All quiet on the western front

Today David had a 6 week since they changed his dosage appointment. He only had blood work (9:30am) and a Dr. visit (11:30am).

Yea! He is doing great! Thyroid function good. Kidney function good. Gastrointestinal problems under control. No feet pain. Appetite good. 10 pound weight gain. Yea yea yea!

Thank you God and thank you for praying!

The ONLY concern today is his blood pressure, which is up. So they have changed those meds. The Dr. feels confident it will lower his bp.

So we go back in 6 weeks for another scan. As long as the scan shows no progression, he will receive another vaccine. And we won't have to go back for 12 weeks! Now. Every time I say blah blah 12 weeks, something happens and we have to go back in 6 instead. So, shhhhh. Don't tell that I said it!

Please continue to pray that:
1. the increase in meds gets the bp under control
2. The rest of the side effects stay away
3. No progression!!!

The Dr. was interested in David's horse and riding etc, so they had some nice shop talk. We all hugged and wished each other Merry Christmas. We were on the way home by 2:00!

Meanwhile, back at the ranch, Meredith has talked me into a new cat. She's a sweetie. Her name is Millie. Marcey (the dog) wants to smell her. Cutty (the other cat), wants to kill her. Fun times. Also, Abigail just finished her first semester at Texas State! Here are some pics for your viewing pleasure!

We wish you a wonderful season celebrating the birth of Jesus. And some Santa fun too!

Please continue to lift up Greg, Mary, Ty, Laura's mom, and Holli. Stupid cancer.

And a dear family, James, Cheryl, and Emily.

Thank you for loving us!

Happy New Year!

Yesterday marks the one year anniversary of when David was diagnosed. So today is the start of a new year for us. We are glad to put this year behind us and determined that this year will bring more happy than sad.

This past year has been filled with so... much. Most of it I would gladly have skipped. Yes, we have learned a lot and we have definitely grown from this whole experience. Would I go back and never have experienced it? HECK YEAH!

But there is no going back and we have so much to be thankful for.

Thank God for walking every step of this journey with us. I really do not know how people with no faith get through these things.

Thank you for all the love and support you have given us. You have shown us so much love. Your prayers have carried us. I am so grateful and so humbled.

Please continue to pray. The side effects are much less since David's meds have been reduced. That is a big praise! Pray they are still having a positive effect. We go back on December 11, but only for blood work. There won't be another scan for 6 weeks from then!

Thank you, thank you, thank you for loving us.

I really just have no other words except Happy Thanksgiving and Happy New Year!

Another fun filled day @ MDA

Yea for MDA. You may think it will be short stay but it will not be. Ever. No matter what. So, stop thinking that!!!

Yesterday David had blood work and his chest/abdomen scan. His Dr. appointment was at 9:30 this morning. Since we really do understand that time means nothing in the world of MDA, we thought if we made it out of there by noon it would be great! Hahahahahahaha.

The scan came back stable. So no more shrinkage, but no growth. This is good. So he can stay on this med (Inlyta) and will remain in the study. Hopefully for a long while. Also the foot pain he had, has resolved!

The bad news, but it's okay, is some of his blood work was wacky. Thyroid, potassium, magnesium, and creatinine were all slightly low or high, whichever is wrong, that's what they were. This is because:

1. David has been having a lot of intestinal issues with the Inlyta. As a result he has lost about 20 pounds. In 6 weeks. That would be great for me! But not for him.

2. HE DOESN'T DRINK ENOUGH WATER. Why am I yelling? Because I keep telling him HE'S NOT DRINKING ENOUGH WATER. And I was right. Yea me.

So they are giving him a week break from the drug. And when he starts back up, they are reducing the dosage from 10 mg to 6 mg daily. Hopefully this will give his body a break, allow him to get back on track eating and pooping regularly, and then be a dosage his body will tolerate better. But still keep the nodules stable.

They also gave him a couple different drugs for nausea and diarrhea. 

Yea! Now it is about noon! We still have to wait 30 minutes to check for reaction to the vaccine and pick up the prescriptions.

We go turn in the scripts and they say it will be about an hour or so. Grrr. Okay back upstairs to have injection site checked. All good. Back down to pharmacy. We wait. About another hour. Finally his name is up on the ready board! Yea! But wait, now it's off again. What? 

The insurance company says no to 60 days. They will only approve 30 days. So they have to refill it. Another 30 minute wait. So we are finished and finally out of there after 2. Oh well, nothing new under the sun and basically a good report. We go back in 6 weeks, just for blood work. Next scan 12 weeks, yikes!

Please continue to pray:

1. Yucky side effects go away!

2. No progression! More shrinkage!

Also continue to pray for Ty, Betty, Holli, Mary, Greg, Laura's mom and Amanda's mom. And for the families of Wade and David, who now have been made whole with our Lord.

Thank you for continuing to love us so much!

Mixed up

Our day started really early with 6 am blood work. This was after I had to wake up at 4:30 to get ready, only to find I had left my makeup bag at home. I prayed, 'please don't let this be an indication of how our day will go!'

So, I put some lipstick on my cheeks, and braved the world, au naturale!  Guess what? NO ONE CARED. Prob because of my great natural beauty.  Ha! No, prob because everyone I saw is dealing with much bigger things!

Next David had his CT scan. This scan appt. was a last minute decision so it wasn't in our usual place. We had to leave our great executive parking reserved for those arriving before the cock crows, and drive down the road. To yet another MDA building. How many DO they have?

Since we were out already, we headed to Whataburger for breakfast instead of our usual MDA cafe cuisine.

We had 2 hours until the Dr. appt...our plan was to visit Greg in the hospital for a brain procedure yesterday.  But when we got to his room, he had already sprung himself! Didn't even wait for his wife! Congrats! Glad they made it out early and on to more happy destinations!

So we headed to Dr. T's office. And waited. When we got there the wait board said 'less than 30 minutes' wait time. Then it was changed to '30 minutes to 1 hour' then '1 hour to 1 1/2 hours'. There was a man explaining the board to another patient. I was just laughing inside. Rookies. The board means NOTHING.

