Katies Fight Against Castleman's Disease
Organized by: Mileva Repasky
Bump in the Road
August 01, 2017
New update: Katie is finsihing up her round of cytoxan next week. This is the 4th round of chemotherapy she has undergone. First time with this drug so the doctor started her off on the pill form to help ease her into the more potent version of this drug. No changes as of yet and nothing seems to have made a difference. Please continue to send love and prayers for her and our family as we continue to move forward with her fight!
Katie has started her chemotherapy and is now approaching her second dose. She will start with 6-8 weeks of this with labs and blood work done very two weeks. After initial round she will be evaluated and possibly go through a second 6-8 week round of two different types of chemotherapy. Please continue to keep her in your thoughts and prayers.
Because Katie's PET scan and MRI showed continuous growth of her lymph nodes in her right axilliary, we are currnetly in the process of trying to determine the best course of action to fight this disease. We met with the surgeon who confirmed to us that the nerves are involved and that they are the main chords of the brachial plexus...nerves that control movement in her right arm.
He said since the nodes are not tumors they will never grow into the nerves, but they can grow around them and the nerves can become more intertwined.
He believes there is moderate risk of possible nerve issues, but a higher risk for lymphedema (swelling of the arm).
We now have to meet with the plastic surgeons who will be involved in Katie's surgery to talk about surgical options to reduce that risk.
Surgeon said surgery would be long (6-8 hours) and that she would have a JP drain again for probably 2 months or longer.
Surgeon also said if nodes continue to grow surgery would no longer be an option.
We will need to ask plastic surgeon and oncologist what the recovery is, what if we can shrink the nodes with chemo first and then more safely remove them after, and if nodes grow more will they not start pushing on nerves and cause diminished use of right arm anyway? Continue to pray for her and for wisdom that we can make the best decsion for her.
Our daughter Katie, at the young age of two years old, was diagnosed with an extremely rare disease that attacks her lymph nodes, Castleman’s Disease. When Katie was 18 months, a large mass was found in her arm pit under her right arm. Over the course of seven months she underwent a multitude of tests, scans, blood work, and biopsies to rule out everything from a cold to cancer. In October of 2013, her biopsy revealed the diagnosis of Castlemans. Since her diagnosis, she has undergone several procedures which included two surgeries in attempts to completely remove all of the infected lymph nodes in that area.
Castleman's Disease (CD) is very similar to lymphoma types of cancer and can lead to lymphoma later in life. This disease attacks the lymph nodes and other immune cell structures in the body. It can be seen in one section of nodes, known as Unicentric, or in multiple sections known as Multicentric. As it is a rare disease in itself, it is very rare in children and has never been seen in someone as young as Katie. In the past, the version of Castleman's Disease that Katie was diagnosed with, Unicentric CD, has been treated successfully with a resection and removal the nodes in the affected area; thus presenting a "cure" for the disease. Because there has not been a clear answer to many questions and there is not a lot of in depth data or research available, our battle for a solution has been very difficult. To complicate the struggle, a complete resection was not possible with Katie due to the location of the remaining nodes near the main nerve in her arm. Doctors overseeing Katie's case have implemented a treatment plan to monitor the size of her nodes with repeated scans every 3 months. If the nodes grow in size, the only current and administered treatment option is to shrink them by undergoing radiation treatment, chemotherapy, a steroid treatment or a combination of those listed.
With so many unknown variables involved with this disease, our fight continues to gain knowledge, expand research, and find the best way to continue giving Katie the best outcomes possible. She continues to be our fun-loving, strong, and courageous 2 year old daughter against something that we have yet to begin to understand and she will not until she is much older. She has undergone more than we have ever imagined our child would have to do and has taught us so much about courage and love. We cannot be more proud of Katie for all that she has endured and for facing the unknown of the future.
All proceeds will go towards continuing Katies care as well towards Castleman's research.