Lynn is my daughter's Case Manager when she was diagnosed with a recurrence of Langerhans Cell Histiocytosis. From the beginning, Lynn was responsive and attentive to my sometimes irrational and frantic calls. She treated me with respect and dignity, and she was never dismissive no matter what my question or request was. For example, my daughter had a strange symptom that couldn't be explained by her diagnosis and the docs weren't sure how it was related either. Because of Lynn's experience with LCH she remembered that another LCH patient had the same symptom. The fact that she acknowledged her strange symptom and remembered that another LCH patient had it too was so reassuring. Two more specific examples of Lynn's awesomeness are detailed below.
My daughter was very traumatized every time her port was accessed. She screamed terrible things every time and it was so upsetting for her, our family, and the other patients in the clinic and staff. The entire week her port was accessed she was depressed and virtually immobilized. We knew she felt sick from chemo, but we also knew her port being accessed was contributing to her depression and anxiety. She was referred to see the doctor for biofeedback therapy. Every month Lynn would work with the doctor, me, and the rest of the hem/onc team to come up with a plan to make the port access easier for her. We did this for months; unfortunately, it only became harder for my daughter. Finally, Lynn and I started to discuss how her treatment was administered, and we came upon the possibility of my daughter receiving subcutaneous injections instead of accessing her port monthly. Lynn said, "I don't know if it's possible, but let me find out." We found out in just a few days that she could in fact get subcutaneous injections instead of accessing her port. Lynn described that as she went through the approval process that this was a very atypical request and she received more than a couple of looks from the team as she advocated for it. My daughter received the first sub-q injection of her treatments. She was a different kid!! Everyone at home, school and in clinic noticed the change. She was no longer depressed, scared and mad; she was happy, energetic and excited!
The last four months of her treatment was a game changer, and I know this wouldn't have happened without Lynn going the extra mile, asking difficult questions and advocating for my daughter. Lynn only met my daughter twice, but she was an integral part of giving her some control in her treatment and improving the emotional wellbeing of my daughter and our family.