Finally we see the nurse and answer the usual questions. The nurse says they are almost caught up on their MORNING appts. It is about 1:30. In the afternoon. Then we wait some more. In less comfortable chairs. Finally Dr. T sticks his head in the door and says in his loud Lebanese accented voice, 'great news, shrinkage!' And makes shrinking motions with his hands. And he is gone. For a looooong time.

We don't care. We are so happy to hear the words shrinkage. Lol. Insert your own joke here.

Every time they make us wait longer than the usual long time, it seems the news has been not great.
This might just be our imagination. But it's like they are trying to figure out the new game plan. So a long wait + good news = happy people that don't mind waiting longer!

The plan. We go back in 6 weeks. David is still in the vaccine trial so that is the date we would have gone back anyway. He will have another scan. As long as the scan shows no progression, we pray more shrinkage, he gets the vaccine and continues on this course. For 3 months! We won't have to go back for 3 months and they will consider the disease stable! Then more scans, and so on. Hopefully for a long time this med will work! If not, they change meds and the vaccine trial stops.

They also gave him a plethora of prescriptions for the side effects he is having. Diarrhea, high BP, low thyroid, and foot pain. Yea side effects.  But he is not having the metallic taste and he says that was the worst. Really?

I told him get the prescriptions instead of OTC. They will be free as soon as we meet the new year deductible. That started September 1. Joy. It won't take long to meet it. The Inlyta will max it out in less than 2 months. Cha-ching.

So we were happy.

Please pray for:
1. Continued shrinkage of nodules
2. Relief from side effects

But sad things happened today. So my great joy is mixed with much sorrow. A sweet family lost their husband/father/grandfather to cancer this morning. And another sweet family has placed their husband/father on hospice because of cancer. Oh cancer, how I despise you.

As you pray for David, please also lift up these 2 families, Wade and David.

Also please continue to pray for Mary, Greg, Betty, Ty, Holli, Laura's mother, all battling cancer and Amanda's mother, liver transplant.

Thank you for loving us!

No news is good news

Today David had blood work and met with the Dr. This was a non protocol visit because they basically just wanted to look at him and make sure he is managing with the new medication.

He is doing fine. His BP has been up so they increased that med. He also has a raspy, hoarse voice. But it is not painful. This is a side effect. Weird!

We have to go back in 3 weeks for the clinical trial protocol. It will also just be blood work and Dr visit. No vaccine, no scans.

So. There is really no news. And there will not be another scan until the end of October.  That is so so so scary!

Please pray:
1. Minimal side effects continue.
2. This new drug is WORKING-SHRINKING!
3. No drama, I'm tired!

Also keep in your prayers: Betty, Wade, Ty, another David, Holli, Mary, Greg, and Laura's mother.

Thank you for loving us!

A refreshing change

Look what a dear friend brought me today! So thoughtful, thank you Mike!

So far, (keep praying, it's only been 2 days), no side effects. Or at least he's not telling me so I won't tell the world!

So thankful he feels good and can do all the things he wants to do!

Please pray for these friends on another cancer journey; Mary, Wade, Greg, Betty, Holli, Laura's mom, Julie's father, and David. It seems everyday we add more to our list. Maybe we should pray for everyone else NOT to have cancer!

Thank you for so much love and encouragement!

Lemonade anyone?

This is not the the news I wanted to post. Today life gave us lemons. I will try to make lemonade.

David's scans showed some increase in the size of the nodules.

However, there are no new nodules. So we can be thankful for that.

Because of this progression, they are changing his drug therapy. He will now be taking Inlyta. This is the second drug used for RCC. From what I have read, it has a slightly higher success rate.

We are concerned with the new set of side effects that come with the new meds. But we will just have to wait and see if/when he might have any.

And we have to go back in 3 weeks instead of 6.

David will still get the vaccine with the new medication. However, the next time there is a progression, the vaccine will stop.  I found out today, the thought on the vaccine is that it hinders the cancer from spreading to other parts of the body by boosting the immune system. I don't know if there are lasting effects after the vaccinations stop. I guess that's why it's a trial.

Anyway. This continues to basically stink.

And then on the way home, the A/C in the car decided it's about done. So yippee.

I have been trying to drink all the lemonade I have been forced to make this year. And frankly, I don't care for anymore.

Please know I am fully aware of and very thankful for all the many blessings we receive daily.

Please pray:
1. No/mild side effects
2. No progression, new drug shrinks existing nodules! No new ones anywhere!
3. No more lemons!

True confessions

Forgive me friends, for I have not blogged. It's been 6 weeks since my last post!

6 great weeks of NOT going to Houston! While I know it is the best place for David to get the best treatment. I hate, (yes, I know it's a strong word), going there.  And being there. And having to go there. And cancer. HATE IT!

My girls say I rant. So there it is. Rant over. Big girl pants on now.

We leave in the morning for scans tomorrow and a Dr. appointment on Tuesday. If all goes well we don't have to go back for another 6 weeks!

So please continue to pray:
1. Safe travels
2. Good scans- no progression, shrinkage! What if all the nodules were GONE?!
3. Continued nominal side effects from drug
4. Protection for girls

I'll update Tuesday evening with hopefully and prayerfully good news.

Thank you for loving us!

Here's a pic from our recent trip to the beach. My happy place!

super short!

This is just going to be super short. Because there isn't much, it's all good and I am super tired!
So. David had blood work early. Like 7:30 am. Why? Then he had a 3 hour procedure called pheresis. Evidently there are many kinds of this but his was to extract white blood cells to mix with his frozen tumor to make his vaccine. Like before,  but they only had enough to make 5 vaccines and he got the last one today. This is good news because the treatment is working so they need more vaccines to continue the treatment! Yea!

No scans today.

Dr. T visit uneventful.  We are now on a 6 week schedule instead of 3 weeks! After 2, 6 week cycles, we go to 12 weeks! As long as the current treatment is working!

Yea to not have to go back for 12 weeks! Boo to have to worry for 12 weeks between scans!

Please pray for continued success with current treatment!

Thank you for all your prayers, all this time!

