Starstruck

Waiting at UCLA to meet with the Rheumatologist
Waiting at UCLA to meet with the Rheumatologist

This last week marked the one year anniversary of the current health journey that we have been on. I remember vividly being in Nashville when Jen began experiencing sharp pains in her chest that landed her in the ER. I remember my friend Mark Short, who was a student years ago during our University of Arizona days and who also happens to now live near Nashville, adjusting his schedule on a moment’s notice to come and visit us in the hospital. I also remember my fears and anxieties being relieved when the doctor told us that he believed that Jen was suffering from walking pneumonia.

Of course that was just the beginning of the journey. There have been 5 hospital stays, countless doctor visits, chemo-therapy infusions, biopsies, endless tests and procedures and enough blood drawn it seems to fill an empty blood bank.

After Jen’s last flare in January landed her back in the hospital for a week, we were advised by our Pulmonologist to seek more advanced medical care and treatment from experts at a teaching hospital. We ended up setting up some appointments at UCLA and that has been very helpful for Jen in the course of her treatment.

Last month, we had two appointments at UCLA that were helpful and encouraging. The first appointment was scheduled during the first day of spring break so it became an all day family event. We made the best of our time in L.A. by spending a day at Universal Studios, which the boys were pretty excited about.

Joshua (left) and Jacob in front of the Scooby Doo Mystery Machine at Universal Studios.
Joshua (left) and Jacob in front of the Scooby Doo Mystery Machine at Universal Studios.

The next week we were back at UCLA for a full day of tests followed by a consultation with the Pulmonologist. Jen got a CAT Scan of her lungs and also had a Pulmonary Function Test.

When we met with the doctor, he showed us the image of the CAT Scan and compared it side by side with the image of her lungs when she was in the hospital in January. The difference was noticeable. Her lungs now look more clear.

However, Jen’s Pulmonary Function Test results showed that there is still some kind of restriction. The doctor said that could be the result of some lingering inflammation or it could be the result of nearly a year of being pretty inactive and sedentary. We remain hopeful that Jen’s lung capacity will increase over time.

Near the end of our appointment, we met with the head of the Pulmonary group, a doctor named John Lynch. Apparently, Dr. Lynch is one of the leading experts on Vasculitis in the United States. He told us that Vasculitis is pretty rare, with only 3 to 7 cases per million each year. That means there are probably only about 1000-2000 cases of it each year in the U.S. Because of that, he said it’s good to get treatment from doctors who are very familiar with the disorder.

He also told us that based on his observations and Jen’s test results, he thought she might be in remission. That was certainly good news – probably the most positive news we’ve heard in the last year!

Later in the week, when Jen met with her local Pulmonologist, he seemed star struck when Jen told him that we had met with Dr. Lynch. His comment, in an excited tone was, “You met with John Lynch! Wow! I spoke with him at a conference once!”

After our appointment, Jen and I went to dinner at a local mall in hopes of avoiding the rush hour traffic on our way home.

Dave & Jen pause to take a picture with Millhouse from the Simpsons at Universal Studios.
Dave & Jen pause to take a picture with Millhouse from the Simpsons at Universal Studios.

As we were exiting the restaurant, I walked right by Bob Newhart, who was walking with his wife into a different restaurant. Jen had already walked past him without noticing. Starstruck, I caught up to her and in an excited voice exclaimed, “Jen, we just walked right past Bob Newhart!” I guess it’s just a fun footnote of our trips to L.A.

Jen is continuing with her current treatment and continues to lower her dosage of Prednisone, which is now being reduced at a slower rate. She is now taking 9 mg per day.

The main issues now are continuing to build lung capacity, while hoping and praying that the many side effects of Prednisone will begin to subside. Among the side effects we are hoping will dissipate are blurred vision, bursitis in the knees, water retention and weight gain, and loss of hair.

Please pray with us for Jen’s continued recovery. Pray both for increased lung capacity and also that her body will be healed of the many negative side effects of Prednisone. Pray especially for perseverance as the recovery process often feels like 2 steps forward and 1 step backward.

Please pray for healing from a minor surgery Jen had to remove a skin cancerous mole as well as a tooth extraction and permanent implant that will be coming up in the near future.

As always, we are grateful for your continued prayers, support and many notes of love and encouragement!

Click here to read the pdf version of The Lowedown.

