Saturday, June 30, 2012

Bryan's Obituary

My dad wrote this, so I guess that makes this the blog's first "guest post."

Bryan Bain, age 44, passed away on June 29, 2012.   He was born on June 16, 1968, in San Antonio, TX.
Bryan is survived by his wife of 12 years, Aimee, and their seven children, Nathan, Megan, Evan, Justin, Carsten, Steffen and Austin.  

Bryan is preceded in death by his father Othell, his mother Barbara and his brother Michael.

Bryan was a successful business man, founding a software development business supporting medical billing.  Without question his greatest achievements were marrying the love of his life Aimee, and together establishing a nurturing, Christ-centered home full of love and adventure and seven beautiful children.  He was a man fully committed to the Lord.  He served as an adult Sunday school teacher, deacon and AWANA Commander.  Bryan loved the quote: “God’s man, living in God’s plan, is invincible until God’s work with him is through.”    
A Memorial Service will be held on July 2nd at 1 p.m. at Bulverde Baptist Church, 1331 Bulverde Road, Bulverde, Texas. Children are welcome.
To leave the family condolences, please visit and select the Obituaries tab. In lieu of flowers, donations may be made to Bulverde Baptist Church designated for the Bain family. 

Funeral Arrangements

Here are the details for Bryan's funeral arrangements.  None of the events are family-only.  Children are always welcome.

Visitation:  Sunday, 1 Jul
                 5 - 7 p.m.
                 Ebensberger-Fisher Funeral Home
                 111 E. Rosewood Ave
                 Boerne, TX 78006

Interment:  Monday, 2 Jul
                 10 a.m.
                 Mission Park South
                 1700 S.E. Military Drive
                 San Antonio, TX 78214

Memorial Service:  Monday, 2 Jul
                            1 p.m.
                            Bulverde Baptist Church
                            1331 Bulverde Rd.
                            Bulverde, TX 78163

Friday, June 29, 2012


Bryan, my sweet husband and best daddy in the world, passed away this afternoon very peacefully.

We will miss him.

2 Timothy 4:7-8

I have fought the good fight, 
I have finished the race, 
I have kept the faith.  
Finally, there is laid up for me the crown of righteousness, 
which the Lord, the righteous Judge, will give to me on that Day, 
and not to me only but also to all who have loved His appearing.

Thursday, June 28, 2012

Never Enough

Bryan is resting more peacefully today. I think we have his pain under control and we move him as little as possible.

As I sit next to him, I often think of how much I wish he had had just a little more time. There are so many things we would have said, would have done. Then I realize that it could never have been enough. He's 44 years old. Of course there are so many things that we had thought were still to come. If he had had an extra week, an extra month, an extra year, none of that would have been enough.

I have been blessed to see how many people love Bryan. I'm certain many of you wish you had had more time with him too: to say one last thing, to see him one last time. I'm here to tell you that it wouldn't have been enough.

So for now, I thank the Lord that we are a family who loves each other and who is not saddled with regret over the past. We grieve our separated future, as we look forward to the final day when we will see each other again. Value the moments you have and make them count. Miles, a friend and mentor of Bryan's, told him to evaluate life in terms of the "twenty year plan." Will it matter in twenty years? We should also look at the "eternal plan." Will it count for eternity?


A man’s heart plans his way,
But the Lord directs his steps.

Tuesday, June 26, 2012


Bryan is one of the strongest and most independent men I know, and he's showing that now. As of 7 PM on Tuesday, he is, against all odds, clinging to life. Although it pains me more than I can say to see him struggle, I know him. He will stay as long as he possibly can. And we will give him all the love we can.

A friend gave me a wonderful printout of Scriptures which I read to him through my tears.

2 Corinthians 4:7-11
"But we have this treasure in earthen vessels, that the excellence of the power may be of God and not of us. 
We are hard-pressed on every side, yet not crushed; we are perplexed, but not in despair; persecuted, but not forsaken; struck down, but not destroyed— 
always carrying about in the body the dying of the Lord Jesus,
that the life of Jesus also may be manifested in our body.
For we who live are always delivered to death for Jesus’ sake, that the life of Jesus also may be manifested in our mortal flesh."