MDA and Astros

David had blood work  and scans yesterday and then for fun we went to an Astros game. The stadium is great and they won 7-2! Halfway through the game they opened the retractable roof so that was neat. Then during one of the times they show people in the crowd on the scoreboard, during the 'kiss cam', we saw a live marriage proposal!  So cute! She said yes and everyone cheered! He had to be pretty sure of himself, don't you think?!

Anyway, back to see Dr. T. today. Only waited about 2 hours to see him. :/ David's scans and blood work were all good. There was a slight regression in some nodules as well as the fluid that still remains around the one lung. So we are good to continue with this course of treatment! Praises!

David will have to have the process where they collect white blood cells repeated so they can make more vaccines using his frozen tumor. We will come back in 3 weeks for that. After that he only has to come back every 6 weeks for a while and will then graduate to every 12 weeks! This is as long as the cancer is regressing or remains stable. Any progression and we have to change courses.

Right now we are waiting for them to check his vaccine site for allergic reactions and then we can head home!

Please pray for:
1. Safe travel home
2. Continued regression of cancer.
3. NO PROGRESSION!
4. Continued tolerance of medication

Also pray for my friends who have not received good news. Laura and her mother and Amanda and her mother.

Finally, Abigail graduates from high school this weekend! Yea! Here's a picture from her party with her two best friends and sister!

And we are headed home!

Thank you for loving us!

Sorry to leave you waiting

I checked in on facebook this morning and then forgot to give an update. So sorry, I dislike very much the waiting room. Sorry to leave you there!

David had blood work this morning. It all came back in the normal range. Then we saw the research nurse, Marisa and Dr. T. Only about 30 minutes late! That right there was pretty exciting!

There is really nothing to report. Everything was good to receive the next vaccine and he will start the next round of Sutent tonight. We will go back in 3 weeks for another round of scans to check the (hopefully) further regression of the lung nodules. 

We were home by 5:30. Wow!

Then the girls wanted to play 'prom hair practice'. Pray for me!

Also please continue to pray:

1. Minimal side effects

2. Sutent and vaccine effective in shrinking the lung nodules!

3. No spreading!

Also, please pray for several others on their medical journeys.  Amanda and her mother, Laura and her mother, Greg and Nelda, Holli and Ronnie,  and Caroline. God knows their last names and their needs. I am so done with cancer.

Thank you for loving us!

Life in the fast lane

We are home from a 2 day trip to MDA! And we made it out of Houston before 5 o'clock traffic! Hooray!

But wait! There is more good news!

Yesterday David had some blood work and a CT scan.

This morning he had more blood work, a chest xray and a 6 minute walk test. All this was to determine if the fluid around his right lung had improved or if he would need to have the fluid drained.

The fluid was significantly and dramatically reduced! Yea! No procedure needed. Praises and happy dance. 

The pulmonary doctor, Dr. O, doubts that David had pneumonia, but said he would have also given the round of antibiotics.  He said, at this point it didn't really matter what the cause was, we would just watch it and take action as needed.

Then we saw the research nurse, Marisa and the oncologist, Dr. T. They agreed that the fluid was much improved. There is still some there but they think it will resolve with further treatment of the cancer protocol. Dr. T thinks perhaps the fluid was produced by some of the nodules in the area bursting. 

And that's not all! Order now and we'll double the good news!

There are no new nodules, and the existing ones have shrunk! Slightly. We'll take it!

David received the 2nd vaccine today. He has one more week taking the Sutent for this cycle. Then he has two weeks off. We go back to MDA in 3 weeks for another vaccine, then in 3 more weeks he will have complete scans again. 

He has experienced mild side effects; metallic taste, elevated blood pressure, and a itchy rash at injection site. These are tolerable, especially if the treatment is working. We are claiming that it is!

Thank you for continuing to pray, these are my requests:

1. Fluid around lung goes away completely

2. No new side effects, mild to no side effects at all

3. No complications with this vaccine

4. Continued shrinkage of present nodules, no new ones

This whole experience is the worst kind of amusement park ride that I would love to get off of! But we continue to pray and hope and trust. And to take it one day at a time. Thank you for loving us!

Update on old news

David has been feeling great.

The injection site has been itchy and he has developed a rash just at the site.  He was told yesterday that he can treat it with some cortisone cream.  He wasn't supposed to use anything initially and he thinks the worst is over now.  So, oh well.

His cough has seemed to lessen and he has not had any more complaints of breathlessness. He finished the antibiotic for the pneumonia. Now we have to wait until April 21 to see if the fluid cleared up, if it was actually pneumonia or if the cancer has spread.

My prayer is that it was pneumonia and the fluid is gone. If the fluid is still there for whatever reason, he will have to have it drained. This procedure doesn't sound horrible, but he would still rather not. Thank you.

He has not complained of any side effect from the Sutent this round. Hopefully that continues and hopefully and prayerfully this medicine will work.  If he has to change to another med, it will be a whole new chance for worse side effects.

Please pray:
1. No more complications from fluid, cough, meds, injection, and anything else!
2. Fluid gone!
3. Sutent working!
4. Scans on April 21 show no progression of cancer, how about REGRESSION!!!

Thank you for continuing to pray!

Everybody remain calm

So. Today was supposed to be an easy day. Blood work early. Dr. Appointment before noon. Home by dinner time.

NOT!

I need to remember that MDA is not the real world. Not even close.

So the blood work went well. Then we had a little breakfast in the cafe there and waited for the 11:30 Dr. T appointment. And waited. And waited.

We finally saw the nurse for a few general questions about 12:45.

Then Marisa the Research Specialist Nurse spent about 30 minutes with us. Everything with blood work looked good. David looked good. Everything good to go. So David gets the vaccine. 3 small sticks under the skin. He didn't LOVE it. But it was okay. And no reaction to it so far.

So except for the time delay, it's good, we will be good to go after Dr. T sees us.

Don't freak out now. David has been coughing some. Not a lot, but it has increased the last 2 weeks. He has also mentioned, not complained, just mentioned that he has had shortness of breath a few times. Because we are talking about cancer in the lungs, it has been something to concern us. Marisa says she has had some reports of these symptoms with the drug Sutent. She will mention to Dr. T. If he even exists at this point, I wonder.

