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.

Wednesday, January 18, 2012

Day +48

All is well here in Memphis.  Phoebe appears to get stronger everyday.  She is eating more, trying new foods, and enjoying playing with Mae.  She is more active and although she doesn't pull up by herself yet, she will stand and play and her legs are definitely getting stronger.

We had a follow up eye clinic visit yesterday and the opthamologist noticed the same swellling on Phoebe's optic discs.  There has been no change, be it better or worse despite the short course of medication she received.  Her medication was interupted by her stay in the ICU and had to be put on hold because of the many complications it creates with Phoebe's electrolytes.  The plan right now is to repeat a lumbar puncture on Monday to check for increased intracranial pressure which can cause this swelling.  The last lumbar puncture showed normal pressure so right now all of this is a bit of a mystery.  There seems to be some disagreement among the doctors also - the BMT doctors are not overly concerned and think it is related to the increased pressure that Phoebe had while she was at Sick Kids, that perhaps it is taking time to heal. They and the neurosurgeon both think that it is related to this and that it will improve once Phoebe is further off treatment.  The opthamologist is concerned but really has no answers or solutions at this point.  It is a bit frustrating, and needs to be solved and treated to protect Phoebe's vision.   Phoebe appears to have incredible vision, and although the eye doctors say that it is difficult to measure sight in an infant, it is obvious to us that she sees well and she appears to have no symptoms of increased pressure.  I would like to see the end of this tunnel and when we get there, I hope the BMT doctors are right.

Everything else is going well.  Phoebe's blood work looks great, and she hasn't needed anymore transfusions.  She is still on antibiotics for the infection but the hope is to complete the course in another week, and we are still holding our breath as to whether her line will need to be pulled.  That will depend on what happens after the antibiotics are stopped.  Let's hope the nasty bacteria stays away.

So for now, we are enjoying our time together, celebrating less frequent visits to the hospital, and making plans to try and entice Phoebe to eat enough to warrant removal of the feeding tube.  We are hoping and praying for answers and solutions in regards to Phoebe's eyes.  And we are putting one foot in front of the other and slowly but surely moving closer to home.  Day +48 today - almost halfway to day 100.

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