Decision Day 2010

Hello again blog-friends thought I'd write a quick post in case any of you were praying for Dana's 2:30 meeting with the doctors this afternoon. Well, you can pray a little longer, we aren't meeting until 4:00. The doctor called late last night (!), he wouldn't be back until after that time.

He also introduced another surgical choice, unilateral something or other, which will be explained to us more tonight. It seems that endonasal is less and less an option due to the sleep apnea. We will find out tonight what the data from Friday showed but we know enough that it's not a real safe option right now. So we are left with eyebrow incision, unilateral, and going home. The latter seems the most appealing physically but spiritually we are prepared to go through with this and find out whether the tumor is cancer or not. We can look back and see how the Lord has prepared the way for us to be here, and with tons of support from family and friends, it seems to be the right path.

Oops! The doctor's office just called, they want us there at 3:30 instead of 4 so I gotta finish this up real quick (it's 2:35) Too bad, we'll get there when we get there

Anyway the last few days have been a real blessing. The family of Maggie's penpal are really sweet people and we got to spend a lot of time with them, and I think more importantly the girls got to spend a couple days with some kids their own age and be kids for a while. Amazingly, Rachel also got an email from her penpal who is in Michigan the same day we were visiting Maggie's.

And speaking of penpals, Dana has an online friend from Seattle she's been corresponding with for several months who has had several surgeries to remove tumors like these. She has been very helpful ad encouraging to Dana, helping her see things from a patient's perspective. As it turns out...remember Dana's surgery was supposed to be 7am last Friday but they pushed it back to noon because of an emergency surgery? You'll never guess who's it was..... yes, you are a very smart reader! And (are you sitting comfortably?) she is staying at the same hotel as Dana's parents! We hope to meet up with them later. (Hoo-hoo)

As for Dr. Go, the more time we've had this weekend to let the emotions drain away into the Pacific, the more it appears the doctor we were so upset with last week may very well be the one that has saved her life. The whole team knew about and was concerned with the CPAP issue for a while but he raised the post-op concerns that really put a stop to what could have been very, very bad. He was not scheduled for Friday morning, so if Dana's surgery wasn't pushed back until noon then possibly no one would have noticed what Dr. Go did. Get the picture? Clearly the picture is bigger than all of us can see.

I forgot to mention the reason why Dana loves the ocean and water so much. The crashing waves never stop. It remind us of God's love for us. Never-ending.

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I Tell You the View, is Truly Amazing

Well the last couple days we had a chance to get out and enjoy the wonders of God's creation. The kids got a chance to play in the Pacific Ocean  and feel the power of the waves. Dana got to walk on the beach and feel the sand and water between her toes. On the drive east to Riverside we saw snow-capped mountains through the palm-tree lined streets. Sky so blue it defines the color's name. I'm sure lots photos will follow later, one or two here won't d it justice.

Yesterday after church we met up with some more new friends. Maggie has been corresponding with a pen pal that she found through Focus on the Family. Again, it is just like God to prepare the way for us and provide a Christian family to visit with and share life together - their daughter suffered from leukemia a few years ago and the same questions we are asking about not knowing why we're on this path they had already gone through. (Hoo-hoo)

So all the wonders of God's creation has got me thinking about giving you another historical snippet. After the events of the diagnosis from the radiologist (see "Second Glance" from last week) it was time to find a Neurosurgeon. It was plain we were going to see a real specialist, cuz darn it we Delnor, St. Joe's and Sherman Hospitals are very nice but there was no way they were going to operate on my wife's brain.

Rush Univ. has a great reputation so she called there. "Well, our Chief Neurosurgeon has open clinic hours this afternoon, can you come at 2:00?" What?? The number one guy right away? It takes 6 months to see my dentist!! (Hoo-hoo)

So we dropped the kids off at Grammas and plowed through traffic to bring the MRIs to Dr. Byrne. Right away he looked at the scans and looked very concerned. It could be the Meningioma as the radiologist guessed but he thought very strongly it was an Esthesioneuroblastoma (ENB) which "if we catch it this early, you're very fortunate. And don't go looking it up on the internet, it'll scare the crap out of you."

"I could have cancer?!?"

Right away after leaving there she wanted to go to the lake. As a young girl she would spend every summer day at the pool, or ride her bike to Lake Michigan. Water was always her thing. She wanted to see something bigger than herself, and Lake Michigan was the biggest around. She went out on a pier that goes out into the Lake to talk to God alone, because she knew I wouldn't follow her out there (there's sharks and giant squid etc in the water...)

How exactly is this part of God's plan? My daughters are still so young, I'm home-schooling, there are things to do and see, why is this happening??

