A Possible Flare....Need Your Prayers!

Last week Dave got some test results that showed a possible flare in his Wegener's. It may be due to the tapering of the Prednisone, so he has been advised to stop where he is for a month. Right now he is at 9mg per day, and was hoping to get down to 5mg by January to be eligible for the transplant list. Evidently this sometimes happens to people who taper down on their meds. It may not be a true sign that the disease has returned, especially since he remains non-symptomatic.

He took another blood test yesterday to recheck the levels, and we should (hopefully) know sometime next week or the week after.

Today he will get his sinuses and chest scanned, to make sure there are no changes in those areas, in case the disease has returned.

Please pray that all goes well....and this is nothing more than a bit of reaction from tapering off the meds.

The specialist in Cleveland did write to me, and tell me that the blood test was only about 50% accurate in determining active disease. So we are very hopeful!!

Thanks and God bless.

Merry Christmas

Merry Christmas!! I hope you are enjoying the weekend with your families, and having fun trying to get everything ready for the BIG day!!

Today I am doing some baking with the kids and my mom. We have already made the traditional cut out cookies and the kids decorated them with icing and sprinkles. Very nice.

This morning I am making two sugar-free pumpkin pies (so I can have something without the guilt) and some Krusczycki cookies. They are the fried Polish cookies that Dave grew up loving, and now the kids love them too. Very yummy....fried dough, sprinkled with powdered sugar. What's not to love! Then we do our traditional birthday cake for Jesus. That's a tradition that we all love.

Tomorrow night my family will be here, so we will have our tradition of Tamales, beans and rice. I'll have a ham for the "gringos" in the group! But I can't imagine how anyone wouldn't love tamales! :) On Christmas Day we will do the Prime Rib thing...with all the trimmings. A very low fat week is in store for us, evidently. :)

We are looking forward to going to church tomorrow afternoon. The music and message are always so awesome on Christmas!! One of our other traditions is to read the story of Christmas to the kids before bedtime. It's nice to remember what it is we are really celebrating.

May this Christmas bring you and your family joy, peace and love as we celebrate the coming of our Savior, Jesus!

Merry Christmas!

So thankful...

On this Thanksgiving Eve (is there such a thing?) I am brining the bird, baking the yams and mixing the stuffing. I am also thinking about so many of our wonderful friends and family members who have helped us get through this tough year.

We are so thankful for YOU!! Before we lose sight of what tomorrow really is, I wanted to at least write that down.

Have a wonderful, calorie-laden, high-fat, yummy Thanksgiving!

What we've been up to....

Hello to all our friends! Wow, it's been a while since I posted anything here. There's not much going on with Dave, right now. Well, that's not true..there's still a lot going on with Dave right now, but nothing I haven't already covered. He's still in dialysis three times a week, and still waiting to get on the kidney transplant list in January.

There are some really neat things that have happened over the last couple weeks. He was able to finally wear a dress shirt and tie into work last week, for the first time in a year. It was such a wonderful surprise to have him come downstairs, all dressed up, like he used to! Davey was so thrilled! He must have hugged his dad, that morning, for five straight minutes!

With all the mess that has gone on with his health, I am proud to say that he was acknowledged within his branch for having a 20% increase in his business for the last quarter. Ladies and gentlemen.....he's back!!

We had a fun Halloween. David was a soldier, and Joey was Spiderman ( the black costume). They looked so cute! Dave did Davey's camo make-up and he really looked authentic!

Now I am trying to plan Thanksgiving, and figure out the particulars. While I'm no Martha Stewart, I haven't killed anyone (as far as I know) with my cooking. But my mom has started to drop hints that she wants to go out! Go out??? On Thanksgiving? I'm getting a complex!

Oh yes...I turned 40 last week. I know, I don't look a day over 30, right? RIGHT!?!?! This birthday was a tough one for me. But I made it to the other side of the hill; kicking and screaming all the way, and surprisingly, it really isn't all that bad. I got a beautiful necklace from Dave and the one present I REALLY wanted....I was actually carded when buying cough syrup this week! OK, it was done half jokingly....but I don't care, it was awesome!!

Trying to make up for the lack of energy Dave had last year and the inability to put up our outside Christmas lights, I'm afraid we might be giving Clark Griswold a run for his money, this year! Dave has started planning what he is going to do outside, and it either is going to look amazing or we're going to end up with a letter from our homeowner's association! Either way I am just thrilled!

I guess that's it for now. Thanks for the emails. I have taken on a few more responsibilities this year; I am room mom for both boy's classes, doing a Tuesday night Bible study, and Chairing the Drama/ Music Booster club at school. What can I say, life is way better when I am busy!! I hear it keeps you looking young!

Update

It’s been a few weeks since the biopsy, and Dave and I are coming to terms with the fact that no matter what, he needs a kidney transplant. We are now going forward with two different locations; UCLA and Scripps, in San Diego. One of his nephrologists told us that you can be on more than one list, as long as you are in a different “zone”.

