Life Goes On . . . Joy in the Journey

Anna and her brother Joel at a recent family wedding

Anna is about ten days into her second year at college, after a good summer with a full-time office job and living on campus, building relationships with new friends. After last year's classes, she has a better picture of what career path she doesn't want and other areas she would like to explore and persue.  (Isn't that what the college years are all about?!).  She's sticking with the same major course of study of Human Development and Family Science but choosing a different minor.

While Anna's joints are doing well, her left eye never did settle down completely with the macular edema, even after the ocular injection at the end of spring.  We've been taking trips to the retina specialist about every 4-6 weeks all summer to keep tabs on the swelling. This past month's OCT (the picture of the back of the eyeball) showed that the swelling is a little worse than the July appointment.  We return in mid-October, and another ocular injection is an option if the swelling does not improve.

The GOOD news is that Anna continues to focus on the journey of life in general instead of the JA Journey being at the forefront.  It probably helps that we cut out the monthly Remicade infusions nearly a year ago.  (Even though that situation created more of a challenge in controlling Anna's diseases.)  Those 4-hour appointments, in addition to appointments with the rheumatologist and the eye specialist (every appointment 20 miles away through heavy traffic, which could take anywhere from 30-60 minutes) kept Anna's issues at the forefront of our minds and lives.  We've gained a lot of perspective in the last year or so. Anna was a Child Life Volunteer for her spring semester, and she saw patients and families who practically live at the children's hospital.  My husband, in his work setting, is getting to know a college student whose sister has been in the hospital for a few weeks now.  The more I listen to people, the more I realize that ALL of us have "something" that we're dealing with.  After 18+ years of this JA Journey, I hear other stories of even greater trials and hardships that people are facing and think, "With God's help, we can certainly handle this!"  Jesus is our strength when we are weak.

For now,  I'm glad that Anna is smiling and is enjoying being a young adult.  She truly is finding JOY in this leg of the journey. 

Big Change Ahead -- Taking a Leap Into the Unknown

Ready or not---we are taking a different path on this journey.  Anna was scheduled for a Remicade infusion this afternoon, but before we headed to Hershey, her new adult rheumatologist had scheduled an appointment to talk (a little closer to home---she was in a satellite office today).  She (the adult rheumatologist--Dr. S.) is concerned about the results of some labs that Anna had done last month.  Dr. S. says that the numbers indicate that Anna is heading toward medication-induced lupus.  I have always tried to be mentally prepared before these appointments, so I had been thinking about this appointment and all of the possibilities and options available.  I was assuming that maybe we would taper the Remicade and discuss other biologic therapies.  I was not mentally ready to hear that we are stopping Remicade for Anna, and all of the other TNF-inhibitors are now "off the table," because it's not just Remicade that can cause medication-induced lupus.  It's all of the biologics.  The Remicade infusion for this afternoon was abruptly cancelled. No more monthly 4-hour appointments in Hershey.  The course for now is to continue with the Methotrexate (not increasing it, because the liver enzymes numbers have been slightly elevated lately), and continuing the frequent appointments with the eye specialist so that we know what's happening with the uveitis.

There are a multitude of thoughts and emotions that I have experienced this afternoon (I can't speak for Anna, although we talked a little bit about this as I took her back to the college).  On the one hand, I feel like cheering and maybe dancing, because she is done with those potent biologics.  That alone deserves a celebration---maybe?  On the other hand, there's a little bit of panic.  The battle over the years to control the uveitis and protect Anna's sight in her left eye has been long and tough and heart-wrenching at times. We have relied on first Humira, and then Remicade, to "keep the beast at bay."  On the one hand, I am not a doctor, and Dr. S. knows SO much more than I do.  On the other hand, I keep thinking, "Has she read Anna's medical history?  [I think she has.]  Does she know the extent of the uveitis flares we've experienced in the past?  What in the world is going to happen with Anna's eyes since we're quitting biologics 'cold turkey'?!"  I don't want Anna to have Lupus, but I also want to protect her eyesight.

If you have read most of my blog posts, you know that the Lord often speaks to me through songs.  After the appointment today, a song was playing on the radio, and that little voice in my head kept bring my attention to some of the words of Matt Redman: 

Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful

We are definitely taking a gigantic leap into the unknown, and it's a little frightening.  Yet we know that God has been faithful in the past and will continue to be faithful, and we never walk alone.

