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, January 27, 2012


Phoebe is drinking from a cup.  I mean, really drinking from a cup.  She asks for her cup, sips from her cup, drinks and swallows whatever is in her cup, and she does it all by herself.  Up until the meeting of this major milestone, Jon or I would have to hold the cup up to Phoebe's lips to entice her to drink.  We would let drops of milk or water fall into her mouth and sometimes she would taste and swallow and other times, most of the time - she would let the liquid drip out of her mouth and down her chin.  This new skill makes me very happy.  So very, very happy as it means that there may be an end to the ng tube feedings that have been Phoebe's main source of nutrition for the past year.  She will have to drink enough by mouth to do this but it is one more big step forward and that is a wonderful thing.

We had a visit with a new neurologist yesterday.  Phoebe liked him very much and even allowed him to hold her - which is nothing short of a miracle as she really doesn't trust strangers.  He didn't have many answers as to the cause of the swelling on Phoebe's optic discs, but is going to be following Phoebe closely, running some more tests, and he wants her to have regular and consistent eye exams and lumbar punctures to make sure her vision stays as strong as it is and that there is no longer any more increased pressure.  She also may be seeing an eye specialist to make sure that they are not missing something.  Many doctors are now involved and working hard to help Phoebe, but once again, we are left to wait and see and hope that this does not cause any further or long term problems.

The neurologist also commented on Phoebe's developement and how she is slow to learn some skills.  He said that there is evidence on her MRI of some damage to the nerves of the brain - something that everyone else has commented on as "normal for someone who has gone through what she has".  He explained that we will not know how all of this has affected her until she is older - she may not be as cognitively alert as she would have been were it not for the copious amounts of chemotherapy that ran through her veins.  We will never know.  And frankly, after I put all of the guilt that I feel over my own baby having to endure what she has aside, I realized that it doesn't matter.  I will never look at Phoebe and wonder what she could have been - she has already proven herself spectacular and brilliant and I truly believe that her future is bright.  She can be whatever she wants to be and i'm sure she will do it with style and grace and in her own unique way.  I am just so relieved and happy that she has a chance to be. 

But for now, she doesn't say many words, she is not yet walking and she is not eating like a "normal" 18 month old - but look at all she can do.  Phoebe can attach a syringe to the tiny lumen of her central line after pretending to clean it like the nurses and Jon and I do.  We don't allow her to touch her own line but she has "practice" ones that the nurses gave to her.  She can put the clear sheath on the end of the thermometre tip - a task that is difficult for Mae to do.  She has figured out how to open the end of her ng tube and often puts pretend syringes in there too - mimicking how Jon and I give her medications.  One of her favourite things to do is to screw a top on and off a bottle of sterile water or to put the stethescope up to her chest and "listen".  All of this to say that her environment, her experience, has allowed her to develop differently - perhaps more slowly than others in some ways, but all things considered she is not slow, only different.  And she is fierce - there is no stopping our Phoebe. 

In other news, Phoebe had another central venous line inserted today, this will be line # 8 and this time it is a single lumen hickman.  Meaning only one tube is hanging from her chest.  To put in perspective Phoebe's unique situation, sense of humour and the unfortunate fact that she is a regular in the operating room - when she saw the anesthesiologist appproaching she looked up, waved, and said "George!".  And yes, his name is George.  With this line in, Phoebe avoids pokes for blood work and her weekly IVIG and it just makes things easier and less traumatic for her which is a good thing.  When she is further out from transplant, needing less frequent blood draws, no IVIG, and all is going well, the line can be pulled.  That will be a glorious day as it will mean a future of bubble baths, swimming pools, and playing without worry of getting too dirty or pulling on the line. 

Onwards and upwards ... day + 57.

1 comment:

  1. Hello Jennie,
    Verry happy to see that Phoebe is doing good. And about the side effects from the chimio, yes it's not always easy. But as you said, never forget what your child went trought. She has a wonderful energy and strenght and I think she will live her life to the fulless and proove again that anything is possible as she gets older. You will be there to remind her what she achieved.

    take care, Sophie