March 21, 2011 was the first day of Keith's extended stay at Swedish Hospital in Seattle as he was diagnosed with Wegener's and underwent the beginning of what would be a long succession of treatments. On this day, he was down 20-25 pounds since his mastoidectomy at the beginning of the month, and he had lost about 30 pounds to date; his voice was entirely gone; an increasing number of small purple spots were showing up under his fingernails; the left-side facial paralysis had not improved yet; he had extreme pain in both ears that he could not describe; he was severely fatigued all the time; and he had a rash and bumps on his face and neck that kind of resembled razor burn. Despite the long list of things going on with his body, Keith had the best attitude - was hopeful for a diagnosis - and was ready to jump into whatever treatment was needed to get him back on his feet. Without a doubt, his ever-positive attitude made a difference over and over again.
That Monday in the hospital was a busy day. Lots of tests and lots of contact from all our family and friends to show their support. By Tuesday, March 22 I was able to give an e-mail update:
First of all, thank you everyone for your prayers and support…I just can’t say it enough! I didn’t know it was possible for two people to cry as much as Keith and I have; we are overwhelmingly blessed and humbled by the love you’ve all shown us. This has been an experience like no other, and we are in constant thanks to God for what He has done and what is to come.
On Sunday (March 20), Keith had his most difficult day so far, in terms of pain. The doctor and I talked several times that day, and he spoke with other doctors as well, to come up with how they wanted to treat Keith yesterday. We saw 2 doctors in the morning, and they confirmed it was best to admit him to Swedish Hospital, where they could expedite testing. They did a cardiac ultrasound, which came back normal; various blood tests, which we’ll see results of starting today; took a chest x-ray, which came back with abnormal results, showing a large mass; and did a CT scan of his chest. Today we'll hear more about the CT scan, and they’ll also do a bronchoscopy to get a better look at his lungs. So no definite news yet, just lots of things going on that should provide some answers soon.
In the mean time, Keith is not feeling well, but God is giving him the strength and attitude he needs to keep pressing on.
I’ll continue to send out updates as we know more. If you’ve called/emailed/texted me and not heard back, please know that we love you all and are thankful for each of you. It’s been a little overwhelming, and I have not done the best job of getting back to everyone individually, but we greatly appreciate your support.
On a lighter note, in Keith’s absence, I'm realizing all the things that I need to learn to do on my own. I came home late from the hospital tonight and at 2am, the dog started barking wildly. I opened Clay’s window to find 3 coyotes standing about 10 feet from the house, staring right at me! I freaked out and tried to shut the window real fast so they wouldn’t attack me (yes, ridiculous, I know), and in the process, I managed to get it stuck in the open position. After 5 minutes or so of messing with it, I gave up and ran to the garage to get a gun, at which point I realized I don’t know how to load or shoot a gun. Just great. So I shined a spotlight in the fields, banged some pots and pans together, and did my best to yell and scare the coyotes, who were out there bugging the mama cows and their babies. It wasn’t effective; they just ignored me. Finally I gave up, came in, and said a prayer that the mama cows would protect their babies tonight. The dog is still barking, and the window is still not shut, but I’m going to go to bed and I'll think about it again in the morning. J
Thank you all again for your prayers and love. I can't use the word “thankful” enough, but that’s what we are! I’ll update as I know more.
As I stop and think back on that time in our lives, it's almost more overwhelming now than it was then. It was like every person we knew rallied to provide help and support in some way. I feel like an outsider looking in as I go back over the hundreds of e-mails from people, and the notes I took of what happened each day.
Our moms did the best ever job of trying to keep things as normal as possible for the boys in our absence. Being away from them was so hard on us, but at the same time, we wanted to protect them from some of what was going on in the hospital; it seemed like more burden than they should have to carry. Our family and friends stepped up to take care of everything on the ranch, and began to fill our fridge and freezer with meals, expecting that we'd be returning home very soon. I would leave the hospital late each night, usually well after midnight, and return in the morning, bringing a new stack of mail and paperwork for us to tackle each day.
Something that sticks out in my mind is the presence of our friend and church pastor, Scott Myers, while Keith was in the hospital. Keith didn't want visitors, so aside from family, Scott was the only visitor to spend much time with us. He was there the day Keith was admitted, and many days after that; Scott would come sit and just "be" with us. We didn't have to entertain him or force conversation; he was just there. There to talk when one of us wanted to, there to listen as the doctors and nurses came in and out, there to pray with us as we waited and wondered about what would come next. And we didn't ask him to be there; he just showed up on his own, and left the same way. I'll always remember that.