Stripped

Last month we learned that our insurance company had been victims of a massive data breach and that the personal information of everyone in our family has been compromised. Of course our worst fear is that someone might use that information to commit identity theft.

In this age of technology and social media our identity is more important than ever. We go to great lengths to ensure we’re protected financially from those who would steal our vital information for their own personal gain. We also want to protect our reputation. I have a doctor friend who has a very low profile on Facebook simply because he doesn’t want anyone else creating a false identity of him online that might negatively affect his reputation.

I’ve been thinking a lot about identity recently. I’m not talking about the ethnic and age demographic information that seemingly everyone wants to know these days. I’m talking about where we get our value – where we get our identity and sense of worth from.

For most men, value, worth, identity often come from our jobs or our achievements. It might be a diploma from a prestigious school that is proudly displayed so that everyone can see it. Or it might be a car that represents a certain financial and social status. Or maybe it’s a house in a certain neighborhood that projects a certain status to others. Regardless of what it is, many people gain their sense of worth and value from external things such as our family or our job or some other material things.

I think this last year has been a refining period where the Lord has been slowly stripping me of the things that have tended to give me value and self-worth. I don’t have a fancy car or house and that chiseled physique seems to continually elude me, but for the last 25 years I’ve had a ministry that has enabled me to feel productive and fruitful and therefore valued. There was never a shortage of stories of someone who had trusted in Christ or who had experienced some radical life transformation.

This last year, with the challenges we’ve faced in our family and struggling to get a new ministry off the ground, I’ve found those stories harder to come by. It’s forced me to reflect more deeply than ever and ask myself where my identity lies.

I’ve been reading through the New Testament and in Mark chapter 1, Jesus goes out to the desert to be baptized by John. When He comes up out of the water, the Spirit descends on Him in the form of a dove and the Lord speaks, “You are my Son, whom I love; with You I am well pleased.”

I find it comforting to realize that the Father spoke these words before Jesus had performed any miracles, or healed any sick people. Jesus hadn’t cast out any demons yet, taught to any large crowds or paid for the sins of the world. Jesus had done NOTHING. And yet, the Father affirms His identity (You are my Son), affirms security through unconditional love (whom I love) and also affirms value (with You I am well pleased).

As it turns out, the best story of transformation we have to offer these days are examples from our own lives.

Thank you for the part you have played and are playing in our own transformation. Please pray that as the Lord continues to strip and refine and prune our character, that it would result in lives that are more fruitful and glorifying to Him!

Jen’s Health Update

Jen is tapering down on her dosage of Prednisone and so far it appears that this new immunosuppressant she has been taking is working. Please pray that there would be no complications and that many of the negative side effects of Prednisone (blurred vision, bursitis, muscular atrophy, water retention, etc.) would begin to subside.

We have appointments the next two weeks with doctors at UCLA. Pray for wisdom and clarity and that the treatment plan would help stabilize Jen’s condition and help her get back to feeling normal again.

Other Family News

It’s hard to believe that Jacob and Joshua are in the midst of registering for high school. They are filling out their schedules now and requesting their classes and electives. Wow! It’s gone by too fast and is almost surreal.

Jacob and Joshua after receiving their certificates for California Junior Scholastic Foundation (CJSF) for 8th grade.
Jacob and Joshua tie for first place in the Los Alisos 2 mile run.
Jacob and Joshua tie for first place in the Los Alisos 2 mile run.

Jacob and Joshua are doing quite well in school and are involved in various activities. They are involve in a running club at school where they tied for first in a 2 mile race that took place yesterday. They are also enjoying their last season of flag football.

Please pray for wisdom as they choose their classes, apply for sports teams and prepare themselves for life as high schoolers!

The Butterfly Effect

“A butterfly flaps its wings in Brazil, we get a hurricane off the coast of Florida.”

Perhaps you’ve heard this quote or something similar. The idea is that something as small and insignificant as a butterfly flapping its wings in one part of the world could change certain conditions that have an enormous effect in another part of the world, such as a hurricane.