Fix Our Eyes . . . . .

"Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart."  Hebrews 12:1-3 NIV

I've been hearing and seeing "Fix Your Eyes . . . ." quite a bit lately---in studying, in songs, in worship services, etc.  I know what it means---we need to focus on Jesus.  Know who He is, and how much He loves us, and remember all of that whenever we are in the midst of the hard things in life.  As I was gathering my thoughts to update this blog, I realized that "Fix Your Eyes" is a great title for this post---not only for the spiritual meaning, but because Anna's eye (that left one) needs "fixed."  

Anna's left eye, this past Monday, was at a 2+ flare again.  Two weeks ago it was down to trace cells.  Sigh.  Last time we had a flare like this (a month ago), her vision was still 20/20 in that eye.  This time, the inflammation was affecting her vision in the left eye---mostly blurry.  (We are SO thankful that the right eye remains clear of inflammation!) So we increased the number of daily Pred Forte eye drops, and increased her Remicade dose from 12 mg/kg to 15 mg/kg.  There's still room to increase the Remicade again if we absolutely have to.  It worked out on Monday that Anna was able to get the increased dose that afternoon.  She had already been scheduled for an infusion, and her appointment with the ophthalmologist was two hours before the infusion.  A flurry of phone calls and confirming with the infusion room nurse took care of everything. 

We go to see the retina specialist next week, and Anna will need an OCT (picture of the back of the inside of the eye) to see if the macular edema has returned.  All of this in the midst of finishing up projects and studying for the final exams of high school, and "senior meetings" leading up to high school graduation.  We do our best to run this race with perseverance--fixing our eyes on Jesus and the joy that is to come.

One thing I wanted to share with all of you . . . . you hear my thoughts in every blog post, but you don't always hear Anna's perspective (her source of strength and her faith).  I was designing her graduation announcements this evening, and there's a place for some text on the back of the card.  I asked Anna what she wanted there, and she gave me a verse from the Bible.  This is Anna's perspective on her life and journey:

My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever.  Psalm 73:26 (NLT)

It's that Eye Again . . . . Getting used to Bumps in the Road

In a dream world, as we prepare for Anna to graduate from high school and move on to college and her adult life, we could hope and pray that we could set aside Juvenile Arthritis and Uveitis in the same way we are preparing to put her childhood in the past.  But we don't live in a dream world, as reality reminds us.  Two weeks ago and five days following Anna's last Remicade infusion, the pediatric ophthalmologist looked into Anna's left eye with the slit lamp and surprisingly found 2+ inflammation.  And he said that he could tell by the exam that this wasn't a one-day flare; those cells had been present for probably at least a week.  So we increased the Pred Forte drops to four times a day and went back for another eye exam a week later.  Thankfully, one week of increased drops was enough to calm down the inflammation to just trace cells.  We were able to decrease the drops again.  Pressures were on the verge of being high (21 for both eyes), but the decrease in Pred Forte should help bring those back down.

We've also adjusted Anna's Remicade schedule.  We had been stretching out the infusions to every five weeks, but I called and rescheduled the next two infusions so that she will receive the infusions every four weeks, as initially prescribed.  

Anna has just a few more weeks left in her high school experience.  As we count down the days, we also have many, many events on the calendar (as you can see on the picture to the right, which is my actual calendar for May!---concerts, appointments, prom, family gatherings, etc.  Sometimes these bumps in the journey (unexpected eye inflammation) can cause some fear, but I plan to be very intentional in the next few weeks to exhale and enjoy the present!  Turning away from fear because our lives are in the hands of Jesus, who gifts us with each new day.
 

Smiles, Joy, Hope . . . . . and shifting focus for now.

After nearly two years of uveitis, macular edema, and jaw reconstruction surgery overwhelming our thoughts and our lives, we are finally on a even keel and peaceful section of this JA journey. Since I last posted, Anna has had a Remicade appointment, a visit to the Lancaster Cleft Palate Clinic to adjust some brackets and wires, and a visit to her ophthalmologist.  That was a great visit!  Both eyes were still clear, so we took a step by eliminating the Pred Forte drops.  First time to be totally off Pred Forte drops since January 2014.  Now that is worth celebrating!!! (After almost a year of seeing the ophthalmologist and his office staff every 2-6 weeks, we now don't have to go back for awhile---I cheerfully told them, "Happy Thanksgiving, Merry Christmas, and Happy New Year!  We'll see you later!")