So he FINALLY comes in about 1:30. Yes I know he has other patients. He is all happy with how great David has handled the first round of Sutent. But he wants to listen to lungs. He decides the right lung doesn't sound right and sends us to get an xray. We have to wait until 2:30 to leave anyway, because they have to check the injection site for any reaction. So ok. We get the xray.  By then it is 2:40. We ask the nurse to please tell Marisa we are back to have site checked and get xray report.

Then we wait. Until 3:30.

Marisa says site looks fine. She'll go find Dr. T.

Remain calm. There is something more in the right lung that was not present in the previous xray, 6 weeks ago. Because they did an xray and not a CAT scan, it is not clear. It was read as either a progression of the cancer or pneumonia. Our choices are:
1. Go home. Take an antibiotic for pneumonia. Continue with the Sutent for 3 weeks. Come back for complete scans in 3 weeks as planned.
2. Have a Cat scan later this evening and spend the night.
Dr. T is okay with either.

David decides choice #1. Here's why:
1. He feels fine.
2. If it's pneumonia, antibiotic will take care of it.
3. If it's a progression of the cancer, he will have 3 weeks for the vaccine to work alongside of the Sutent.
4. He needs to feed his horse.

Dr. T says fine. If David has any worsening symptoms, if the shortness of breath becomes noticeable with normal activities, he is to go to the oncologist here that he has seen before for a CAT scan.

After Dr. T leaves, we ask Marisa if we did the right thing? She said she would have done the same thing.

So. It's funny, but pray for pneumonia.

If it is a progression, they will continue the vaccine schedule but switch the oral drug that goes with it.

We left the office about 4:30. For fun and thrills, I encourage everyone to experience Houston 5 o'clock traffic.

We made it home about 9:30.

I just looked at the actual radiologist report. While it does say there is this new mass in the right lung, neither Dr. T nor Marisa told us that the LEFT lung lesions have shrunk. So I have no idea why one lung would respond to the treatment and the other wouldn't. But I suppose cancer is not rational.

Please pray:
1. Pneumonia, not cancer progression.
2. Minimal side effects from 2nd round of Sutent.
3. Combination of Sutent and vaccine kicks cancer in the butt.
4. No complications for the next 3 weeks when we go back for complete scans and next vaccine.

We remain hopeful, knowing that there are many other drugs to try if the Sutent is not effective. One thing I have learned is that if MDA says it's not over, it's not.

The other thing I have learned is that you will not leave MDA in a timely manner. Just get over it.

Thank you for praying.

Time flies!

I can't believe it's been over a month since I last posted.

David finished his first round of the Sutent, this is the oral pill that he took one a day for 4 weeks. Thankfully the only side effect that he noticed was a metallic taste. The nurse advised him to try Zinc and this seemed to help. Certain foods did taste better, so we focused on those and he has managed to gain about 5 pounds! He is currently finishing up his 2 week break with no medication.  He will begin round 2 on Tuesday April 1. They have told us that different side effects can happen at anytime, so we will keep praying that they are minimal and mild!

Tuesday, April 1 is also his next appointment at MDA. We will drive over tomorrow (Monday) evening to be there early Tuesday for blood work. Then at 11:30 he has an appointment with Dr. T and will also receive his first vaccine.

They have told us side effects from the vaccine are minimal, usually irritation at the injection site, if anything. I think we have to hang out for an hour after the injection to make sure he doesn't have any problems. So hopefully we will be on the way out of Houston early afternoon and avoid all that lovely traffic.

I'm not certain of the schedule after this. I think it is back every 3 weeks for an injection while he continues a 4 week on/2 week off schedule of the oral medication. At some point there will be more scans. It is difficult waiting until the next scans, and wondering and hoping and praying this treatment is working!

I will update Tuesday evening and post the news of the day.

Please pray:
1. Safe and expedient travels and protection for our girls while we are gone
2. Easy blood draw with correct results to allow treatment to progress.
3. Minimal vaccine side effects
4. Minimal side effects with next round of oral meds.
5. Shrinkage of current lung nodules
6. No spreading anywhere!

Thank you for checking on us these past weeks. We really appreciate your prayers and encouragement!

Good days

It's been over a week since David has started the drug therapy and I am so happy to say that he has not experienced any side effects.

Praises and Praises!

They said many have very few side effects, and some have some so slight they don't bother them. But they also said they can start at any time and sometimes don't start until the second cycle.

We are just prayerful that he is in the group with none or only slight side effects!

It is a little stressful waiting and wondering everyday if 'this will be the day'.  But we try not to stress about it too much.

Please continue to pray:
1. No or minimal side effects
2. Nodules in lungs shrinking
3. No spreading anywhere else

While it's good not to have an appointment for 6 weeks, it's also hard waiting to see if we are going in the right direction!

Thank you for praying!

No place like home

Thank you for praying. Today was a good day. The blood collection, was for white blood cells, not platelets. And idk what a platelet even is actually. I'm not a doctor, I just play one on TV. :)

Anyway, since all this started we have found out that David doesn't have the easiest veins to find. Today was no different. But thankfully the nurse was really good and able to start the IV's on the first try. It took about 3 hours to draw the blood, extract the white blood cells and replace the blood. That was about 3 episodes of Criminal Minds on the TV in the room. So that was all good. The technician did say sometimes for whatever reason they have to repeat this procedure for the lab. Let's pray not.

Then we had some lunch and sat outside in the beautiful weather.

The appointment with the Oncologist was scheduled for 2:30. The 'on time' board outside the office said the wait time was less than 30 minutes. You might think that means we would see him no later than 3. Silly. No. So I really don't know what it means except maybe someone should change the sign.

We went into the office/exam room about 3:30. Talked with the nurse about general stuff like do you have any pain and what meds are you taking?

Then we waited. The chairs outside the office are better than the ones in the exam room btw.

The research nurse came in about 4. We had a good visit with her. She explained everything about the protocols and procedures as well as the drug and possible side effects. And we asked lots of questions.

David will take the drug everyday for 4 weeks. Then take 2 weeks off. Then we go back to MDA to get the first vaccine and begin the cycle again. If he has problems tolerating the drug we can call for help or advice. It is possible that they alter the dose or time off if needed. The main side effect is usually gastrointestinal. And fatigue.