The “butterfly effect” as it has come to be known can actually be traced back to a man named Edward Lorenz, who, while working as an assistant professor in MIT’s department of Meteorology in 1961, developed an early computer program to simulate weather patterns. One day, Lorenz allegedly changed one of a dozen numbers representing atmospheric conditions from 0.506127 to 0.506. That very small, seemingly insignificant change utterly changed his long-term forecast. Lorenz wrote about this effect in 1972 in a paper entitled “Predictability: Does the Flap of a Butterfly’s Wings in Brazil Set Off a Tornado in Texas?”

In popular culture today the “butterfly effect” refers to seeing the interconnectedness of two events that at first may seem unrelated. For us, we’re experiencing our own “butterfly effect” as it relates to Jen’s health situation. Let me explain.

Jen meets with the nurse at UCLA before seeing the Rheumatologist.

February was a busy month of doctor visits for Jen. Most notably, we had two different trips to UCLA to see Pulmonary and Rheumatology experts. As part of her next steps in treatment, Jen’s doctors are trying to determine whether they should subject her to another round of chemo-therapy. And if so, should they prescribe Rituxan, which is the drug Jen received last fall and was interpreted to be only partially effective, or should they prescribe a different drug known as Cytoxan?

The problem is that Cytoxan apparently has a lifetime limit. Doctors have discovered that administering this drug in dosages beyond this limit could put the patient at greater risk for blood diseases like leukemia.

As you may know, Jen had cancer when she was 3 years old and was subjected to about 18 months of radiation and chemo-therapy. We weren’t sure if Cytoxan was one of the chemo drugs that Jen had as a child so we’ve been working to get access to her records so we can determine if Cytoxan is even an option for current treatment. As you can imagine, gaining access to medical records from 40 years ago has proven to be a challenge.

But Jen had a brilliant idea! For the past 40 years, she’s been a part of a long term study conducted by the National Wilms Tumor Study (NWTS). This is the kind of tumor Jen had as a child and Jen thought that this research group might have information about her treatment 40 years ago. She was right! The person Jen contacted at the NWTS was able to pull up her medical profile right away give her a bunch of information about her surgery and treatment. Jen talked for about an hour with the person about her treatment and we now know that Cytoxan was NOT one of the drugs that she had as a child.

The person Jen talked to also said that what Jen is experiencing is not uncommon with people who have had her type of tumor and treatment. Apparently, others who have been a part of this ongoing research study have had issues similar to what Jen is now experiencing. We have long wondered whether the issues Jen is experiencing are related to her cancer and treatments as a child. It now seems as if there might be a connection though we’re not sure exactly how the two things may correspond. The “Butterfly effect”.

We want you to know that we are extremely grateful for you. Your investment in our lives through your prayers, notes and financial gifts, may seem small and insignificant but it has had a HUGE impact in our lives, especially during this current season in our lives. I guess that’s another example of the butterfly effect in action!

Please continue to pray for the doctors to have wisdom as they determine the best course of treatment and pray for us too as we navigate the next steps in Jen’s treatment.

When It Rains, It Pours

Kind words are like honey – sweeter to the soul and healthy for the body.”  – Proverbs 16.24 (New Living Translation)

There’s an old adage that says “when it rains, it pours.” That’s not a commentary on our recent weather as we’re still in drought like conditions with what looks to be the 4th year in a row of record low rainfall in Southern California. Instead, it seems like unwelcome circumstances often come in waves, one after the other.

Our hope that 2015 would have a much brighter outlook than 2014 was rather short-lived. Just a few weeks into the New Year, Jen began experiencing shortness of breath and other symptoms related to her Vasculitis, putting Jen back into the hospital for seven days of Prednisone blasts designed to counteract the Vasculitis flare.

One night as I was preparing to take the boys to visit Jen in the hospital, I got into our Highlander and it was completely dead. It turned out to be a battery failure, which was strange since I just replaced the battery less than a year ago.

WaterDamage
Water stains on the baseboard behind the toilet are a sign of a greater problem.

For the past few weeks, I’ve noticed discoloration in some of the grout in our downstairs bathroom that I just renovated last April. I didn’t think much about it but on Saturday, I noticed those lines seemed to be growing. A closer inspection of the baseboard behind the toilet showed evidence of water stains. My worst fear was realized when I removed the toilet and opened up the wall to find an excessive amount of water that was created by a pinhole leak in a pipe that was fine just a few months ago. It was very interesting spending Super Bowl Sunday with no running water and trying to figure out how to manage our bathroom needs.

