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.

Thursday, May 24, 2012

Digging in the dirt

I am planting a garden.  And I am full of hope, that like my strong Phoebe Rose, these plants will grow and flourish.  It brings me a lot of peace to dig deep in the dirt, get my hands, knees and sometimes even my face dirty, and make this house more of a place that we would like to call home.  I like to read the description of the plant and for the ones that promise to bloom in the late summer or early fall, I like to imagine all of the things that we will be doing then.  Running through sprinklers, splashing in wading pools, getting Mae ready for school, watching leaves change colour, growing out of shoes and clothes - so many things.  As each month passes, I think of how far we have come, all of the obstacles that we have overcome and all that we have to look forward to.  

We are doing well.  For real this time.  In the past when I have written that we are "well", it was in relative terms.  Relative to whatever chemotherapy, infection, hospital stay, crisis or upheaval that may have been taking its toll on Phoebe and our family.  Today we are well.  We have overcome our first household cold and Phoebe appears to (knock on wood) have been the least affected.  She has a slight runny nose that has definitely not slowed her down.  To me this is a wonderful sign that this new and recovering immune system is doing its job.  It is working and that is simply incredible. 

Our next hospital visit is next week and it is a trip to Memphis.  I am excited but also anxious as this visit will include a chimerism test to make sure that Phoebe's blood still consists of only my cells.  I am choosing to focus on the fact that it will be okay rather than let my mind wander to places and thoughts full of worry.  Phoebe is thriving and what a better thing to focus on than that.  She is a bundle of joy and energy.  22 pounds of pure joy.   She is loving life, all of her new found freedom, and she has been practicing her walking and saying many new words.  I think she will be excited to show off these new skills and independence to her doctor and nurse friends at St. Jude.  

In other news - this weekend is a busy one.  On Saturday team "Phoebe Rose Rocks" will be taking part in the Great Glebe Garage Sale.  If you are in Ottawa and garage sales are your thing, or if you simply want to stroll around the Glebe, munching on delicious baked goods with a glass of lemonade in hand, then stop by 240 First Ave and look for the gold balloons.  All proceeds from the sale of said baked goods, lemonade and all kinds of treasures (toys, sporting goods, art, furniture, electronics, and many other finds) will go towards our fundraising efforts for the "Sears Relay to End Kids' Cancer".  We will also be collecting pennies, if you have been saving those for Phoebe and this important cause. That means that all money raised will go towards treatment and research of Children's Cancers in Ontario.  A win, win I think.  Shop, eat and cool off all for a good cause.

Sunday is the very important half marathon that I will be running for Candlelighters.  I am happy to say that I have now raised close to $1000 for this wonderful organization that has been a huge support for my family.  For more information on Candlelighters and all that they do, please visit.  www.candlelighters.net


Saturday, May 19, 2012

Daddy and daughter road trip ...

Phoebe and her daddy took a road trip to Toronto this week.  Just the two of them because Mae was sick with a cold and therefore needed to be separated from her sister.  So off they went, for a night in the big city and a check up with Phoebe's doctors.  Apart from a long ride home in long weekend traffic, it was a successful and joyful time.  After the long two week wait without being tested, Phoebe's blood work looks good and her doctors were happy to see her.  She showed off her new skill, walking down the hall past all of her doctors and nurses, some of whom haven't seen her since she was very ill and with an uncertain future. Walking is now her thing and she spends most of her time on her feet, looking very proud of herself.

Phoebe is very attached to her daddy and when he left to go and get things from the car soon after they got home, the house was suddenly filled with shouts of daddy? as she walked around searching for him.  Like two peas in a pod, they are.  During their time away, Phoebe also learned to drink from her cup without the lid on - just like a big girl and without any big spills.  She is looking and acting more and more like a little girl and less like a baby everyday.  Growing up and growing fast.  She is finally gaining some weight, and after many months in the 8kg range she is topping the scales at 9.2 kg - something that makes us and her doctor very happy.  Grow Phoebe grow.

So far, Phoebe has yet to catch Mae's cold but we will be watching her very closely over the next few days.  For now, Mae is keeping her distance and we are holding our breath.  With Phoebe's newly recovering immune system, a cold could turn into something serious and it is something that we hope to avoid.  Fingers crossed.

Our next stop on the hospital list is a visit to St. Jude at the end of the month.  This will be a chance for Phoebe's doctors to look her over, for the chimerism and other important tests to be run, and to make sure that everything is still on the right track.  We are hopeful for a short and sweet visit, with good news and a chance to see some of the families that we miss and the wonderful and very brave children that are never far from our thoughts. 

Monday, May 14, 2012

165 days

Yesterday marked one year to the day of Phoebe's first transplant.  It was Friday May 13th, 2011 that Phoebe received what we had hoped would cure her.  The day before this life changing event, a kind and selfless woman woke up somewhere in the world, went to her local hospital, and donated her bone marrow.  All with the intent to help and possibly save someone she had never met, and will probably never meet.  The world, I have learned, is full of some very incredible and kind people. 