There are a few people who have requested to be tested to be his donor. I’m still going to go forward with my plan to donate, if everything checks out with the testing. My brother wants to be used as a last resort, and we have a couple friends who have offered to be tested, too. We are trusting God that something will work out in this area. Thinking of Dave going through dialysis for another 7 years makes my heart break! It’s so hard on him…and doing it three times a week makes him physically exhausted.

He’s been through so much! He has remained so faithful during all these months. He is my hero in so many ways!

My new endeavor is to get word out to everyone we know about becoming an organ donor. It’s so easy, and all it takes (in CA, anyway) is a signature on record with the Dept of Motor Vehicles. There are so many lives that can be saved by just one person!

Also, I have purchased some awareness bracelets that I will be handing out or sending out to all our friends. This is just another way you can outwardly stand with us on this journey of getting through kidney failure and finally finding a matching kidney donor for transplant.

Be looking for those bracelets. :)

Biopsy

I think most people who actively read this blog have been sent an email, but in case you didn't receive something from me tonight; we did get the biopsy results late this evening. It looks like there is complete loss of the kidneys. No hope in them returning to function on their own. We are very sad, and sort of shocked, to be honest. It's hard to think that Dave will have to go through this awful dialysis until a perfect match is found. We are also praying that the Wegener's doesn't flare while we are waiting.

It's a hard night, and one which we will have to pray our way through. We are extremely thankful for all of our friends and family, and all you prayers.

God will get him and all of us through this.

Had a bad day....

No word yet as to the biopsy results. We knew that it would most likely be late in the week before we heard anything, but we are both a little anxious.

Maybe it’s my Catholic schooling and I still have the embedded need to confess. Maybe I’m just someone who needs to be heard. Either way I wanted to share something that I hope might help others going through difficult times

I have been going through a really confusing time, lately, thinking about the unfairness of Dave having to go through all of this. Ok, the unfairness of me having to go through all of this, too. If you have known me a while, you know that I am essentially a good person. Not without many, many character flaws...but a pretty good person. Sometimes, boringly so.

Well, I sat here the other day and just got really mad at God. Like, “Hey God…I’ve been faithful and righteous and all that stuff. I’ve helped the poor, and I’ve told people about you, and I go to church and I read the Bible, and I try to live my life as an example of Christ’s love. So…why? Why have you turned your back on Dave, and in turn made my life so hard?....” It went on, but just know it never got any deeper than “woe is me.”

What a whiney brat, huh? Well, I was. I was acting the exact way a teenager acts when they get mad at their mom or dad. I was acting like a little, spoiled brat, and what’s worse is I knew it! But I kept going, anyway.

The thoughts ran wild. Like, I never did drugs or fooled around or stole anything. Now, admittedly, I labeled these things, in my mind, as “fun stuff”. Poor Lisa never had an ounce of “fun”. God is punishing ME and Dave…and yet I (“we” but mostly “I”) don’t deserve it. (Appalling behavior, isn’t it?)

The rest of the day pretty much sucked. Then I had lunch with my mom. She listened to my rants, and held my hand, and didn’t judge me. Thank God for our moms! She also said something that I remember her saying when I was little. She said, “No matter how hard things are in our life, there is always someone, somewhere going through even harder times.” Then it hit me. She was right. I have a friend who is a caretaker to her mom, as she goes through breast cancer treatments. Going through the chemo and losing her long, beautiful hair. Not even knowing IF at the end of all the treatments her mom will pull through. We have a friend who just lost a loved one through suicide. The utter despair that he must be going through. It makes our little problems pale in comparison.

After I sincerely asked for forgiveness, I emphatically thanked God for all His blessings. That through this entire ordeal, Dave is improving. He has the real opportunity to remedy his health problems through a kidney transplant. He CAN go to dialysis, and then live a mostly normal life until the transplant. He isn’t dying! We are praying that the biopsy confirms his remission. But all the doctors seem sure of that. He has no lung or heart involvement…that’s such a blessing. As for me…I have my health. I have the love of a wonderful husband and two beautiful kids. I am truly blessed. I’m tired….no doubt, but I am blessed!

The very next day I received a beautiful card from a friend of a friend of a friend. Someone, from across the country, who has been praying for Dave and our entire family. Her words were so thoughtful and encouraging. She said that God has NOT left our side. He is here with us. She said that our emails have encouraged her and strengthened her faith. She said that our testimony, when all of this is over, will be what God uses to bring others closer to Him.

What amazes me is that God knew that I was going to have this meltdown, and then knew the timing of her letter would be perfect! How awesome is that? That letter was like a “burning bush”….a validation that God is God…He loves me inspite of myself, and knows that I needed encouragement at that very moment in time.

I guess part of that testimony my new friend wrote about has to include the hard days; when we are angry with God, and then are allowed to see with new eyes, how very much He has blessed us. I guess that’s why God doesn’t just smack me down (which I totally deserved) when I start acting like a spoiled brat. It’s all part of growing in Christ. And growing is painful sometimes.

