In my last post, I really didn't explain the difference between MDS Myelodysplastic Syndrom and AML Acute Myeloid Leukemia in regards to Todd's diagnosis. Todd has MDS with secondary AML. Because his blast cells in the bone marrow have increased to more than 20%, this constitutes the secondary diagnosis of AML. (See references and link to the National Cancer Institute).
The CD56 genetic marker, known as NCAM1, is an indicator that the cancer could enter the Central Nervous System (CNS). This is why they will be performing a Lumbar Puncture (LP) tomorrow. The National Cancer Institute (see references) explains this procedure and provides the following diagram to show how it is performed:
Image: National Cancer Institute Website. 2016.
They collect a sample of the cerebrospinal fluid (CSF) and test it for leukemia cells to see if any has penetrated the brain and spinal fluid. As a preventative measure, Todd's doctors will be injecting "intrathecal" chemotherapy (either methotrexate or cytarabine) into the spinal fluid to treat any cancer cells right away. Plus, it is best they replace what fluid is being withdrawn to help avoid a bad spinal headache. The doctors will only perform the LP if his platelets are ~30,000. They will be transfusing him early in the morning and then take another platelet count to see if they are high enough. They may be able to give him another unit just prior to the procedure if necessary.
The rest of Todd's chemotherapy DAC + CIA for 10 days has been going well as it can be. He has developed one mouth sore and rinses his mouth with a mixture of baking soda and salt 4x a day. Today, October 11, 2016, he spiked a fever of 101.8 which caused quite a commotion in the room. They were able to give him Tylenol to lower the fever, but the barrage of tests to see if it was just a neutropenic fever or if it was the start of an infection went full steam: chest x-rays (which looked good), blood cultures, intravenous antibiotics, and a pick-line installed in his arm to use in case of a port infection. A neutropenic fever happens when the white counts and ANCs (neutrophils) become so low. Sometimes they indicate an infection, other times the cause is unknown.
Todd has been alternating between needing blood transfusions and/or platelets about every day or every other day. Today's CBC: Whites: 0.5; Hemoglobin 8.9; Platelets 13,000; ANCs .40 (<.50 indicates neutropenia); and blasts in the blood stream yesterday were at 9%. He had transfusions of blood and platelets today. Unfortunately, these low counts are what the doctors want to see. This means that the chemotherapy is working. Although the chemo kills the cancerous cells, it also kills the good too.
We still don't know if Todd will be discharged on Friday and put into the "Fast track" program of returning to the hospital every other day on an out-patient basis for CBCs, transfusions, clinical appointments, etc. We would also have to stay within 10 minutes of the hospital in case Todd would run a fever or have some other complication like bleeding. For the first 12 days we are going to have to fall upon the mercy of the social work department who can assist us with a hotel stay nearby. After that, we are on our own in finding and paying for a place to stay. I have already called numerous organizations to find housing, especially discounted housing, from the Joe's House List given to us by our social worker. Most of these places have a 2-3 month waiting list! Which might be of help post-transplant, but not these first 30 + days we have to wait until transplant admission.
Many of you have asked how you can help. My top priorities at this time is: first, short-term lodging in and around the hospital. Second, would be money for eating out. If we stay in a hotel, we would not likely be able to cook or store food for meals. Thirdly, transportation will have to be determined. Some local hotels offer an inexpensive shuttle; if not we will have to use Uber, a taxi, or public transport. Todd has a generous cousin who lives between Galveston and Houston who may be able to lend us a car! This will be useful after transplant, but I'm not sure we would have a place to park it at an urban hotel and parking at the hospital is $14 a day. It is hard to say which would cost more.
Visa gift cards or restaurant food cards, would be helpful. They will have to be sent to our home where my mom could forward them to us, once we know where we will be staying. Thanks for your prayers and support. I'll update when possible. If you have access to Facebook, I update the "Praying for Todd Cade" Facebook Page a little more often. https://www.facebook.com/toddsMDS/
References:
PDQ® Adult Treatment Editorial Board. PDQ Adult Acute Myeloid Leukemia Treatment. Bethesda, MD: National Cancer Institute. Updated 07/28/2016. Retrieved from: http://www.cancer.gov/types/leukemia/patient/adult-aml-treatment-pdq. Accessed 10/11/2016[PMID: 26389377]
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