First of all he told me the results of the spinal tap found that there was no leukemia cells in the spinal fluid! HALLELUJAH!!! At first we were told by Dr. Medvedova that they did find it in the spinal fluid and around the brain but then Dr. Dao came in and said don't get ahead of ourselves we don't know till the spinal tap is read; so this is a true blessing! But.... There was a thin layer of unknown cells or fluid surrounding her brain that they do not know what it is. So next Monday they are going to install an Ommya Reservoir so that they can administer chemo through it just like her port-a-cath in her chest. This way they do not have to continuously do painful, anxiety filled spinal taps. YAH! :D.
This procedure at first glance looks very scary but there are two things we will resolve in this one process and that is eliminate constant risk of infection through spinal taps and get a sample of the mystery meat in her knoggin. (so to speak). Regardless of what they find in that fluid, they would still treat the spinal fluid and central nervous system with chemo as prevention as leukemia likes to hid everywhere. She already had her first does during the original spinal tap and bone marrow aspiration so she's already had at least one dose of protection.
We also talked about her overall status at day 4/5 since her first dose of chemo and 6th day of prednisone and he feels she is doing very well and happy with her progress. Not only has her swelling almost completely been eliminated, her breathing is better and her chest tumor has also gone down significantly. In fact he said that if she continues on this path and the stuff on the brain is not leukemia cells, she may be able to go home in as early as 2 weeks!!!
I am ecstatic over everything he was telling me and I am blown away with her progress. We have been truly blessed so far and I owe it all to the people taking their time and praying or just sending positive energy her way. I really feel there is no other explanation for her condition to almost completely diminish the way it has. He has reassured me that within the next week or 2 though there could be some rough road ahead and fatigue but that so far her blood counts look good, WBC doing good, platelets etc.. The only thing they are having to do now is give her a long acting insulin cause her blood sugar levels have been reaching the mid 200's but as a temporary issue; it will not be a problem long term if things stay on this path. She also has to have a painful blood thinner shot for 7 days to avoid clots with the peg asparaginase.
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| Our ode to cancer! |
By August 5th she will be off prednisone, hopefully in remission and on her way home. I cannot thank everyone again for their support! She doesn't even feel like herself cause she feels so much better. If all goes well the rest of the week we may leave Saturday morning to give her and Ian more time together as he will have to leave on Sunday. I'm sure they have enjoyed having a whole week to themselves after being ripped apart with only an hour to spend together before going to OHSU but mom and dad are dying to see their baby girl!!! <3
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