Sunday, June 24, 2012


Sorry for the double post this morning, but I wanted to reassure everyone on something.

I know you might be concerned that Bryan is in the state he is in because this wasn't caught early enough.  That's just not true.  While it might possibly have been easier on his neck, it would not have altered the ultimate course.  His neck is actually completely pain-free after the surgery.

Here's the deal:  When Bryan went in at the end of May, there were not cancer cells in the blood.  That means it wasn't considered leukemia.  It's important for everyone to understand that.  He was treated for the condition in its state at that time, and the treatment simply didn't work.

He had only been without labs a couple of days when all the cancer cells showed up in his blood.  You can't catch things much quicker than that.

Also, for those of you who are looking things up, I haven't given every minute detail on Bryan's specific type of ALL (actually T-ALL), simply because it's highly technical, ungoogle-able, and really doesn't matter.  Suffice to say that it is rare, extremely rare, and just wasn't treatable.

Please remember that God is sovereign and not limited by diagnosis, prognosis, access to healthcare, or geography.  While His will might be exceptionally painful, it is just that- His will.  We can take comfort in the fact that He is in control, even when we can't possibly see the good in what happens. 


Bryan's home in hospice care.  No visitors please unless invited.  If you feel strongly about coming, please call and I'll see if I can work out a time.  He's not responsive, so your prayers are best.  Our family needs this time and the children especially need privacy.

Last weekend, Bryan told me that he had been praying because he was struggling with why this was all happening.  He told me, "Sweetheart, God told me that it was for His glory."  May the faith and peace that Bryan had extend to the rest of us.

For His glory,

Saturday, June 23, 2012


I got an email earlier that said Bryan may have had a stroke. I just wanted to clarify. The oncologist thought that was a possibility, but the MRI came back with no evidence of that. The symptoms are caused by leukemia lesions pressing down on the brain. I'm looking into hospice care. Bryan loves this quote: "God's man, living in God's plan, is invincible until God's work with him is through."

Friday, June 22, 2012


Just a quick update... My sweet Bryan continues to do poorly. If you've been praying, keep it up. If not, this would be a good time to start. No visitors, please.

Wednesday, June 20, 2012


Just a quick post from the hospital... Well, Bryan was doing so well at home, but Tuesday afternoon he took a turn for the worse. He was lethargic and, during our family worship time, incoherent. I made him an appointment with a PA at the cancer center and they ran labs. The PA was utterly unhelpful. I insisted that he was NOT behaving normally, nor was he suffering the effects of not eating breakfast! She had us wait for some more labs to come back, and then a nurse came and told us Dr. Lyons wanted to see us. He told us the labs looked bad. Not only was the cancer unchecked by his first chemo round, it was worse. We have a revised diagnosis: ALL, acute lymphoblastic leukemia. It's very aggressive and the mild approach we had hoped for just isn't a possibility. We are back in the hospital and back on chemo. This time, it's something newer (3 or 4 years old) and we are hoping it works. Keep praying! We sang some great songs during worship on Sunday and they've been running through my mind today, even if I can't quite sing them out loud right now. "Blessed be Your name On the road marked with suffering; Though there's pain in the offering, Blessed be your name." And, because life goes on even in the midst of cancer, a little postscript: Austin learned to clap today. He did a little, "yeah, Daddy" for us this afternoon.

Tuesday, June 19, 2012

Home Sweet Home

It's been good to have Bryan home.  Last Saturday, I realized that it was the first day in two and a half weeks that I didn't have to get in the car and drive somewhere.  (I hated being in the car when I was a baby, and I still feel pretty much the same way about it.  Except no more screaming and kicking the car seat.)  Sunday afternoon, I took a nap and slept for two hours!  (Thank you, Austin, for letting Mommy sleep!)  I guess I just needed to catch up.

The kids are thrilled to have Daddy (and Mommy) home.  They've been great about letting him rest and just doing all their usual chores, playing, and daily living in the midst of this big change in our family.

Bryan has done better being at home, though managing his pain and nausea is a challenge.  He's working toward getting on a good schedule with his pain meds so that he's not experiencing as many ups and downs.  I'm trying to feed him as much as I can get him to eat.

