Yesterday marked the two-year anniversary of Ellie beginning Chemotherapy. We celebrated by going downtown for a blood transfusion. Although this was not scheduled ahead of time it was something that was needed. For the most part it went pretty smoothly. There was one problem in the mix of the day. We originally planned for the in home nurse to come for chemotherapy on Wednesday so the Home base nurse program already planned delivery of Ellie’s Chemotherapy. Her nurse from Lurie Children’s hospital told me just to bring the Chemotherapy with to the hospital on Wednesday and they would administer it while we were there. For some reason god was watching over Ellie yesterday. When we handed the nurse Ellie’s chemotherapy and Zofran the nurse noticed that the medicine was miss labeled. It was pretty scary when Ellie’s nurse was shooken by this. Well apparently they have thought about disbanding the in home nurse program for sometime now for this exact reason. The mistakes that can happen at home could be very dangerous. Needless to say the Doctor and Nurses both informed me that I would be getting a call later this week to tell me what the plan is for Ellie’s medical care. Although I would drive to the ends of earth for my daughter’s medical care I am nervous about the change of schedule once again. We finally had it worked out where Ellie was down to missing only one scheduled day of school a month and now we are looking at once again driving to the hospital once a week to get her medical care. But on the other hand I obviously want to do what is safest for her. It seems as if every time we get confortable an in a routine things have to change. So now we wait for the next step.
On a positive note we met a foundation I was unfamiliar with. The Young Association Board, and they informed us of an event this summer called Run For Gus. This foundation totally supports Brain tumors and supports Dr. Goldman’s research for a cure. Needless to say I will be heading up a team for this summer in Ellie’s Name. From what all the nurses and doctors told me this event is very kid friendly and tons of fun. I am very excited to be able to support something that directly benefits a cure for my daughter. So more information on how to join Ellie’s Team will be coming soon.
One other quick note, April 20th is the One for the Kids Cocktail party. They were such great support for our family last year and want to continue to support their fundraising effort for other families in need. Dave and I will be attending this and hope to see some familiar faces there also. If you went last year you know we all had a great time. Visit OneforTheKids.org for tickets and more information. I included pictures of Ellie in the hospital yesterday and pictures from last years one for the kid’s event. Enjoy!
A mother with a battle ahead of her.