Well, 2015 is officially in the books! It’s been a challenging year in many ways as we started out with Jen being in the hospital for a week. But God is good and we’ve been blessed in many ways. Jen has been slowly improving since her condition was stabilized in February and there are many fun memories to revisit – from the boys starting high school and excelling at Cross Country, to getting our first family pet, the boys flying on a plane by themselves for the first time, to seeing friends & family members we hadn’t seen in a while.
Here’s a 2 minute video glimpse of 2015 for the Lowe Family. Have a Happy New Year and here’s to hoping for a blessed 2016!
This last month has been full of milestones and new steps forward for us.
You might remember that a few months ago, Jen had cataract surgery on her right eye. One of the side effects to being on Prednisone for an extended period of time is that it can cause cataracts to develop. Jen’s vision in her right eye was so obscured by an enlarging cataract that her ophthalmologist recommended that she get the surgery.
The surgery was a success but at a follow up appointment about 6 weeks later, her doctor recommended that she get cataract surgery in her left eye because that cataract had continued to grow. So in mid-November, Jen had cataract surgery on her left eye as well.
Not long after that, on November 19th to be exact, Jen took her last Prednisone pill. Jen has been slowly tapering down on her Prednisone dosage since February and finally, she had reached the point where she could eliminate this medication from her daily pharmaceutical regimen. It was an exciting moment for sure.
Last week we experienced another milestone in our continuing recovery. For the first time in 20 months, Jen and I traveled together for a conference related to our work. It’s not often that we get excited about traveling out of town for a bunch of meetings, but I admit that I was looking forward to a change of pace and connecting with our colleagues from other cities.
Our meetings in Austin were an opportunity for us to rub shoulders with about 20 other Cru staff around the country who are ministering to Millennials in their respective city locations. it was great to be with like-minded people who have a passion for the Lord and are trying innovative approaches to connecting with and ministering to the 20-somethings in their cities. We came away inspired and full of new ideas.
And in a strange twist of irony, Jen was asked to do some training on coaching that she has learned because the original presenter, a Cru staff mentor of Jen’s, had to back out due to some personal health issues.
About a week before our trip, Jen was asked if she could step in and provide the coaching training to our group since she has received extensive training through the Leadership Development program of which she’s been a part for the last 4 years. It was not an ideal situation, given that Jen’s only prep time was during Thanksgiving week, which we had already planned to take off, but Jen did a fantastic job helping us to learn coaching techniques that will help us immensely as we coach Millennials and train others to be mentors to Millennials.
Thanks for your continued prayers and support as we continue to move forward in this crazy journey we’ve been on. We are amazed at the Lord’s goodness towards us and we’re extremely grateful for you!
What a difference a year makes. Last year at this time, Jen was at home recovering from an 11 day hospital stay as her doctors struggled to stabilize her Vasculitis condition.
In January, Jen had another flare and spent another week in the hospital as doctors blasted her body with high doses of Prednisone in an effort to get her Vasculitis under control.
This last year has been filled with unknowns and uncertainties, along with anxiety, worry and plenty of discouragement. We’ve been sustained by the prayers and words of encouragement from our many friends and family.
I remember getting a hand-written note in the mail from a friend who’s also on staff with Cru. Her husband had been dealing with an unusual spinal condition that had been hard to diagnose and treat for over a year. She wrote me a note as a fellow care-giver encouraging me to continue trusting the Lord and praying specifically that by the same time the next year, our situation would look much better and we would be well on the road to recovery.
I was very touched by the thoughtfulness of her note but admit that it was hard to imagine what things would look like in a year.
Things have been steadily progressing for Jen and our family since we began seeing Pulmonary and Rheumatology specialists at UCLA in February. By getting Jen on an immunosuppressant that her body can tolerate, Jen’s condition has become stable, allowing the doctors to begin slowly tapering her off the Prednisone drug which has caused so many negative side effects. In fact, by God’s grace, Jen will be completely off Prednisone on November 20th (two days after she has her 2nd Prednisone-related cataract surgery)!
