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.

Friday, June 29, 2012

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.

Sunday, June 17, 2012

200 magical days ...

 We are back from another trip to Sick Kids and all looks good.  Phoebe's blood work looks very good in the words of her doctor and he was impressed with how well she is doing.  They were not able to pull her line, simply because they couldn't squeeze us in to the busy schedule but St. Jude has agreed to do it on our next visit at the end of the month.  We saw more familiar faces on this visit to Sick Kids - doctors and nurses who were with us during Phoebe's first transplant, who came to check in on us after her relapse, and who were happy to see her looking almost all grown up.  Having spent so much time in the hospital, we feel very close to these people and they have made a definite impact on our lives.

After hearing good news, we set off for our first family vacation (and I use the term vacation very loosely) to Niagara Falls.  Friday happened to also be Jon's birthday so we thought, why not celebrate by watching a guy walk a tightrope across the very large, impressive and frightening Niagara Falls?  We managed to find a hotel room close to the falls with a perfect view of the tight rope so we were able to see the action in the comfort of our room and avoid the crowds.  It was fabulous and exciting to watch such a historic event and apart from a couple of long drives, it was a great weekend.  It is really wonderful to spend time together as a family and this weekend brought many firsts.  It was our first road trip where the destination was not a hospital.  Mae and Phoebe saw Niagara Falls for the first time.  It was Jon's first father's day with Phoebe at home and we had our first meal as a family of four at a restaurant.  A real restaurant (hospital cafeterias don't count).  We made sure that it was empty and looked a bit crazy as we frantically wiped down the table and high chair before Phoebe sat down in it, but we did and we had a great time.  Phoebe ate her way through Niagara Falls and the waitress marveled at her appetite and how small she is for her age.  We just smiled and nodded, not wanting to disrupt this very normal family vacation with talk of feeding tubes and Leukemia. 

Next on the hospital schedule is a visit to St. Jude at the end of the month for another chimerism test, a visit with Phoebe's transplant doctors and opthamologist and to hopefully say good bye to line number nine and all central lines, for good.

Today Phoebe is 200 magical days post transplant.  Go Phoebe go ... 

Wednesday, June 6, 2012

We love St. Jude

It is no secret that we love St. Jude.  That the very thought of the hospital and all that they are doing to help children like Phoebe brings tears to my eyes and goosebumps to my skin.  For us and many other parents, for whom hope seemed lost, St. Jude became a beacon of light in a sea of darkness. It is a place of miracles and of hope.  When we arrived here, Phoebe's future was very uncertain - the treatment she was to receive was "experimental" and was considered to be our last resort and we met many other families who were walking similar roads.  We shared strength, hope, and joy with these families.  And for a building where so many children and their families are fighting terrible battles everyday, where life is often measured in days and weeks, it is surprisingly so full of joy. 

The children who call St. Jude home are celebrated.  They are treated as they should be - like heroes, and despite what may be going on inside their young bodies, their lives are not overlooked.  There are graduations, proms, concerts, festivals, carnivals, treats, everything possible to help them to get through.  It is truly a magical place and I could probably go on for days and days about all that they have done for us and for Phoebe.  About all of the work that they are doing to find cures for children's cancers. 

And so when we were asked if we would like to share Phoebe's story as part of St. Jude's fundraising efforts, we said yes.  Of course.  We will do whatever we can to raise awareness and ultimately to give back to the hospital that saved our daughter's life.

We shared Phoebe's story one day with a member of St. Jude's fundraising organization - ALSAC .  We talked about all that we had been through to get to St. Jude - about the many conversations that we had with doctors who believed that Phoebe could not be cured.  Who worried that we were doing more harm than good in continuing to treat her cancer.  All of the emotions that were still so raw and very close to the surface came flooding back.  And there were tears.  But, as time went on and the story was retold, and we walked the halls of St. Jude, I realized that all of that doesn't matter.  What matters is that we made it because so many others did not.  We are lucky - in all of our unluckiness and not a day goes by that I am not thankful.  My hope is that in sharing Phoebe's story, we are sharing hope and helping to fuel the research and science that made our miracle possible. 

