine.  But sometimes it keeps me awake at night.  It comes in a rush of panic, fear and worry.  Riding on the memories of children who are no longer here, absorbed in the thoughts of parents and families who have heard devastating news of loss or relapse.  A story of a beautiful and seemingly perfect and healthy child whose blood work or spinal fluid said otherwise.  It never really goes away. 

I choose each day to ignore it.  I force it to the very back corner of my mind and I live my life and focus on all the good and positive things that are filling my days right now.  I do this to honour those children who have not been allowed the wonder of growing up.  For the families who are left to pick up the pieces of a life that is to be lived now, without all of its precious pieces.  And because if I let the worry take over, I might just lose my mind. 

We are complete, we are through fighting cancer, we have been given a beautiful gift and each day is a cause for celebration.  Phoebe is here.  We are here and although cancer still haunts my thoughts, it no longer runs my life.

Last night for the second night in almost 20 months, my sweet baby Phoebe went to bed without receiving any medications.  We did not have to hold her down, politely ask her to open her mouth, and when she cried as most of us would, we did not have to force her to swallow multiple foul tasting medications.  This sad routine, has been ours for too long.  The worry of fungal and viral infections, a weak and not yet recovered immune system, and instructions from knowledgeable doctors trumped any kind of comfortable bedtime routine for Phoebe.  However, last night, and today and hopefully for the rest of her long life - Phoebe's immune system is strong.  It is not yet perfect, but it is getting there.  The results of the helper t-cell test (these are wonderful white blood cells that fight against viruses and have been shown to also kill cancerous cells) that was done as St. Jude shows that Phoebe's cells are now high enough to warrant removal of these medications.  We are now down to one single drug - given only 3 days a week, an antibiotic that will also protect Phoebe from PCP pneumonia.

And so today, I am counting my blessings.  Each and every one because as one of our doctors once said ... we don't know what the future holds.  I can only hope and pray that it holds my family together. 

Peace out line number 9 ...

After fairly usual airport shenanigans which included extra questions going through security, a stroller that tested positive for explosives, Phoebe and I being thoroughly searched and patted down, some screaming on the plane - from Phoebe when she wasn't able to sit in the empty seat beside us during take off and landing, and a great big sigh of relief upon landing in Memphis.  We are back at St. Jude.

Phoebe is good, great actually, and so far everything looks very close to perfect with her blood work. She was very happy to see her doctors again and to be back at St. Jude- she actually started clapping as we pulled up to the Grizzlies House.  It is a special place, St. Jude.  We will get results from her chimerism and other tests early next week.  One of the tests that they run is a measure of Phoebe's helper t-cells - this is to determine how well her immune system is working.  On the last count, she had around 250 helper t-cells and the doctors want to see the number at or above 400.  If it is at this level, life as we know it can return to a bit more normal.  Phoebe will not need to as isolated as she has been and she can hopefully start to experience things that other children her age are doing.  Like going to the park on a beautiful summer day.

As I write this, I am sitting in the waiting room waiting for Phoebe as she has what I hope is her last procedure.  Yesterday, when her line was pulled (yes, it is out!), the cuff of the line got stuck and this morning she was sedated so that the doctors can remove it surgically.  Despite all that I have seen Phoebe endure, watching the effects of sedation take over her little body is quite possibly one of the most frightening.  I worry about many things and holding Phoebe as her body goes limp in my arms, is something that has always sent me into a panic.  I will not miss this feeling and hope I have experienced it for the last time.  Sitting here, I am wondering how many times Phoebe has been sedated.  I think it is too many to count, so instead I will continue to count the many days that she is away from all things cancer.  Today we are 211 days post transplant and very soon Phoebe will get to splash for the first time in a wading pool, run through a sprinkler to keep cool, and take a tube free bath.

We are very lucky and being back at St. Jude just makes that seem so much more so.  Phoebe is doing it and this visit brought us to another milestone in treatment.  We will now, despite my anxiety, be visiting St. Jude once every 2 months instead of monthly.  The doctors explained too that at our next visit in 2 months, Phoebe will be 9 months post transplant and at that point her visit stretches out even further and she will be seen next when she reaches one year post transplant.  Wow.   We will still be taking her to Sick Kids for regular follow up, probably monthly now instead of every two weeks, but we are slowly and happily making our way away from all of this.

Life, as we know it, is getting back to normal.