A lot has happened since our last update back in mid-September.
September 18th
Shannon had another Bone Marrow Biopsy to check for the presence of leukemia cells in her marrow. There’s was still a very small percentage of leukemic cells around 1%. Since anything less than 5% is considered “normal”, she’s technically in remission. Her las PET scan was clean too.
September 23rd thru 27th – 4th Cycle of Chemo
Shannon was in the hospital for another cycle of of chemotherapry, cycle 2B (she’s had 1A,1B, 2A, and now 2B). All went well and no issues with chemo.
We were home for the next week, doing twice a week clinic visits as usual, for cells count checks and a check-in with the nurse practitioner or doctor. This week we did Monday and then Wednesday(instead of Thursday). This was Wednesday Oct 2. After Shannon’s regular clinic visit with her oncologist, she had another visit at Methodist Bone Marrow Transplant Unit with Dr. Hill. Her labs were borderline low so she received a unit of blood and a unit of platelets. They also gave us a form for our dentist to fill out. They need our dentist to ensure there are no cavities or abscesses of any type prior to bone marrow transplant.
Friday Oct. 4th – Low Platelets
We woke up for Shannon’s dental appointment, but Shannon was feeling very week and she had petechiae on her lower extremities. We knew her platelets were low and it was already late morning, so we knew it was too late to visit the clinic. We had to to the ER at St. Luke’s Hospital in the Med Center. Her hemoglobin and platelets were low. Platelets were only 6. They decided to admit her overnight. She received a unit of blood and 2 units of platelets. Unfortunately, there were no availbel rooms on the 20th floor Oncology Unit. We had to go to the 12th floor which is just a general med/surg floor. The experience on 12th floor wasn’t a good one. They were’nt the cleanest, room seemed dirty, nurses/nurse aides didn’t follow standard aseptic technique, and people kept coming in and out of Shannon’s room without a mask. Shannon’s white blood cells were very low (as expected a week after chemo) which put her into neutropenia. This is a time when she can easily become infected from bacteria, viruses or fungi. Typically a sign is placed on the door to the hospital room to alert staff to the “Neutropenic Precautions.” We had to tell them everything to do, unlike the 20th floor where they’re use to neutropenic patients. On Saturday Oct. 5th, they discharged her home.
Sunday Oct. 6th – Sepsis/ICU
We woke up and everthing seemed normal. Shannon had a lot of energy, she did her makeup, got dressed and I think she did a TikTok LIVE. She got our youngest son to help her do some laundry. She got tired around lunchtime or shortly after and wanted to lay down. I went outside to do some chores. About 2 hours later she called me to come inside and check on her. She was starting to feel really bad. I checked her temperature and it was 101.4F. We gathered some things and headed to the ER at St. Lukes Hospital. By the time we got there, Shannon was feeling worse. It was obvious that she had an infection brewing but we didn’t know where or why. Luckily the ER wasn’t busy. We arrived, the triage nurse checked her within about 20 minutes of arrival, shortly after they got her an ER room, and within an hour of arrival they started 2 IV antibiotics. Unfortunately, her vital signs were not good. Her temperature went up to 104.3F, heart rate was in the 160’s, blood pressure was low 90/50 or so. Also, her lactate level was high, which is a sign of sepsis/septic shock. Her initial lactate level was 4.4.
Lactate levels are a key indicator of the severity of sepsis and are used to help guide treatment decisions:
- Risk of deathHigh lactate levels are associated with a higher risk of death, even in the absence of organ failure or shock. An initial lactate level of more than 4.0 mmol per L indicates a higher risk of mortality.
She stayed in the ER overnight and then they moved her to the ICU around 7am on Monday morning. They let me stay in the ICU with her the whole time. Initially they told us I would have to leave for about an hour before and an hour after shift change, but that never happened, I stayed around the clock.
The first day in ICU was a little rough. Her lactate level started to come down but her blood pressure remained low and they almost started her on pressors (IV drugs to keep blood pressure elevated.) Luckily they were able to keep the blood pressure stable with IV fluids and by giving her the blood products she needed. Her hemoglobin and platelets were low again. They also consulted ID (Infectious Disease). Dr. Sohail was her ID doctor. He discussed the blood culture results with us and then switched her antibiotics. She was already on antibiotics that cover the bacteria identified, but the one her put her on was more specific. The lab identified Strep. MItis in her blood. Strep. Mitis is a normal bacteria that we have in our mouth. It usually doesn’t cause any issues but if you’re in a neutropenic state, it can get into the blood stream and cause bacteremia. From there, it can turn into full blown sepsis and/or septic shock. That was Shannon’s case. They also did a CT scan of her chest and an echocardiogram to rule out endocarditis(infection in the heart).
Shannon’s bacteremia was improving but she also developed a bit of pneumonia while in the ICU. She required a little bit of oxygen thru a nasal cannula. After a few days, they moved her to the 20th floor Oncology. They were going to send her to another floor but we complained about how dirty some of the other floors are and the nurse/charge nurse advocated for her to go to 20 Tower. She was improving daily but still spiking fevers up to 103F about every 8 hours. The ID doctor added a 2nd antibiotic to her regimen and then the fevers finally stopped. She was fever-free for about 3 days and they decided she could go home. On Tuesday Oct. 15th, they gave her a final unit of blood and platelets to hold her over until our next clinic appointment and discharged her home around 930pm.
September 16th to present
Shannon continued to see her oncology clinic 2x a week for cell count checks. She finally came out of neutropenia and blood counts are all good. Shannon had another Bone Marrow Biopsy on Oct. 23rd, this time at Methodist Hospital (where the bone marrow transplant will be done). We are going to discuss the results from that biopsy on Mon. 27th. Also, Shannon has more chemotherapy scheduled this coming week but as outpatient at the clinic. It’s a different type of chemo to help put her into a deeper remission. They need her leukemic cells to be undetectable prior to bone marrow transplant. Methodist is also still doing donor workup on our son and possibly our daughter too. If everything goes as planned, Shannon might be admitted for Bone Marrow Transplant towards the end of November.