Over the past couple of days, I've felt a little overwhelmed (sometimes a lot overwhelmed) at the path before us.  I was so focused on getting Bryan home that I really hadn't thought past that.  Now that we've reached that goal, the finish line seems a long way off.  I know I'll need to refocus my attention on smaller goalposts along the way to maintain the stamina I'll need. 

I went for a (short) run early this morning.  I had been working on getting back in shape after baby #7, but three weeks off left me feeling almost like I was back to square one.  To keep myself going, I focused on something ahead of me and kept focusing on it until I got there, then I shifted my focus to something further ahead and ran toward that.  Life is going to be a lot like that from now on.  We'll need to celebrate the small victories and keep moving.  Ultimately, we will all need to keep our eyes fixed on the Rock of our Salvation, the only One who can bring us through.

Now, the goal is to make Bryan feel comfortable at home.  We bought a recliner for him.  My dad and a friend picked it up and brought it over on Father's Day.  Bryan has really loved it, and, as you can see from the picture, Austin is helping him break it in.

Psalm 61:2
"When my heart is overwhelmed,
Lead me to the Rock that is higher than I."

Saturday, June 16, 2012

A Very Happy Birthday!

It's Bryan's birthday!  And he's at home!  He says it's the best birthday gift he's ever gotten in his life.
You'll notice Bryan's wearing a cap.  His hair was coming out in clumps, so I shaved it off for him yesterday.  The kids aren't quite ready for the dramatic transformation, and they're insisting that he wear the cap all the time.  I've been trying to remind them of all the great people we know who are bald, but they just say that those people "have always been bald."

And the HUGE card is from our wonderful church family.  Bryan greatly enjoyed reading the many messages inside.  Our older children were at VBS this week, and it really encouraged them to see so many people praying for their daddy.

(Oh, and Austin was taking a nap.)

Bryan's white blood cell counts came back up quickly, so the doctor released him yesterday morning.  Then, we spent all day waiting around for the rest of the doctors to sign off as well.  Despite the fact that I've been praying and praying for him to be released, I was a little nervous about actually bringing him home.  In the hospital, every cell (it seems) is monitored, and at home, well, it's just us!  Not a professional in sight.  I have to say, though, just being home has caused him to improve greatly.  There's something healing about being in your own environment.  His pain and nausea has decreased today, and he thinks that's just because he's more relaxed.  Hospitals are stressful places.

On Thursday, Dr. Lyons had given Bryan two treatment options for us to discuss.  Yesterday, I went to the hospital early so that we would be able to talk to the doctor about the choice we had made.  When he came in, he said he had a third option.  After much thought and consultation and poring over the labs, Bryan's cancer looks more like leukemia (high grade aggressive lymphomas often do) and Dr. Lyons thinks there would be benefits from treating it as such.  The protocol is regimented and complicated, stretching over two and a half years.  Not all of that time involves intensive treatment.  It should be mostly outpatient, which was one of our major priorities, and it has a slightly increased success rate.  Bryan's form (T-cell) is still very rare, but this seems like a good option.  We'll get all the details when we go into the office.

For now, we're just enjoying having him home, and we're taking a break (with the exception of this one little post) from thinking about anything other than the moment at hand.

Happy Birthday, Bryan!

Proverbs 9:10-11
“The fear of the Lord is the beginning of wisdom,
And the knowledge of the Holy One is understanding. 
 For by me your days will be multiplied,
And years of life will be added to you."

Thursday, June 14, 2012


Today Bryan and I spent a good deal of time talking about the earliest days of his hospitalization.  He really doesn't remember most of what happened the first five days.  We even shared some funny stories: his iPhone got taken out with the laundry the first day in the hospital.  That's only funny because I found it before it got washed. Recounting those events was such a crystal clear reminder of how far we've come.

When we encounter difficulties, especially long trials, it's easy to forget the good things that the Lord has done already.  For example, although Bryan still has significant bone pain, we were reminded today that when he went into the hospital, the pain in his ribs was so severe, he couldn't take a deep breath.  He and I decided to make a list of the little miracles that the Lord is working out as we wait for the ultimate "big miracle" of complete healing.  God's faithfulness in the little things should remind us of His complete control over all things.