So how does Anna keep busy when she doesn't have many medical appointments to fill her time? Besides her high school classes, attending football and now basketball games to participate in the student cheering section, she has been working diligently at a particular piece of music for District Band auditions last Saturday.  Some of you know that this was actually a concern for me.  Anna had a 2-month hiatus from playing her instrument in August and September--and into October. When she picked up the bassoon again after her jaw reconstruction, she had to get used to her teeth feeling different.  They were now in a different position, so she had to find a new and comfortable position for them as she plays her bassoon.  When she would practice long and diligently, she could feel her jaw swelling.  One evening, after playing for well over an hour, she said she could feel a lot of pressure in her jaw.  (Another night, she began putting her instrument away after ten minutes of playing, because her jaw was already beginning to swell.)  I was continually recommending ibuprofen.  But the great news is that she successfully made it through auditions!  She will have about six weeks in January and February that will be intensive in learning music and playing her bassoon for District Orchestra, District Band, and for County Band.  I know some of you pray for Anna a lot (Thank you!).  If you think of her after the new year, you can pray for her about these musical festivals and the well being of her jaws and her stamina.  Just one full day of auditions wiped her out physically.  As I look at the schedules for these festivals she will be participating in, I can see that she will be very busy, and I know already that she will be exhausted once these two-day events are over.  But we know that God promises to go before her, and He will give her strength as she needs it.  (Since beginning Remicade, there are times when she will go to bed early and sleep for 12 hours straight if she doesn't have to get up for anything like school or church.)  She will just need a day or two of sleep once she returns home.

Despite these little concerns I have about the music festivals, I am SO very glad that she once again has these opportunities--especially during her senior year of high school.  And two of the three festivals will be over before her college class begins, so that will greatly help.

For now, we are focusing on preparing our hearts and our home for the Christmas season. We love this time of celebrating the birth of Jesus with family and friends---knowing that because of Him, we can truly have hope and joy along this journey of life---through the good times and in the tough times, as well.  We have experienced His love and His peace (more each year, as He shows us His mercy and grace continually), and as I say in this year's Christmas card, it is our joy to worship and celebrate Him daily, but even more so during this season.

Moving Right Along, and Some Realities of Remicade

Anna and her brother, Joel

Anna continues to make post-surgery progress.  She tried eating some Chex Mix last week, and decided that she is now ready to eat chips and snacks again.  Today she asked if we could eat at Texas Roadhouse---her first attempt at eating steak since her surgery.  She can do it, as long as she cuts it into tiny pieces and takes her time.  That's the key to eating for her (and I believe we as a family have all slowed down our eating a bit, so that Anna is not left eating alone at the end of a meal---and that's a good habit).  I remember about two months ago, the orthodontist told Anna that by October, she would feel almost normal again, and be able to eat almost all of her normal foods.  He was right!  Patience and perseverance.  That's what it took.

The only medical-related appointment for Anna over the past few weeks was her Remicade infusion on Friday afternoon.  We had scheduled it so that Anna could participate in a field trip to the Carlisle Army War College that day.  She had a great time and had much to tell me and show me (from pictures from her phone) and exclaim about when I picked her up. It was a beautiful day on Friday for a field trip, and the students were outside all day in the wind, touring and walking and visiting the interesting outdoor, interactive museum on the grounds.  On the 20-mile drive to Hershey for her Remicade treatment, she became increasingly subdued, prompting me to ask her several times if she was doing okay.  She was just tired and wiped out.  And then a few hours of Remicade dripping into her body increased her tiredness.  Once we arrived home at 8:30 p.m., she went straight to bed and slept for 12 hours.

This is the reality of Remicade for Anna.  Whenever she has a long day (even though it may be filled with fun and interesting moments), her body needs adequate time to recover---usually a "day for a day" as I've noticed. We take the bad with the good.  The Remicade infusions allow Anna to have the vision to fully enjoy field trips and other pleasures.  So I'm thankful for Remicade to some degree.  I get concerned as a mom when she is abnormally quiet and subdued.  But I'm learning to accept that and know that "this, too, shall pass---with adequate rest." I'm a realist.