This year on the 13th, instead of celebrating one year post transplant we celebrated 9 days away from a hospital, and mother's day, together and outside the confines of a hospital room.  Instead of rejoicing in milestones that could have been, we rejoiced and celebrated milestones that are.  Phoebe is 165 days post a second transplant.  She is walking, talking, and loving her new found freedom.  We will never know what life would have looked like had our journey been shorter, less traumatic or less chaotic; without the extra stops in Toronto and Memphis, and frankly it really doesn't matter.  We are here, Phoebe is here, and despite our bumps, we are adjusting and happy to be almost 6 months post transplant.

Life could be very, very different and we take each day as it comes and try to celebrate it for what it is: a gift and a blessing. 

Today our 9 day non-hospital streak ended with a short visit to CHEO.  Phoebe is good.  The visit was simply to go over her care in a nice and stress free way, rather than to have a first visit back a chaotic one with a fever.  For the time being, Phoebe's post transplant care will be handled by Sick Kids and St. Jude but any fevers or emergency will mean a visit to CHEO.  This visit was a kind and thoughtful suggestion made by the staff at CHEO and one that was happily taken up by Jon and I.  It was nice to be back, to see the smiling and welcoming faces of doctors and nurses and it is a wonderful feeling to know that many of these faces were thinking of our sweet Phoebe and hoping for her safe return. 

In other Phoebe news, she is walking more and learning new words everyday.  She is loving being home with Mae and most mornings, shortly after she wakes up, she calls out to her sister from her crib.  Mae loves this and will usually go in to Phoebe's room and say "I'm here!  Phoebe, i'm here!"  When this happens, it is hard to not wake up with a smile on my face and hope for a wonderful day.

To learn more about becoming a bone marrow donor - please see www.onematch.ca

Sunday, May 6, 2012

A trip to the big city

We have now been home for five whole and very full days.  It is so nice to be home and to be making this house that has been ours and mostly empty for almost two years, into a home.  We had a very successful and happy visit to Toronto's Sick Kids hospital on Friday.  I have always loved the energy at Sick Kids - there is this wonderful positive feeling and I know that within this building, many people are working hard to save lives and to find cures.  I was happy to be back, despite the fact that it took us five long hours to get there.  Everyone that we met was so happy to see Phoebe and we were excited and proud to show her off.  All of her blood work came back looking good and normal and the focus became nutrition, weight gain, and development.  All of which Phoebe's doctor is happy with - all things considered, but agrees that now is the time - when we are "off treatment" to really work on growth in these areas. 

Phoebe's doctor was so happy to see her and there was a wonderful feeling of joy and excitement in the small room.  He sat across from us just watching her and at one point, commented on how far she has come.  Upon hearing that she is 5 months post transplant he actually clapped his hands together and cheered.  I will say it again - there is nothing quite like joyful and excited doctors.  And defying odds.

And so here we are at home and we now have two entire weeks off from hospital life.  I was thinking to myself when I heard that this was the plan, that I couldn't remember the last time we had this much time between appointments.  Then I realized that we have never had this much time off from a hospital.  We are hoping that less time in a hospital, and more time enjoying the comforts of home, will become our new normal.  And we feel very blessed to have this time together. 

And now for some pictures ...

The Target House - where we would call home for 7 months and a truly magical place. 

Our memory board - a small glimpse into our stay at St. Jude that will hang on what was our floor at the Target House for other families to see. 

 Leaving on a jet plane ...

 So happy to be home!

Happy to be swinging sisters. 


Wednesday, May 2, 2012

Home sweet home ...

We are home.  Sweet, sweet home.  Our journey home and the packing that it took to get us out of the Target House took up two of the most stressful days I have probably ever spent.  So much stuff accumulated, so many wonderful friendships made, and so little time to really say good bye.  Thankfully my mum flew down to Memphis to help.  I really don't know what I would have done, or the state I would have been in when I arrived at the airport, were it not for her.  It was a very stressful and very busy couple of days ... but we are home.  Phoebe and Mae were both very good on the flight and they were both (as was I), so excited to see their Daddy. 

We had a wonderful greeting at the airport, complete with cheers, signs, tears, shouts of "Daddy" from both Phoebe and Mae, and much to Phoebe's delight, balloons.  It was a wonderful and long awaited welcome home. 

To make our home coming all the more wonderful, Phoebe's doctor called as Jon was leaving for the airport to tell him that the chimerism results were in early and Phoebe still has 100% donor cells.  They also ran a lot of viral tests, one of which had been positive earlier but with very few copies, and this week all are negative.  Our doctor explained that this is a sign that Phoebe's new immune system is getting stronger.  And great news to come home to. 

Tomorrow we will head to Toronto for some Friday morning appointments and blood work at Sick Kids.  We are excited to see Phoebe's doctors again, to share with them the little girl that is all grown up and walking, and we are hoping for a good and non-eventful day. 

While being home is truly wonderful, it comes with a fair number of challenges.  It is frightening to be away from the comfort zone that is St. Jude.  Phoebe's chimerisms will now be checked monthly instead of weekly and her blood work once a week instead of twice.  It is good as we are taking steps forward and away from all things cancer, but also so very frightening to not be constantly aware of what is going on inside of her body.  I am however, going to take the advice of a very strong woman, a Mama to another baby who is fighting this terrible disease - I am going to allow myself to step away from this world of cancer and to enjoy life at home with my beautiful and complete family.  To rejoice in the fact that we are together, that Phoebe is thriving, and that we have many, many days to look forward to.  I am thankful and happy and I am going to allow myself to be just a little bit more normal.