This fall has been a new season in the life of our family. Jacob and Joshua have started high school and are running on the Cross Country team. Jen and I are taking steps to establish our ministry to Millennials & Jen has resumed her role as part of a team that oversees a leadership development training program for leaders throughout Cru.
In fact, we experienced a small milestone of sorts in early October. Jen boarded a plane for a week-long conference in Orlando related to her Leadership Development role, while I drove a group of 7 unruly freshman and sophomore boys to Clovis to compete in a Cross Country race. It marked the first time in 18 months that either of us had traveled outside of the Southern California basin. It was a significant step for us and our family as we’ve journeyed on the road of recovery.
Yesterday marked the conclusion of Jacob and Joshua’s first season running Cross Country in high school. It’s really been a great year for them and they capped it off with their best race of the season at the league finals. Joshua finished 4th and Jacob was 5th (1/10th of a second behind Joshua) among freshman boys. Their excellent finish earned them both freshman all-league honors.
As I was sorting through the plethora of pictures I took at the meet, I came across one that caught my eye that I wanted to share with you. Unbeknownst to me, Jen was in the frame of pictures I took of Jacob and Joshua sprinting toward the finish line. In the pictures, Jen can clearly be seen cheering Jacob & Joshua on.
To me, it was an accidental bonus to get Jen in the picture of Jacob and Joshua sprinting to the finish. But more than that, this picture illustrates what we’ve experienced in our lives as a family these past 18 months. As we’ve struggled to move forward, experiencing obstacles and barriers that might discourage us, you, our friends and our family, have been there cheering us on, encouraging us to press on.
Thanks for encouraging us to keep pressing on, and please continue to pray for us and cheer for us as we keep sprinting toward the goal!
It was my junior year of high school and I was at an all day wrestling tournament. As I sat in the stands between matches, I looked across the gym to the other side at the many butcher paper posters that were hanging on the wall cheering on the various teams that were competing. Only, I couldn’t read what they said. I turned to my mom and asked, “Can you read those signs on the wall over there?”
“Yes, can’t you?” she replied.
“No, I can’t see them clearly.”
That was it. The next week, I went to the optometrist and I’ve been wearing glasses ever since.
I often wonder what people did before the invention of glasses. There’s nothing more frustrating than not being able to see things clearly.
Up until last year, Jen had always had perfect vision. Reading up close and seeing things far away had never been an issue, that is, until her long-term Prednisone usage caused cataracts to develop in her eyes. She suddenly found it difficult to see her computer clearly and things at a distance were out of focus.
At first, her eye doctor didn’t want to give her prescription glasses, thinking that her vision would correct itself after she reduced the amount of Prednisone she was taking. But after several months with no change, she went back to the doctor and finally got prescription lenses. The glasses definitely helped, but not as much as we expected.
After several more months of fuzzy vision, Jen went back to the eye doctor and learned that her cataracts had grown and she was going to need surgery.
Two weeks ago, Jen had cataract surgery on her right eye and it’s made a HUGE difference. She no longer needs the glasses that she was using for distance vision. She’s still having difficulty seeing things close up though. We’re not sure if that’s just the normal vision adjustment that we all go through as we age, or if it’s a result of the cataract in her left eye causing her vision to be blurred.
The same day Jen had cataract surgery, I took Jacob and Joshua to see the optometrist.
Joshua started wearing glasses in elementary school while Jacob’s vision seemed to be fine until last fall, when he complained of not being able to see the board in class clearly. A quick eye exam revealed that he too needed glasses for distance. But his vision changed and he recently has complained again about not being able to see things at a distance clearly, even with his glasses.
The eye doctor confirmed what we had suspected. Both Jacob and Joshua needed new lenses as their old prescriptions were no longer adequate.
