Edward Migliore's Journal
Happy Annivesary! 3 Years N.E.D.
Written Jan 26, 2014 10:50pmCongratulations Edward!!!
3 years ago today, Edward had the surgery which removed all traces of cancer from his body (along with most of his right femur). We just went back and read some of the entries from three years ago when all of this started. It's amazing how quickly all of the feelings come back while reading those entries. It's strange too, sometimes it seems like it all happened so long ago and other times, it seems like just yesterday. Most importantly, here we are 3 years later with no evidence of the horrendous disease that invaded Edward's body!
I also looked back and realized that I haven't posted an update since September. A lot has happened since then, but with a few exceptions, most of it has been just regular, blessedly, normal, day-to-day LIFE for which we are grateful. I guess I just don't think it's worth writing a lot about.
Like I said, there have been a few notable events...
First, in late December Edward had his scans...they are now at 4 month intervals...and the scans were clear which was the best present we could ever get for Christmas!
Then, right after New Year's we went to Maui, Hawaii on Edward's Make a Wish trip. We all had an absolutely wonderful time. That's Edward Ziplining in the picture for this post. Some of his other favorite activities included: a trip to Twin Falls where he swam in a waterfall pool, a trip up Mount Haleakala where we almost saw the sunrise, swimming at the beaches, whale watching and snorkeling at Molokini crater and horseback riding. We had a very busy week but the most enjoyable time as a family that we've had in a really long time. We were actually supposed to take our "last, big, family trip" to Cancun at Easter time in 2011 (before Brian and Justin started college), but of course we had to cancel that trip because of Edward's surgery and treatment. When Edward was nominated and approved for a Wish, he could have wished for anything. We encouraged him to think of himself and to do what he really wanted to do. It didn't take him long to decide that what he really wanted was for all of us to take that trip that we had missed out on. What a kid!!!
The only problem was that Cancun was on the government travel watch list and Make a Wish couldn't plan a trip there. So, it took a while for Edward to decide on an alternate location (Maui) and we also had to wait until Brian and Justin had the same break from school. That finally happened a few weeks ago. We all just had a fantastic time!!!
Now, of course, we need to all come back to reality...work, school, snow and cold weather (ugh!). Unfortunately we also had to come back to a new chapter in Edward's treatment. Don't worry, scans were clear...there was however, another note on the scan results that we hadn't seen before...diffuse osteopenia which is a loss of bone density. This is a known risk of the chemotherapy that Edward had...one of many risks that we had hoped he would never experience. Edward had a DEXA scan on 12/26 to measure his bone density. Right now, he is taking a calcium and vitamin D supplement and will be seeing an endocrinologist in the next few weeks. So I'll have more once we know more.
As I said, this is just one of the known risks of the chemotherapy that Edward had. Hopefully this is the only one that he will ever have to deal with, but the reality is that there are many, many children and young adults suffering from and sometimes dying from major medical problems, not from the cancer that they fought and defeated, but from the treatments that they were given. Yes, the treatments worked and these children are cancer free, but at what cost? Hearing loss, bone loss, loss of fertility, heart damage, kidney damage, joint damage...and the list goes on and on. There have to be new treatments developed that kill the cancers but do less harm to developing bodies.
The way to develop new treatments is to fund research. Please contribute to pediatric cancer research in any way that you can. Also, please consider attending the Hugs for Brady Winter Gala on Feb. 8th. Dinner, dancing and a whole lot of fun! We still have room for 3 more at our table. Details can be found at: http://www.hugsforbrady.org/
Also please check out http://www.thetruth365.org/ where there is a video and a petition to convince the government to allocate more funding to pediatric cancer research. Of the millions and millions of dollars that the government allocates for cancer research, only 4% is allocated for all pediatric cancers. Our children are being treated with drugs that were developed 20-30 years ago for adults. Please sign the petition!
That's it for now. I'm sure I'll have more news in the coming weeks.
Thank you all, always for your prayers and good wishes for Edward and for all of us.
With Love and Hope for a Cure,
Edward Update and Blood Drive Today!
Written Sep 29, 2013 10:58am
Just a quick update...It's a few weeks into the new school year and everything is going well. Edward started 7th grade and recently celebrated a milestone...Sept. 14th he was 2 years off treatment and feeling great!
He also auditioned for and made the Jazz Ensemble at Crossroads South Middle School! So he will be playing in both the Concert Band and the Jazz Ensemble. Congratulations Edward!
And...since school started a week later than it usually does, we took the opportunity for a mini vacation, a trip to Maine to visit with Dr. Weiss, Edward's Oncologist who relocated last year. Actually it was a vacation with a purpose. Edward's grandmother, Mary Migliore, donated a Brady Buggy in Edward's honor. Edward requested that it be delivered to Dr. Weiss for his clinic in Maine. So we went up to tour the hospital and clinic and dedicate the buggy at the clinic (see pic) and a second one which the foundation donated to the hospital. In addition to our purpose, we managed some sightseeing around Portland and Kennebunkport, Maine and a day in Boston following the Freedom Trail..all in all,.a very enjoyable and rewarding trip.
And now for an important Public Service Announcement...
Hugs for Brady Blood Drive TODAY! Join the Fight to Save a Life!
For those who live nearby, please come to the blood drive today. It is sponsored by the Hugs for Brady Foundation and is taking place in the space next to Confectionately Yours at:
3391 ROUTE 27
FRANKLIN PARK, NJ 08823
It started at 9:00 AM and will run until 5:00 PM
Walk-ins are Welcome!
T-shirt for every donor! Chance to win Superbowl tickets!
I will be heading over shortly...hope to see you there.
As always, thanks for keeping Edward in your prayers.
With Love and Hope for Cure,
P.S. If you are interested in donating a Brady Buggy, please contact Sherrie and Mike at: http://www.hugsforbrady.org/
Still NEDward!!! Scans are Clear!!!!
Written Aug 9, 2013 12:28pmWe just picked up the radiologist's report on Edward's Chest x-ray and everything is CLEAR!!. Of course, the official word will come from Edward's oncologist when we visit on the 19th. This is when we will also get the blood work results, but based on the reports from the leg x-rays at CHOP on Monday and the chest x-ray today, we will be resting easy for another 4 months.
Thank you all for all of the extra prayers!
With love and hope for a cure,
P.S. Today's picture is from the flag raising ceremony on the 4th of July at Ocean Beach III. That's Edward's Grampy playing the trumpet!