Phoebe's bone marrow results are the same. The level of disease is very high, filling up most of the space in her bone marrow. Her chimerism is now just 7% donor cells, but miraculously, there are no signs of leukemia in her blood, so I guess although things are bad, they are not any worse.
It is still just hard to believe. It is hard to believe that Phoebe is so sick and that we have tried every medicine available to treat leukemia and yet this relentless monster just won't stop. We have been running, desperate for anything that offered hope, for almost five years - and now here we are at a bit of a standstill because, right now, there is nothing left to try.
We are taking things one day at a time and apart from the addition of one new/old drug that will hopefully help reduce the leukemia burden, we are not making any changes. We are continuing to treat the fungal infection with my weekly granulocyte infusions (Phoebe is not making her own cells) and we are doing what we can to keep the leukemia from raging out of control. So far, it appears to be isolated to Phoebe's bone marrow and we hope to never see it spill to her blood. Even if we wanted to, we are not able to give Phoebe intense chemo due to the infection and the fact that her little body needs rest. It would make her sick and so this break is a blessing in disguise as these weeks and now months without intense chemo have allowed Phoebe to heal and thrive. We will recheck the bone marrow in two weeks and although we are always hopeful - Phoebe and Mae help us believe that anything is possible - we are also terribly worried and broken. We are desperate for some good news.
Phoebe, on the other hand, is "fine". She doesn't know that she is so sick and if you ask her, she will say that her spots are healing, that she can jump high and ride her bike, that she can do everything without any help, and that when her hair grows back (she currently has a beautiful dusting of blond fuzz) she wants a braid just like Mae. She often sings at the very top of her voice to her favourite songs even if she doesn't know the words, and she is a joy. She really has come so far.
We try to shelter Phoebe and Mae from the stress and worry that we feel each day, but they are both incredibly smart and they often surprise us with their insight and maturity. Mae is very sensitive and kind and she knows and has seen too much. She shares our worries - having a sister with cancer is a weight that no 6 year old should ever have to bear and I wish I could somehow protect her from all of this. In many ways, it is Phoebe who protects her as she asks her to play, makes her laugh, and some of the worries melt away. Phoebe regularly "helps" the nurses with her central line care and blood work - making sure to tell them how she likes things just so. Today she noticed that her nose was bleeding and immediately said - "it looks like I'll need platelets today". Some four year olds are learning letters and numbers, Phoebe knows this and has moved on to the blood system.
We are holding on to hope and we are grateful for the many, many good days that we have. The light that Mae and Phoebe bring to our days is a beautiful thing and it truly keeps us afloat.
We are also grateful for the support and love that we continue to receive from Ottawa. A big and special thank-you to John Gomes and those involved in the Fifty-seven Ride - they are riding their bikes from Ottawa to Toronto, raising awareness for childhood cancers all in honour and support of Phoebe. We are amazed, thankful and blessed.
There is a fundraising BBQ and kick off party with live music, games, and prizes this Sunday from 10am to 2pm at Stanley Park in New Edinburgh. All proceeds go to the 57 Ride for Phoebe Rose. For more information about this and the 57Ride, please visit : www.57ride.ca