Nurse Sarah...she was so helpful throughout this journey

Mary Jo Brace

First post: Jul 26, 2017 Latest post: Jul 13, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

In April, my mom had an X-ray on her left leg due to pain from an injury. The X-ray came back normal on that leg, but it showed a lesion on the RIGHT leg. She went in for an MRI, which showed a lesion in her tibia. Thanks to Dr. Raycraft in Decatur, he sent her to an orthopedic oncologist, Dr. Luu, at the University of Chicago in May. Both Dr. Raycraft and Dr. Luu were uncertain of the findings and recommended that she have a fine needle biopsy. There appeared to be "small fragments of bone and atypical lymphoid infiltrate worrisome for lymphoproliferative disorder". A repeated biopsy was strongly recommended. 

On June 6, my mom had a deep tissue biopsy. The results indicated that she has Diffuse Large B Cell Lymphoma. However, the kind she has is lymphoma of the bone and is extremely rare so many doctors at U of C have been reviewing/discussing her diagnosis because there's limited research. A clinical trial is not available since there are not enough people to be in a group. That being said, they will be treating it as they would other Large B Cell Lymphoma. The positive part is that it appears to be localized to her leg after reviewing her CAT scan and is highly treatable, if not curable. The other good part is that she is otherwise healthy and showing no other signs/symptoms.The only thing against her is her age. Basically the doctor said if someone was younger and had this diagnosis, they would have a 99% cure rate. Someone with the same diagnosis showing other signs would be given a 40-50% success rate. Dr. Cohen said she falls somewhere in the middle, around 75%. Before they can begin treatment, she had more tests--CT scan of tibia to see if there's been any changes since the last one in May, echocardiogram, and PET scan of full body. 

In July, my mom had the recommended tests and scans completed. She also had a port placed for when she starts chemotherapy. On July 21, my mom and I met with Dr. Cohen to go over the test results and treatment plan. The echocardiogram showed that she has a strong heart and should be able to tolerate the chemo well. The PET scan showed 2 other spots that Dr. Cohen considered low-level with minimal increased activity, which could indicate something or be nothing. If it is something, the chemo will take care of it. The recommended treatment will be chemotherapy every 3 weeks for 6 treatments. So that's 18 weeks or 4 1/2 months of treatment. Her first treatment will be on Thursday, July 27th and will last at least 6 hours. If she is able to tolerate this, the other treatments will only be 90 minutes. Dr. Cohen reviewed the possible side effects, but everyone reacts differently. The most important thing is that she stays HEALTHY during these 18 weeks. Her white blood cell count will significantly lower about a week after treatment and begin to go back to appropriate levels after a week. That being said, her immune system will be compromised especially during the second week after treatment. As you all know, my mom LOVES to be around people and this is going to be very difficult for her. She has to be careful with who she is around, where she goes, what she eats, and what she does. If you feel yourself getting sick or are sick, PLEASE do not come in contact with her. I'm sure she will have her phone at all times and would love a phone call instead. 

I am sharing this with my mom's family and friends but probably have overlooked some people by accident or because I didn't have their information. Please feel free to forward this site to anyone asking about her. I'm sure it's going to be a long 18 weeks, but I know she will get through this with the love and support from all of us. Remind her to take it easy and take care of herself when she's wanting to help others. Helping others is what she does best, but she just needs to pause for a bit and take care of herself at this time. I'm happy that I'm able to be there for her and take care of her like she has taken care of me so many times.

This is our motto now "Whenever things get tough, just remember that every flower that ever bloomed had to go through a lot of dirt to get there". She's just going through the dirt before she blooms again!

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