Likewise, Scott's wife Heidi was reaching out to family and friends on our behalf from home. The day Keith went into the hospital, Heidi rounded up a large group of people who would pray for Keith around the clock. We didn't know about it, until receiving an e-mail from my cousin Sara, who was stationed in Iraq. Heidi had not found people to pray from 1am-3am, when a message from Sara came in, saying she would take that time to pray, as it was mid-day in Iraq. To know that people were praying 'round the clock for a diagnosis and healing for Keith was once again, overwhelming. The power of prayer is greater than I think any of us can grasp.
March 22: Doctors performed a bronchoscopy on Keith; it showed large, bloody cavitations in his lungs. On this day, he was not given any of the prednisone he had been taking and recalls this as being one of his most painful days ever.
March 23: Open lung biopsy; results expected by the end of the week. Good friends whose daughter has a form of vasculitis visited us in the hospital, they asked about the possibility of Keith having vasculitis (in my mind, I was thinking..."no way"); later that night, one doctor came in and suggested the possibility of Wegener's.
March 24: We began hearing more talk of a possible Wegener's diagnosis. Keith got his first of three 1,000mg steroid doses via IV, in anticipation of Wegener's.
March 25: Second 1,000mg steroid dose via IV; results of lung biopsy confirmed
March 26: Last 1,000mg steroid dose.
The end of the 3 large steroid doses felt like a milestone to both of us, and I was glad to have some progress to report to our ever growing e-mail list that night:
Thank you all again for your continued prayers for Keith and our family!
Today we received the last of the biopsy results, which confirmed that Keith does have Wegener’s Granulomatosis, a form of vasculitis. We are thankful to have a diagnosis! The doctors began the first stage of treatment on Thursday because they wanted to get a jump start on it, even without all the results back. Today he had his last of 3 large steroid doses through IV. We were told there could be some side effects from the steroids, but he hasn’t noticed any; that is great news!
Keith still has a drain tube in from his lung biopsy, and once that is removed, we believe he will be able to go home. It is possible that he may go home tomorrow, but more likely on Monday. In the mean time, the nurses here love him because he is their “easy” patient. J
Tonight we met with a rheumatologist - she will be his new disease doctor - and Keith began a high dose oral steroid treatment (60mg per day, which is high, but seems small compared to the 1,000mg he’s had via IV over the past 3 days); he'll be on that for the next 3 to 4 weeks before tapering off. Tomorrow he will begin on Cytoxan, a chemotherapeutic drug, in a very low dose, which will increase as he goes off the steroids. The doctor expects that he’ll be on the Cytoxan (a daily pill) for a minimum of 6 months. Then there are a few other goodies to go along with that…a stomach protectant, an antibiotic, and so on.
After talking with the doctor, we feel better informed as to what we can expect as Keith gets out of the hospital and back to life as usual. He can expect up and down days…the treatment isn’t going to be like flipping a switch back to his all-energetic self. His symptoms won’t go away right away, and since each patient is different, there’s no general guideline for when, or if, things, such as his voice, facial paralysis, etc., will return to normal. And as with everything in life, we don’t know what the disease will look like for him in 3 months, 6 months, or a year, but one thing is for sure…God knows, so we don’t have to worry one bit about it. We trust that it’s in His hands and that’s all we need to know!
Not much more to report at this time. Keith is feeling pretty good, and looking forward to moving ahead with treatment and getting his strength back. We are praying that he goes into full remission and doesn’t have to mess with the disease again. I am also praying that he responds quickly to the treatment and with little or no side effects.
We are thanking God continually for the peace that He’s given us this entire time. There hasn’t been a moment where we haven't felt His presence. And we are grateful for your love, prayers, and support. It’s just an unexplainable feeling to know how many people are lifting him up in prayer at any given time. Wow, that can bring tears to a person’s eyes, for sure!
Our love to you all,
So Keith's week in the hospital was coming to an end, and he was very anxious to get home and begin recovery. What we didn't expect was that he wasn't going to be going home quite yet. Swedish would become his home away from home for the next couple of weeks as a variety of things kept him there. My next post (or posts) will cover his remaining 20 days of hanging out in the hospital.