When the circumstances of life challenge us, it’s easy to get deflated. I’d be lying if I said that these trials haven’t been a drain to us emotionally. Yet in the midst of everything that’s happening, your words of encouragement and support have literally been words of life and hope to us.

A few weeks ago when Jen was in the hospital, I sent out an update soliciting prayer for Jen. The number of people who responded, telling us they are praying and sharing kind words of encouragement was a blessing to us. One of my friends, Leo Mullarky, who is the director of Cru for the Inland Empire sent this note, which was particularly encouraging to me.

A student helps to start Impact at Cal State San Bernardino.
A student helps to start Impact at Cal State San Bernardino.

“I thought you could use some good news. So listen to this….God is raising up multiple movements in the Inland Empire. He is using your vision and investment. 

We launched Epic at Cal State San Bernardino last quarter and sent 3 students to the Epic Conference last weekend. We are launching Impact at Cal State San Bernardino this week. In addition, Thom & Jessica MacMillan (former UC Davis students who are joining Cru staff) have been assigned to the Inland Empire Cru team, mostly from responding to your vision that you gave them. It was their 1st choice of placement.

I just wanted to say thanks for your investment in Ethnic Field Ministry (EFM). I know it was hard but God is still using your vision to help others make a difference here.”

In this season of life where our ministry efforts are more limited than we would like, it’s encouraging to know the Lord continues to use our past efforts to inspire others and advance His kingdom purposes.

Thank you for standing with us and encouraging us as we navigate the trials of life. Your words really have been sweet to the soul and healthy for the body!

To read the pdf version of our newsletter, click here.

P.S. if you want to take a look at the video of my pinhole leak, goto: http://goo.gl/sJez2y

A Temporary Setback

(NOTE: this is a follow up to my earlier posts on 10/13 and 10/22)…

Click here to read the pdf version of the Lowedown

Recently, I was watching an episode of Dancing with the Stars. Jen and I enjoy watching the transformation that takes place in the lives of people who have no dancing experience and yet are able to learn to perform sophisticated dance routines at a high level.

The theme of this particular week was “your most challenging year”. One contestant mentioned the year that he went to jail. Another contestant mentioned the year that her dad passed away. Still another contestant mentioned being bullied as a teenager.

I think I can confidently say that if I were on that show and had to respond to the theme of that week, that this year would definitely be listed as our most challenging year.

It’s been a six month journey in getting sick, trying to diagnose the problem, getting a diagnosis and then beginning treatment. Last month, Jen had just finished 4 weeks of chemo-therapy infusions that were designed to suppress her immune system and put her vasculitis into remission.

Everything seemed to be going well. Jen was responding well to the treatment and the blood work indicated that her kidney functioning, which had been declining over the summer, was beginning to stabilize.

But about 2 weeks after her last infusion, Jen started to experience some symptoms of shortness of breath, accompanied by some low grade fevers. When we met with her rheumatologist, her initial words were, “this is not good.” She was concerned that Jen might have an infection and with a compromised immune system, that could be extremely dangerous.

hospital1
Jen spent 10 days in the hospital getting tests and being treated for a vasculitis recurrence.

Jen was admitted to the hospital and remained there for 10 days. Tests indicated that there was no infection, which means that what Jen was experiencing was a recurrence of her vasculitis. After all the treatments that she had received, this was a bit of a bummer.

To combat this vasculitis flare, Jen had to be given very high doses of Prednisone intravenously for several days. Once the doctors were confident that the vasculitis flare was under control, it took them several days to taper Jen down to a Prednisone dosage that was low enough to take at home.

Jen has now been home for a week. The good news is that her kidney function, blood work and chest x-ray all look good and for now the vasculitis symptoms seem to be under control. The hard part is that Jen is on a higher dose of Prednisone than when she first started treatment in July, so in some ways, it feels a bit like treatment is starting completely over at the beginning.

Jen’s rheumatologist tells us that the treatment phase for this disease will likely last a year. After that, if there are no other setbacks, we can move into a maintenance phase. Maintenance would require Jen to take low doses of an immunosuppressant drug in order to keep the vasculitis from recurring.

During this challenging time, we’ve been overwhelmed by the love and support from family, friends and co-workers. Thank you for praying for us and for serving us in so many ways, whether through cards, notes of encouragement, timely meals for our family or an additional financial gift. We are so grateful for you.

