We were at St. Jude this past Monday for scans and they came back STABLE!! We also met with Morgan's neuro-oncologist to discuss the end of her 2 year clinical drug that she has been on. With the very strong recommendation to take her off the study drug, October 6th will be her last day on the meds. Long story short, at this point in time, her doctor strongly feels that the drug will be doing more harm than good to her tiny little body. From what we were told, it is typical that any pediatric cancer patient come off their chemo after 18mths to 2yrs. Because it is a clinical drug we don't even know all the side effects from being on it but they do know that it can have damaging effects on your liver and blood cells and could even cause Morgan to develop leukemia if kept on too long. Besides the harsh side effects, her Doctor also just doesn't believe that this phase 1 study drug is even doing anything. No other DIPG patient to go through that Hospital on this drug has survived so they believe that somehow because Morgan has been atypical from the start that she is somehow different. It is a mystery to everyone! This was, by far, the hardest decision we have ever made in our entire lives but we 100% trust her Doctor and know that everyone at that Hospital has Morgan's best interest at heart and care for her very much. Our safety net is gone and we can only hope that Morgan continues to defy the odds on her own. If the tumor should start to grow they will put her on an entirely different drug, once you are taken off the study drug you cannot go back on. We will continue to visit St. Jude every 8 weeks for MRI's and keep a very close eye on her! On the positive side, she will eventually be off ALL her meds and, if all goes well, we can even get her port out, which will mean less needles and less anxiety for her. We will celebrate the end of her chemo with a trip to Disney in November! We have learned that life can be short and we must live life to the fullest because at this point in our lives, what the hell are we waiting for!? Sticking with that moto we are thrilled to announce that Morgan is going to become and Hunter is once again going to be a big sister in April!!
A big thanks to everyone that was able to eat at Chili's on the 23rd and don't forget to check out our St. Jude Give Thanks Walk Helping Hands 4 Morgan Team page!! So far we have raised $1125, please help us reach our $10,000 goal! Last year we only put a goal of $2500 and raised almost $7000 so this year we set our goal high and I know we can do it!
“Children with cancer are like candles in the wind who accept the possibility that they are in danger of being extinguished by a gust of wind and yet as they flicker and dance to remain alive, their brilliance challenges the darkness and dazzles those of us who watch their light."-Unknown
Thursday, September 26, 2013
Monday, September 9, 2013
First Day of School!!
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| 1st day of UPK! |
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| Walking Hunter out to the bus for her 1st day of 2nd grade |
On September 16th, 2 years ago, Doctors told us that Morgan had 18 months to 2 years max to live. We never anticipated being able to watch her go to school for the first time but she has defied the odds and not only is she still with us but she is going strong! It was a morning full of both happiness and tears (on my part, not Morgan!)!
Wednesday, September 4, 2013
Childhood Cancer Awareness Month
If you have a minute, check out this link for Chili's Grill and Bar, they are a HUGE supporter of St. Jude! If you happen to eat a ANY Chili's location on September 23rd, NATIONWIDE, 100% of the profits will go to St. Jude Children's Research Hospital!! ALSO, Morgan was asked to design her very own Chili Pepper for their More Hope for St. Jude Kids campaign and she will be featured in the Chili's Kids Menu, nationwide, starting in November!!!
#MoreHope for the kids of St. Jude
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