Thank you, my friends, for letting me share a very bad day with you. It turned out Ok. I grew in the knowledge, once again, that God IS here. He DOES listen. That He loves me inspite of my foolish behavior, and is here to comfort me when I come back to my senses!

Toxic Toys???

Those words should never be uttered together…ever! As a parent I am angry that the toy industry allowed this to happen. As a consumer I am angry that a few cents appear to be more valuable than a child’s health and wellness. I am just plain angry! This should not have happened. Not here.

In an age where more and more children are being diagnosed with neurological disorders than ever before, I am convinced that there is something, probably fixable, that is causing this to happen. I wonder if chewing on some lead-based paint might have caused some of these conditions to manifest in our children.

There has been a strong belief among several educated people, not affiliated with the pharmaceutical industry, that mercury found in our children’s immunizations could have had an adverse effect on neurological development. There should be a study on the ever increasing amount of lead being digested by our toddlers!

The toy industry will have to earn my trust again. I’m fortunate in that my kids are past the “oral” stages of putting everything in their mouths. But chances are very high that this has been going on for a long time. So, it’s a real probability that my kids chewed on their share of lead, too.

We need guarantees that the toys our children play with are safe. In every way! Until then, maybe moms should go back to giving their little ones wooden spoons, Tupperware and pots and pans to play with. At least those items shouldn’t adversely affect brain development. Let the toy industry feel the pain in what appears to be the only place that matters....their bottom line.

Update on Dave

We just got word that Dave is scheduled for another kidney biopsy, next Friday, September 7. Please keep him in your prayers.

We have to leave it in God’s hands now more than ever…we don’t even know what to pray for this time around! If they find more disease, he will have to go back on chemo. But he will also have another shot at getting his own kidneys to function again. If they find that his kidneys are just too scarred to ever return to normal function, then we will just continue on with the transplant process. Dialysis remains the constant, either way.

Obviously we need prayers that there are no complications with the surgery. It would also be nice to not get anymore surprises, this time around.

The surgery will be at Mission Hospital, and he should be home that night. From our last experience, I think it takes about a week to get pathology reports back.

It’s been a tough road. Thanks for all the prayers and all your calls and emails. Knowing you guys are there is very comforting for both of us!

***A special thank you to our new friends from Illinois! Kim has been so awesome at getting our prayer requests out there! Thanks for the cards, and all your kind words of encouragement!

Got Kidney?

We just got back from UCLA’s kidney transplant orientation. I somehow feel like a little kid on an Easter egg hunt, all of a sudden!

They told us that the average wait for a kidney is 5 – 7 years! There are about 80,000 people in the nation waiting for organs. Neither of us can imagine Dave having to go through dialysis, 3 times a week, for another 5 years. So I am really hoping that I can be his match. My brother is also offering to be a donor, and will be tested when he comes back to California.

We will be meeting with the transplant team in a few weeks, and then be given our own nurse coordinator. I guess we’ll begin testing at that point. It will also be nice to have someone I can bounce stuff around with.

As for the process of being a donor or finding a donor, it’s sort of comical. They told us not to offer to pay anyone for a kidney (like we were going to take an ad out in the paper). Ok, I guess I could see how offering someone a little “bonus” might influence his/her decision to donate. Although, “altruistic” measures of finding a donor are “ok”. So, I guess if we happen to run across a person who has always wanted to be a live organ donor, but who doesn’t want or expect compensation, AND who passes the psych part of the evaluation….we’re golden! Have you ever met anyone who has always wanted to donate an organ, and was just looking for the opportunity??? Yeah, me either.

Dave is also going to have a bunch of tests run this week, partly due to the evaluation process. The other reason is checking kidney size, and getting ready for the inevitable biopsy.

Yes, we are still going to pursue a biopsy, since we want to make sure it wasn’t something acute that happened early this year to make his kidney function go crazy. If it’s truly the kidneys that are too scarred to come back, then at least we’ll know. On the other hand, if there is something else we can do to get function back without transplant, we will.

Thanks for all the emails, requesting updates about Dave. I hope this gets you guys up to date.

My Space

My brother, Ric came out for a visit this past week. We loved having him here, and the kids had a ball with Uncle Ric…swimming, playing games, and watching all the movies that most single, 35 yr old men probably wouldn’t have in their own DVD collection! A lot of animation! We saw some CG Penguins, some talking vegetables that taught values, and SpongeBob. Not a Simpson’s episode in sight!! He was such a good sport, nonetheless!

While he was here he told me I should get a My Space account. He showed me his, and how cool it was to keep in touch with friends. Some of his friends looked a little weird…lots of girls in bikinis. I guess that’s ok when you’re single and looking? I haven’t done either in many years, so I guess it’s what’s “normal”? Yeah…ok.