We've had to make a decision on how to approach Bryan's treatment.  We both firmly believe that maintaining his quality of life and maximizing his time with the family is a very important factor.  Because of that, we've decided against aggressive (and risky) treatment in favor of a more mild chemo course.  ("Mild" seems like a misnomer when it comes to chemo.)  It's our desire to see him get better while he spends time with the kids and continues to work and just live a normal life.

Bryan is learning how to manage his pain, and I know that will make life much more bearable for the next few months.  His counts, though still low, are rising, and the doctor is impressed with his recovery from the first round of chemo.  Bryan has a new-found courage and determination that is heartening to me. 

Now we just need to get him home! 

1 Thessalonians 5:18
"In everything give thanks, for this is the will of God,
        in Christ Jesus, concerning you."

Tuesday, June 12, 2012

Two Weeks

Two weeks.  If someone had told me two weeks ago that Bryan would still be in the hospital with no release date in sight, I would have said that there is no way we'd be able to handle that.

But, he's still in the hospital, and we are handling it.  The Lord gives grace to do what we have to do, and we're even slipping into some sort of routine.  (It's a less-than-ideal routine, but a routine nevertheless.)  I spend the mornings with the little people and the afternoons with Bryan, coming home in time to spend some more time with the children before bed.  Everyone is getting a little short-changed when it comes to how much time they're spending with me, but we're making the best of a difficult situation.

It would be impossible to overstate how blessed we are by the help we're getting.  I know I have said that before, but it still seems like I haven't said thank you enough.  People are bringing meals, sending cards and emails, visiting, watching the kids while I'm at the hospital, and even doing yard work.  The nurses are impressed by the level of support we've received.  Not everyone, it seems, is surrounded by so many loving brothers and sisters.  We give all the glory to the Lord, and the love of His people is a testimony to His goodness.

Bryan is improving in many ways.  His kidneys are functioning normally and the edema is very slowly going away.  His blood counts are VERY low, as expected, and he's getting daily blood transfusions and IV antibiotics for sepsis.  I'm so proud of his patience and determination.  Being in the hospital is extremely trying, but he's resting as much as he can, and he's determined to get better as quickly as possible.

Bryan's been watching The Truth Project DVDs.  (I think he's secretly trying to get ahead of our Sunday school class.)  He finds those very enriching.  Reading is difficult with the neck brace, so DVDs are a nice alternative.  He tries to nap when he can, but we joke that the hospital outfits patients with a "nap monitor."  As soon as he dozes off, the "nap monitor" alerts them, and someone comes rushing into the room to take vitals, change IV bags, take him for a walk around the ward.  There's no rest for the weary in a hospital.

Endurance is the name of the game right now.  We realized last week that we had moved from a sprint to a marathon with no change in pace.  As the exhaustion started to set in, we knew we had to change things and take a longer view (hence the new routine.)  Now, we're looking forward to Bryan coming home as soon as it's safe and healthy for him to leave the hospital.  And we're praying for the endurance to run this race in a way that brings honor to the Lord who has been so merciful to us.

This verse came to mind this evening as I was out with the kids.  A strong wind had blown up and little Carsten threw out his arms and started to run as fast as his legs could carry him, shouting, "Run like the wind!"

Isaiah 40:31
But they that wait upon the Lord shall renew their strength; 
they shall mount up with wings as eagles; 
they shall run, and not be weary; 
and they shall walk, and not faint.

Teach me, Lord, teach me, Lord, to wait.

Sunday, June 10, 2012

Hidden in My Heart

Memorizing Bible verses is a very good thing.  And I'm not just saying that because Bryan and I are AWANA commanders.  I really believe that Scripture memory is an important piece of the puzzle that makes up who we are as Christians.

My dad started helping me memorize verses when I was two.  I think my first verse was, "Be strong in the Lord."  (And, "Children obey your parents," of course.)  Back in my Sunday school days, the teachers would tell us stories of Christians who found themselves persecuted and without Bibles.  They relied on memorized Scripture to encourage and strengthen them.