We would greatly covet your continued prayers for us as we continue to navigate this journey the Lord has us on.

Specifically, pray for Jen to remain healthy as her immune system will be compromised until well after the first of the year. Pray also that there would be no recurrence of the vasculitis as Jen continues to be tapered off of Prednisone, which has many undesirable side effects.

Pray too for us as we try to balance our desire to build on our new ministry while continuing to deal with Jen’s ongoing disease and recovery.

Thank you so much for standing with us. We are eternally grateful!

Dave&Jen2

Home Sweet Home!

After 10 days in the hospital, Jen finally was released today and able to come home. We are very excited and happy to have her home with us.

We would still very much appreciate your prayers for Jen. Vasculitis is a tricky disease to get a handle on. It’s an auto-immune disorder so there really is no cure but can often be managed with a combination of medications. Finding that combination is the tricky part and our rheumatologist tells us that this phase, which she’s calling the treatment phase, can last about a year. 

If there are no setbacks, the hope is to move into a maintenance phase where the vasculitis can be kept in check with a minimal immuno-suppressant. Getting to that maintenance phase can often have setbacks like the one Jen just had. The hope is that once we get to a maintenance phase, Jen’s lifestyle will begin to resemble more of the activities and commitments to which she’s been accustomed. 

So please continue to pray for the following:

  • Pray that Jen would remain healthy for the next 5 months while her immune system will be compromised because of the infusions she recently received.
  • Pray that Jen would begin to feel more normal now that she is out of the hospital. She’s pretty tired. We think that’s a combination of not getting the best rest, being confined to a bed for 10 days, and being restricted in her diet because she’s diabetic. Jen told me that she was constantly feeling hungry.
  • Pray that she would not have a recurrence of the vasculitis as they continue to taper her steroid dosage down over the next several weeks.
  • Pray that we would continue to put our hope and trust in the Lord. The last 10 days have been a roller coaster of emotions. Pray that we would be able to experience some spiritual and emotional rest.
We are so grateful for you. Your prayers and notes have sustained us during this difficult time.

If you haven’t checked out Jen’s CaringBridge site, you can do so by going to: http://www.caringbridge.org/visit/jenlowe

Thanks again for your prayers and support!

A Setback for Jen’s Recovery

Jen-ReaganLibraryFriends,
Thank you so much for your continued prayers for Jen. Please, please, please continue to pray for healing.Today, Jen was readmitted to the hospital for more tests. Let me explain why.

After Jen’s last infusion 4 weeks ago, she had some blood work done that seemed to indicate that things were going well with her lungs and her kidney. We were encouraged.

However, 2 weeks ago, Jen unexpectedly started experiencing some low grade fevers off and on and also was dealing with some shortness of breath.

Last week we visited Jen’s rheumatologist who was concerned when Jen shared about the symptoms she was experiencing. The possible causes of her symptoms could be a return of the vasculitis or maybe an infection that she has developed in her lungs.

Today, Jen saw her pulmonologist who determined that her lung functioning is only at about 50%. Because of that, Jen has been readmitted to the hospital for further testing to try to determine the cause of her lung issues.

Would you take a moment and pray for Jen right now? Pray that the doctors would have wisdom to correctly diagnose what is happening. And pray that she would be able to get treatment to correct her condition. Please pray that the Lord would heal her and restore her health.

We serve a mighty God who is able to do exceedingly more than we ask or imagine. Pray that God would be glorified through Jen and that He would choose to bring healing to her body.

Because Jen’s health issues have been ongoing, we’ve decided to set up a Caring Bridge site where we can post regular updates about Jen and her health. Please check out her site and register to receive updates whenever a new journal entry is posted.

The site is: http://www.caringbridge.org/visit/jenlowe

Thank you so much and God Bless!
Dave & Jen

The Waiting Game

Dear Friends,
Jennifer and I are so encouraged and overwhelmed by the love and support that we have received during these last few months as Jen has been undergoing tests and treatment for her Vasculitis condition.

Many have asked how Jen is doing now and what lies ahead.

Jen-ReaganLibrary
After four infusions, we’re waiting to see if the medication has taken effect.

The short answers are that Jen is doing well and we’re not quite sure what is next. Please read on for the more full explanation of what is happening.