I get this My Space thing up and running. For any of you who know me, you know how completely lame I’m at computer stuff. Ric got all those genes, and I got the ability to look at blood and not pass out. It was an all or nothing thing with us, I guess. Anyway, I have two friends so far….Tom, the My Space guy; who is everyone’s friend, and my brother. After looking a little further it became evident to me that no one that I regularly communicate with has a My Space account! Why is that? Are we too old? Nah, couldn’t be!

After taking mild abuse from Ric for my plain page, and having none of the usual (read: necessary) music playing in the background or video thingy that most people have. I figure out how to add some stuff. I added music from U2. I downloaded what I think is a cool layout for my page, but I guess I didn’t do something right, since it’s still plain and white. Surprise, surprise!

At this point I’m not sure if I’m ready for My Space. I mean, I don’t totally get the benefits of keeping in touch this way, when I have email and even the much more antiquated telephone. Golly, do I sound as ridiculously old as I think ?? Well, I’ll keep my page up, just in case anyone wants to be my “friend”. But no naked people please. No bikini people, either. I have to have some standards!

I think my address is www.myspace.com/lisacstrnad

Our strength in Christ...and our beautiful son Joey

In 2 Corinthians Paul speaks about how he begged God to take away his physical pain and suffering, but then how God said to him, “My grace is sufficient. I am strongest when you are weak”.

For me and my family, this year has been so full of struggles, both physically and spiritually. I’ll be honest and say that there are those moments I ask, “why?”. But I know that while God has allowed some suffering to occur in our lives, He has been there, beside us the whole time. I know that when I am at my very lowest and weakest, it IS His strength that somehow gets me through.

I hesitated to post this, since I am prideful about only a couple things in my life…my children being one of those things. As their mother, I consider them both to be highly intelligent, compassionate, loving and probably as perfect as two humans can be. Two wonderful gifts given to me and Dave to raise, instruct and protect until they are old enough to move on. Protect…..

It’s with a heavy heart that Dave and I took Joey to be evaluated for developmental delays, just this past month. Both of us knowing what the diagnosis would probably be, but hoping we were wrong. Not wanting to label our precious child, like society insists on doing these days. But if not one label, then it would be another…maybe a worse label. “problem child”, “under achiever”, etc…

So we went and met with a highly recommended pediatrician. She observed our little one, and just like we had dreaded, he had a rotten morning at home. Making things even worse at the office appointment. Figures! But it was a good evaluation. A morning where she saw him at his worst. Sometimes that’s better for a doctor to see.

We got the diagnosis we feared….Autism. The words still ring in my ears! While it was not a surprise, I felt like someone had grabbed my heart with two hands and ripped it out of my chest. Dave and I felt a deep sense of grieving all weekend. That was then accompanied by tears, then anger, then fatigue. Our precious child....why, him?

But once again, God has given us a mission. For some reason He thinks enough of our parenting skills to bless us with a child who needs a little extra. Once again it is through our sincerest weakness that we are finding strength in Him.

Joey will be fine. He is considered to be "high-functioning", so school will be enhanced with other special therapies to bring him up to where he needs to be developmentally, socially and in language. It will be OK. He is testing well in intelligence thank God. There is no mental deficiency present. We are blessed by that.

Like Paul said….”When I am weak, I am strong”. I get it, now.

Fish Fest 2007

I had such a fun day yesterday at the Fish Fest, out here in Irvine. I worked with the people from Big Idea (VeggieTales), getting the word out about the upcoming Pirate Movie, and then taking the characters around the park, so the kids could meet their favorite veggies up close and personal. I just love watching little faces light up when they first see a bigger than life Larry or Mr. Lunt! Hugs and pictures, and lots of happy faces. It was a good day for everyone!

It was also HOT. Ok, by California standards, it was hot. Friends from Arizona or Las Vegas needn't reply...I know I'm a whimp. :) I was with some guys from Nashville who were laughing at my idea of humidity! (But for all my local, fellow-whimpy friends...it was pretty steamy.)

Dave's been doing really well. He looks so great, again. We are still very hopeful that some dialysis might help his kidney function come back. His numbers seem to be improving, so you never know. Personally, I am just enjoying having my husband back. He was so sick for so long. We both feel extrememly blessed with the outcome, so far. God has truly allowed us a glimpse of what someone with a life threatening disease goes through. Our empathy for others will forever be greater.

I'm trying to plan a party to celebrate Dave's remission, but he wants to do something for my 40th b-day. So, we may have a big party celebrating both. Whatever we do we'll have all you guys over, lots of food and the usual karaoke torture!

Ok, I'm off to the pool! Have a great week!

VBS

It’s been another fun week here in the burbs of Orange County, because VBS season is upon us!! This week the two boys are attending the VBS at MV Church of Christ. Awesome church, awesome people!! I decided to work this week, too. So, I’ve had the pleasure of leading a group of 7, 8, and 9 yr olds around some neat stations. I just LOVE VBS. It sure is a lot more action packed than the days when we had only the church organ, and flannel board stories!

