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.

Tuesday, May 17, 2011

Day + 4

Day + 4.  Yesterday morning Phoebe's temperature climbed to 38.6 and continued to climb throughout the day, reaching 39.6 at its highest.  Thankfully, it made its way back down and is within normal range today.  They take fevers very seriously here as without a functioning immune system, Phoebe is very susceptible to infection.  They draw blood cultures, take stool samples, urine samples, and watch and listen for any signs of infection.  She has also been started on broad spectrum antibiotics to help combat anything that may be brewing inside of her. 

She is not herself, but has made leaps and bounds since yesterday on her road to recovery.  We have been told by all of Phoebe's doctors and nurses that everything she is experiencing is to be expected, and so although it is difficult to see Phoebe struggle, we know that it will eventually get better.  Her white blood count has been completely wiped out now, and is zero today.  We are anxiously waiting for the day when her blood work will show developing cells and we can take a breath knowing that her little body is starting to recover. 

She is experiencing more side effects from the chemotherapy, and now has mouth sores and mucositis. She is not eating anything by mouth and her vomiting and diarrea have gotten so bad that the doctors have ordered TPN.  This will give her belly and bowels a rest while still giving her all of the calories and nutrients that she needs through her central line.  The mucositis causes her an extreme amount of pain, so much so that she is on a continuous infusion of morphine.  Having to give Phoebe morphine has been very difficult for me, it is not something that I ever imagined that I would be doing and at times I have resisted, waited too long, or negotiated other options with our doctors and we have ended up chasing the pain, rather than staying ahead of it.  At Sick Kids, there is no waiting, no catching up to pain, the doctors and nurses anticipate the worst and act on it quickly without any consideration of my uncertainties, hence the continuous infusion.  Watching Phoebe struggle in pain due to the mucositis, unable to swallow her own saliva because the mucous that is building up in her mouth is so thick, is difficult and unnecessary.  Morphine helps her to relax, brings her heartrate back down to within normal range, and allows her to sleep and rest in comfort.

Today in a desperate attempt to make Phoebe laugh or smile, I made faces, danced around (when no one was watching), and attempted as many strange noises as possible.  I could tell by Phoebe's eyes that she was amused, and when it seemed that she was trying to smile, she made a very sad groaning sound.  It hurts her to smile right now and upon realizing that, I came to realize (finally) how important the management of Phoebe's pain really is. 

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