I am so sorry for not keeping the blog upto date. But as you read on I am sure you will understand that I have been running on steam. So here we go...
It’s hard to believe it has been a year since Ellie was diagnose with her brain tumor. Three surgeries and 40 weeks of treatment later we are still fighting this disease. As most of you know we were able to go on Ellie’s Make-a-wish Vacation last week (checkout my blog loveforellie.com a mothers blog to see pictures). If you have been keeping up with my blog you would know that the Friday before we left on her Make-a-wish, we received word that Ellie’s tumor is once again growing. Since they have taken as much as they can of the tumor without damaging her brain we were unsure what the next step would be. We continued onto our Vacation and put it out of our mind.
So Wednesday was our first day back to Chemotherapy since before our vacation. I expected to speak with Dr. Goldman and find out that we will continue on course like we have done in the past. Ellie struggled with every aspect of the day; I think she forgot reality on vacation also. When Sandy, Ellie’s nurse was doing her normal checkup with Ellie, she hinted things were going to be changing. I knew things were not good when Doctor Goldman came in with a straight face. So he informed us that her Chemotherapy is not working and we have another option. They rarely put kids under teenage age on this regimen. The new reginmen would consist of 4 days every 6 weeks (1-4 chemo pills every 6 hours, administered by myself), Everyother week going to the hospital for vincristine, and once a month going down to the hospital for infusions of antibiotics. The kicker is we would start at week one of 60 weeks. I did everything I could to not cry, it was already hard coming back to reality but to add this in the mix really did not help. So the only way we would be able to go on this Chemotherapy is if we could get Ellie to swallow 4 pills every six hours. Ellie has never swallowed a pill and when it comes to medicine it is extremely difficult. So we went home to practice for a week before beginging her new Chemotherapy treatment. The side affect list is long but the alternative is worse. The biggest concern is if Ellie has a particular Gene it could cause her to have leukemia also. They do not believe Ellie has this Gene but they cannot be certain. So as of right now the plan is to go with this regimen, there is one more option but it lacks in research and especially with this type of tumor. The Tumor Board made it very clear that the one with the pills is the one they prefer and is best.
Since this time we have begun our first set of Chemotherapy pills at home. I am proud to tell you that she was able to swollow the pills. I am so proud of her, she just rolls with the punches. The hardest part was waking her up in the middle of the night. Now everyone just pray that this chemotherapy works.
So moving on to more exciting news. Our family ended up getting chosen for the major fundraiser One for the kids cocktail party. Things have started and are moving forward quickly. While we were on vacation they had a board meeting and since I was unable to attend Kelli went for me. She was super impressed with the foundation. She also said the Event sounds amazing. The tickets are $90 for one or $160 for a couple. The event is at the Hyatt in Oakbrook, IL on April 28th of this year. Everything is included in the ticket price. Alcohol/drinks, food, and Entertainment. They are also selling raffle tickets for some big prizes. I am hoping we can pack the place with our family and friends. Please purchase tickets as soon as possible. Just to let you know one of the food stations is going to be a Brazilian Steak House. This sounds like it is going to be top notch and a good time. We feel extremely honored. They did ask since this fundraiser is mostly for us that we help out in any way as possible. We are looking for any Silent Auction or Raffle prizes for the Event. If anyone knows or can help with this, it would be greatly appreciated. Please contact myself or Dan Irwin which is the man that found our family.
The link for more information and to get tickets click on the link below
This foundation one for the kids is a 501c3 so your ticket is tax deductable also.
A huge percentage of the funds raised at this event will go to the Ellie Fund the remainder will be split for the following childrens charities. Special Olympics, Special Childrens Charities
A mother with a battle ahead of her.