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.

Saturday, May 2, 2015

Hospital life ...

It has been a long and busy two days. Some mistakes were made with Phoebe's care and we are exhausted. 

Yesterday morning I went to the blood donor room to give my granulocytes. Phoebe's labs were drawn at 4am and her platelets and hemoglobin were low - her platelets were critically low. Before I left her room just before 9, they had been ordered and all was well.

Jon stayed with Phoebe and Mae and when I got back after noon the blood was just about to start - a blood transfusion in someone Phoebe's size can take up to three hours, but platelets are much faster. The platelets should have been given first. By the time the blood started, Phoebe's nose was bleeding, her poop was dark and tested positive for blood, and she had a huge bruise on her eye lid. Her blood wasn't clotting and so she was bleeding. By 5pm there were still no platelets and even Phoebe started asking where they were. I write asking, but she was actually shouting "I need platelets!! Where are my platelets!!", as she wiped blood from her face. Even at four years old, she knows better. 

The platelets were finally started at 5:30 pm - over 12 hours after they were found to be critically low. Phoebe spiked a fever soon after they were started which was  probably because she wasn't getting the Tylenol that was scheduled every four hours to keep ahead of the fevers (we had three different nurses in one shift yesterday and it was pure chaos). Because of the timing of the fever, it was documented as a transfusion reaction and the platelets had to be stopped. Despite the fact that Phoebe desperately needed them, they were stopped, sent back to the lab, and another unit was sent for. All of this and Phoebe still needed the granulocytes - and they expire. 

The first unit of granulocytes was started in the late evening and finished in the very early morning with no problems. The next unit was supposed to be given shortly after, so we finally went to sleep - Jon with Phoebe, and Mae and I in the parent room connected to Phoebe's room. 

After very little sleep (beeping pumps, pull up changes, watching and worrying about Phoebe) Jon woke up early this morning and noticed the granulocytes were missing from Phoebe's pump. He quickly went to get the nurse to tell her that they would expire and to ask where they were. Despite his efforts, they didn't arrive in time. I woke up to Jon telling me that I needed to come into Phoebe's room because the second unit of granulocytes had expired. The granulocytes that I spent 3 hours donating for Phoebe - the cells that I am only allowed to give six times in six months. These precious cells that Phoebe isn't making on her own but desperately needs to fight this fungal infection were wasted. 

I can't put into words the sadness and just pure frustration I felt this morning. Everyone was frustrated but no one seemed to know how the mistake was made. After the day we had yesterday - a day filled with too many careless mistakes and chaos, I am not surprised that this bigger mistake was made and that was the consensus at the end of the day - the chaos of yesterday led to mistakes today. 

Phoebe's situation is so fragile and precarious, she just can't afford any mistakes. 

Today, however, is a new day and we are moving forward. As the doctor said this weekend - the good thing is that Phoebe is stable. She is, and she did receive some granulocytes so all is not lost. The inflammation marker in her blood is slightly lower, she is not requiring any oxygen and there were some signs of count recovery, but the latest blood cultures were still positive for fungus so there are also a lot of reasons to worry. The doctors have made some small changes to Phoebe's antifungal medicines and the plan is to continue the granulocytes next week. 

I very rarely "vent" or write about mistakes and frustrations that happen in our day to day hospital life, and I think it's because we are usually just so grateful for the many amazing people who care for Phoebe - they are incredible and we are grateful - we always are - but today after all that has happened I just needed to vent a little. 

We are holding on to hope and grateful for any progress. Last night despite the chaos and stress that Jon and I felt, Phoebe was up and asking to play and watch movies. She even had some snacks. She is still having high fevers and she has a very long way to go, but we are taking things one day at a time and always hopeful. 


  1. Oh my goodness! You have every right to vent. So sorry Phoebe and you had to have such a day. Let's hope there are no more mistakes for Phoebe's sake and yours. It is good to hear that despite what when on, she was up and playing and having snacks. As always prayers and positive thoughts for all of you.

  2. It's incredible that with someone so sick and fighting so hard that they don't have all their bases covered at all times. You have every reason to vent and I say that I don't know where you find the patience to accept mistakes of this nature when it comes to the health of Phoebe. Irregardless, here's to Phoebe getting through this challenge. Go Phoebe Go. We love you. �� �� ��