It's just like God that she got a phone call from a dear friend that was having family stuff going on she needed to talk about. So there they were sharing life together (hoo-hoo) And it is so great to be a part of something when it all comes back full circle; that same friend called yesterday while we were walking on the beach. There is no question in our minds that God is still there walking with us.

It is foolish for us to praise Him only in the "good times" merely because the road ahead seems a little foggy to us. We can only walk by faith, not by sight, strengthened by His glorious might. What joy it will be to look back at all this and say "what were we worried about?"

I really don't know who's reading this and where you are at spiritually, but I encourage you to take the time to look at this natural world that you can see, hear, taste, smell and touch and know that it was not put here by mistake. It was made by Someone who loves you and wants you to enjoy it. Something bigger than yourself, no matter what you're going through. Even when we don't praise Him, the earth cries out His glory.

I'm going to close today's post with excerpt from one of my favorite creation songs, "Truly Amazing" by The Waiting;

Well, the same Big Hands that made me made the biggest skies I've seen. And the same Big Eyes that cry for me are watching every living thing. So the skies they never argue and Creation won't complain. Though She's been victimized and brutalized she shudders only at One Name

                                                            

And I know I've been afraid of every little thing. But today I join Creation when I raise my head and sing

She's opened my eyes, and now I'm where I belong, joined in a song. You're truly amazing!

I'm looking at You, I tell You the view is truly amazing!

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Take Me to the Riverside

I have to admit when we first decided to have the surgery in CA I was very excited that we would be able to go to Greg Laurie's church, Harvest Christian Fellowship in Riverside CA. I've been listening to his radio messages for almost 15 years and receive his daily devotions via Email. Everyone has a favorite pastor, he's mine. He has a gift of explaining things simply but directly.

I had already planned to go this Sunday with the kids, but with the delay in Dana's surgery that meant we got to go together!

Right off the bat we had a Kleenex moment because the first worship song they played was "Salvation is Here" which has the lyrics..

"God above all the world in motion, God above all my hopes and fears. Well I don't care what the world throw at me now, It's gonna be alright! 'Cause I know my God saved the day and I know His word never fails and I know my God made a way for me..."

Dana said she heard this song at our church last week and made a note that she was going to tell me to put it in the blog. Pretty powerful huh? God always speaks to the two of us through music. I have personally always been impacted more through a 3 or 5 minute song from the heart than volumes of books. God brought me to faith through music and keeps me close to Him through it as well. Of course we weren't prepared for the next Kleenex moment.

Greg just returned from a trip to Israel and was preaching that day, but first introduced a new Christian Band called Revive from Australia who played their first radio single called "Blink." Just read these lyrics and tell me whether or not God was speaking to us through them...:

"Teach me to number my days, And count every moment before it slips away. Take in all the colors before they fade to gray. I don't want to miss even just a second more of this

It happens in a blink, It happens in a flash. It happens in the time it takes to look back. I try to hold on tight, but there's no stopping time. What is it I've done with my life?

When it's all said and done, no one remembers how far we have run. The only thing that matters is how we have loved. I don't want to miss even just a second more of this.

Slow down, slow down, before today becomes our yesterday.Slow down, slow down, before you turn around and it's too late.

It happens in a blink, It happens in a flash (etc)

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Brief Encounter

Picked up my Lady from the sleep study this morning and learned that she had a brief encounter with "a real live Christian!" Turns out the sleep tech goes to a real Bible-believing church and they had some amazing conversations. Just more proof that God is at work in her life and keeps placing complete strangers in her path to bring encouragement in times of stress.

We're not sure the data from her sleep study will be sufficient to make an educated decision Tuesday when we go before the group at the hospital. She was supposed to do a split study, half without the CPAP and half with. By the time she was actually able to get to sleep with everything running through her mind, it seemed then it was time to put on the mask. She maybe got 3 hrs of sleep at the most. We'll find out Tues at 2:30 if there's anything they can gleen from it.

I do think it's just like God to put another owl in her path at the sleep clinic. They are, of course, nocturnal.

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Another Glance

I was supposed to leave ten minutes ago to pick Dana up from the sleep study but I just had to share this, in case some of you are just waking up reading the previous post.

I was in fact on my way out the door when I got an email on my phone, it was pastor Greg Laurie's daily devotion and I stopped to read.

In it he referenced Psalm 91

Ps 91:2 I will say of the LORD, "He is my refuge and my fortress, my God, in whom I trust."

Ps 91:4 He will cover you with his feathers, and under his wings you will find refuge; His faithfulness will be your shield.

Ps 14-16  Because he loves me," says the LORD, "I will rescue him; I will protect him, for he acknowledges My name. He will call upon Me, and I will answer him; I will be with him in trouble, I will deliver him and honor him."

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Sometime my life just don't make sense at all...