Next week the kids have Summer Spectacular at Saddleback. It’s so huge!! Like nothing I have ever seen. We’re so blessed to have Jana Alyra perform everyday. She is a wonderful entertainer!! The kids adore her!

Having a fun week !

And so it begins

This week Dave began his dialysis every other day. It’s been tough to get used to, and surprisingly it comes with some side effects, like headache and nausea. I was hoping he’d actually feel better after getting it done, but he says he feels about the same. Not that he felt too awful before it started!

He is definitely in remission. His rheumatologist saw him on Friday, and confirmed it. So, at this point we are keeping most of our attention on his kidney function and just covering our bases by looking into several kidney transplant centers in Southern California. So far we like: UCLA, Cedars of Sinai, Loma Linda and possibly Scripps in San Diego. He can be on more than one list, as long as it’s not within the same general area…so we’ll have to choose between UCLA and Cedars for the LA area.

I am the only person willing to donate, at this point. So wherever we go, I will have all the tests to see if I’m a match and can be his live donor. I shouldn’t say I’m the only willing person….his dad and my mom both have offered, but they are both over the age 55, which is usually the cut-off. So, I’m it, hopefully. If he can’t get a donated kidney, then there is a long waiting list, based on several factors. It would take years, sometimes.

We’re sure that God will provide. He’s blessed us so much already!

Missing...one wallet!

I waited to post this, since Dave’s remission was and IS the biggest and best news we could ever had hoped for. But something did happen last week, to me, that wasn’t all that pleasant!

The kids and I were at the mall on Friday afternoon. I had promised them a trip to Build-A-Bear if everyone was “good”. So we ended up there, on a mission to make a bear for their dad. It would be from his boys, encouraging him to feel better soon. So we proceed to choose the bear, fill the bear, put two kissed hearts in the bear, and then give the bear an “air” shower. The boys chose Mr. Bear’s clothes; a fisherman’s outfit. It was actually a tie between Spiderman and Superman, so mom had to step in and offer a third possibility.

After we bought all the stuff, I took the kids to a front table, so we could get him dressed, before taking it home to dad. That’s when it happened!

I had my purse and another shopping bag on the floor, between my feet. But someone literally stole my entire purse from under my nose! I still don’t know how they did it. You hear about stuff like this happening, and I guess it really does.

We found my purse an aisle away, with all the contents (phone, IPod, Joe's epi-pens & keys) still in it…everything, except my wallet! Man!!! Like most moms at the end of the week, I was cash poor. I think I had about $1.50 total cash in there. But my credit cards, some gift cards, my driver’s license, and my Disneyland Club 33 card…they were all in there. For anyone who has had to quickly cancel their cards, it’s not fun. Try doing it at the mall, holding the hands of two boys, while waiting for the sheriff. I am a multi-tasking aficionado! :)

It was a good lesson for my oldest, who’s 9. He is at the age where wandering off sometimes occurs. I have told him that while most people are good, there are people out there that we have to protect ourselves against. I hate that we live in the kind of world which some of the stuff I did as a kid, I can’t let my boys do. Living in the somewhat plastic reality of south Orange County doesn’t help matters. Life is good here. It's clean and pretty, and perpetually new. We live in the 3rd safest small city in the nation. But petty crime does exist. Abduction does exist. Child molestation does exist. I hate it, but that doesn’t make it go away. It was a wake up call for all of us.

We haven’t found my wallet or any of its contents…no big surprise. But I have my two most important , irreplaceable treasures. Safe and intact; my boys!

Remission.....At last!!

I am so thrilled to post this! We got Dave's latest test results yesterday, and it shows that the disease is no longer active, he is in REMISSION!!! Praise God!

This has been the hardest thing we, as a family, have had to go through. With God's grace, maybe we won't ever have to go through something like this again.

The last 10 months have been really hard on his kidneys. So, while the Rituxan infusions still may work at getting his kidneys to function again, right now they are only functioning at 10%. he will begin dialysis this coming week. But we are holding firm that God's in control of this situation, and that His timing is perfect.

The great thing about remission (besides the obvious) is that now his other vital organs will be safe! Many Wegener's patients experience life threatening lung, heart, and brain conditions that can not be treated effectively. So we are beyond relieved!! Also, since he is in a remission state, if he needs a kidney transplant, he is eligible now.

Thanks for all the prayers these many months. We are positive that without prayer, the results of the this situation would not have been so great!

As for me, I'm floating, and when my feet touch the ground, I'm dancing!! Thank you Lord for healing my guy!!

Back home tonight...

After spending the day at UCI, getting what Dave calls “spigots” put in his arm and chest, he’s back home tonight! Thanks for all the prayers. As usual, God led us to a great doctor who did a beautiful job on the surgery. The nursing staff was great, too.

So now he’s ready to begin Dialysis as soon as he needs to. We’re waiting to hear from the nephrologist as to when he thinks starting would be advantageous. While we both have mixed feelings about starting dialysis, it just makes sense that he’ll feel better after he gets some of that crud cleaned out of his blood. Taking a lot of the work off of his struggling kidneys.

