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.

Friday, March 6, 2015

A week at home ...

We have been home for one week and Phoebe is much happier. We had a few nights with fevers when we were first discharged, but I am happy to write that it has now been 3 days without. Things are improving, but Phoebe has been very tired and weak lately. She has not wanted to do anything but sit on the couch and watch movies or sleep and there were a few days after we were discharged from the hospital that she slept for most of the day. This is hard on all of us, but it is especially hard on Mae who misses her friend. Phoebe's body is obviously tired and we expect so much from it. When Mae is sick - which thankfully is a rare event, she rests. If she needs to rest all day, we let her rest and we don't worry. We know that her body will do what it needs to do to heal and get better. When Phoebe is sick or tired, she is constantly woken up - either for medicines, to have her temperature and blood pressure taken, to attempt to get her to eat and drink, or simply because having her sleep all day makes us worry that we are missing something. We ask a lot of Phoebe and we look to her to ease our worries. She often does as Phoebe usually appears very well, despite being very sick. It is when she doesn't, when she is hurting, that we are too. Each time Phoebe spikes a fever, we worry that all of this will become too much for her little body and as hard as I try to push it aside, the worry is always there. Thankfully, Phoebe is leading the way and each day that has passed since the fevers, infection and hospital admission, brings with it some improvement. Today Phoebe is interested in food, she has been up and using her legs to walk around the apartment, and she is talking to us in her sweet but feisty little voice. Sometimes she tells us to "weave her awone", but I could listen to her say that all day.

Today, Phoebe had a lumbar puncture and because Leukemia can hide in and spread to the central nervous system, this was checked for disease and chemotherapy was given. No leukemia was found, which is a relief and good news. The leukemia that Phoebe has appears to be isolated to her bone marrow. We are rechecking the bone marrow and Phoebe lungs via a CT scan in two weeks. We hope and pray for continued good news.

For now, we have the weekend off and we are looking forward to it. We are so grateful to be able to spend this time together. It is hard to believe that we have been away from home for seven months with no real plans to return any time soon. We would not be able to stay together as a family through all of this were it not for the support that we have received. The gofundme  site that was started by Phoebe's Aunt Vicki and Uncle Tim and the support that has resulted from this is simply amazing and has often left us speechless. We are blessed to be able to travel this road together and these donations and all of the help we receive from home help us to do this. There are no words to express just what this means to us. Thank-you to everyone who has shared this story, donated, helped, sent messages of hope and love, or taken time to think of Phoebe and pray for her complete healing - there is strength in numbers and this strength allows us to keep on keeping on.

Just over a month ago, Jon was in a car accident here in Memphis. Phoebe and Mae usually insist that we all go everywhere together, but this time Jon was alone in the car. The car was hit on the rear passenger's side, right where Mae sits, and then flipped over onto the driver's and Phoebe's side before skidding to a stop. Jon managed to walk away from the accident unscathed, but our car is a write off. With everything that has happened with Phoebe, this was the least of our worries, but our insurance allowed us to replace the car and this is something we need to get Phoebe to and from the hospital. We looked into purchasing something here, but because we are not residents of Tennessee, it was really complicated to have it insured and licensed. Thanks to Jon's brothers for test driving cars for us at home, to Michael for all of his help and Dan and Josh at Import Auto in Ottawa for making sure that we have a car that will safely take our family to and from the hospital and eventually home to Ottawa. This "new" car is waiting for us in our driveway in Ottawa (thank-you Michael) and Jon is heading there next week to pick it up.

We are always hopeful. Always hopeful. Phoebe has taught us that anything is possible, so we will keep putting one foot in front of the other, and we will continue to do all that we can to help Phoebe and Mae grow and thrive. We hope for a peaceful weekend and beyond that, for healing and strength, as we wait for Phoebe's bone marrow and lung tests to be repeated in two weeks. 

Go Phoebe go ...   

It finally snowed in Memphis this week which got me thinking of all of the snow that I have missed shoveling in Ottawa. We are blessed with the world's greatest neighbors/family a few doors down - thank-you to them for holding down our fort. 


  1. The most important thing is that you're safe. The car problems can really wait, unless the insurance plans claim so. However, it's good that you were awarded with a replacement. Thanks for sharing that! All the best to your family!

    Steven Keltsch @ Allied Insurance Managers

  2. I can only imagine the pain that you had to go through as a parent, and it is great to know that you managed to stay strong and support Phoebe with everything. As for Jon’s car accident, it’s great that he got out of it unscathed, and that you were able to replace the car completely with the help of your insurance policy. Did the person who bumped into Jon stop and help him after the accident? I hope he at least exchanged insurance and contact details after seeing that he was alright. Anyway, thanks for sharing this with us, Jenny. Stay strong!

    Sabrina Craig @ Medical Attorney NY

  3. It’s great to know that despite the tragic accident and unfortunate situations, Phoebe has been lifting your spirits up. I’m sure she drives you to keep holding on. Anyway, what’s important is that you guys are doing fine now. Thanks for sharing!

    Jerry Brady @ Lambert And Williams