Dr. T came in about 4:30. He told us an abbreviated version of everything the nurse, Marisa, told us. And okay, bye. Maybe less than 30 minutes is the actual time you will spend with the doctor? It's fine. We like him. But we really like Marisa!

By now it is well into Houston rush hour. It was what you would expect. How do people do that on a daily basis?

We made it safely home about 10:00 pm.

Please pray for:
1. Minimal side effects/no drug complications
2. No further white blood cell collection needed
3. No spreading of cancer. Shrinkage!!!

Thank you, thank you, thank you for your prayers, notes, hugs and love!

Back again

We are back in Houston ready for tomorrow.

David's first appointment for the platelet collection is at 8:30. It is a 4 hour procedure.

Then we see the Dr. for instructions on beginning the targeted drug therapy.

Hopefully we will be on the way home by 3-3:30.

Please pray:
1. On time appointments
2. No complications with platelet collection
3. NO or VERY MILD side effects from targeted therapy drug
4. Safe travel home BEFORE Houston evening traffic!
5. No complications from drug therapy.

If all goes well we don't have to come back here for 6 weeks!

Thank you for praying!

YIPPEE!

Here's the latest and it's good!

I found out today, that we have not met our out-of-pocket expense yet.  It is impossible to believe, but as of today, with everything that has cleared the insurance company, we are still about $2000 away.  His total out-of-pocket, (deductible + 20% until max) is $6250.

As soon as he meets the total, EVERYTHING IS COVERED 100%!!!

This includes the prescription! YEA!

Anyway, did I mention, as soon as he meets the total, EVERYTHING IS COVERED 100%!!!

Until September 1, when it all starts over.  But still! EVERYTHING IS COVERED 100%!!!

None of the procedures he had on Monday and Tuesday have been applied yet, so maybe once those come in, he will be at the point where EVERYTHING IS COVERED 100%!!!

We do have to pay the $6250, but not an additional $2400 a month for the prescription!

The nurse who called to find out about the coverage just asked how much it would be. So they told her based on the 80/20 co pay we are still under. Nobody bothered to ask or answer, after he meets the out-of-pocket, EVERYTHING IS COVERED 100%!!!

So hooray and hallelujah!  I thought you might want to know! Thank you for praying!

Good news, expected news

First the good news!  David received a call this morning and he has been accepted into the study and he was also randomized to be in the vaccine group! This means he will receive the vaccine in addition to the drug, Sutent. My understanding of the vaccine benefit is that it doubles the positive effects of the drug.
So on Tuesday when we go back to MDA, he will have to have a 4 hour procedure where they extract platelets from his blood to add to the vaccine they are making out of the tumor, which they already have.  This is not a painful procedure, he can take a nap.

So this is super great news!

The expected news is that, so far we have not qualified for 2 of the 4 drug assistance programs that are available.  One was already fully allocated for the cancer David has, the other, we are too rich.  Ha Ha Ha. For the 2 remaining programs, I have to submit applications and a stack of documents for them to check for eligibility.  So I am working on that. We have good insurance with a good prescription plan, but 20% of a $10,000+ a month drug is still a lot of money.

That's all I have now.

Thanks for continuing to pray!

Remains of the day.

It's 10:30 pm and we are finally home. Remember yesterday. It was like 10 years ago. But we finished all the appointments about 2 hours early. We more than paid that back today.

It started out innocently enough. David had an EKG first thing. Got there early, finished early. Went on over to the next appointment, which was the bone scan. He got called back early. Things are looking good. But then he came back out too soon. Seems they scheduled the bone scan too close to the heart scan yesterday. They were concerned the contrast dyes would conflict with each other. So he had to go back at 1 to get the dye and then go back at 3 for the scan. In the middle we had the appointment with the oncologist.

Here's all the news from Dr. T.
The brain scan was clear. Yea. The heart scan was good. Yea. The CAP CT showed no new cancer. Yea. But the lung nodules are still there. Boo. The news is all basically good. We are right where we were before surgery except minus a tumor and a kidney.

Depending on the results of some lab work which they should get back tomorrow, David is eligible for the clinical trial.  If all is good they will do the random draw and let us know tomorrow.

Regardless of if he gets in the vaccine group,  we go back on Tuesday to begin the other drug, Sutent. Here is the bad part. These drugs are expensive. Outrageous. Our cost, after insurance is almost $2400. A month. Who can do that? So now I have to call these co pay places and see if we qualify for assistance.  I don't know what happens if not. So pray we qualify!

I learned about this while David went for the bone scan.

We left the hospital about 5 o'clock. Downtown Houston. 5:00 pm. Not the best plan. Thankfully when it was raining it wasn't freezing and when it was freezing it was dry. And we made it home safely. Just a quick 5 hours later.

The rest of the story is this. These drugs will hopefully shrink the tumors. They will not cure this cancer. They told us from now on, no progression is considered good news. They will use this drug as long as it works. It might be months, it might be years. If/when there is progression, they will switch to another drug. Currently there are, I think, 4 they can use. At some point they can also switch back to the Sutent. We just hang on. Maybe down the road they have more options. I wish it was different, but it could be worse. This is reality. I had a 'this really sucks' cry on the way home. Tomorrow we will get up and move forward. We don't have any other choices.

Please pray for:
1. All clear to be in the study
2. Vaccine group
3. Major funding for the drug
4. Mild to ZERO side effects from the drug

Finally, I am not brave, strong or optimistic. But I must be an excellent actress. I have faith, hope and joy. Please keep us in your prayers. We are trying to hold it all together. And if Jesus comes in the morning, I am really good with that!

Thank you for praying and for loving us.

Old MacDonald

What a day!

We started at 10 this morning. I'm thankful the 8 am appointment was changed to tomorrow! We met first with Dr. Karam, the surgeon. They are happy with David's recovery but want him to not lose any more weight. He has lost about 25 pounds since pre-surgery. He promised to do better. Ensure will be added to his diet this week.

We also got a copy of the surgery report. The report confirmed the cancer is the clear cell, the most common type of kidney cancer. This allows David to participate in the trial. Also the adrenal gland and the lymph nodes (2) that were removed were cancer free. The vein that was repaired showed clear margins. So the whole surgery was a good success! Praises!

