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, September 19, 2011

Hospital life



 Phoebe's tests went well on Friday.  She happily munched on a piece of pizza shortly after with her big sister as we anxiously awaited the results.  Her spinal fluid is still clear of any Leukemia cells.  Great news.  The increased pressure that was there during her last lumbar puncture is gone and so her drug count is now down by one as that problem is considered fixed.  We are still not sure what caused the increased pressure, the culprit seems to be one of the drugs she took post transplant but we may never know for sure. Her bone marrow showed a 60% reduction in blast cells.  The doctors are pleased with this result as it is a significant decrease when we are only 4 days into Phoebe's new treatment plan.  We remain cautiously optimistic and very hopeful that the next bone marrow aspirate will show that Phoebe's cancer is in remission.

We had another meeting with our doctor today, and the plan is to keep going forward with Phoebe's treatment and to test her bone marrow again in a month.  We have had some bumps on the road so far, related not to Phoebe but instead to the plan.  Over the weekend we discovered that one of the orders for a very important drug was not done properly, which resulted in Phoebe missing a few days of treatment.  The problem has since been rectified and the treatment plan altered slightly to compensate and we are now back onto a straighter path.  We have had our share of hospital related bumps on our road to recovery and this weekend we were reminded that even when things are checked and double checked, mistakes can still be made in the hospital world.  We are Phoebe's voice and it is our job to advocate for her and to make sure that her team is 100 percent present and behind her treatment plan.

Our weekend was not free of stress, but we enjoyed the time we spent together.  Mae and Phoebe had some wonderful playtime - building towers, crashing them down and enjoying dinner together in Phoebe's little room.

Days and nights spent in the hospital are long.  Days are made busy and full with play time, visits from Mae, various doctors and nurses, naps, walks, story time and videos.  We do our best to keep Phoebe entertained and stimulated, and we are more than rewarded by her many smiles and joyful laughter. At night time, after Phoebe goes to sleep, we find ourselves with many quiet hours.  Jon uses this time to develop one of his many hidden talents. 

This is one of my favourites. Beautiful Phoebe Rose. 







3 comments:

  1. She is absolutely beautiful! Saying many prayers for you all. XOXO-Mary from GA

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  2. Just wanted to let you know that my son Shaeffer,(who is almost four) knows all about Phoebe Rose. We say a prayer for her every night and some days at any time at all. He asks about her often and I keep him updated.
    Today after getting off the school bus for the first time, he told me that when they said prayers he asked that the whole JK/SK class pray for Phoebe Rose. That's a lot of little people rooting for her. God Bless.
    Shannon & Shaeffer

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  3. My favourite is the sketch of her feet. Precious!

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