Long time since last update… Back in January, Shannon finally went home from the hospital after they figured out what was causing her pneumonia. I can’t remember the name of the bacteria, but it’s something that’s part of our normal respiratory bacteria. In her case, it caused an infection because she was immunocompromised. They kept her on the correct antibiotics for a bit longer and she slowly got rid of the pneumonia and cough.

She had a Bone Marrow Biopsy at the 30 day mark after transplant. The biopsy showed 0% abnormal cells. No cancer detected.

She had to continue following up in the BMT (Bone Marrow Transplant) clinic about twice a week for several weeks. Her blood counts remained very strong, and they said she had 100% chimerism. This means that all of her blood cells being produced are from the donor. Her blood type will change to the donor’s also. She didn’t experience any further GVHD, Graft Vs Host Disease. This is where the donor cells attack Shannon’s cells, seeing them as “foreign.” They kept her on a drug that specifically prevents this from happening. She continued a lot of sleeping/resting thru February and March. Her birthday was in the beginning of March. She got tickets to see Andrea Bocelli here in Houston (June 2025). She wan’t in any shape to see a concert in March but I was hopeful she would be by June.

March 23rd marked 100 days since her transplant and they needed to repeat another bone marrow biopsy. The lab report showed no abnormal cells and that she was still cancer free. However, a few days later, they uploaded a new lab report into her chart that show a “corrected” report. This report showed a very small amount of leukemic cells in her marrow. It showed 0.013% leukemic cells. This is a very tiny amount and the doctors were not sure how the lab made a mistake on the first report. They had never seen that happen before. They also were not sure if this small amount of abnormal cells were leftover from before the transplant and maybe were not seen on the 30 day biopsy. The amount is very low, almost at the lower limit of what’s detectable.

They said that the new donor cells could locate and kill this small amount of leukemia (GVL – Graft Vs. Leukemia) which is the whole point of the transplant. They said that could take some time to see if works the way they hope it to, but they didn’t want to take a chance due to the aggressive nature of this type of leukemia. They decided to treat her with a lower dose chemotherapy that is injectable (subcutaneous injection) for 5 days in a row once a month for one year. Also, she takes another drug to fight the leukemia that comes in a pill form. This combination is used for AML(Acuter Myeloid Leukemia) patients as maintenance, but has also been used to treat MRD (Minimal Residual Disease) like Shannon has.

In addition to the low dose chemo, they also weaned her off of the medication that prevents GVHD since she hasn’t had any symptoms of GVHD. This can help her new immune system fully function to help fight the little bit of leukemia that’s left.

She started her first round of the new chemo in April. She has to visit the BMT infusion clinic 5 days in a row for 1 week per month. They do her labs, and then order the drug from pharmacy. We have to wait about 1 hour because they custom mix the drug for injection just before she needs it. After she gets her injections (they divide the dose into 2 syringes) and we meet wither her doctor to discuss lab results and such, they let her go home. Although this chemo is lower dose, it still drops her WBC’s (White Blood Cells) and Platelets. She hasn’t needed any platelet infusions nor red blood cells. The counts drop a little but not as much as with the higher dose chemos. The main cell type affected is her WBC’s. She tends to go Neutropenic (Absolute Neutrophil Count less than 1,000) for about 5 days or so about 17 days after she starts each round. We are careful in general with her but we have to be extra careful during the neutropenic phase. Besides keeping her away from a lot of people. public places, etc,.. we also have to be cautious of her diet. We have to soak anything that’s raw in vinegar, like lettuce, blueberries, etc. She can’t eat raw nuts and all meats have to be cooked well done. There’s a lot of little things we have to think about on a daily basis.

Shannon has started experiencing some GVHD symptoms over the past month or so. She’s developed rashes on her chest, back , hands and sores inside her mouth which make it hard for her to eat. She’s lost quite a bit of weight over the past couple of months. They put her back on the drug that helps control it and also added in a steroid, but she was still experiencing a lot of discomfort and pain. They dediced to order a new drug that’s meant to treat GVHD when 2 other drugs have failed. This drug is expensive at about $350-700 per day for 1 pill. Luckily we have good insurance and it got approved with $0 copay for us. She just started it this past week but it can take up to a month to start working. This GVHD is causing issues at the moment but having GVHD is known to help patients remain in remission for longer and keep the leukemia from returning. If the donor cells are attacking Shannon’s cells, then theyre attacking the leukemia as well. There’s just a balance that must be acheived. They want the donor cells to attack but also have to keep Shannon comfortable. We’ll see if this new drug can help control it a bit.

In addition to the low dose chemo to treat the MRD, we also started Shannon on multiple vitamins and supplements that are known to have anti-cancer properties. She also has started doing hypnosis with a clinical hypnotist who has experience with cancer patients.

Despite dealing with this MRD leukemia, GVHD, going to the clinic every week and doing chemo injections 5 days a month…. She’s doing pretty good considering the circumstances. She’s more awake and active during the day. She’s even cooking and cleaning on the days that she has more energy. Every day is different though. She also made it to her concert to see Andrea Bocelli. Luckily it was when her cell counts were normal. She just finished her 3rd round of chemo and the next big event will be another bone marrow biopsy in a week or so. Hopefully it shows 0% abnormal cells.