David realized tonight that he probably won't see Dr. K again and was sorry he didn't give him a big ole bro hug. Maybe we'll send him a note and invite him to come ride horses if he's ever in SM! They had a running horse riding joke since the first appointment.

After that we met with the research nurse/person, I really don't know her title. All the scans the rest of the day are to establish a baseline for the treatment which is also connected to research since we are eligible for the trial.  They will have all the scan results by Wednesday. She is also checking with David's insurance to see about his prescription coverage. The drug he will be taking is quite expensive. Cha-ching. OUCH! If his insurance doesn't cover it (like A LOT of it!), she has options like the drug company will cover it or there are other grants. So as soon as they see the scans and figure out how to finance the drugs, they will do the trial randomization. 2/3 of patients will also receive the vaccine.

Also, about the drug, Sutent is the name. We are understanding that fatigue is a major side effect. David wasn't happy about that, since he is just getting his energy back. Pray it won't be too bad. Other common side effects are gastrointestinal junk, mouth sensitivites, and some kind of hand/foot sensitivities. Of course there is a page a mile long (kind of like this post), but these are the most common.

So next week, if they are happy with the scans, we have to come back for 1 day to get the drugs. David will take one dose a day for 6 weeks. At that time, if he gets in the vaccine group, he would come back for the first vaccine. Then back every 3 weeks for another vaccine. The amount of time between vaccines become longer over time. The vaccine is free because it is part of the study. Pray for vaccine. We should know this week if he gets it.

Long story, longer. There will be more scans along the way.

Next David had a blood draw. One of the results was that his Creatitine level is still not quite where they want it to be, but it is better. It was 2. something. It was 5. something in the hospital. They want it to be 1.5ish. They told him to drink more water and some cranberry juice.

Next he had scans. Here a scan, there a scan.
E I E I O.

Cardiac scan, CAP CT (chest, abdomen, pelvic), and brain MRI. Yea! We finished about 2 hours earlier than scheduled. Thanks for emergency prayer intervention!

Tomorrow is another day. He has an EKG, a bone scan and then we meet with the oncologist. We should be on the road home by maybe 2:00 or 3:00 pm.

Because you are all really great at praying, here's my list!
1. No new cancer anywhere! Shrinkage or disappearance of cancer in lungs!
2. Everything a go to begin therapy!
3. Major funding for drug.
4. Vaccine group.
5. Really mild side effects from drug.
6. Increased energy and healthy weight gain for David.
7. Kidney function improvement!

If you read all of this, wow! Thank you for loving us and praying for us. We continue to trust God.

The next big adventure

We leave for MDA this afternoon.

Tomorrow will be a very long day. David will meet with the surgeon in the morning for followup. I guess this will be the last we see of Dr. K.

Then the tests begin.  Blood tests, a CAT scan, some sort of heart scan, and an MRI. We will be at the clinic from 10 am to 10 pm. How much fun can you pack into one day? I'll let you know.

Tuesday it's back for a series of 3 EKG's and a bone scan.

Then we will finally meet with the oncologist, Dr. T.  I am just guessing he will have the results of all the tests and scans and David will be ready to move forward to the next big thing.

I'll update tomorrow evening.

Please pray:
1. Safe travel.
2. Keep my babies safe while I'm gone.
3. Great looking tests and scans. No new cancer anywhere. Shrinkage or disappearance of cancer in lungs.
4. Vaccine group.
5. Praise God. As I look back through these posts, I see so very many prayers that have been answered just as we asked. Some have not, but He is in control.

Just for fun, here's a photo of the dance team our daughters are a part of. They won Grand Champion of their division at contest last night! Go Diamond Line! Dream Big!

We press on. Thank you for praying!

Uneventful

It's been 2 weeks since my last post, so I thought I'd better remind you about us!

Thank you for all your prayers, seriously, I know you have not stopped. 

The last 2 weeks have been uneventful!!!  Just as we asked for.  Thank you God!
David is recovering well.  He has had no complications and is finally getting off the hospital schedule.  You know the one where they ignore you all day and then wake you up all night?  And since he had the drain removed, (Wednesday the 22nd), he has been able to sleep much better.

He has been up and out on his own this week and really enjoying that.

He is planning to go back to work next week.  Dr. K's office said he had to wait 4 weeks, they relented as they usually make people wait 6 weeks, and said he could go back on Wednesday the 5th. He does still get tired, so a shorter work week to start back might be best.  

The following week will also be a short work week for him because we head back to MDA on February 9th for followup appointments on the 10th and 11th.  The 10th looks like a full day of tests and scans.  And a meeting with the surgeon, Dr. K.  Then the 11th I think will be with the oncologist, Dr. T.

I don't know if he will actually begin any treatment at that time, I guess it might depend on all the tests and scans.  As I understand it now, the treatment is a daily pill. If he is in the vaccine group it will also include a shot every 3 weeks.

That's about all I have now, here are my prayer requests:
1.  Continued healing and increase in strength
2.  Good experience back at work
3.  Safe travels
4.  Positive tests and scans, like no growth or spreading of lung nodules, no spreading anywhere else.  Shrinkage or disappearance would be wonderful news!!!
5.  Not to negate the request for a miracle, but if we must continue, vaccine group!
6.  Mild to no side effects from the therapy!
7.  Publisher's Clearing House Giveaway Million Dollar Winners

Worth a shot.  Oh well, you can't win if you don't enter.  And I didn't.

Thank you for your sweet comments, for checking on us, for the cards, the hugs and the prayers!  I say this every time, but I really, really mean it!  Thank you so much!

Jiggity jog

Yesterday about 4pm, Dr. K. decided we could go home! Yay! Thank you Jesus! But David has to keep the drain. Ugh. Okay. He gives us a choice to go last night or this morning.  I think, 'Hmm, I have been discharged from a hospital before. I know how long it takes. We could stay one more night and leave fresh in the morning'. But then I think, 'Heck no! No way will I have David telling me for the rest of our lives that I made him stay in the hospital one minute longer than he absolutely had to'!

