Brooke Mulford Update

I am beginning this entry on such a sad note. Erik Ludwinski, who was such an inspiration to so many Neuroblastoma parents and warriors, passed away on Tuesday from Neuroblastoma at 25 years old. Erik was first diagnosed at age 6 and relapsed at age 20. Erik was an amazing young man whose strength, courage and faith were truly inspiring. He was a voice for all our little warriors battling this awful disease. I had the great pleasure and honor of meeting Erik and his equally inspiring mother, Donna, at clinic just a few months ago. My heart aches for his family and friends…please pray for them.

Brooke started with the IL2 and Antibodies yesterday morning. Crazy mood swings were pretty much the only issues while she was awake. Last night on two occasions she had a low grade fever (100.9). If she has 3 low grades (100.4) over a 24 hr period or spikes 101.4 or more than blood cultures are taken and she starts on 3 antibiotics. Earlier tonight she had her third low grade so everything has started. Her blood pressure is on the low side again (80’s/30’s) so doctors have been in to check on her and a fluid bolus was given. Her pulsox was dropping as well into the high 80’s and a respiratory therapist has come into evaluate her. So far not a huge concern but she is being monitored closely.

We are so blessed to be here at CHOP. The doctors, nurses and support staff are so dedicated and caring. During the snow storm many stayed as many as 3 nights here at the hospital. God certainly led us to the best possible place last January. I have met 2 more NB kids and families over the past couple of days, Robyn and Elizabeth. Robyn and her family came here from England to be able to get the IL2 & Antibodies and will be living at CHOP and The Ronald McDonald House (in between treatments) for 5 months! Elizabeth will soon be having her stem cell transplant. Please include them in your prayers as well.

When it seems rough being snowed in for a couple days and you think you’re going stir crazy, just think about what it must be like for these kids to be essentially isolated for months-years from family, friends and the outside world. WE NEED TO FIND A CURE NOW! Give these kids their childhoods back…

God Bless,

Amy