We’ll keep you all up to date on the happenings. Thanks for all the support!

Pre-Op Today

Dave saw Dr. Kubaska, a vascular surgeon at UCI today. He will go forward with surgery on Thursday to place the fistula and a perma-line (which ironically is a temporary line) so that dialysis can begin right away, if needed.

Today consisted of all the pre-op stuff plus a fun new procedure called “vein mapping”. He left the hospital with purple marker all over his arms…looking like a map!

His blood Creatinine level is still rising; a few tenths of a point, but still rising. So we’re both very glad that this procedure is happening. At least now, if things get to a dangerous level, he can go right in for dialysis.

If you are reading this before Thursday 1pm, PDT….please say a little prayer that all goes well during the short surgery. Having any type of kidney failure puts you a greater risk during any procedure using general anesthesia. God is in control!

On a lighter note; have fun at your 4th of July celebrations! We are going to have a little get-together, ourselves. BBQ a few burgers and invite the neighborhood kids over for Dave’s annual pyrotechnical extravaganza! Should be fun. We need a day off with some fun!!

News...

For everyone who has been praying for us, thank you so much! I have a little praise report:

I talked to the Rheumatologist , and found out a couple things that gave us some hope. First, the Rituxan Infusions Dave took will take about 4 months to show true e and complete effectiveness. We are at about the 7 week marker, and one of his blood test values that show active disease IS actually coming down….a great sign! Plus, aside from the side effects he gets from tapering off the Prednisone, he is feeling good. That is a HUGE sign.

The doc said that YES, the meds could still help heal the kidneys, but it would take a bit longer to achieve that effect. So, while he may have to go on dialysis for awhile, his kidneys could very well respond to the Rituxan treatment a couple months from now. That is awesome news!!

Right now, we are not going to worry about transplant. Dave will check his kidney function every week, and get ready to start dialysis (seeing the vascular surgeon this week, etc.), just in case. But we also believe in miracles of every size. God’s timing is different than ours, so whatever direction we have to take, its fine. It is a scary thing walking in faith. Before this, I can tell you, I have never done it. For some reason, when we are at the lowest, He gives us a dose of Hope. Throughout this whole ordeal God always shows us a little light.

Thank you for your love, and prayers!


***Awesome Verse! God IS faithful!!

Facing the spiritual battle (sin and/or discouragement)

Finally, dear brothers and sisters, I ask you to pray for us. Pray first that the Lord's message will spread rapidly and be honored wherever it goes, just as when it came to you. Pray, too, that we will be saved from wicked and evil people, for not everyone believes in the Lord. But the Lord is faithful; he will make you strong and guard you from the evil one.… May the Lord bring you into an ever deeper understanding of the love of God and the endurance that comes from Christ.
2 Thessalonians 3:1-5 NLT

Fishing

It's been almost nine months since Dave has taken Davey fishing. He just hasn't felt strong enough to carry his pole down to the lake's edge. Today he finally felt good enough!! Kidney function aside, this is a great sign that the Wegener's may be getting into remission! The lab tests are so vague, and can continue to fluctuate. We needed to see this! Thank you, God!

Update on Dave

I have been dreading this letter for awhile. But as circumstances look at this moment, Dave will undoubtedly need dialysis very soon. His kidney function continues to get worse. The biggest issue is finding out for sure that the Wegener’s is in remission. This would allow us to proceed with the kidney transplant, as well. His Nephrologist thinks the disease is in remission. This based on his other lab work vales that don’t seem to be deteriorating. How vague is that? He’ll see the Rheumatologist in a couple weeks. There doesn’t appear to be any need to debate the need for dialysis. A value is a value. It stinks! People can live a long, full life on dialysis. But we HAVE to get this disease in a remission state before proceeding with other life saving treatment.

Many of you who are my friends know that I have a tendency to hold too much in. Strong on the outside and falling apart on the inside? Well, the other night I had what Beth Moore calls a “pit moment". I was yelling at God (I have never yelled at God) and sobbing; just a complete mess! “Where is the glory in all of this for you?” I yelled. “Why???????” It brought me to my knees in a complete moment of weakness. Totally uncharacteristic of the Lisa so many of you know. But it was in that moment that God revealed to me that I was right….I can’t take anymore. But He can. In my weakness He is glorified! I am so scared right now. I am not strong in any imaginable way. I can’t see the future, and I hate that Dave is going through all of this NOW. I hate how our lives as a young married couple have changed so drastically (is it ok to say young at 40??)! All I know, for sure, is that somehow we will be OK. I have no idea how God is going to get us through this, but He will. It’s not really my problem to worry about (Ok…I’m still working on that one, give me a break)! But I know that I’m not supposed to worry about it.

