Roller-coaster

When I think of all that has happened these past almost 5 years, the first word that comes to mind is rollercoaster. It has been a rollercoaster of thoughts, emotions and events - there have been ups and downs, joy and sorrow, light and darkness, and a lot of the time we haven't known what to think or what to believe. It just keeps going and we keep hanging on. 

The relief and happiness we felt after hearing the bone marrow results lasted for a few days, or until we heard the chimerism. The chimerism is improved, but does not match the just 8% leukemia that was reported by MRD. We are confused and feel helpless. Add to this that over the past three days Phoebe has had blast cells show up in her labs and we are just terrified. The blasts are not consistent - the first day there was 3%, then just 1 that didn't look like leukemia, but today although there are still few, they are "suspicious for leukemia". They could be something else and in a perfect world they would be recovering cells that will mature and help Phoebe fight infection. 

Up and down and around we go. 

Phoebe doesn't know what blast cells are and if you ask her she will tell you that there are no more "bad cells", that she feels fine, and to please stop asking. She is our leader and so we will follow her, but we have been on this road for far too long to ignore the fear and the worry. 

For now, we will keep putting one foot in front of the other. Phoebe wants to ride her bike, she is eating, laughing, and playing. She has her Hallowe'en costume picked out - in fact she has permanently draped it over a chair in our small apartment in anticipation for the big day. She has also picked out her costume for next year. She is strength, resilience and hope all wrapped up in a small but incredibly mighty package. 

She is a force and we will always fight for her. I just wish there were options and solutions to this problem that at times is completely suffocating and seems insurmountable. 

Today is the last day of childhood cancer awareness month, but for us, it doesn't end here. Everyday is childhood cancer awareness day and we are surrounded by sick children who need help, more options and more funding for research. 

Please remember that kids get cancer too. 

You can help by donating blood, registering to be a bone marrow donor, donating money to an organization that helps children - like those listed at the right of this page because many large cancer charities direct very little of the money raised to kids. You can share stories of kids with cancer and wear a gold ribbon. You can help by telling your now candidate, but soon to be elected official (in Canada), that finding a cure for childhood cancers and supporting survivors should be a national priority. 

Thank-you for reading and sharing Phoebe's story. 

"Nothing can dim the light which shines from within". Maya Angelou