Loooonnggg story, short. We made it home last night about 11:30! It was a little tough, but so worth it to love on our girls and wake up in our own bed! Here's our banner the girls hung for us. That clock needs a new battery.

I need just a minute here to brag on my girls. They are so sweet and brave and I am so proud of them. They really hung in there the last 9 days. Thanks for praying for them too! Thanks to my parents for being right next door. Literally and figuratively! 

Our first day home has been restful. I spent the day cleaning up a little and doing a couple loads of laundry. Oh yeah, and had a great nap. David rested well, got out and walked a few times, and has eaten several small meals with no adverse reactions! I think he is past that part, but he is understandably cautious!

We return to MDA in 4 weeks for a follow up to surgery and to meet with the oncologist.

Please continue to pray for complete healing, no set backs, and vaccine group! Also shrinkage or disappearance of lung nodules! And NO spreading anywhere else!

I thank God for each one of you. Thank you for being so very faithful in your prayers and hugs and cards and gifts. I can not imagine how we would have made it through this without you!

And all glory and praises to God.

Thank you for loving us! 

Rollercoaster

We are one week in to our MDA stay. Today I thought about all the people having surgery today and what a hard week they have ahead of them. Prayers for them. I saw many being wheeled into their rooms post op. Blessings. It's zero fun.

David had a great day yesterday, he had been nausea free for 24 hours and able to keep down clear liquids.

My sweet sister came and stayed with me and visited with David. She has such a good sense of humor and we laughed a lot! With her help we commandeered a wheelchair and took David on a couple of outings. We hung out in the cafe and had a bite to eat. Lots of peeps to watch in there. Then we went outside. Shout out for fresh air! They have lots of park benches so we parked ourselves on a bench and took deep breaths and people watched. Then we took a trip to the observation deck-floor 24. This is 2, large, nicely furnished, inside rooms. You can see pretty much all of Houston. Very nice. We spotted the Astrodome among other things.

Shortly after our field trips, Dr. K made his rounds and upgraded David from a clear liquid diet to a full liquid diet. Woot woot! David ordered a milkshake. It must have been delicious. He couldn't help himself.

That is good news! We celebrated by visiting the observation deck after dark. Even prettier!

All is well.

This morning the Dr. says yea! your kidney numbers are looking better and you can have solid food!

I guess the excitement was just too much because, about an hour later, David lost his milkshake. :(

Demoted back to full liquid diet again.

Well, we took about an hour to get over our sadness. Then David got a shower, had some applesauce, and put on his big boy pants, and we headed out on another excursion. We spent about a hour in the sunshine. It was a beautiful afternoon.

Now. Don't misunderstand me, we are ready to go home. But I have to say that staying longer is only making him stronger. And he is going to be able to get around really well when we do get home. So that's a positive right there.

Tonight Dr. K says, eh, it's ok. Small setback. Have some eggs in the morning. It will be ok. Don't worry about it. So, eggs for breakfast!

After the Dr. visit tonight we went back to the observation deck. This time David walked the whole way! See how pretty:

The Dr. had more good news. The pathology report came back. Everything they removed or repaired showed clear margins! Also it is Clear Cell. So that enables David to participate in the study!

Praises! 

Here is my new prayer requests list:

1. Lonely kidney keep improving back to normal levels.

2. Solid food successful.

3. Removal of wound drain before we go home.

4. Home soon! Specifically before the weekend. Please oh please, make David ready so we can go with no complications! 

5. VACCINE GROUP!

6. Forgiveness that I am a whiney brat.

7. Also. There is a chance that removal of the tumor could cause the lung nodules to shrink or even disappear. Not to spread would be good. Shrink would be great! Disappear would be fantastic!

Thank you for your prayers!

Hopefully turning corner

Here we still are.

I think it's crazy that they tell you 4-7 days in the hospital. 7-10 is way more realistic. And there is no way someone could go home from this after just 4 days!

David looks great! His color is good and he is stronger everyday. He is on no pain meds. He still has the magic button, but he doesn't use it.

All the surgery stuff seems to have worn off and without the pain meds, he's back to normal and not just staring into space with a goofy look on his face. No that is not just how he looks!

For some reason, his insides have just been slower than normal to get moving. Evidently they did not take kindly to being manipulated.

They finally seem to be waking up. He has been feeling nauseous and then will finally throw up and feel better. What do you throw up when you don't eat anything? Well let me tell you it is not pretty and I will never be able to own or use one of those green machines after what I saw! Ick!

Today he made progress and it went down and out instead of up! 3 times so far! Yeah. I could post a picture. But no. 

So the doctor says if he doesn't throw up tonight he can eat tomorrow. And today he is hungry. He hasn't been, so I think that's a good sign too!

Please pray for one direction (down) only tonight!

Also his only lonely kidney is not happy either.

So they did an ultrasound.  It looks fine. They clamp it off during surgery and it didn't want to wake up and fly solo. But it seems to be facing the reality that its twin is gone.  Thanks for praying for that earlier today! Keep praying for it to get to work!

So hopefully and prayerfully we have turned a corner here.

Three other things, kind of all connected. 

Today I had a little hissy fit with God. So after that I open my facebook page and this is the first thing I see:

Thanks, God. Okay.

Also we have some wonderful nurses. But we have one that I absolutely LOVE! She just gets us. She has just a little extra bit of compassion. So she sees our disappointment this morning and so sweetly encourages me in the hallway. And then comes in the room while I'm out on an errand and tells David she prays specifically for all her patients.  And that he is going to be fine and he is so fortunate to be here and so many have so much worse. And God has this. Her name is Sarah. Please include her in your prayers! 

And finally, while she is in talking with David, I'm walking from the parking garage back to the room. This is not a short walk. It involves several floors and hallways.  To get to the 'hospital' part of this hospital you have to go through the whole complex. Like all the different waiting areas for all the different cancer specialties   This weekend most of these areas were empty because those offices were closed. But today they were all opened again.  I know I've mentioned how many people are here. We are not the only ones here. Some are really sad and really sick. We are going to be ok. Not totally ok. But better ok.  Perspective.

And bonus! David got to shower tonight!  He thought it was great!

