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, October 29, 2011

Dodging bullets

In our world, uneventful days are the best days.  Days free from appointments, blood transfusions, fevers, xrays, scans, and all the other hospital and Cancer related things that usually fill Phoebe's time. 

We have now been home together for one week.  Each day that passes without fevers or extra trips to the hospital, I thank my lucky stars, God, the many angels who are looking down on us, for giving us one more day as a family.  I thank the folks at Target House for understanding that part of healing and living a good quality of life is to be with the ones that you love.  I feel very lucky that we are all together, I have met many parents who are here without their spouses, other children, who are isolated and alone.

Phoebe is still receiving her injections of Interleukin 2 - the food for the NK soldiers, and her white cell count is still zero.  What happens next depends on Phoebe, on her disease, and on how well she has responded to therapy.  A plan for a second transplant is in the works, and we even have a tentative date, but Phoebe's bone marrow first has to be tested.  The doctors may decide to move quickly, to start the transplant process before Phoebe has completely recovered from the NK cell therapy.  They are concerned that allowing Phoebe's bone marrow to recover white blood cells, also gives her Leukemia a chance to rear its ugly head.  It is a fine and delicate balance.  Phoebe has been without a functioning immune system, since she relapsed in July.  She will be without a properly functioning immune system until many months post transplant.  That is a very long time without the ability to fight off infection.   Phoebe is dodging bullets everyday.  Today, she has 3 open wounds on her body, caused by recent skin biopsies, a PICC line removal, and central line insertion.  All of these sights are closely monitored for infection, because the risk is very high.  Our doctor describes her as a pin cushion, which is an unfortunate but realistic analogy because her little body is full of marks from daily injections, bruises as a result of low platelets, and wounds.  The antibiotics help to keep infections at bay, but we are aware that complete healing only happens with an immune system.  A person needs good white blood cells to heal, and right now Phoebe has zero. 

At times I feel like I am watching the events of my life unfold as if they are the most frightening and suspenseful movie I have ever seen.  I am in the theatre, on the edge of my seat, biting my finger nails, holding my breath, and bracing for the moment in the movie when the entire audience will scream out in pure fear.  The paralysing kind of fear that causes your heart to race and your palms to sweat.  And then I am waiting for the moment after that scream, when everything is calm.  When we realize that it wasn't so scary afterall, just the wind and a dark night. 

Today after a morning of playing and crawling around after her big sister Mae - her favourite thing to do right now, Phoebe had another quick visit to the hospital.  Monday is a big day of appointments, visits with doctors, blood work for Phoebe and a big day for Mae too because apparently here at St. Jude, Halloween is a really, really big deal.  We are hoping that in between her busy schedule, and with her mask firmly in place, Phoebe can catch a glimpse of Halloween, and maybe even pick herself up some kit-kats.

No comments:

Post a Comment