This past Monday marks exactly 6 months from being diagnosed. Today, I received some unfortunate news. I got a call with the results of my bone marrow biopsy from last Friday saying the minor residual leukemia was still found in my bone marrow. However, the amount has decreased since my initial biopsy, which was before starting the clinical trial chemotherapy. Along with healing from my bone marrow biopsy, I started having a few unusual symptoms that began last Thursday. These symptoms included pins and needles/tingles constantly all over my skin from the waist up, my headaches returned, and a sharp, shock-like pain in my pinky fingers. I sent a note to my doctors, and they were immediately concerned, advising me to go to the ER for an evaluation and a CT scan. I spent a long day with Jenn in the ER on Monday, and thankfully all tests came back positive. My team stated the blood clots in my brain were stable and were the same since my last scan. I was discharged that evening. 

On Tuesday, I had an ECHO test and had a consultation with radiation. This scheduled meeting was a surprise to both me and Jenn, as we were told I would only have chemo in the beginning of my journey. However, I know my treatment plan continues to change based on my progress each week. In this meeting, I was told I would begin prep and measurements this week for total body radiation from head to toe. Once admitted to the hospital for transplant in May, I will complete an intense chemo regimen then the total body radiation. We do not have an official transplant date yet. I will have 2 days of chemo and 3 days of radiation beforehand. Each day of radiation consists of two hour long sessions twice daily. This radiation will essentially “burn the bone marrow” from within me to start fresh and give me a better chance of staying in remission long term. I was not prepared mentally for this meeting. Hearing the intensity of this treatment plan, along with the short and long term side effects that can happen when undergoing radiation was overwhelming. Long term effects give me a 1-2% chance of having children on my own, a higher risk for other cancers to return in 20-40 years, especially skin cancer, and a higher risk for cataracts and other risks to my thyroid. It was a lot to take in, and I left the office distraught and in tears thinking about my future.

My doctors are still concerned with my current symptoms going into transplant next month and scheduled me for 2 different types of MRIs today and tomorrow to hopefully find some answers. On top of that… They scheduled a 9th lumbar puncture to test my cerebrospinal fluid this Friday to rule out the possibility of an infection causing my symptoms. They may also administer chemo during this procedure as well. This was also difficult news, as I had already celebrated with my Mayo team after completing what we thought was my 8th and final lumbar puncture a few weeks ago. Within the last few hours, I was told that next steps will include me being admitted this Friday-Monday to be administered 3 days of chemo before starting four more weeks of the clinical trial drug. This will hopefully get me into full remission before my transplant. 

This past week has been one of the hardest both mentally and physically, especially after receiving a large amount of difficult news in the past 48 hours. I trust my doctors and know that every step of this process is in God’s Will. Thank you everyone for the outpouring of love and support getting me through these tough times. I will forever be grateful. ❤️