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.

Monday, January 30, 2012

Positive steps ...

Today Phoebe had another visit to the hospital.  Her blood was checked and everything looks good, her platelets are slowly climbing and her other counts are holding steady.  Her white cell count jumps around a bit and was low today - still in normal range, but anything white cell count related is stressful.  The doctors remain comfortable not doing a bone marrow test right now and will wait until day 100 or earlier if there is a reason to. They are happy with Phoebe's progress and that is what we are focusing on.  Positive steps forward. 

Phoebe's drug count has shrunk and this makes me very happy.  Now instead of 8 drugs twice a day, she gets 3.  The 3 that are left over are protecting her against viruses, fungal infections, and she still has the twice daily injections.  The protection against viruses and fungus is necessary until Phoebe has a normal amount of T-cells - they are the last type of white cell to come in because the immuno-suppression works against them.  Now that we are without that drug these wonderful virus and cancer fighting cells will have free reign.  Free reign to kick Leukemia to the curb. 

The puzzle with Phoebe's eyes remains just that, but it is not for lack of trying on the part of many doctors.  The opthamologist that has been seeing Phoebe has called in some troops - asked for help and advice from her collegues and on Wednesday 3 eye doctors are going to have a look.  For them to get a clear picture and run all of the tests they need to, it will require Phoebe to be sedated ... again.  Hopefully her friend George will be there.

I appreciate all of the effort that is going in to solving this problem, no one is giving up and the opthamologist that I spoke with today is determined.  Not only to solve the problem, but to save Phoebe's vision.  The fact that Phoebe's vision could possibly be at risk scares and worries me, but not nearly as much as many, many other things we have been and are faced with everyday.  Since Phoebe's battle with Leukemia began, we have lost many brave friends.  Wonderful, vibrant, incredibly courageous children are dying in the dawn of their lives.  When I hear of another life lost I want to scream and shout and tell as many people that will listen that we need help.  That there aren't enough funds dedicated to children's cancer research.  That many children's cancers carry a very poor prognosis, including Phoebe's.  That too many children are suffering with or dying from this disease.

We have seen incredible advances made towards a cure over the past 15 months and we know that research helps and that many people are working very hard, but sadly with the exception of St. Jude, the Children's Oncology Group and a few others, very few large Cancer related organizations dedicate much to Children's Cancer research.  Some shockingly give less than a penny raised.   Why is that?  One oncologist told us that it is simply because there is no money to be made.  The drug companies making these life saving drugs simply don't make a profit by developing drugs for children  Many are sick and dying, but not enough to make a profit.  That's something, isn't it?  

To the right of of this page is a list of many wonderful organizations who are working very hard to advance the cure for Children's cancers.  Our situation reminds us everyday, not just of the overwhelming need for more research and funds directed specifically to childhood cancer research, but also of the incredible people who despite all that they are up against work tirelessly to help children like Phoebe.  Although our journey has been long and not free from bumps, we feel very lucky to have benefitted so much from this hard work and determination. 

To all of the sweet and courageous warriors who are fighting, to the brave souls who have lost their battle, and to the many parents who are hearing those dreaded 4 words, your child has Cancer, for the first time today - I salute you, my heart aches for you, and I admire you. 

1 comment:

  1. hi,
    very happy to see that Phoebe has less drugs to take. That is wonderful!
    have a nice day!