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Monday, March 15, 2010

A Brooke Mulford Update

Coming to an End!

Wed 3/10
Wed morning Brooke’s doctor (Dr. Weiser) gave us a tour of Dr. Maris’ Neuroblastoma research lab! This is where every penny that we raise for Brooke’s Fund for Neuroblastoma Research goes. We have turned into CHOP over $25,000 so far from various fundraisers and the sales of Team Brooke shirts and bracelets http://giving.chop.edu/site/TR/Events/General?pxfid=5440&pg=fund&fr_id=1030

Brooke made a poster to give them that said, “Thanks for Fighting for Me and My Friends! XOXO Brooke” and she put pictures of several of our friends at CHOP that also have NB, painted her handprints on it and of course many stickers. We had such a great time and everyone made such a big fuss over Brooke and made her feel so special. We have some great pictures but I’m having some media card issues so after I get back home and can hopefully recover the photos, I will be sure to post them on here. After the tour, Brooke had an Ophthalmology Clinic appt. She has been patching her right eye 2 hours a day for the past month because her amblyopia (lazy eye) had gotten worse again. Also, she has had some other issues with her eyes since her 2nd round of the antibodies back in December that her eye doctor (Dr. Binenbaum) has been watching closely. Everything went well and her eyes seem to be improving. Brooke will have another follow up visit in 2 months and hopefully all her issues will be resolved by that time. After Ophthalmology we headed upstairs for Oncology Clinic to see Dr. Weiser and wait for our room to be ready. I’m happy to say for our last admission (hopefully ever)we got a room on our favorite hall (the south side) with a window to outside (even looking at the rain is better than looking into the ER waiting room). Brooke was so excited from all the events of the day and being back at CHOP that when we got in the room she danced for hours (to the same song I might add, Single Ladies, over and over again).

Thurs 3/11
Thurs was an exciting and busy morning. The CBS Early Show was here interviewing, Brooke, Me & Dr. Weiser for a follow up story they did on Comfort Capes in December (here’s a link to the segment that showed in Dec) http://www.cbsnews.com/video/watch/?id=6018224n&tag=api

Brooke received a Comfort Cape in January from my friend Kim and loves it so much. I’ll try and post a picture of her in her cape and I will let everyone know when the follow up story with us will air.

It was a good thing they were here in the morning before Brooke got hooked up to the morphine and antibodies because she gets some pretty intense mood swings once the meds are going. Once that was done the rest of the day was pretty uneventful (other than the mood swings which are exhausting for everyone around her).

Friday 3/12
Mood swings continued but not as intense as usual, she had a low grade fever and needed a blood transfusion.

Saturday 3/13/10
Aunt Cheryl braved the monsoon and came to visit and Brooke was busy making cards for every person that walked into the room!

A 9 year old boy, Wayne, from Brooke’s school (Salisbury Christian School), was diagnosed on Monday with Stage IV NB and is being treated at Hopkins. We ask that you please add Wayne and his family to your prayer list. We know how long and difficult this road will be for them.

One of our good friends at CHOP, Malcolm, who is 11 years old and has Ewings Sarcoma has started a foundation to raise money for research and awareness for pediatric cancer called Make Some Noise-Cure Kids Cancer. I was fortunate enough to be able to attend the kick-off event in January where Malcolm debuted his awareness video “1 in 320”. Here is the link for the video (look for Brooke in itJ)

Please take a moment to watch it. http://www.youtube.com/watch?v=mV8xdknGNg8

God Bless,
Amy

1 comment:

Anonymous said...

Brooke I am so proud of you!! Amy your an awesome mom...keep of the fight! We love you guys!