On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. A not well understood, difficult to treat and cure, Leukemia. This is her story of hope and love in the face of cancer and despair. It is best read from the beginning. Thank-you for visiting.

Wednesday, August 20, 2014

Up and down

Denver life is exhausting, terrifying, joyful and full of hope all at the same time. Much like this journey has been. Each day we go through a very intense mix of emotions. We are up and down and all over the place. There is reason to hope and believe that all will be right in our world, but there is also great fear, uncertainty and sadness.

The kids in Denver have started school. I am surprised by how much this is affecting me. Seeing kids ready for school with their backpacks filled with supplies rather than medicine is hard. When Phoebe turned four one of the first things she said to me was, "Mama, I'm four now, I need to be going to school not going to the hospital". If only it were that simple. It is heartbreaking to have to explain why she can't go to school. Add to this that Mae won't start grade 1 with her friends and the uncertainty of where she will go to school for her grade 1 year sometimes leaves me feeling like these everyday things are spiraling out of control. To see that this journey is also affecting Mae's life and her happiness is hard. I was also really looking forward to the first day of school - to seeing Phoebe line up with her class and hearing about the day and the friends that were made. I wanted so much for Phoebe to have this experience. Cancer takes so much from her and as much as we look on the brightside, have perspective, and are grateful, it is impossible to ignore the sadness of a little girl who just wants to have her first day of kindergarten and can't. She won't experience it this year, but one day, she will. 

Here in Denver we are taking things as they come. We are dealing with a rash that is not bothering Phoebe at all but that looks very similar to GVHD. Phoebe's doctor suspects that this might be what is happening and has said that this is not a bad thing as long as it remains under control. It could actually be very good. Phoebe still has a large population of donor cells which are hopefully getting stronger as this drug works its magic. These donor cells could be fighting against Phoebe's body and causing graft versus host disease (GVHD). What makes this a good thing is that with GVHD comes Graft vs Leukemia as when the graft fights the host (Phoebe) it also fights the cancer. There is also a chance that this rash is simply a drug reaction but this has not been documented in any other patients and we all prefer the GVHD theory. 

If you ask Phoebe her opinion on what her cells are doing she will jump up, smile, and say "getting bad guys and smacking bums!" - I don't know where this came from and we don't go around smacking bums here, but it has caught on and it is impossible not to laugh when she says it. 

Phoebe's blood work today showed some count recovery and healthy cells. Earlier this week we had elevated kidney function and today, these tests show close to normal levels. This is all good news. Phoebe's kidneys work hard and after one was crushed by the mass with the second relapse, we rely on the other stronger kidney to do a lot. Our minds race whenever we see elevated kidney function as this was one of the symptoms of the second relapse. With each abnormal test result we worry that we are asking too much of Phoebe's little body. That it will get to be too much. Thankfully, all looks relatively normal and this drug continues to be gentle and easy. Remembering that Phoebe is constantly connected to a pump is often our biggest challenge. Phoebe helps us with that by continuing to carry her backpack around everywhere she goes. She has now carried it for 8 days and has not asked for help once. 

Go Phoebe go. 

In other news, the Childhood Cancer Awareness Event is going to be great and you should really go. Help us shout it from the roof tops that kids get cancer too. They need our help. See the poster below for details and follow us on Facebook at www.facebook.com/gogoldcanada or on twitter @goldonthehill for updates. 

Thank-you! 



2 comments:

  1. Hi there, I'm Lindsey! I have a question and would love to chat :) Please email me! lindseyDOTcaldwellATrecallcenterDOTcom

    ReplyDelete