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.

Saturday, July 28, 2012

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 ...
Growing up

Friday, July 20, 2012

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.  

Wednesday, July 11, 2012

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.

Saturday, July 7, 2012

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.