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.

Sunday, September 15, 2013

Phoebe's St.Jude Garage Sale ...

It has been a while since I have written an update on Phoebe, which is a good sign. Phoebe has been doing very well. She has enjoyed her summer with Mae and we have avoided the hospital as much as possible.

We visit CHEO about once every two weeks for blood work and chemo and so far Phoebe seems to be tolerating the chemo relatively well. Or as well as can be expected given that it is chemo. Her liver enzymes were elevated last month and we are not sure if it was chemo related or a virus, but they are on their way down. Her kidney function was also elevated but is also on its way down, so her doctors are not concerned. I, on the other hand, have a hard time not worrying about what all of this chemo is doing to her body. I wish there was another way, or at the very least, some answers or data as to how effective all of this extra chemo will be. I wonder often if it is doing more harm than good. These drugs have been given many opportunities to cure Phoebe and each time have failed, but our reality is that we have no other choice but to continue on and hope that each test and each MRI remains negative. So far so good ... 

Phoebe's next MRI and bone marrow aspirate will be done at St.Jude at the beginning of October. Mae will be joining us and she is especially looking forward to being back in Memphis and talks often about all of the fun things she wants to do while at St.Jude. It is amazing to me, how many good memories she has of the time we spent there and I think it is a testament to the efforts made by the staff at St.Jude to make it a place of healing for every family member. I will always be grateful for how warmly Mae was treated while we were there, she was embraced by an extra large and beautiful extended family. 

Next weekend, to raise money for the St.Jude Memphis half marathon that Team Phoebe Rose Rocks will be running in December, we are holding a garage sale. All of the money raised will go to St.Jude and their efforts to find cures for pediatric cancers. My family has greatly benefited from the work being done at St.Jude as have many other families, not just in the US, but around the world. St.Jude openly and freely shares the research that they do with the world and have been behind many advances made in the treatment of childhood cancers. To name a few ...

St. Jude has developed treatment protocols that have helped push overall survival rates for childhood cancers from less than 20 percent when the hospital opened in 1962 to 80 percent today.

Protocols developed at St.Jude for treatment of childhood cancers are used at hospitals around the world. 

In 1962, the survival rate for acute lymphoblastic leukemia (ALL), the most common form of childhood cancer, was 4 percent. Today, the survival rate for one form of this once deadly disease is 94 percent, thanks in part to research and treatment protocols developed at St. Jude.

During the past five years, 81 cents of every dollar received has supported the research and treatment at St. Jude.

There is still much work to be done and St. Jude recently completed an extensive expansion program that bolstered the hospital’s research and treatment efforts. The expansion included an on-site facility for the research and production of highly specialized treatments and vaccines; an expanded Department of Immunology; and a new Department of Chemical Biology and Therapeutics for discovery of new drugs. New drugs, so important as currently very few new drugs have been approved for use in pediatric cancers in the past thirty years. 

St. Jude pioneered a combination of chemotherapy, radiation and surgery to treat childhood cancers.

Research done at St.Jude showed that personalized  chemotherapy can improve the cure rate and avoid the use of radiation in the treatment of Acute Lymphoblastic Leukemia, therefore diminishing the severity of long term side effects.

 St. Jude was the first institution to develop a cure for sickle cell disease with a bone marrow transplant and has one of the largest pediatric sickle cell programs in the US and Canada.

St.Jude has an international outreach program to improve survival rates of children with cancer worldwide, through the sharing of knowledge and information. There are currently 20 official   partner sites in 15 different countries around the world. International Outreach helps partner medical institutions develop tailored evidenced-based protocols for treating children with cancer and other catastrophic diseases. St. Jude physicians serve as mentors to physicians at partner sites and consult on difficult cases. St.Jude also partners with local fundraising foundations that support the medical programs. This model has proven to be highly effective in providing children in developing countries access to modern treatment and care.

St.Jude is a truly remarkable place and I am very happy to be giving back to this hospital that has given us and so many other families hope. While we were there we witnessed the work of many incredible doctors and researchers and the treatment that Phoebe received is now being trialled in Canada. Knowledge is constantly being shared to benefit other children with cancer. 

If you would like to help, please stop by our Great New Edinburgh Garage Sale, at 124 Keefer St., off Chricton Ave. There will be delicious baked goods, Mae, Phoebe and friends will be serving up lemonade, and we will have treasures galore! Not to be missed! 

If you are unable to come and would like to donate, please visit:


1 comment:

  1. Hi Jenny! I just got reading through a few of your posts and I had a quick question. I am involved in the cancer community and was hoping you could email me back when you get the chance. Thanks! - emilywalsh688@gmail(dot)com.