Jen continues to do well and feel well as a result of the Prednizone (steroid) that she has been taking for the last 9 weeks. The steroid has reduced the inflammation that was causing a lot of pneumonia-like symptoms. As a result, she has felt a lot more like herself.

But the goal now is to get off the steroid (because of some of its negative side effects) without seeing the symptoms return. To do that, she’s received 4 weekly infusions of Rituxan, which is designed to put the vasculitis into remission so that when she is tapered off the steroid, the symptoms do not return.

Last Wednesday Jen received her fourth and final infusion. Her doctor also has begun tapering her off the Prednizone.

Where are we now in the recovery process? We don’t really know. We really have to take a wait and see approach.

Jen had some blood work done this week which we hope will show positive signs with many of the markers that the doctors look for when analyzing her condition. Specifically, they’ll be looking at inflammation rate, kidney functioning and the presence of certain anti-bodies.

Over the next 6 months, Jen’s immune system will begin to break down as a result of her infusions. In about 3 months, she should reach the low point of her immune system being compromised and as it builds itself back up, the hope is that the vasculitis will not return.

Please continue to pray with us. Specifically, pray that the Rituxan medication would be effective and that her symptoms would not return as she is slowly tapered off of steroids.

Pray too that Jen would not get sick during the time that her immune system is compromised.

Lastly, please continue to pray that we would trust the Lord as we navigate the various issues associated with this disease.

Thanks again for your continued prayers and your notes of encouragement. We feel loved!

God Bless!
Dave & Jen

One Down, Three to Go

Dear Friends,

2014-Aug-BarnardsLast Thursday (Aug 21), Jen had her first infusion of Rituxan. Thank you for praying. The infusion went well in that there was no adverse reaction and no noticeable side effects. Though this is a chemo-therapy grade drug, the good thing about Rituxan is that most people adjust well to the treatment and don’t experience any adverse sickness or reaction.

Jen was able to come home and pretty much resume normal activities.

Today (Wednesday, August 27th), as I write this, Jen is receiving her second infusion. After today, she’ll have two more infusions and then we will be able to see if the medicine is working.

Please continue to pray with us that the Rituxan would put this disease in remission and that her vital organs, lungs and kidney, would not be adversely affected.

Thanks for your continued prayers and concern.

God Bless!

Dave & Jen

Nazi’s, Codes and our Ongoing Medical Journey

What does a Nazi and a code have to do with Jen’s medical condition? Read on to find out.

Frederich Wegener was a German pathologist who in 1936 and 1939 was the first person to give a full description of the disease that is now afflicting Jen. It came to be known as Wegener’s disease or Wegener’s granulomatosis. However, in 2006, two doctors investigating Wegener’s past, determined that at some point he was involved in the Nazi regime and was even wanted by Polish authorities for possible war crimes. Given his professional past, there has been a desire by the medical community to refer to this disease as P-Anca Vasculitis rather than attaching it to Wegener’s name. (Read more about Wegener in this 2008 New York Times article)

Jen and I take a day to celebrate her birthday by visiting the J. Paul Getty museum.
Jen and I take a day to celebrate her birthday by visiting the J. Paul Getty museum.

By faith, we have scheduled an infusion of Rituxan for Jennifer for this Thursday. I say “by faith” because we still have not been approved by our insurance to cover this treatment. This despite the fact that we have been waiting for 3 weeks for an approval that should probably take 3 days or even less.

So what is the holdup? A code. That’s right, a code. Not a Nazi code but a medical code. Somehow, the insurance company was given a code that represents Jen’s condition that is not accurate. The code is not correct for the diagnosis she has. So we’re scrambling this week to get the code corrected so that Jen can begin the infusions to treat her disease.

While it all seems like a simple thing to correct, somehow when dealing with insurance companies and approvals such as these, nothing is quite as simple as it would seem it should be.

So we ask for your prayers this week. Pray that we would get the approval for the infusion BEFORE Jen gets the infusion. Pray that we would be able to get our doctor and the insurance company to communicate the right information with one another in an expeditious fashion. And lastly, pray that these infusions (she’ll need one per week for four weeks) will put the vasculitis into remission and that Jen will be on the road to managing this disease.

Thanks so much for your continued prayers. We are grateful for your love and support.

Please let us know how you are doing and if there is any way we can pray for you as well.

God Bless!

Dave & Jen