I’m going to start researching the BEST places for kidney transplants. Plus looking into the pros and cons of getting a second biopsy. From what I have researched, it will show if there is active disease. If there is active disease, our plans will have to change a bit. It will be a while to get everything lined up. Once the dialysis begins, we are also praying that maybe it will clean his system to the point of making full renal recovery possible. While statistically that is a remote possibility, all things are possible with God.

Please continue your prayers. I know all of this is really, really scary for Dave. Pray for my boys, too. All of this has been hard on them. David (my oldest) is especially worried about his dad. Being that he’s only 9, we try to keep all the scary stuff away from him, but he still knows dad isn’t well, yet.

Thanks for the prayers!

Got a New Car !!

....and it's NOT a minivan!! YAY for me!!! After going through the last several years in a mini-van, I finally have graduated to a nice SUV. I can't tell you how happy I am. It's an Acura MDX.



First rule....no McNugetts and fries allowed to be eaten in the car. The kids are completely lost with this rule, of course. But I am hoping to keep it looking clean and not a kitchen -on -wheels for at least a few weeks.

The technology on this thing is insane, too! It came with three huge manuals, and of course I haven't the time to read them, so I am still an hour behind on my clock. But it has this cool voice activated thing (I don't know what else to call it... I know it has a name). Anyway, I press a button and tell the car to do just about anything, and then it repeats my command and DOES IT!! Is that NOT the coolest thing?? If only the children came with this button. The glitch is when the kids are talking in the back seat and I am asking it to turn on the CD player (or whatever) , and it hears something like "You want the nearest parking garage?" What?? The sad thing is, I haven't a clue how to turn the CD player on without using the voice thingy!

I even have a sun/moon roof! If you don't live in So. Cal, don't hate me, but I went driving down PCH and just loved having that sun and ocean air come right in. Now I remember why I like living here.

Ok, sorry for bragging. But I am just so thrilled with my new baby. I had to share.

(Picture coming)

Dave's 42nd b-day is tomorrow. Happy birthday, sweetheart! xxxooo

This week

It's been a very full week. First, my mother-in-law has been released from the hospital! What wonderful news for all of us! She is progressing nicely with her therapy and catching up on some much needed sleep, after being in the hospital for about a month. Thanks for all the prayers.

The big news in my life is that my mom and dad have moved back to Southern California. They left the area for my dad's business 18 years ago. I was just 21 back then. After years of weekend visits and missing several holidays with my family, they are back! My poor mom did have to downsize from a three bedroom house to a two bedroom apartment, so there are boxes stacked on top of boxes right now in their place! Should be a fun week for all of us. Just having them here is such a blessing for me. I've needed the support so much in these last several months!

To all the guys from Saddleback Church's Men's Ministry...You are awesome! Dave has really enjoyed talking to you, and getting the emails. He has missed Thursday morning study so much. But it's tough for him to get up and get moving that early. Every week he tries. He misses you all very much. Plus Kenny is like his spiritual mentor, so he really needs his "fix" of God's Word delivered "guy style".

Dave's been feeling really good this week. PTL!! His birthday is on Wednesday, so we'll be spoiling him throughout the coming week!

To all the dad's out there, here's hoping you have a fun, relaxing Father's Day weekend!

Update on Dave

It's been almost two weeks since Dave's last Rituxan infusion. He's feeling better. It's still hard to distinguish between the way the drugs make him feel and the disease. The extreme exhaustion, the wacky blood test results, and the obvious physical changes have routinely been blamed on the Prednisone. He has started to taper down, so we are both hoping he will feel better as his dosage goes down.

Dave saw the Nephrologist yesterday at UCI. We are disappointed that his kidney tests are still showing significant loss of functionality. In fact, he has been given a referral to a vascular surgeon to get a fistula placed in his arm, should he need dialysis.

While that was a little hard to hear, the doctor told him that we won't know for sure if the Rituxan has worked for another 2 months! His kidneys could be healing but they also could be too scarred to ever regain complete function. It would essentially mean that Dave might need a transplant in the near future, and in the interim period be on dialysis. The main objective is to get the Wegener's into remission, so it won't hurt any other organs. Kind of like the old "we may lose the battle, but win the war" metaphor.

In the meantime, he is going to start working out again. building up the muscles he has lost by taking the Prednisone over 6 months. Walking, and a bit of weight lifting...done slowly, will hopefully give him some positive results. We're both looking forward to being active again. I sort of fell into the sedentary lifestyle right along with him! Not good!! Especially being a stress-eater! But all of us will enjoy the pool and some nice walks this Summer.

Anyway, please keep him in your prayers. We still are believing in God's healing! We are holding firm that God is in control, over everything. So no matter what is thrown our way, it will be OK.

On a different note...I have been told that there have been some problems in posting comments here. Sorry, I don't know why or how to fix it. Always know you can email me directly, anytime. lcstrnad@aol.com

Thought for today.....

