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, September 27, 2013


It is almost the end of September. Childhood Cancer Awareness Month. I have been reading a series of blog posts this month, put together by Mary Tyler Mom - a wonderful childhood cancer advocate and fellow "cancer mom" who lost her beautiful daughter, Donna, to brain cancer. For the past two years in September, I have read Donna's Cancer Story, a heart breaking yet beautiful and inspiring story. Each day of Donna's story is a month of treatment and life and is written by her Mom. This September I read this, but I am also reading the September Series . Each day brings a different childhood cancer story, written by mothers, fathers, a grandmother, a doctor - all people who have been touched by childhood cancer. I am grateful to Mary Tyler Mom and each of the writers of these stories for sharing and shedding a light on childhood cancer and the need for greater awareness.

The stories are hard to read. They are painful and heart breaking and at times while reading I found myself gasping for air, openly sobbing as many stories hit so very close to home. One story in particular is about the only child I have found to relapse just like Phoebe did. Beautiful Lilli, who is now greatly and profoundly missed. Despite the sadness that these stories evoke, they are also incredibly inspiring and captivating. They are full of love and hope and life beyond cancer and grief. Jon and I have read a few together and they have brought up memories of Phoebe's treatment, things we have pushed to the back corners of our minds. It is hard to believe all that Phoebe has been through and we don't often talk about the darker days. It has been therapeutic. 

Some of these stories are still with me. I carry them around everyday, thinking about the children they are written about, thinking about their parents, wishing there was something I could do, going over detail after detail of Phoebe's treatment and worrying. What if. What if we haven't done enough? I haven't scoured the internet lately for new trials and treatment, what if we are missing something? What if the chemo is making things worse. Should we be doing something else? What if it comes back? What if, what if, what if.

The excessive worrying is probably also due to the fact that in a little over a week, we will travel to Memphis and St.Jude for another round of tests. A bone marrow aspiration, an MRI, and a lumbar puncture to give chemo and to check Phoebe's spinal fluid. All of these tests will be looking for cancer. When (because they will be) they are clear, we will have another three months of life without cancer. Another three months to watch our little girl grow and live and love life to the absolute fullest. And then we will go back again for more tests. My hope is that once we have completed treatment,  eventually three months will stretch to six months, then six months to once a year, and eventually, maybe, hopefully, to an even longer period without testing. A life time. And maybe, just maybe, Phoebe's doctors will once again talk of a cure and Phoebe together in one sentence. They have been hesitant to do this since this second relapse, but when they see her some speak of miracles, of how she continues to surprise and others speak of how far she has come. They still believe.

So for now, I will take the three months, the biweekly and sometimes more often trips to the hospital, the chemo, the hurt, the guilt, the fear and worry, and I will hold on to hope because within this time and since this relapse, we have packed in so much life and we have been able to watch Phoebe do things that I once worried would be impossible. And I know that right now, we are among the lucky ones. 

About some of those things that Miss Phoebe has been doing ...

Yesterday while I was making dinner, I looked out the window at Mae, Phoebe and their cousin playing in the yard. Phoebe running so fast that she looked like she might take off in flight shouting "Mae - I will catch you!". And she did.

Last week Phoebe ate more food at dinner than her dad, Mae and I combined and this was done without the help of steroids. I watched her gulp down milk, and clear her plate of its second helping after also having a first course, remembering a time not too long ago when we measured her intake in ounces, happy if she drank a single one while counting the number of cheerios she consumed and considering the juice of a watermelon as liquid. She is growing albeit slowly so I have no idea where all of these calories go. She does jump and run around a lot. 

Phoebe has sat on the potty more than she has not, and I have thought that she was fully potty trained a handful of times now. I'm ready to throw out the pull ups but we fall off the "potty wagon" about once a month. This month due to a urinary tract infection. Most months it is steroids that does it. When she does go, the look of pride on her face is just beautiful. 

Last night we went to meet the teacher night at Mae's school. Upon returning home, Phoebe told her Daddy that she would be in that class next year.

Phoebe has started to talk about having cancer. Out of the blue, one day she told me quite matter-of-factly that she does not have cancer anymore. That her strong cells go "pow pow" (she tells me this while punching the air with her little fists) and that she is okay. If we talk about going to the doctor, she gets very upset and tells us that she is not sick anymore, that she is going to the doctor just so they can see how big she is. 

This summer, Phoebe went down a water slide, she learned to ride a tricycle, and together with Mae, they brought sunshine to each day.

As September comes to an end, please take the time to read the September Series and Donna's Cancer Story and share these beautiful stories. Stories are so powerful and personal and they can move mountains - they are moving mountains. More people are aware of childhood cancer and my hope is that this awareness will lead to action. The common thread of many of these stories is the simple fact that not one of these moms or dads thought that they would ever be a "cancer parent". I can tell you that this was once the last thing on my mind and now it is all that I can think about. It can happen to anyone. Any child. Any family. 

Thank-you for continuing on this journey with us. 

Our garage sale for St.Jude raised $1383! Thank-you to all who came out despite the rain. And it rained all day. If you would like to give please follow this link http://fundraising.stjude.org/site/TR?px=2109846&fr_id=4820&pg=personal

"If you light a lamp for someone else, it brightens your path too" ~ Buddha

1 comment:

  1. Again, beautiful words Jenny-totally from your heart. I just wish more people who have not been touched with this horrible disease would be able to read your writing. I committed to sharing the awareness of cancer on my facebook page in September and I believe more people are realizing....my goal is to make as many people aware of the September - Go Gold - as possible. I don't have a child with cancer but if I can help out anyone who does this is the way to start - awareness.