from...
Very Sad News
I'm so saddened to hear the news that our little Miracle Baby, Nathan Andaya, is losing the battle to his AVM. He has been a courageous little fighter, and so have his parents. When I logged onto the message board this morning, I read the following post from Jaimee-Nathan Andaya..the Lord will be calling him home
i don't even know how to start this..
first off, I would like to say thank you to everyone here on this forum who has been there for us throughout this whole battle..your encouraging words, prayers and kindness mean so much to us..
unfortunately Nathan will not be making it..initially one of the two main veins clotted..and now the second one had clotted off (due to high pressures of the AVM)..unfortunately there is nothing the doctors can do..right now Nathan's brain continues to swell due to the increasing pressure..he is on morphine and tylenol to relieve any kind of pain..we have been placed in a private room so that family members and friends can come to say goodbye..we were given an estimate of 2-3 days starting from today (dec 6th). The last CT scan revealed that Nathan had already suffered from strokes and additional severe brain injuries..right now he is currently sleeping..he is still being monitored but we decided to take off his feeding tube..
thank you everyone for being such a blessing to us..please pray for Tj & I...God bless
You can read Nathan's story on his website http://www.nathanj125.com/ and his mom's blog postings at AVM Survivors Network
Please keep them in your thoughts and prayers.
-----------------------------------
from...
Surgery, Staged Radiation, Embolization, or Nothing. We’ve made our decision. Here’s the plan.
We have finally made a decision as to how to approach this bad boy in my brain. For the past month or so I have been sharing in this blog what has been on my mind…literally and figuratively.
If nothing else I thought it would be a good way for me to have a permanent journal of my thoughts and feelings as my family (because of me) took an unexpected turn down an unfamiliar road that has “frowning Providence” written all over it. Smiling Providences are those obviously good things in our lives for which we happily give God the glory. Frowning Providences are the actions of God that often make us frown, hurt, confuse us… the kinds of things that we would never choose given a choice…but which nevertheless serve God’s larger purposes of being glorified.
I believe with every fiber of my being that God is comprehensively sovereign over every molecule of this universe. Were there even one rogue atom or quark then God would be limited…just like us. Ever since October 23, 2008 when a seizure graciously revealed the peach sized AVM in my left frontal lobe we have been seeking God and consulting with experts in the fields of neurology and neurosurgery. We have heard lots of new words, done quite a bit of research, and been earnestly inquiring of God as to what we should do with the knowledge before us.
Before I tell you what we have decided let me just say that modern technologies present difficult decisions that wouldn’t have been possible 30 years ago. Before MRI’s and CT’s people who had seizures because of AVM’s never would have known a thing about it. Surgery or radiation or embolization would not have been possible for it was not possible even to know they were present. Not so today.
What follows are the courses of action we have ruled out, the one we have chosen, and why:
1. Nothing. I could do nothing and live with the ethereal “61% probability” of having a cerebral hemmorhage at some point in my life and the ensuing brain damage (or possibly death) that would result. Because of my age none of the doctors we have consulted seem to think this is the best course of action. As one ages the blood vessels weaken thus increasing the possibility of a bleed. This AVM acted up for some reason now. Makes me think it probably will again. Because of other decent options doing nothing is not an option we think is best for us.
2. Staged Radiation. The gamma knife procedure is a non-invasive treatment over time where radioactive cobalt is directed at one part of the AVM during one treatment and another part of the AVM on another treatment. The gamma knife is the method of choice for small AVM’s without question. But for larger ones it is not so effective. This “staged radiation” procedure is still very new and largely untested. I’m not interested in advancing scientific knowledge with a procedure that is largely untested…especially when preliminary results are not very promising. It would take roughly four years or so to even know if it was working and it has about a 40% chance of completely obliterating the AVM. It is a safe method, with only a 5% likelihood of a long term neurological problem from the procedure. But, it also weakens the blood vessels, thus increasing the probability of a brain bleed during those years one is waiting to see if it has worked. No thanks.
3. Embolization. This is where an angiogram is performed and a catheter is inserted through the femural artery up into the brain and glues or plastics are stuffed into the bogus arteries in the AVM to stop the blood flowing through them. This by itself is sufficient for effectively treating small AVM’s and has the least amount of risk. I would love to do this alone. Unfortunately, there’s no way embolization would work on this big boy. Too many arteries and vessels.
4. Surgery. The crainiotomy is where a portion of the skull is removed and the surgeon physically removes the AVM. In my case he would be removing a mass the size of a peach. It is a surgery that normally takes 5-6 hours, with a couple of days in intensive care, and another five days in the hospital. The successful surgical removal of an AVM makes a bunch of people happy. The mostly successful surgical removal of an AVM decreases the collective happiness…on down the line. As I have written earlier this procedure carries with it a 15% probability of debilitating life long neurological deficits or worse. It’s definitely not a no-brainer.
However, after much prayer…by us and by hundreds and thousands of you, we have have made our decision to proceed with the full surgery. We have discussed it as a family, particularly with our 14 and 16 year old sons. We have talked openly about all the possible outcomes that we can imagine and have decided together to move ahead. If my sons had not been comfortable with this course of action I would not be proceeding. That’s how important it is to me that we are in this together. We made the decision together, and we will live with the outcome together, entrusting ourselves into the hands of Almighty God. We don’t ultimately trust in statistics, probability charts, or even the most skilled hands on the planet. Our trust is in the name of the Lord our God. Psalm 20:7 says “Some trust in chariots and some in horses, but we trust in the name of the LORD our God.” This does not guarantee the outcome we desire, for God is not beholden to any man. But it does mean that we are willing to accept whatever outcome ensues.
It’s weird territory to have to be making such decisions…decisions I couldn’t have even imagined 50 days ago. But such is life in a fallen world.
Here’s the plan as it now stands: We are scheduled to be in Rochester beginning the week of February 9th. Monday the ninth I would undergo a physical. Tuesday or Wednesday I would undergo an embolization treatment to block off some of the larger arteries and vessels in the AVM and reduce the risk of surgery. Then, on Thursday Feb. 12th Dr. Meyer would perform the surgery. I normally take Fridays off so this is a good time for the surgery. I should be good for the weekend [a joke for the humor impaired].
If all goes well I should be able to come home by about February 19th and work on doing whatever is necessary to get life going on as it was before. It would great to get back to work in March sometime and also resume preaching by the end of March. Goals are good!
Well, that’s all for now my friends. Thought you would be interested in knowing our plans. Thank you for your continued prayers. Karla thinks I’m going to chicken out!
-------------------------------
Me... I wish I would have had my blog back when I was diagnosed. If for no other reason than to spout my disbelief about how bad it could be. I think that it would be funny... now.
Anyway, I feel really tired today. Will probably take a nap.
I just took one.... but I:ll probably take another.
oh well here buy something... please.
See ya!
No comments:
Post a Comment