Also, thank you Diamond Line for the beautiful flowers. Everyone comments on how pretty they are and how good they smell!

Thank you for praying!

Day 4000 or maybe it's just day 4

Today my wonderful parents brought our babies to Houston.

OMG I have never been more excited to see, hug, touch, kiss...anyone in my life than these 4 humans.

They will go home tomorrow and that will be hard, but I think we will be able to make it a few more days until we can go home and be together again.

Thank you Mimi and Papoo for this precious time!

Shout out to Ruth Molina for checking in on our furry babies while we are gone!

Yesterday we had a sweet visit from Bob and Karen Boggus, thanks for making the trip to check on us!

Also, yesterday David had a problem with nausea, despite medication to help. That continues today. So they stopped his delicious liquid diet (which he has enjoyed since Tuesday and only eaten 1 bowl of jello post-op anyway) and he can have nothing at all by mouth today. He's not hungry anyway.

He was sick twice in the night and is burping, but they want everything going the other way.

How anything can possibly come out anywhere considering his intake, is beyond me, but if you get my drift without me spelling it out, please pray!

He is making progress with his walking, standing, sitting, and ropin' steers. Well, okay. Most of that. So progress is being made.

I think he's a little (a lot) discouraged with his progress, so please pray to lift his spirits.

We are anxious to get out of here, but not before he's ready, if you would, pray for that to come in a timely manner. Like NOW!

Thank you for continuing to pray. And for your encouraging comments, and for the snacks and books that I'm using to get through the long days! We are so thankful we are not alone.

A new day

David had a good day.

We finally got in a room about midnight. David rested as well as can be expected after surgery. In a hospital room with all the bells and whistles. And the nurses in and out all night. 

But hey. He had the bed. It was so late I decided to just stay in the room. I had a 'recliner'. Whatever. It wasn't horrible. 

Yes it was!

But this morning was a new day. Without a tumor. So layta tumor.

David had a delicious menu today of clear liquids. Yum. That's what he had before surgery too. He ate exactly one bite of cherry jello and drank about 2 cups of water. The Dr. said that was okay.

All the surgeons or their representatives checked in. 

David's assignments for the day were to walk, suck air in this breathing contraption and go to the bathroom. He gets a 66.6 on his report card. You guess which didn't happen.

But the moving, sitting, standing, turning over, and walking got easier as the day progressed!

This evening David was moved to another room. The, not fresh out of surgery so you need lots of care, room. And bonus! It was a bigger/corner room with 2 windows. Yea! He was excited! Really. David was excited. Trust me.

After he got settled in the presidential suite with his very own remote, and a nurse who promised to take care of him for me, I went out for a gourmet Whataburger and back to my 5 ***** hotel. Just couldn't do the 'recliner' again.

Have I mentioned how many people are at MDA? So much cancer. 

For all the little perceived glitches, I have to say it is a pretty amazingly coordinated place. And EVERYONE who works there is so NICE. I am not kidding.

Thank you for praying! Please, please continue.

1. speedy recovery

2. Clear Cell 

3. vaccine group

Shout out to Greg and Nelda. They were at MDA on their own personal journey and stopped by to say hello!

Also, I miss my girls!

Shout out to them that they are being so sweet and big. 

And shout out to my texting friends and family that let me lose it a little last night. It was a terribly long day!

Thank you for loving us!

Successful surgery

Well.

This has been  a super long day.

We got here about 11:00 am and began the get ready for surgery process.

David finally went into surgery at 4:16 pm.

The surgery took about 4 hours. They removed the kidney, adrenal gland and some lymph nodes. Then they repaired the the vein.

It all went as expected.

The surgeon expects him to stay in the hospital at least 5 days.

We will come back in about 6 weeks for follow up and to see the oncologist and begin the next part of this stupid trip.

It is 10:45 now. I am with him in recovery. It has been a very long day.

We should be in a room soon.

Please pray for pain management and a quick recovery.

I'll update tomorrow.  Too tired to even finish this senten

Surgery Tomorrow

Well tomorrow is the big day!

Yea.

Here's how today went:

The first appointment was at 11:15 with the vascular surgeon. The clot is very near the tumor but something about the left kidney makes it more difficult to tell its position, so that's why Dr. K went ahead with the vein specialist to assist. Her name is Dr. Huynh. Pronounced 'win'. Dr. H.

Then we met with some of the clinical trial people. It is a random computer draw to determine who will receive the trial vaccine. 2/3 do, 1/3 does not. So better odds than 50/50.

Also to be in the study, it has to be the most common type of kidney cancer, which is Clear Cell. And pathology will take 8-10 days before we know that. So no need to go in depth on the study until we know. But please pray it is Clear Cell and he gets in the 2/3 vaccine group anyway!

In the meantime, we find out surgery will not be until 1:30 ish. So we had some lunch.

Next, the anesthesiologist. Except not. First David gets to have a surprise EKG. Which is no big deal but he didn't know he was going to do that. So kind of freaked him out.

Then we met with a nurse in the anesthesiology department. Not the anesthesiologist.  She asked all those same old questions and sent us to the lab for a blood draw. For whatever. I don't know.

We have to be there at 11 tomorrow. Surgery about 2 hours later. The surgery will take 3-4 hours.

So here's how it is at MDA. This is all they do all day. Cancer. And there are hundreds or maybe thousands of people here. You can not believe how many. This is no big deal for them. One nice lady nurse type said we seemed 'down'. Really? Well zippity do da. How exactly are we supposed to seem. This is all normal for them. But this is not our normal. Except now it is. Our new normal.

We know we are not alone. In many ways.
We are not the only ones to ever have cancer. There are too many others.
And all of you who pray for us are with us also. Thank you for being there.
And God. And whatever His secret plan for this is. He is with us.

Here's what I'm praying for:
1. Wisdom and expertise for all the medical people involved tomorrow.
2. Peace for David.
3. Clear Cell.
4. Vaccine group.
5. No major spread of the cancer.
6. Speedy recovery. 5-6 weeks is what they say. I'd like faster :)

Thank you for all the snacks and books and gift cards and traveling funds that so many of you have provided. It has made much of this whole thing easier.

Thank you for praying and loving us!

I'll update after the surgery.