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.

Thursday, September 6, 2012

First day of school and 100 % chimerism

Tomorrow is a big day.  It is Mae's very first day of junior Kindergarten.  She is excited and nervous and I am excited and nervous for her.  We went to meet her teacher yesterday, who oddly enough, taught me French in grade 4.  I am so happy that we are all back home so that Mae can make this huge step and I am hoping to not be the mother who can't hold back her tears or leave the school, come tomorrow.  I will, however, be the mother taking as many pictures as I possibly can. 

As for Phoebe, she is great.  Growing and bossing her big sister around everyday.  Her latest word is "space", and she will make herself heard if anyone is following her too closely up the stairs to the slide.  After shouting "need space!" she will usually say in a proud voice, "by myself" - she is an independent little lady, our Phoebe.

Phoebe and I went to Memphis last week.  She had her blood tested and her chimerism is perfect at 100% donor cells.  They also tested her T helper cells, these are very important cells as they will protect her against viruses and they have also shown to be effective in fighting cancer cells.  They are wonderfully within normal range and have also increased, from 400 to 490.  Go Phoebe go.  As each day passes and we move further away from this cancer, the worry and anxiety that I feel becomes smaller.  Talking to Phoebe's doctors also helps to manage my fears and on this trip to Memphis he reminded me that as we get further out, Phoebe's chance of relapse becomes smaller.  He also used the word "strong" to describe Phoebe's new immune system.  Strong.  It is strong and the hope is that if any bad cells try to come back, she will fight them off. 

While we were there we also saw the eye doctor who was happy to report no change to Phoebe's eyes or vision and said that everything looks normal.  Again, loving that word, normal.  We also saw the dentist who agrees that Phoebe's teeth need a lot of work.  They will do the work at St. Jude sooner than here at home, and so we are headed back there in a couple of weeks for dental surgery. They plan to do an xray to assess the damage before doing any repair to Phoebe's teeth, but the dentist did say that she will need crowns on most if not all of her top teeth and a few of her bottom ones.

In other news, please don't forget that September is Childhood Cancer Awareness Month.  Wear gold, not pink this month.  Honor the children who are fighting this disease, the ones who have lost their lives, and the families who are left to pick up the pieces. 1400 children will be diagnosed with Cancer this year in Canada.  46 children will be diagnosed with cancer today in the US.  

This picture was taken a week before Phoebe was diagnosed with infant Leukemia.  Before our lives were turned upside down.  She is two months old.  I remember working so hard to get that smile.  I look at this picture now and I search for clues, things I should have seen that might have alerted us to how sick she was.  There is nothing.  Just like today, she is beautiful and bright.

No comments:

Post a Comment