Some days, the acts of kindness of strangers is overwhelming. Many thanks to Cheryl, a physical therapist across the country, who sent my mom a personalized Physical Therapy package in the mail after learning about the weakness and weight loss she has experienced after the last round of chemotherapy and Donor Lymphocyte Infusion.
Up until February of this year, my mom has started to gain weight, slowly returning to normal. Then we heard news of the relapse. That was when we went through three more rounds of chemotherapy, and a Donor Lymphocyte Infusion. All caused various side effects that made it harder to eat including nausea, throat constriction, mouth sores, and loss of taste. Then she had really bad swelling of the feet, which made it difficult to walk and exercise. The combination of both resulted in a greater loss in weight, bringing her down to 82lbs. In February, she had slowly climbed back up to 94lbs, which was a great accomplishment! Before cancer, she was 125lbs and very active. We will slowly get there again, especially with help from people like Cheryl!
Well, we knew this was coming, but had no idea how bad or good it would get. When my mom got her stem cell transplant last January 2014, she showed zero signs of graft vs. host disease. That was great because she didn’t have the crazy symptoms, but some doctors believe the lack of GVHD could have meant that the stem cells were not doing that much fighting. What is GVHD, you ask? It is when the new cells attack the body (the host). My uncle’s healthy white blood cells, in the process of fighting the Leukemia, also attacks the skin, the digestive tract, the mouth, and potentially other organs. Her current symptoms:
- Dry, crusty eyes. In the evenings, her eyes start getting very crusty. By the morning, it is difficult to open her eyes. We are trying Refresh Tears to help lubricate her eyes and lessen irriration
- Skin Rashes. Most of her upper body is covered in rashes. We have found fresh aloe to help with this. We have three Aloe Vera plants out front! Horray!
- Dry mouth and throat. No matter how much water she drinks, her mouth and throat feels dry. This is definitely an attack of the mouth. We have tried salt washes and coconut oil but nothing works. Today, the doctor subscribed a dexamethasone mouth wash to help with the irritation and inflammation.
We want some GVHD to happen to show that the infused cells are working (doesn’t seem very scientific, I know). We do not have any real way to show that the donor infused lymphocyte worked. All we can test for is if it does NOT work and we start seeing Leukemia cells again. So for now, to manage the symptoms in the body, we are doing the following:
- artificial tears
- dexamethasone mouth wash
- aloe on the skin
- keeping my mom busy walks, dinner parties, and excuses to make food!