Well, it’s a good thing that I took Brooke up to CHOP last Thursday. She wound up with a hole in her central line (MedComp) and had to have surgery on Friday to have it removed. The timing was perfect at least. She is pretty much done with treatment other than oral Accutane until April 28th and our surgeon who we just love (Dr. Mattei) at CHOP is usually not there Fridays but he was that day and was able to do her surgery. We were going to try to wait until she did her end of study scans sometime in May but it is so nice having them out. We don’t have to worry about flushing them daily, changing caps weekly, dressing changes and most of all the risk of her getting a line infection and she can take real baths again! Brooke did great right after the surgery and as soon as she felt up to it wanted to make her rounds through the hospital to see everyone and show them that her “tubies” were all gone! Once we left CHOP to head back to my Mom’s house in NJ she started to feel the effects (overall just didn’t feel well and was exhausted) so we stayed another night at my Mom’s just in case there were any issues which thankfully there were not and she woke up Sat morning feeling great.
Sunday, Brooke had her last GM-CSF injection (woo hoo)! Thank you Miss Liz so much for what feels like the hundreds of shots that you have given Brooke over the past year and a half (and also Kellie, Tonia, Dr. Jeff and Marcie’s friends in NJ for filling in when Liz was unable to). There is no way I could have given them to her (well I guess I could have if I had to but I’m so glad that I didn’t)!
We are heading back up to NJ tomorrow after Brooke’s dentist appt. She is scheduled at CHOP Wed morning with her Audiologist, Wendy and then has Onco clinic in the afternoon with Dr. Weiser.
Please also pray for the little boy Wayne at Brooke’s school that was just recently diagnosed with stage IV NB. He was scheduled to start his chemo today at Hopkins.
God Bless,
Amy
I really want to give a shout out to some special people that have chosen to honor Brooke by shaving their heads to raise money for pediatric cancer at various St. Baldrick events throughout the country. Some I know and some we have never met but they are all hero’s to us! If you are interested in visiting their fundraising pages, I have included the links under each name.
Sam Hayes, who is the 8 yr old son of Maureen, a good friend of mine from high school, shaved his head March 13 in Lawrenceville, NJ and has raised over $1200! His mom told me that after he got it shaved he said, “I’m going to do this every year until Brooke is all better!” The event itself even honored Brooke and her story/photo was posted throughout the event!
http://www.stbaldricks.org/participants/mypage/participantid/375201
RJ Gauld, a friend of mine from high school and his son Matthew participated March 7th in Collingswood, NJ and each raised $210! RJ
: http://www.stbaldricks.org/participants/mypage/participantid/366700 Matthew:
http://www.stbaldricks.org/participants/mypage/participantid/366704
Jason Pickett: http://www.stbaldricks.org/participants/mypage/participantid/364259 and Jim Mauro: http://www.stbaldricks.org/participants/mypage/participantid/368706 will be shaving their heads in Baltimore, MD on March 27th and Elizabeth W. will be shaving hers on May 14th in Tinley Park, IL http://www.stbaldricks.org/participants/mypage/participantid/387292
Wonderful news. May God bless you all.
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