But memorized Scripture doesn't just come in handy when you're locked in a cell in a hostile land.  It is a lifeline when you're just too exhausted, emotionally and physically, to open a Bible.  This whole situation is wearing me out.  I read God's Word with the kids.  I tell them that from the Scriptures we will find strength.  Then, at the end of the day, I find myself staring at the cover of my Bible, perhaps flipping around randomly, too tired to really "drink" from the Living Water.

That's where Scripture memory comes in.  God is a gracious and loving Father.  He knows I'm tired, and He meets me where I am.  He brings to mind verses that I've memorized, usually from many years ago (although the AWANA verses that I've helped my little people with come to mind too), even in the middle of the night.  Songs that are straight Scripture are especially encouraging. 

Bryan had a rough day yesterday.   His counts were dropping, as expected, and he was nauseated (again, expected), and I could only be with him half the day.  Today, though his physical condition was unchanged (his counts are continuing to fall), he was much calmer and seemed more settled.  I asked him what the difference was, and he said that today, he realized that he just needed to rest.  He's focusing on letting his body recuperate, and I know that that will help tremendously.  It's hard to be still when you're as active as he is, but today, he gave stillness a chance, and I think it worked well for him.

And now for that memorized verse:

Psalm 27:1
The Lord is my light and my salvation;
Whom shall I fear?
The Lord is the strength of my life;
Of whom shall I be afraid?

Thursday, June 7, 2012

Full Info

Yesterday, I realized that because Bryan was so out of it last week, he had never really gotten the "big picture" when it came to his condition.  I've been giving him info and the doctor has been seeing him each day, but all the information was just piecemeal.  This morning, I asked the doctor to go over all of it with him to bring him up to speed.

Now, everything fits together in a coherent fashion in his mind, and that makes things much easier.  At least now he knows what questions to ask!

Today we got the "final diagnosis" and as the doctor suspected, this T-cell Lymphoma doesn't fit into any existing category, so it's "T-cell Lymphoma not otherwise categorized."  (Try googling THAT.)  While the cure rate is not as good as some of the more common B-cells, it's still more treatable than some other forms of cancer.  Because it is rare, the treatment isn't established.  It will be, according to the doctor, "more art than science."  They'll be treating him, closely monitoring how he responds, and making decisions from there.

Right now, he's done with the first round of chemo, so we're just waiting for his blood counts to drop and then come back up.  Because of his compromised kidneys, they are monitoring that even more closely than they usually would.  We'll see how it all goes next week.

And, in the spirit of giving thanks in all things, today Bryan's friend Mitch brought him... an extension cord!  He was about the happiest he's been all week.  It's the little things that make the difference when you're tied to a bed.

Psalm 63:1-4
O God, You are my God; I shall seek You earnestly;
         My soul thirsts for You, my flesh yearns for You,
         In a dry and weary land where there is no water.
Thus I have seen You in the sanctuary,
         To see Your power and Your glory.
Because Your lovingkindness is better than life,
         My lips will praise You.
So I will bless You as long as I live;
         I will lift up my hands in Your name.

Wednesday, June 6, 2012


The little people got to see Daddy again today.  It was a lot more comforting this time around because he's able to get up and around.  He even took a shower!  (The neuro doc cleared him to take his neck brace off for showering and eating.)  It's amazing how much better he looks. 

He's still having quite a bit of bone pain.  It's improved slightly in his ribs.  (That had been interfering with his ability to take a deep breath.)  His back and hip are still troubling him, and that could continue for some time to come.

The pathologists were taking his tissue samples to a conference today.  That way more people can take a look at them.  Apparently, with T-Cell Lymphoma (the type he has), you often fail to determine which of the thirty types it is.  It might not fit neatly into any one category. 

For those who'd like a little lymphoma summary:  It falls into two categories- Hodgkin and Non-Hodgkin (NHL).  NHL is further divided into B-cell (85% of cases) or T-cell (about 15%).  T-cell is further subdivided into many more types, all becoming increasingly more rare.

He has a good doctor.  A really good doctor.  That's a blessing.  He's had the same hematologist/oncologist (Dr. Lyons) since 1996, and that means there's already a level of trust there.  I can't imagine what it would be like to be hit with all this while being bounced from one oncologist on call to another.  Plus, good doctors know other good doctors.  A friend of Dr. Lyons who only does T-cell lymphomas will be consulting with him on Bryan's case.

