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, 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 :)

1 comment:

  1. so good to ear those wonderful news, take care sophie xx