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, October 6, 2014

Hope for Phoebe

It has been an exhausting and very emotional day. Phoebe has not been able to eat due to the sedation today as well as the seizure and possible stroke and the chance that they could have affected her swallowing. She went to bed last night crying out for food, water, juice, milk, her favourite soup, a banana, a cookie. She woke up crying for the same. Her speech is slurred, but she is making sense and just kept asking and then demanding I bring her something "this instant". Phoebe hasn't really spoken to us in days. To hear her voice pleading with us and to have to tell her, no, she cannot have these things, and to not be able to bring her every single thing that she asked for broke my heart again and again. These are the things that I can control, as her mom. I can feed her and bring water and juice. I can try to make her happy. It is a terrible and helpless feeling to not be able to do this. I would wake up every hour on the hour to feed and soothe Phoebe if she wanted me to. I would hold her and rock her all night long if that would help. 

Phoebe was scheduled for an MRI of her brain, a CT scan of her belly, lungs and sinuses, a lumbar puncture, and an EKG. She had all of this and had her line pulled, and three IV lines placed all while she was sedated today. This required a significant amount of planning and preparation by the staff at St.Jude. We are grateful as doing this saved a lot of trauma for Phoebe who has had enough. 

Phoebe is still resting after her long day and she has not yet woken up from the sedation. We do have some results from all of these tests. Phoebe did not have a stroke and doesn't have any clots in her brain. The doctors think that she did suffer from a seizure and so she will remain on the anti-seizure medication. The spots on her brain are either an infection or leukemia. The doctors think it is an infection but we are waiting for the results from her spinal fluid to know for sure. Her spinal fluid has been clear of leukemia for years. Years, and we are clinging to that hope. 

There is also a fungal infection in Phoebe's lungs. We have never had to face a fungal infection before or an infection in the brain, and to be honest, we are just terrified. I have never been more terrified. We know because we have been on this road for many years, just what we are up against. Phoebe has some huge mountains ahead of her and she will need help to climb them. We had a wonderful nurse practicioner in the ICU tonight, who after we heard all of this news, stayed in Phoebe's room to talk. She told us how strong Phoebe is and how far she has come. She talked to us with hope about all of the ways that Phoebe can fight and beat this. We needed this gentle reminder of the power of hope as today has been at times, incredibly dark. 

The good news, is that Phoebe is currently being treated for all of these things and the infected central line is now out. She has also regained strength in her arm that was completely limp and weak today and yesterday. Another small victory. We now wait and hope. Wait and hope and watch as Phoebe gets better. 

Phoebe's behavior has been different both since starting this relapsed treatment and now since her seizure. She is irritable, angry, upset and often inconsolable. She is not happy and joyful. She is not herself, but occasionally, and thankfully, there have been glimpses. The doctors think that this behavior is related to the spots that were seen on the brain CT and MRI. It is heartbreaking and cruel that this has happened to her and we can only cling to hope that she will once again look at us and smile. Phoebe has a strong and beautiful personality and something as bright as her spunk is not so easily broken. 

We believe but right now, looking any further ahead than today is too difficult. Today is what matters right now. We made it through this day and we now have most of the answers that we need and we can continue to move forward to help Phoebe to get better. We will never give up on our girl and we will be by her side every step of the way. 

Thank-you for continuing to support us through this very long journey. We received many beautiful messages of hope today as well as many kind donations. We really wouldn't be able to do this without help and we are incredibly grateful. I like to think that all of your love and hope is surrounding Phoebe right now, and this brings me great comfort. I imagine our love and hope surrounding Phoebe and our collective voices whispering to her that tomorrow is a new day, a day for healing and progress. 

You can do this sweet Phoebe. 

Mae met Katy Perry today at the hospital. She was visiting and we saw her right after Phoebe went in for all of her tests. Mae and Phoebe love the song "Roar" and used to sing it all the time. I can't help but think that this is a good sign, and Mae was so excited to meet her. 

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