1. God bless all of you who are praying, have graciously offered to help in so many ways. My home and cat and kids are taken care of and all I need focus on is my husband. I am SO SO thankful.
2. a summary of things: Ian has a cavernous malformation on the brain stem. Basically this is an angry blood vessel that looks like a raspberry and can ooze blood. This has nothing to do with his tumor; it is not cancerous. They found it during a routine scan at the NIH for his post-op from the tumor. One person there commented that she was surprised that the person whose scan she was seeing could be walking, let alone be asymptomatic, as Ian was.
This was in Feb. We were referred to neuro people in the Pittsburgh area. We saw both a radiation specialist, who would do a gamma knife procedure if called for, and a surgeon, who would remove the malformation. Neither doctor recommended treatment because he had no symptoms other than a tingling thumb on his right side, at that point.
Unfortunately it took roughly a week for things to go downhill; his hand became tingly, then his foot and leg, then his face. On Sunday morning his right side felt worse and his left thumb tingled. We went to church and his gait became much more labored. At bed time, he was unable to swallow water. We went to the ER at UPMC. We've been here ever since.
At this point, his physical symptoms are complete numbness on his right side; he's able to move his foot and leg and his smile is even, but his right arm refuses to behave. His left hand tingles but it hasn't gotten any worse. However, he can't walk and he still can't swallow. He now has a feeding tube (although we are still waiting for that procedure to be finished; frustating!) because he can't swallow. He has to use a suction thing for his saliva, which is a constant thing and that means he doesn't sleep much. He gets the hiccups often. He can talk, but it's quite squeaky and raspy and you have to interpret closely.
3. the prognosis: in short, no one has any idea. The data available doesn't present a clear decision on this thing; there are 4 options, one being a giant needle through the head to suck out the pooling blood, which would not rid us of the malformation, which could bleed again. Second is to the wait and see method; apparently the blood is apt to reabsorb and the symptoms would then subside. There is no time line available on how long that could take (meaning weeks or months or never). Third is to do the gamma knife (radiation) procedure, which is not curative, and is a controversial treatment for this situation, and fourth, surgery, which has a large chance of causing collateral damage as bad or worse than his current situation. We are stuck between two rocks and two hard places.
Right now we are on the wait and see track. From what everyone has said, it's safe to say we're going to be at the hospital for 2 weeks minimum. They monitor him, give him meds to control his blood pressure and blood sugar, keep him on a steady dose of steroids to combat swelling. The surgeon really doesn't want to operate, even though Ian would probably lean that direction, just to take SOME action.
This is a kick in the pants, seeing as we just celebrated our 5 years cancer free. Ian is understandably crabby and discouraged,and it's quite hard to see his spirits down, just as his body is failing him.
Me: it's minute to minute, day by day. I've only had one meltdown (inducing a crash cart and way too many personell) but God has given me the strength to carry on little sleep, an angry stomach, and fears I can't even put into words. I'm not putting a happy face on for anyone, but I have a ton of support both here (family) and at home. Did I mention how grateful I am?
What you can do: pray, pray, pray. We have to decide, at some point, on something. The waiting is terrible, but the decision at the end of the (indefinite) road is just as difficult. There is fear, anger, intense sadness, shock/numbness, depression and loneliness, and that's just me. The kids are mostly oblivious, but at some point they probably need to see their Daddy, in all his sickness. Pray for their hearts, and that they be protected from fear as well. Ian is crabby and discouraged; two traits that are quite unlike him. Pray for his ability to ... endure, I suppose, mentally as well as physically.
If you would like to send something, here is his address:
James (Ian) Maize Room F787
UPMC Presbyterian
200 Lothrop Street
Pittsburgh PA 15213
Please don't call the room phone; we have both our cell phones here set to vibrate so everyone can get the maximum amout of rest. I will answer phone calls when I can and reply to texts. My phone is easiest as I have a devil of a time figuring his out sometimes.
If you have any questions, I would be happy to answer them. I'm sure I'm leaving something out here, and since it's all very confusing, I wouldn't even notice an omission. (also functioning on not too much sleep).
I think the first note I wrote (that facebook ate) was better, but ... anyway. Now you're up to speed. God bless you all and thank you so much for your love and support.
