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.

Monday, January 23, 2012

Tub baths on the horizon ...

Our weekend away from the hospital was wonderful.  Phoebe is doing so well.  She has been standing and babbling, and catching up on all that she has missed.  Last night we made pizza for dinner, and Phoebe pointed excitedly at the pizza and said "za za" over and over again until it was cool enough for her to sample a piece.  She is still eating only tiny amounts but the effort is there.  She is trying very hard and is in love with snack food.  She is borderline addicted to goldfish crackers and we are working to expand her culinary repertoire.   

We were back at the hospital bright and early this morning.  Phoebe had her lumbar puncture, a visit from her doctor, an infusion of IVIG (an immunoglobulin that she receives weekly to boost her immune system), and she also had her central line pulled.  The lumbar puncture shows slightly elevated intra-cranial pressure.  The next step is to once again involve neurology in the hopes of solving this puzzle and preventing any further or possible damage to Phoebe's vision.  Phoebe's transplant doctor is still very happy with her progress and because her counts have been steady and her chimerisms have consistently been 100%, he doesn't see any need to do a bone marrow aspiration on day +60.  This was mentioned as something that is done often for high risk patients like Phoebe when there is cause for concern, and so it is wonderful news to hear that she is doing so well and impressing her doctors.  The next bone marrow aspiration, if all goes well, will be done on or around day 100 and in the meantime the weekly chimerism of Phoebe's blood will still be monitored.

Phoebe's doctor decided that the risk of the bacterial infection returning with her line still in is too high, and opted to pull it out.  And so, just like that while Phoebe was awake and in her crib a nurse practicioner pulled, or actually yanked it out of Phoebe's chest.  That, i'm sure was a lovely sight to see and I am thankful that it was Jon and not I that got the pleasure of witnessing it.  I heard that Phoebe was a trouper and seemed more shocked than hurt as it came out. That's our girl.  

Now, for the first time in many, many months - 15 to be exact, Phoebe does not have tubes hanging from her chest.  In 2 days she can actually take a real tub bath if she wants to - a real tub bath is something that many children going through cancer treatment are not able to do because of their central lines.  It is something that should never, ever be taken for granted.  Unfortunately, Phoebe's time without tubes is limited as another central venous line will be inserted on Friday.  The doctors feel that it is too soon to go without regular and reliable access to Phoebe's veins, for blood work, her weekly IVIG, and other miscellaneous tests and so line number eight it is.  Hopefully this will be her last.

In other Phoebe news, she is almost completely weaned from her immuno-suppressant. This drug comes with a particularly long list of side effects and we are happy to see it go for many reasons.  Without it, Phoebe's new immune system has free will to develop into a healthy disease fighting machine.  It is a fully functioning and cancer fighting immune system that will hopefully put an end, once and for all, to all things Leukemia.   

And so despite the fact that the doctors are still looking for solutions to Phoebe's eye issue, today has been a wonderful day. It has been full of hope and promise for a beautiful cancer free future.  It is day +
 53, we are allowing our minds to wander and imagine the tub baths and other wonderful things that are on the horizon, and we're doing it.  Go Phoebe go ...

 Snacking sisters. 
Hanging out at the St. Jude coffee shop and eating with a spoon today.


  1. What a wonderful update! We're thinking about you here in Ottawa, Phoebe. Have a ball in the tub!

  2. So happy for you! Have fun in the bath Phoebe, you deserve it so much!