Feb 17, 2019 Latest post:
Mar 24, 2019
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Well here we are...After years of medical issues that Dad has out-maneuvered (chronic low platelet issues, horrific shingles virus which caused encephalitis and some brain damage, years later extra fluid in the brain necessitating a VP shunt, pneumonias, deficient immune system, among other fun journeys we've had along the way) we had another crisis earlier this week. Starting mid-January, he became sick with bronchitis. After not getting better and several trips to his doctor, he finally had labs drawn and his white blood cell count was very high and he was in renal failure. He was in Hutch Hospital 2/1-2/3. During that time, his WBC count was in the 60,000 range and he was found to have RSV. After his kidney function improved, he was discharged from the hospital. He followed up with his family dr on 2/6 and then was sent to an oncologist for a bone marrow biopsy on 2/7. More blood work on 2/11 showed his WBC over 70K. (WAY TOO HIGH) His bone marrow results came back and Mom, Dad, Brian and Holly met with the oncologist on 2/12. The initial diagnosis they were given was that he had CMML-2, and that he needed to start medication right away as this was a serious issue. Had he stayed in Hutch, he was supposed to receive a medication called Dacogen, then see the nephrologist (kidney specialist) in another 2 weeks on 3/1. He was given 4mo-5 years to live. That afternoon, after a flurry of phone calls to my colleagues trying to find the best choice for treatment for him, it was recommended for us to contact the Acute Leukemia Hotline at KU Med. This is quite possibly the best phone call we have ever made. Lifesaving.
On Tuesday night, 2/12, Brian and Amanda drove Mom and Dad's car up to Emporia and Jeff and I met them there. They stayed the night with me and Wednesday morning they were directly admitted to KU Med, Unit 42. They immediately met with members of the leukemia team including the oncologist Dr. Heather Male, whom they adore. She ordered a bone marrow biopsy to be performed and that was done Wednesday afternoon. His WBC continued to be dangerously high and renal function still not great. While we couldn't start chemo until the pathology from the bone marrow came back, they did start fluids and a medication called rasburicase to help protect his kidneys from damage (the medication reduced his uric acid level).
February 14, 2019. Valentine's Day...they received the news that what Dad's body is fighting is AML, not the CMML-2. The prognosis is entirely different (worse) as is the treatment regimen. He will receive Daunorubicin and Cytarabine. These are hard core chemo drugs, associated with the classic severe nausea, hair loss, mouth sores, etc. However, he was eligible to enroll in a study in which an FDA approved medication CPX-351 (a newer molecular combination of the same effective chemo drugs Daunorubicin and Cytarabine) will be given on days 1, 3 and 5. This new combination should have less side effects such as possibly less mouth sores, less hair loss and possibly even less fatigue. He will be in the hospital for at least 30-40 days from today.
After speaking to Dr. Male and the research nurse today, the plan is to start the chemotherapy on Sunday morning at 9am. It will take at least 3 weeks for his counts to come back to a safe level before he could be discharged from the hospital. Overall, hopefully around 35 days from this weekend is expected time actually inpatient at KU. Then if his blood counts are high enough he can leave the hospital and the plan at that time would be to go to a Leukemia/Lymphoma house (similar to Ronald McDonald house) nearby where they would live for a couple weeks. They will need to stay close to go back and forth for Dr appts and to have more blood work and another bone marrow biopsy done. There will be at least 2 more bone marrow biopsys done to determine what effect the chemo has had, and if he is in remission or not. If the bone marrow shows that he's in remission, and depending on other pathology results from his blood and bone marrow, it's possible he could be a candidate for a stem cell transplant. (Any stem cell transplant talk is still a ways off, but the bone marrow team will be talking to him during this hospitalization.) Should he have a poor response to the chemo, then on to plan B. Basically everything depends on his response to the CPX-351 and how he tolerates it.
Holly and Brian came up on Thursday night, and together with Mandy and Jeff (my boyfriend) we had a wonderful visit with mom and dad and really lifted their spirits. I don't think we left the hospital until 11:30pm and thankfully we weren't kicked out for some of the laughing and giggling we did in the room and hallway. This morning Holly and Brian, Jeff and myself came back to KU and were able to meet his oncologist, Dr. Male. Our minds are more at ease now. Mom is able to stay in the room with him on a pull out sofa. We all plan to stay nights so she can leave and get some respite, and make sure she continues to take care of herself too.
Any adult visitors are welcome! However, if you've had any recent infection, even a sniffle or small cough, you are not allowed to see him until you've been healthy and snifffle or cough-free for 2 weeks. :)
While he has a very rough road ahead of him, Dad made it clear and is telling everyone "I walked in here and I intend to walk out."
This is a ton of information to digest. Some friends and family want loads of details; others just want bullet points. But here it is! We appreciate all your thoughts, prayers, calls, love and support!
For those who have already asked, letters/cards could be sent to Ted Vollweider, Room 4223 University of Kansas Medical Center 3901 Rainbow Blvd Kansas City, KS 66160
or my address: Jenny Ravenscroft 15322 S. Widmer St. Olathe, KS 66062