Because they’re active in running, we decided to let them get contact lenses so they would be able to see, not only in the classroom, but out on the trails as well. This past Saturday, they were able to run in their first invitational with contact lenses.
It’s amazing how much clear vision can affect our perspective and our demeanor. I was reminded of that recently via a Facebook video that went viral showing a 6 month old baby’s reaction to getting glasses and being able to see clearly for the first time. You can check it out the whole story on YouTube at: https://youtu.be/cI1jBVD1OY0.
I’m finding that having a clear vision in ministry is important as well. For the last year and half, our vision has been impaired by the circumstances of life. It’s not that we don’t know what we want to see the Lord accomplish or even have some ideas about how to go about it, but it’s more like the circumstances of life have acted like a cataract, creating barriers out of our control that made it difficult to focus.
But the good news is that with Jen’s condition more stable than it’s been in the last 18 months, we are finally beginning to see things more clearly and with more focus.
We’re excited to move forward on the journey the Lord has us on. There are still challenges and circumstances that are making our journey different than we had imagined but we are anxious to see how the Lord will use us to impact Millennials in Orange County and the surrounding Los Angeles area.
Thank you for journeying with us and for being our eyes even when we were not able to focus clearly. We are extremely grateful for you!
The weather in Southern California is great almost year round. While much of the country was under several feet of snow this past winter, we had almost spring like weather conditions here. It’s one of the things that makes Southern California such an attractive vacation destination and it’s also why so many people want to live here, which in turn explains why it’s so expensive to live here.
In June, however, most of the the Los Angeles and Orange County basin experiences a phenomenon that has come to be known as June gloom. I’m not a meteorologist, so I can’t explain all of the meteorological conditions that contribute to June gloom. I just know that for much of June, for some reason, a thick marine layer often creeps in off the coast and envelopes the southland, creating overcast skies in the morning that often burn off by late morning or mid day.
Because our house is located up against the Saddleback mountain foothills at about 800 feet elevation, we often will walk out of our house in the morning to clear, sunny skies. But as I drive down the hill to take the boys to school, it’s not uncommon for us to drive right down into that marine layer where it’s overcast and the sun is not directly visible.
This last year for us has felt a lot like June gloom. It’s as if one day everything was going great and it was sunny outside, but then we experienced some health issues that felt a lot like driving down into that thick marine layer.
For the last year, life has not had the clear, sunny outlook that we would want. Instead, it’s been overcast and even foggy at times. Life has been challenging and at times we’ve wondered if we would ever see the sun through the dark clouds.
These last few months have given us hope that perhaps the June gloom clouds are beginning to burn off and dissipate. We are beginning to see signs of the sun peeking through.
Several months ago, when we started seeing experts at UCLA, Jen was put on a new immunosuppressant that seems to be working. As a result, she has been able to slowly taper down on the amount of Prednisone she’s taking and that alone has helped her to begin to feel more like herself each day.
A few weeks ago, Jen was able to be on a conference call with a work group with which she’s been involved. That was a big step forward since she’s had to disengage with much of her work load for many months now.
Last Sunday, Jen was asked to share in front of our church congregation a bit of her journey this past year with her health and how God has met her in the midst of the challenges of life. It was another key moment in her recovery, not just physically, but emotionally and spiritually as well. (You can watch the video interview online at: vimeo.com/130399778)
Things aren’t back to normal by any stretch but there is more hope now than anytime in the last 8 months that perhaps this disease can be managed and we can fully resume the mission to which we’ve been called.
We’re so grateful for your prayers and the way you’ve cared for our family this past year. Would you please continue to pray for our family and for Jen’s continued recovery?
Pray specifically for Jen’s blurred vision to clear and for her lung capacity to increase. Pray too that the side effects of long-term Prednisone use would continue to dissipate.
We continue to trust the Lord for this road we’re on and we pray that the Lord might find us faithful and fruitful as we follow Him and serve Him.
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.
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.
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.
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 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!
“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.
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.
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.
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.
“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.
(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.
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!