Fortunately, Bill does have health insurance! Even with that, he will be facing costs for deductibles, out-of-pocket expenses, and through his recovery, his normal living expenses.
Neither Jeanne or Bill would think to ask for help or know where to start right now, as they only learned of the tumor a very short time ago. All their energies right now are focused on pre-operational doctor visits, lab tests, and enjoying life as they know it for the moment. As they should! His surgery is currently scheduled for December 23, 2013.
Let's help Bill prepare for this potentially rough patch so he can continue to shine his happy-go-lucky style in all our lives!!!
Update December 31, 2013 from Jeanne:
Bill is doing well at home since his discharge from johns Hopkins Hospital the day after Christmas. It was quite the uncomfortable ride for him with an incision about a foot long on the side of his head, bouncing around. Sue and I made him chicken noodle soup which we cooked on between cleaning Bills drain, getting him hot/cold packs, refilling his ice waters etc. We were all three pretty worn out after three nights in the hospital room with Bill. Other family brought turkey and beef soups as well as some potato soup. With just having immediate family over to welcome us home, we found energy amiss. Bill especially said, "Man i can't take everyone up down all around and the noise. Lets hold off on visitors another day." Sorry if you have been missing him and wondering how he is. He is doing very well, all things considered. I guess it just takes some time.
He and I drove to Baltimore for a follow-up with his main surgeon today. Bill got a bit of a stern word from the doctor about how important it is for him to move his head around. You see, Bill has been battling an incredible amount of pain that surpasses the usual patient in this situation. Because of the pain, he has a hard time getting his head to cooperate with physical therapy. The doctor said if he doesn't get it under control and do the exercises then he will lose range of motion.
After the swelling continues to go down and the doctors are able to rule it out, we will better be able to tell what difficulties he will be left with to work on. One thing the docs are pretty sure of already is the right side of his tongue paresis...or paralyzed...or his tongue notably deviates to the right side for lack of the nerve to move it. This makes it hard for him to eat among other things.
So far, we have maintained his weight since leaving the hospital. He is having pains in his throat and many other places, so he gets tired swallowing and has to try a few swallows here and there, frequently. We are also waiting for bowels to move as the anesthesia and pain meds are known for severe constipation. Not that you wanted to hear about that. LOL Overall, he is doing well and the nerves going nuts about the pain are busy telling his body to heal. Meanwhile, Bill has been referred to a pain specialist. Check back for his next update and thank you for your incredible prayers and support.
Update December 1, 2013 from Bill's mother:
This email is to inform you, and provide information, about Billy's health problem. This way everyone gets the same information and because it is a little complicated, you won't have to try to explain it to others based on a phone call. I have also attached the original x-ray so you can see what it looks like, sort of and where it is. This is how it began:
A few weeks ago, Billy was having problems with a cracked molar that needed to be extracted by an oral surgeon. An x-ray revealed an unusual looking mass prompting the doctor to retake the x-ray, thinking that perhaps the machine had a glitch. After retaking the x-ray, the doctor recommended that Billy get a CT scan, which Billy did.
An ear, nose, and throat doctor examined the CT scan, identified the tumor, and recommended that Billy see highly skilled surgeon, typically found at teaching universities such as UVA.*
We met with Dr. Califano at Johns Hopkins and Billy was diagnosed with a tumor the size of two golf balls. It is called a Vagal Schwannoma. This type of tumor is exceptionally rare and it's connected to the 11th nerve. It is quite calcified which means among other things, it's been there and growing for several years. Billy's body has made adjustments, such as: the carotid artery and jugular vein have moved; one of his two vocal chords no longer works; his tongue has "shriveled" a little on one side; his lower jaw has moved to the left (causing symptoms similar to TMJ, or severe headaches); and Billy noticed a sudden weakness, like his arm dropping during work.
Therefore, the tumor has to be removed. In order to get that accomplished, another surgeon specializing in ear surgery will work with Dr. Califano. That surgeon is John P. Carey, M.D., Professor, Otolaryngology-Head and Neck Surgery, and Chief, Division of Otology, Neurotology, and Skull Base Surgery at Johns Hopkins. What we have been told is that the surgery will take about 11 hours, with both surgeons working at the same time, and "meeting in the middle." It's a very serious surgery that can potentially lead to life altering, long term health consequences. The problem is that the tumor is located in a sensitive area that controls such nerves as facial, shoulder, and arm. Surgery is scheduled for 23 December.
