Wednesday, June 30, 2010

Ray of Sunshine...

Dr Shen got back from her pediatric brain tumor conference in Vienna and called 
me to share some options regarding Lily's chemo which I am still cautious about 
getting too excited about but am excited about the news. I guess this sums up 
any hopeful or good news I have gotten regarding Lily's illness this past year. 
I am happy to hear it but at the same time I am scared if I write it down or say 
it, I might jinx it. Anyways, Dr. Shen said that she attended a session where 
some researchers did a small presentation on Baby Blastoma which is the nickname 
they gave to 'congenital glioblastoma'. They said that there were positive 
outcomes if they were able to remove the tumor completely and treated the 
patient for a year on 'lite' chemo. Well Lily will hit a year of chemo in 2 
weeks and Dr Shen gave us several options to mull over. We could end the chemo 
by the end of the month or continue until her next MRI in September. She can't 
make a decision for us but she said that the long term effects of chemo are 
still unknown but it would probably be better to not keep her too long on it. We 
will meet with Dr Shen at the end of July to discuss our options some more and 
decide what to do. Of course, since this cancer is still very rare, Dr, Shen 
cannot tell us 100% the tumor won't come back, but she said that 'baby blastoma' 
has been found to be less malignant than adult glioblastoma. I feel like we have 
passed a major obstacle with this news but at the same time I'm scared that the 
tumor will come back when she stops chemo, but of course I worry about the long 
term effects of the chemo. I've started compiling a bunch of questions I have 
for Dr. Shen when we will meet with her. I think I am still in a state of 
disbelief that it would be possible for Lily to end her chemo treatments but I 
cannot wait for us to start living since we have practically put our life on 
hold due to Lily's illness. It's funny because I remember saying a long time ago 
that when Lily gets off chemo we will be out every single day but now that it 
gets closer to being a reality I feel like I am still going to be cautious 
because I want to prevent Lily from getting anymore illnesses. I think I will 
just be happy to be out as a whole family again! This month can't go by quick 

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