Wonderful News

Wonderful news to share!!! Lily is done with chemotherapy!!!  Her oncologist 
came back from Vienna and told us that one of the seminars she attended gave a 
short presentation on Lily's cancer - congenital glioblastoma and she talked to 
the leading research oncologist afterwards and they said with complete tumor 
removal and 1 year of "lite" chemotherapy the prognosis was good on the number 
of cases they have studied. So since Lily has had an equivalent treatment her 
doctor gave us the option of ending her chemotherapy which we decided on and her 
doctor was happy with the choice we made. She will still need to have MRIs every 
3 months still for the next year and then if all goes well they will change it 
to evey 4-6 months the following year. She will also get blood drawn just to 
monitor her and will get her port-a-cath removed sometime in September. She is 
still considered immuno-suppressed for one year so we will need to be careful 
with her during the flu season but we are trying to take advantage of the nice 
weather and go outdoors more. I think cabin fever has hit us! 
 
It feels surreal, I'm waiting for it to sink in that we don't have to give her 
chemotherapy anymore but it'll probably set in next week when I have to take her 
to get her labs done but don't have to administer the chemotherapy to Lily that 
night. 
 
Please continue to keep Lily in your prayers and thoughts because I totally 
believe that all of you guys have played a vital role in Lily's fight against 
her cancer and she wouldn't be doing so well without it. One of the nurses told 
me that the real anxiety starts now that she is off chemotherapy but I think it 
will always be in the back of my mind 'what if the tumor comes back'; I just try 
to push it way way back in my mind but all of your support helps ease my anxiety 
especially the couple of days before and after Lily's MRIs...so thank you thank 
you thank you!!!  And I am SO SO grateful that I can share this joyous news with 
you all!!! 
 
I've attached a picture of Lily standing, she has learned to pull herself up on 
the couch and is cruising the furniture and can stand for a couple of seconds on 
her own without any support.  We're hoping she will be off and running by her 
2nd birthday.