And yes, we will share Phoebe's story until the day that we are no longer on this earth.  And until that day, I will continue to be incredibly grateful to St. Jude.  To Danny Thomas, the founder of St. Jude who had a dream and made it happen, to the brilliant doctors who believe that anything is possible and share so greatly in the hope that many families arrive clinging to with all that they have, and to the other families that we met who embraced us, supported us and helped us through our everyday.  We love St. Jude.

One of the fundraising "events" that our family was a part of was the filming of a public service announcement for St. Jude.  Jon, who to those who know him, does not love the limelight and is not comfortable surrounded by attention and cameras - faced his fears and the thought of being on national television to film this wonderful PSA.  It is a tiny glimpse into the lives of the children at St. Jude and it brings to light the very importance of moments.

You can watch the 60 second public service announcement here :

And finally, in Phoebe news - she continues to have 100% donor cells and we are looking forward to the removal of central line #9 next week.  She will have another visit to St. Jude at the end of the month for a chimerism test and follow up visit with her doctors.  

Saturday, June 2, 2012

Home again ...

When we were only a few weeks from Phoebe's transplant,  I remember the head of the transplant team at St. Jude - the doctor responsible for bringing us to St. Jude, pioneering research that is saving lives, and making a world of difference to so many - I remember him saying "everyday is a gain".  A gain - so simple yet so true.  Everyday that we are farther from cancer and closer to solid ground is a gain.

I mention this because while on our very recent and whirlwind trip to Memphis - we arrived on Wednesday and left Friday morning, there was a lot of talk of gains.  Phoebe has literally "gained".  Now weighing a whopping 9.4 kilos and measuring in just below 79 cm, she has gained 2.5 cm and a tiny portion of a kilo.  She has grown both physically and developmentally.  The catching up she is doing developmentally has prompted her Canadian transplant physician to cancel her appointment with developmental pediatrics.  Her time at home and her new found freedom has helped her walking and her talking and perhaps there is something in Canadian water that has caused her hair to grow and grow and grow. 

I feel so fortunate and very lucky.  We are now 6 months post transplant and life as we know it is as close to normal as it has perhaps ever been.  Jon is back at work, Mae and Phoebe continue to grow and develop their beautiful bond, and we are looking forward to so many things.  We have gained friends on this journey, many of whom I consider family.  We have gained perspective and empathy and we may never be the same again. 

Phoebe's visit to St. Jude was joyful, quick and busy.  We arrived Wednesday in the early evening and got settled in to the Grizzly House - St. Jude's temporary housing.  Thursday morning Phoebe had her blood work done with her favourite nurse, saw her transplant physicians and eye doctor,  heard news that her blood work looks good and that her optic nerves now appear to be normal.  All good news and all smiles - it was truly a wonderful visit.  Phoebe's transplant physicians have stopped two of her medications, bringing her drug count down from 5 to 3.  The medications she is on now are to protect her against fungal and viral infections until her immune system completely recovers.  The doctors are happy and proud, as they should be, they have done an incredible job.  They have changed our lives and saved Phoebe's.

After our quick doctor's visits, we were left to wander the halls of St. Jude, visit with families we have come to know and love through our time there.  Then we were back to the Grizzly House for a good night's sleep in preparation for our early flight.  Now we are home, anxiously awaiting results from Phoebe's chimerism test which we should know next week.

Phoebe is happy to be home, and was very excited to land in Ottawa.  So much so that for the last half hour of the flight she called out "Mae?" every few seconds - prompting people around us to ask - who is Mae? and then smile with my response.

Our next visit on the hospital list is a trip to Sick Kids where Phoebe will hopefully have her central line removed.  This will be a big day because it will mean an end to all tubes in Phoebe's little body.  This central line is the 9th one for Phoebe, she has had so many due to breakage, infection, poor placement, and then there is the one that she pulled out herself ... In any case, we are excited to say good bye to line #9 and are looking forward to all that life without a central line coming out of Phoebe's chest will mean.  Tub baths complete with splashing, wading pools, sprinklers, swimming lessons, water balloon fights ... so many wonderful things.

"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” – Albert Einstein

 Waiting to see the eye doctor

 Catching up with old friends.  This is sweet and very strong, fellow Canadian Alyssa.
 In front of a statue of the wonderful Danny Thomas, founder of St. Jude

 Kicking back on the plane ride home

"Riding" her bike and telling me to stop taking her picture :)