Susan Foster - Fight for her Life!

After a surgery to remove a Lymph Node and a call days later from her surgeon saying her Castlemans Disease has returned, Susie is now in a fight for her life. We need your help! Please read more to help her get the treatment that saved her before.

Susie is an Elementary School teacher here in South Florida, a Barista at Starbucks part time and a beautiful daughter with a belief that she was born to help others. Now we are asking others to help her. After recently having a large lymph node removed, pathology came back that it was Castlemans Disease. She is facing the Castlemans Battle for the “2nd time” in her life. As you will read below, Dr. van Rhee is our hero and one of several people who we attribute the saving of Susie’s life in 2003. He is one of the only doctors treating this disease in the US and the only one that we entrust to save our daughter's life once again. Susie is scheduled to fly to Arkansas in mid-September to meet with Dr. van Rhee. In the interim, we know from last time that insurance does not cover things like airline tickets, hotels, transportation, certain parts of treatment, etc. We had to do fund raising last time and thanks to the help of hundreds of people and organizations, most of who we did not even know, we raised enough money to keep Susie flying to Arkansas every two weeks and also cover the majority of the tests that were not covered at that time. At this point we can only base everything on what we know from last time. The one thing we know is Susie needs all of our help financially, emotionally and all the prayers she can get. We pray she has the same positive results this time around as she did last time. We’re not sure what this will mean for her career but as long she is here to tell the story and help others, she will deal with the rest. She has a very loving family here to support her and help get her through this. We’re praying that good people will reach out and do great things so we can get Susie what she needs to give her the best chance at making it through this again.

A little history:

It was May of 2003 when Susie first heard the word “Castlemans”, a.k.a. “CD” after being ill for several months. The local doctors best guess was that Susie had 2 years to live if we did not find treatment. They had resort to the medical dictionary to even figure out what it was. Doctors locally could only “guess” at what to do to treat her and for us, guessing was not acceptable.

Back then when you did a Google search for Castleman’s, only one link came back. It was a link that talked about a person by the name of Jim Johnston that talked about his bout of CD. We spent days and days trying to learn more about a disease that a doctor locally gave her 2 years to live without treatment.

After weeks of making phone calls and searching on the web we finally reached out to Jim Johnston and he told us about a place called ACRC in Little Rock, Arkansas that had a clinical trial going on for Rheumatoid Arthritis and it was showing somewhat promising results for Castleman’s. If it wasn’t for Jim Johnston and the single hit we obtained on Google, Susie may not be here today.

Long story short, we got Susie to Arkansas and saw a doctor by the name of Dr. Frits van Rhee. She was formally diagnosed with Multicentric Castleman’s Disease (MCD). We were told she was one of less than 80 reported cases in the US at that time. Wow, we see more people in a grocery store than there were cases of this form of CD. It was mind blowing to even try and grasp that. We agreed to the clinical trial as it seemed this was the only option to save Susie from this dreadful disease. At that time ACRC now known as UAMS were the only people in the US we could find that even knew anything about CD. It would require her to fly from South Florida every “2 weeks” until further notice. 46 trips to Arkansas later, Susie’s test came back clear and she was considered in remission. Susie at the time was the poster child for this disease and had the best results on the Clinical Trial. That brought emotions of happiness and sadness. Happiness for Susie and sadness as we saw several people who were not as fortunate.

Fast forward to August 2016. After a PET Scan with high SUV ratings on a very large lymph node in her left axilla (arm pit), she had the node surgically removed. Days later the surgeon called and told Susie the pathology results came back as Castlemans. 10+ years of remission, a successful career in education and a beautiful life ahead of her and it all came to a screeching halt with a single phone call. The only thing that helps to get us all through it again is the fact we know we have a doctor that has long been considered a hero, Dr. Frits van Rhee to help her hopefully get through this, again.

We will be updating this page as Susie meets with Dr. van Rhee and starts to receive treatment. If you are one of the ones that has helped, you can follow the progress and know because of “you”, Susie is able to get the best chance she can at fighting this disease again. We will acknowledge every donation and if there are any monies leftover at the end, they will be donated on everyone’s behalf to finding the cure for Castleman’s Disease.

On behalf of Susie and her family, we want to thank you in advance for your generosity, your prayers and your gift of life.