What does all this mean?
This is what we have been told by Drs. Califano and Carey:
â—Billy should expect to be in the hospital for possibly one week, more if there are any complications.
â—Plan to be out of work for 8 weeks, or more.
â—The jaw will be unhinged for surgery and a permanent plate inserted to keep the jaw together.
â—Plan for intensive physical therapy for: relearning to swallow, and for shoulder, and arm strengthening.
â—Possibility of slackening of the facial muscles, similar to stroke victims.
â—A platinum apparatus located in the eye that will assist in forcing the eyelid to close in order to keep the eye moist.
â—A future "fix" inside the jaw/cheek area that will prevent the look of facial slackening.
â—A future "fix" located at the side of the eye in the case of facial slacking, giving the eye a more normal appearance.
â—Total loss of hearing in the ear.
â—In the case of hearing loss, a mechanism inserted beneath the skin, behind his ear that connects to a hearing aid that is designed to enable hearing in that ear another future "fix."
â—A stomach feeding tube due to difficulty swallowing.
â—Drains at the incision sites.
â—Billy's employer had promised to hold his job for him, but that was before he knew Billy would be out for up to two months, possibly more. (His eye has to be completely protected from any foreign body, and protect the nerves affecting his shoulder and arm.
â—Billy has insurance, and hopefully he will not lose his job. Otherwise, he would apply for Cobra at a significantly higher premium rate.
â—Billy is currently going to night school, with any luck he won't lose too much time, or in any way jeopardize what he's accomplished so far.
â—A lot of out-of-pocket expenses, i.e., co-pays, patient costs of CT and MRI scans, etc., hospitalization, surgeon fees, and all other expenses that arise with surgery. Dan's surgeries have astronomical costs connected to what insurance will not pay, or what is left over from what they will pay"”which is a lot.** According to Dr. Carey, there is no assistance available for Billy to apply for due to timing, regulations, and whatever else he mentioned. (additional note from Jeanne - state assistance cannot be applied for until following surgery and evaluation, and payouts would not be available to Bill until a MINIMUM of 90 days AFTER application with evaluation.)
â—Billy is handling this as best he can. It's horrible. Jeanne, his girlfriend, and as he puts it, "the love of his life" is a tremendous help. She is organized, deeply caring, and I could not ask for a better person for him. Jeanne works in tax accounting, so she's been very good at tracking the numbers, researching, and caring for Billy. However, this affects her deeply as well. Plus, her hours were cut back which hasn't helped.
â—Billy is so afraid of losing his house, and everything he's worked so hard for, on top of everything else.
So, what are we going to do? With help from Jeanne, and others:
â—I'm trying to put together a fundraiser at the barn that will "feature" Billy's great BBQ (mine, too). Along with a silent auction featuring some lovely items from my house, like a horse blanket storage bag I had not used a few Christmas gifts that I had bought months ago, a few T-shirts I found from back when I worked at Equestrian Collections. Let me know if you have an interest in any of these wonderful items! The blanket bag is large, waterproof, and quite nice"”great for campers, too!
â—I'm planning a yard sale (for the first time) to raise funds
â—I'm planning to contact company owners/Reps. that I've dealt with in the past to offer IT services in exchange for donations.**
â—Anything else I can think of to raise funds. If you have any ideas, please pass it along.
â—Any assistance you can provide is greatly appreciated.
*Luckily, Richard had recommended Dr. Califano of Johns Hopkins, who operated on Joi a number of years ago. He has been Dan's surgeon for thyroid cancer and has removed six tumors over the past six years. Dr. Califano is a nationally recognized surgeon, ranked top in his field. We like him very much, for not only his abilities, but also his nature, which is honest, yet gentle.
**All donations will be put into a separate account for Billy. All money used will be accounted for, and the whole process will be completely transparent. We do not want anyone to think or find that donations have been used for anything other than its intended use. Should anyone desire to review the account will be welcome to.
Thanks so much for reading/listening, and please pray for Billy.
With much love,
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