God will catch you:

There is no one like the God of Israel. He rides across the heavens to help you, across the skies in majestic splendor. The eternal God is your refuge, and his everlasting arms are under you.
Deuteronomy 33:26-27 NLT

What a sense of comfort this verse brings to me! I read it this morning, and felt God's arms around me and my family. So....I wanted to share it with you, too!

Great News about Mother-in-law

Thanks for all the concern for Dave's mom, Rosalie! She is still in ICU, being watched and monitored...but she has responded very well to the treatment. At this point there doesn't appear to be any paralysis or motor skill impairment. Praise God! They were able to get that second clot out, too!

Please continue the prayers, as they will be closely monitoring her brain function the next few days.

I really want our boring lives back!! Boring, mundane, and very usual...sound lovely!!

Round Two Over

Thanks for the prayers and well wishes! Dave had his second infusion yesterday, and made it through perfectly fine, PTL !!

We got to UCI and were fortunate to get a private room. Which was so much nicer than being in the bay with everyone getting their treatments. It allowed us to have a few minutes to talk and pray together, in private. We had our little portable DVD player and got to watch a movie...one that wasn't even rated G or animated! We even had lunch together. OK, it was hospital cafeteria food, but it was nice to just be together.

I always thought that I had been given the gift of empathy towards sick people. I mean, that's one reason I pursued a career in the medical field. But seeing, first hand, the Oncology ward brings things to a new perspective. I think the saddest thing I saw, was a woman who obviously had Cancer, getting a blood transfusion, while fighting on her cell phone with her insurance company. Wow! That was really something. This poor lady is fighting for her life, literally, and is trying to get her treatments paid by her own insurance.

As we left the hospital, both of us just prayed that this was it. That Dave's battle with this disease would be over in a few weeks. Neither of us is sure what lesson, if any, we are supposed to have learned from all this. But we have definitley gained perspective on things. Health is something most of us in our 30's or 40's don't spend a lot of time thinking about. I mean, yeah, we try to order the fish over the beef. Don't eat too many deserts, sure. But I'm talking about the really BIG picture.

I think our faith has been strengthend as well. It was really hard for us to ask anyone for prayer. While we were so honored to be asked to pray for someone else's needs...we hesitated at bringing our needs out to others. So many of you have been our life line these past months. When I thought I was bordering on being the biggest pest in the world, so many of you would write to me and just be so supportive!

Thanks for all of it. All the love and friendship and support. We just continue to pray that within the next few weeks we can celebrate something really BIG!!

2nd Infusion scheduled for tomorrow

Tomorrow (5/18), Dave will be getting his second and hopefully last infusion of Rituxan. While there is less of a chance to have any severe side effects, after making it through the initial round ok, there is always a risk. He did so well last time that we are expecting to give you an even better report on Saturday!

Please keep him in your prayers tonight and tomorrow. We will see his Rheumatologist next week and find out more about the follow up and when his blood tests should show signs of a possible remission.

His last blood test, taken this week, shows no improvement in his kidney function. Actally showing a slight increase in creatinine, but not enough to make the renal function % any different.

We think the blood thinner issue has improved. He will get that tested today.

Dave was scanned on Monday to see what was going on with that clot. It is still there, but it's smaller. It has even moved DOWN his leg. So that's really good. We're not too worried about it traveling upward now.

Thanks for lifting Dave up in prayer. We are hoping that this is it. God willing, we can announce that he is in remission and has improved kidney function within the next few weeks!

Astrological Junk....

Most of you who know me, know I don't buy into all that astrological stuff. It goes against my faith. My cousin wrote to me and was concerned that maybe I added my "sign" to my profile. I didn't. It all is automatic with this blog thing. The server I use knows my birthdate, and it connects it to my astrological sign...automatically. I think. ?????

I really hope you guys aren't offended. Please know that I don't buy into any of it. If you know how I can edit it out, let me know.


Thanks!

First Post...and some updates

Dave and I have been blessed with so many friends and extended family members that want updates on his condition, that I thought this would be a better venue to get a daily account of the happenings in our lives; specifically in Dave's recovery progress. So, please check in as often as you would like. I am not brilliant when it comes to stuff like this, so if any of you computer-types have suggestions, I will gladly listen!

If I need to request prayer for a specific day...I will still email our usual prayer warriors!


As of today, May 14, the newest piece of medical hoopla is that the Coumadin that Dave was taking to thin his blood, is working a little too well. We thought that when he started bruising from Joey sitting on his lap (our 40 lb son), there might be an issue with his clotting time. After a weekend of not getting any answers from the brilliant doctors in our group, we decided, on our own, to stop his Coumadin. God is always watching out for us! Even after missing a whole dose yesterday, his clotting time is pretty bad. His blood is too thin. So there could have been a risk of internal bleeding, and further worsening the already bad anemia had he not stopped the meds on his own! Man...why are we paying these guys, again?

My poor husband looks like he was in a fight...and lost!

Oh...and to top off the morning, I got a ticket! I didn't wear my seatbelt after leaving Davey's school, and the OC Sheriff got me! Is it Monday, or what??