Midweek Update
Still no more info on the spinal fluid. The germinoma markers that were drawn on the spinal fluid are negative, however one test did not get run (yeah , I know). She is out of the typical age range for germinomas but the location and appearance are consistent with this. 70-80% of these are benign. Statistically, a low grade astrocytoma is also a fair possibility.
If the biopsy is negative for any malignancy then the issue of how to manage this slow growing mass in a tight little space where the "server is housed" will be bounced around a myriad of possibilities. Fortunately the technology has had a boom in the past five years, with good experience in highly precise/pinpoint radioactive therapies (gamma knife, K-knife, radial knife, cobalt patch). Atlanta has stayed on the growing edge of this technology (gamma knife, radial knife and patch at Piedmont; radial knife, patch at Emory; the k-knife is similar to the radial knife . . . not as familiar with that -- yet).
We have a follow-up appointment with Dr Jeff Olson on Friday at Emory. She will get her Frankenstein markers (staples) out then, as well as get a sense of the next direction.
She continues to improve on some level daily. Her vision is abnormal, which is frustrating as it is difficult for her to read/write/text/email etc. However, she seems to manage to read the BLOG and cards, which make her beam, so something is working! (Hmmmm, is this like "selective hearing"?) She will be seeing the neuroophthalmologist (vision-related neurologist) tomorrow afternoon.
We are continuing to get alternate/second opinions re: the best approach, surgeon, facility and game plan. This will include the timing and location of the biopsy. Chances are it will be here, either Emory or Piedmont, or Duke at their Brain Tumor Clinic. Obviously, closer would be easier, all things equal.
As the time gets closer, the nerves get a bit more raw. When the glimpses of reality starkly awaken us, panic stares us in the face. All your love, concern, energy, and stillness keep us grounded. Mary is comforted so much by all of you, IT MAKES A TREMENDOUS IMPACT. Doll (Mary's sister) and I are extremely grateful as well as dependent on all the help and support. This would be even more traumatic without you.
Thank you so much, M & KJ
posted by Boo @ 11:13 AM
7 Comments:
Thank you so much for keeping this blog updated for us. It makes me feel less afraid to know more about what is happening and to see the plan being developed. I am glad so much research is going into this so that Mary has the best chance possible for a good outcome. I told my KJ recently that Mary is so blessed to have you, Kimball, at all times, of course, but especially as she faces this challenge before her. She rests in the knowledge, as we all do, that whatever is best for her will be done.
I love you for taking good care of me these past years as I face my own health issues, but especially for the loving care you give to Mary who has brought such joy and light into my life. I know she has been a dazzling glow in yours, too! You are both lucky, indeed, to have each other.
Know that my love surrounds you both every day.x0x0x
This is my first "visit" to your blog. It's terrific!! You're both gorgeous!! If I'm gonna have an astrocytoma, it's gonna be a "high grade." Please know our thoughts, prayers & warmest wishes are with you both. My "health issues" are more complex, since you're both much younger than I, but I'm coping with help from my one-&-only-true-love your brother. What a blessing he is, as are you both!!!
Peace & love, Houston
P.S., I got some of the most beautiful germinomas for my birthday from an admiring friend! Wish y'all could have been here for the celebrations. Peace & love, Houston
Sweet one, thanks for including me in your circle of friends. I am keeping up on your progress through the blog. This is my first experience with blogs, so I am learning something about them as you have. Know that my positive thoughts and immense creative energies are being sent your way. It takes a great deal to get us Virgos down...keep the faith and know that all is well. You are truly a remarkable woman with infinite spirit. This is your time; your time to be open and accept the love that flows to you, for you have always been the giver. Receive the love and you are already healed. Please let me know when I can be there for either of you.
Sibby
I, too, am grateful you are so specific about what is going on. I know it takes a lot of energy to share this with us all, particularly when so much energy is going toward researching the problem and supporting each other. But the info is so valuable to all os us who care about you both. We can be close to you both even tho so far away. Thanks for taking the time to update the blog!!!!
Love,
Link
Greetings from one of Mary's Angels from San Francisco. Kimball - although we haven't met, your messages are wonderfully informative and keep all of us out-of-towners up to speed. Thank you for making us part of your world - it is a privilege to be able to repay Mary for the tons of healing energy she has shared with us all. Mary girl: remember, 3 snaps and a toss of that blonde hair and you can conquer ANYTHING! lots of love,
lynnie
Hey Mary:
Holly and I will continue to keep you (and your Frankenstein staples) in our thoughts and prayers. We are privileged to be able to return the healing energies you both so freely give to us.
Daily I visualize a tumor-free Mary and a smiling Mary and Kimball running with the dogs on a beautiful beach somewhere. Will continue to picture joyful outcomes, and won't accept anything less!!
Keep believing!!
Love,
Dr. Barbara
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