Because Bryan is starting to feel better, he's getting more active.  Now it's my job to make sure that he doesn't overdo it.  We need him to put his energy into healing.  So, with that in mind...

Visitors are the spice of hospital life, but to make sure that the spice doesn't turn into Five Alarm Chili, here are a few guidelines:
  • Call, text, or at least check in at the nurses' station before visiting.
  • Always knock and wait.  (Hospitals gowns, though eminently stylish, are not very modest.)
  • Keep it brief.
  • Bryan's visiting hours will be 10 AM- 12 PM, and 5 PM- 8 PM.  That will allow time in the afternoons for napping and resting.  (If you absolutely can't make it during those times, just call and we'll work out a time.  As long as he gets some quiet time each day, he'll get the rest he needs to recover.)
Thank you for being so wonderfully helpful and encouraging to us during this time.  Bryan just said today that he is so touched by the outpouring of love we have seen throughout this trial.  Jesus said that we would be known as His disciples when others saw our love for each other, and our family can bear witness to that right now.

Tuesday, June 5, 2012

Fortunately, Unfortunately

Have you ever read the children's book Fortunately?  On one page there's a Fortunately (Ned got invited to a birthday party) and on the next page there's an Unfortunately (the party was a thousand miles away).  The last few days have been like that.

Fortunately, Bryan's calcium levels came back down.  Unfortunately, they gave him too much fluid and it filled his lungs.  (He still has about 20 lbs of water weight.)

Fortunately, his neck surgery went well.  Unfortunately, there's concern that the chemo will slow down the healing process.

Fortunately, the oncology support counselor gave us great information yesterday.  Unfortunately, when I got to the parking lot, my car wouldn't start.  (Fortunately, Robert from church showed up and waited with me.  Unfortunately, it took me well over an hour and a half to get out of the hospital to pick up the kids.)

And for today:  Fortunately, Bryan felt much better.  He's off of the oxygen, his pain has decreased, and he was up and around.  Unfortunately, his lymphoma isn't the good lymphoma.  (Did you know there was good lymphoma?  Well, there is, and that's not what he has.)  The pathologists are taking a closer look to see exactly what type it is.  That way, his doctor will be able to tailor his treatment.

Fortunately, we don't believe in Fortune.  Only in a sovereign God who holds all things in His hand.

"Some trust in chariots and some trust in horses, but we trust in the name of the Lord our God."

Sunday, June 3, 2012

The Kids Visit Daddy

Last night, I had pretty much decided that I really needed to take the kids to see their Daddy.  This morning, I was even more sure, and I got an email from a friend talking about how important it is for kids to walk through these things with us.  It allows them to be "able to see first hand the work of God."

So, we ate a quick breakfast and were off!  Bryan was having a breathing treatment when we arrived (more on that in a minute) so it was a less than ideal time.  But, just as I was thinking that, it hit me that the present time is just less than ideal all around!  This is a tough time, and it's my job to help them through it, not try to shield them from it.

They were so happy to see him, though obviously a little hesitant about all of the cords, tubes, and the oxygen mask.  We explained everything, and all of them got to give Daddy a squeeze.  (Carsten was a little stand offish at first, but even he gave Daddy five before we left.  He was very concerned about Daddy's scruff.  He wants him to shave before he comes home.) 

They looked out the window and saw, of all things, a cat on the roof many floors below.  It has to be a good place if it has a cat.

They also got to meet a doctor and some nurses, so now they feel like Daddy's getting taken care of.  "Those nurses are really nice, Mommy!"  All thoughts of kidnappers were forgotten.

We all prayed together before we left, and then I showed them a few things around the hospital so that they would have a better sense of what it's like.  We sat down at a picnic table and I answered the questions that they had.  All of them were emphatic about the fact that seeing Daddy had helped them feel better.

It felt good to all be together as a family again, even if it was in a little hospital room.

Now, for Bryan's update:  He's staying away from the morphine, so his head was clearer.  Unfortunately, between the chemo and the fluid he was getting for his kidneys yesterday, he ended up with too much fluid and it was filling his lungs.  They put him on a full oxygen mask.  Between that, his glasses, and his neck brace, he is pretty uncomfortable.