Well it's 11:30 pm Pacific time almost the 29th. I feel like a news reporter that has to write a story by midnight of a train that wrecked while his family was on board. Wow what an emotional train wreck of a day.

Everything was going as planned. Dana was all ready for surgery, gowned up, IV in, last minute well wishes from parents and kids, sitting on the bed shaking, waiting for the moment. All the anxiety of the past year+ culminates to the reality of the beginning of the rest of her life.

The Anest. came in after a very long and painful wait and was really concerned about her not using the CPAP and how that would affect her. This is something that was known by the surgical team and why we met with Dr Gil (Pulmonary) the night before to discuss how bad it would be for the pressure CPAP creates on the inside of the nose, it could compromise the healing process. This we knew and were prepared to deal with.

The Anest thought it would be a good idea to stay intubated overnight to help heal the first night, which isn't something we had discussed with the team yesterday, but seemed logical enough. It would be hard for the kids to see her intubated etc but we can deal with that also.

All the warmth and love and caring from the surgical team we got yesterday suddenly flushed down the sewer when this guy said "well you don't really have any serious side effects from this tumor, why don't you go home and lose about 50 pounds, come back another time it would make it a lot easier for all of us."

I'm not really sure if words can describe the amount of anguish that created.

Eventually Dr Kassam and the rest of the team came in the try to smooth things over. Damage was already don't. Thoughts of leaving to go home were trying to impair sound judgement. She felt like that scene in Rosemary's Baby where they are all huddling around the mother whose child they wanted.

Her safety is their main concern and they were worried that without the CPAP if she can't get air they'd have to do an emergency trache. This was never discussed previously where the heck was this guy yesterday when we were going over all these details? The anest. report is very important, they say, so why wasn't he in on the consultation yesterday? Why did this wait until the last minute, five minutes before surgery was supposed to start?

The want to do a sleep study tonight without the CPAP to see how she might respond after the surgery. A good idea logically but the way it was presented did not go over very well to say the least. This could have been done last night, or the night before, or for that matter a few weeks ago in Elgin!

They have tentatively rescheduled for next Wednesday, the best they can do with the holiday weekend, also  depending on the results of the study tonight. So now we'd be talking another 4-5 days of certainly increased anxiety, plus the expense of an extra week of house & car rental, changing plane tickets, missing work, missing the girls' dance recital...

Hold me Jesus, I'm shaking like a leaf....

It's real easy to look back at all these owls in the road and say it's part of God's plan when everything seems to fall into place. Well, it's not really easy, but it seems to make sense. Then something like this happens, it doesn't make sense. Six months ago she prayed, "God, if this really needs to come out, make it grow." It grew. Many times we have prayed (and others prayed for us) to make the path clear and straight. It has been.

Up until now. Is this really part of the plan? Or is this just a distraction? We don't know yet, but we pray that we will someday.

Ironically, the Anest. name was "Dr. Go". We went.

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Someone in my condition needs the Great Physician

Good morning! Wanted to leave a quick post in case you were up this early wondering how Dana is doing and praying for her surgery that was supposed to happen at 7am, half an hr ago from when I am writing.

I would like to say that the surgery was cancelled because her MRI yesterday showed the tumor was gone, but that would not be the truth. It was actually pushed back to 12:00 noon because the team has a couple of emergency surgeries they wanted to do before ours. Good news, we can sleep in a little (previously they wanted us there at 5am) but bad news, she still can't eat anything prior so she has a longer time of fasting :-(

Last night we met the surgical team fir the first time. What a breath of fresh air that was! They were all very kind, compassionate, caring, and even funny! Dr. Kassam, the surgeon who pioneered the endonasal approach, and Dr. Kelly took the time to answer all of her questions, explained everything in detail and gave honest expectations based on experiences and statistics. When something important arose, like how she was going to sleep without the CPAP for 6 weeks, they brought in Dr. Gil to discuss it. We definitely had a "Patch Adams" moment with Dr. Asia, the Internal Med guy. If these guys were (metaphorically) the magi coming in from the east, Dr. Asia definitely brought the "mirth" while the others brought gold and incense.

We definitely made the right choice coming out here. The team is not only the most highly skilled, but also the most caring and human. They held her hand, looked in her eyes and said "don't worry, we will take good care of you". Wen Dr. Kassam had to leave to tend to something else, he kept coming back to check on her (we were there for the consultation almost two hrs!). Dr. Gil called her at 9pm and left a message reminding her not to eat after 12:00 and that they would be caring for her in the morning! Just amazing... We are so blessed that God has made this type of health care available to us in this great time of need. (Hoo-hoo)

"But oh, Mr. Blog person, what happened to telling us about why we are in CA not PA?" you ask? sorry, that is going to have to wait a little, we are leaving for the hospital now. Dontcha love cliffhangers?

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