He is extremely tired.  His body is just working so hard to fight everything that just about all he can do is sleep.  He did his second day of chemo today.  He said at one point that he felt slightly nauseated, but he just slept through it anyway. 

At the end of the day, he sat up and ate a little dinner.  Even complained a bit about the hospital food!  He said it always looks better than it is.  He must be improving.  He also insisted, in his few minutes of wakefulness, on getting some things taken care of for work. 

As soon as they have a room available on the oncology ward, he'll be moving out of the neuro ward.  His neck seems to be healing as expected, so it's time to shift the focus.

We're still praying for his kidneys.  The nurse said that they're a little surprised, given his young age, that they haven't bounced back a little more quickly.  They are stable (meaning they're not getting worse) but they're still compromised.

Saturday, June 2, 2012

Starting Chemo

Today- Friday- Bryan started chemo.

Although his calcium levels are finally back to normal (yeah!), his kidneys are still not doing well.  They aren't getting any worse, but they haven't gotten better.

The doctor decided to start chemo anyway, but he just adjusted the dosage to take into account Bryan's compromised kidney function.

All through this past week, I have been looking forward to Bryan's calcium levels coming down so that his mind would clear.  I want to have a conversation with him!  Unfortunately, he was given both morphine and several doses of Benadryl last night.  Because his kidneys aren't functioning properly, the medicine wasn't clearing his system.  He was extremely groggy and basically slept all day.  Maybe tomorrow he'll be clearer.

It's actually probably a blessing that he was unaware today.  He's always said, after seeing both of his parents go through chemo, that he would NEVER do chemo.  I really don't think there's a choice here, and I think he'll agree, but it still would have been hard for him to be fully aware of that IV starting.

Our little people are having a hard time with this.  They're being well cared for by my family, but they're missing their Mommy and Daddy.  My dad overheard Justin, who is six, say, "I know Daddy's in the hospital, but how many days has it been since we've seen Mommy?"  It had actually been less than 24 hours.  (I came home at night, but they were asleep, and then left before they woke up.)  To him it seems very long, I guess.  He is also worried that Daddy might get kidnapped from the hospital.  That made me realize that the younger ones have no idea what a hospital is and what's going on.  I need to take them to see him, even if he is groggy, and even if it is for only five minutes.

I'm trying to make the right choices on where to be.  There's only one of me and Bryan needs and wants me there and the kids need and want me here.  They're all going to have to settle for less than what they want, and that breaks my heart.  I keep reminding all of them to just take each day as it comes, and soon we'll be looking back on these days.  Nothing lasts forever.  I'm also making a point to spend time with the children each day, even though that takes me away from Bryan.  It's not that he minds being alone (he doesn't want people to come sit with him while I'm gone), he just wants me there.

I have told the kids that they can call me, and that seems to be helping.  I need to make sure that the younger ones get help to call too.  It makes them feel connected if they can pick up the phone and hear my voice whenever they get a little insecure.

The Valley

I love hiking.  Ever since my dad took me on my first hike up a Swiss Alp when I was five, I have loved the feeling of making it to the top of a mountain.  There's no feeling as invigorating as standing on a peak, looking down into the valleys below.  I remember when I was a teenager, standing in Beatenberg, Switzerland, listening to the church bells ringing joyously for a wedding way down in the valley.  I thought then that if I could choose any place on earth to live, this one spot was it.

So what drives me to the mountain?  It's the valley.  I look up from the valley, see the beauty of the mountain above me, and I know that the view from the top will make the climb worth the effort.  After all, without dark valleys, there would be no majestic mountains.

Our family is in a valley right now.  Bryan is sick, and the valley seems dark.  Here's how our descent began.

On April 16, Bryan started to have a painfully stiff neck.  We did the usual remedies- stretches, warm showers, even a couple of trips to the chiropractor.  Nothing seemed to help, and the pain was getting worse.  Then, he began to also have pain in his hip.  He made an appointment with his orthopedic surgeon, but an x-ray revealed nothing out of the ordinary.  The doctor told him to take Motrin and keep up with the home remedies.

During this time, Bryan was incredibly busy with a project at work.  He was gone 14 or more hours a day, dragging himself home just in time to fall in bed.  Several times the pain was bad enough that he woke screaming in the night.  I tried to give him neck rubs each night before bed, and while those seemed to help some, nothing alleviated the pain completely.  Soon, he couldn't lift his head without physically putting his hands on his head and pulling himself up by the hair.

Now, it's important to remember that Bryan has had joint and bone pain from avascular necrosis for 15 years.  He lives with pain that would drive most of us to the doctor.  He takes a few aspirin, and if the pain especially bad, he sleeps.  This determination, as well as the all-consuming nature of his project at work, worked against him this time.  It kept him from going to the doctor early.

I finally insisted that he go to see a doctor.  The pain was spreading to his ribs and I figured SOMETHING had to be wrong.  He would push himself all day at work, and then be completely immobile at home.  He had so many meetings at work that he couldn't make an appointment until June 1st, but he did get blood work done in advance of the appointment.  I told him to have the results faxed to us and that way, if anything looked especially concerning, we could get him the attention he needed earlier.  He forgot.

Saturday, May 26th, he was on the couch all day, rousing himself once to fix Carsten's training wheels and once to push Steffen on the swing.  Both activities wiped him out for hours afterward.  His appetite declined.

Sunday, he was determined to go to church.  He got up early because he knew it would take him a long time to get ready.  The pain was really causing him to slow down.  He made it through church and came home and went straight to bed.

Monday was Memorial Day.  Don't ever get sick on a three day weekend.  There's no one to help you.  He seemed so lethargic and confused that I made him call the doctor.  His family practice doctor had someone else on call.  That person took forever to call back, told him he needed to get some labs run, and then refused to prescribe the labs because she wasn't his doctor.  We debated taking him to the emergency room, but we were reluctant to do that, knowing we could wait forever, pay a fortune, and still not get any answers.

Tuesday, he headed to work!  I couldn't believe it.  By this time, his speech was slurred.  The kids told him he couldn't go because he sounded funny.  I told him he HAD to go to the doctor.  He said he would, after his 3 o'clock meeting. 

He never made it that far.  He called the doctor and she had him go straight to the ER.  He arrived at noon.  They realized that his calcium levels were extremely high (hypercalcemia) and he was suffering acute renal failure.  They admitted him to the hospital.  He called me, and I put away my painting supplies.  (Yes, I was repainting the house.) 

The next hours and day were a blur of tests, biopsies, CT scans, x-rays, MRIs.  There were holes in his bones.  His neck- his poor, painful neck- was broken.  All day Wednesday and half of Thursday, we waited for an answer.

Thursday afternoon, it came.  The kidney specialist came in and told us that he had some bad news.  Bryan had lymphoma.  The oncologist would be in to talk to us later.  He left.  The door shut behind him, and I stood there kind of shell-shocked.  I tried to go and pray with Bryan, but I don't think I really said anything.  Bryan, though he sort of heard what was going on, was too incoherent to express any emotion.

Then, the Lord helped.  The phone rang.  It was Pastor Loser.  He wanted to know how things were going.  He was praying.  I hung up the phone, and in walked our dear friend, Greg.  He had come to pray.  Neither of these men knew that we had just received a diagnosis, but God knew, and He was reminding us that, no matter how dark things seem, He's in control.

I sat there holding baby Austin, and I realized I was cuddling him close like he was my teddy bear.  He didn't mind.   My parents came to pick him up  and I immediately wished I hadn't asked them to take him.  That little baby had been giving me more comfort than anything else.

The day finally ended, as all days do.  I came home and prayed over my sleeping babies.  The next morning, I undertook the first stage of telling them about Daddy.  We prayed.  We read God's Word.

Bryan was transported to the main hospital, and he went in for surgery for his neck.  They removed the tumor that had dissolved the vertebra, and we were again blessed by a wonderful and kind neurosurgeon.  Bryan was able to sit up straight again, and the pain in his neck was better.

Throughout all of this, the prayers of our friends and family- the prayers of the saints- have upheld us.

"I will lift up my eyes to the hills-
From whence comes my help?
My help comes from the LORD,
Who made heaven and earth."
Psalm 121:1