We want to thank everyone who prays for Anna and for us.  We know that there are times when the Lord is carrying us through the challenging times and giving us peace and sometimes working to adjust our attitudes.  We have so much to be grateful for---like the fact that Remicade even exists and is helping to control Anna's uveitis.  And for the insurance that covers the cost of the Remicade (I was astonished when I saw a recent insurance statement which had the cost listed, and it humbled me to know that this cost has been covered by Anna's two insurances---I know I cannot take that for granted.)

A Reflection, Recommended Reading, and a Brief Update

There are some days when I realize how long we've been on this journey that we've been called to travel.  Anna was diagnosed with Juvenile Arthritis just before her second birthday. This past week, she celebrated her 18th birthday. Obviously, this road does not end on any certain birthday. So we continue.

In the very early days (back in 1999), I came across the following verses from the Bible, and at the time--in that moment--it seemed like a direct message just to me (from 2 Corinthians 1, from the New Living Translation):

God Offers Comfort to All

3 All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort. 4 He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us. 5 For the more we suffer for Christ, the more God will shower us with his comfort through Christ. 6 Even when we are weighed down with troubles, it is for your comfort and salvation! For when we ourselves are comforted, we will certainly comfort you. Then you can patiently endure the same things we suffer. 7 We are confident that as you share in our sufferings, you will also share in the comfort God gives us.

When I read that in 1999, I was definitely feeling mired in our "troubles," (the shock of having a child diagnosed with a chronic disease that will not be fixed with ten days of medication) and these verses were (and still are) a huge comfort to me. We've grown and matured since then, and while the road is not always easy, Jesus gives us strength and peace when we have none to offer in and of ourselves.  He holds us up when we feel rather weak.  We have always prayed that in all that we go through, in everything we do, that we will see who God is.  And we have.  Our prayer has also been that others will be able to know the love and presence and comfort of God through our circumstances, as well.

I am humbled when our experiences have been able to help other moms (and dads, too!). There are newly diagnosed JA children all the time, and parents who at first are in shock, who feel alone, who are overwhelmed by trying to understand this diagnosis and its implications, who are wondering what the future holds for their child.  They get a lot of information from great pediatric rheumatologists and their nurses, but sometimes they just need to hear stories from other parents who have been where they are.  We can help with basic information, comfort, encouragement, and hope that the future does not need to be bleak.  We have groups on Facebook, where information and encouragement and support is shared.  There are family-oriented conferences and activities offered by the Arthritis Foundation and some other groups.

And for those parents who are wanting to read everything they can, I do have some recommended reading---books which have been great sources for me.  One book which explains a whole lot about muscle, bone, and joint pain; rheumatic diseases, and the latest treatments as of 2004, when the book was written by Thomas J. A. Lehman, MD.  (Believe me, a lot has changed in treatment in the last 11 years, but this book is still excellent, and written to the audience of parents---in language we understand!)  I just saw on-line that Dr. Lehman has another book available, "A Parent's Guide to Rheumatic Disease in Children."  I just ordered that one from Amazon.com.  This is a newer book, published in 2008.

A book that doesn't speak to rheumatic diseases, but to discussing why God doesn't always choose to immediately fix all of our problems and troubles is by Laura Story:  "When God Doesn't Fix It."  This book just came out a few weeks ago, and I ordered it and read it last weekend.  As I was reading, in my head, I kept saying, "Yes! Yes! and Amen!"  So much truth and love in this book.  It is one of those books where you want to quote a multitude of her sentences to your friends and family!  So much so that I am just recommending that everyone read the book for themselves.  Laura Story is a singer/songwriter, and I also recommend her music---so much of what she has learned and heard from God is written into her songs, and this love and truth just sinks into my soul as I listen (usually when I'm working in my kitchen---that's when I usually put music on.)

To all JA parents and families---let's continue on this journey with hope, with a sense of calling, with the truth of God's love and comfort throughout the entire road, but especially in the rough patches along the way.  We can have a good cry every now and then (sometimes I just need some "moments" or "a day" to deal with some of the rough detours before I'm ready to get up and move forward), but we have something to offer to each other:  encouragement, advice, support.

Oh---and an update on Anna!  She's beginning to regain some feeling in her lips and gums and face, although she still has some areas that are numb.  (This is to be expected.)  She still needs to be careful with what she eats---still can't bite into a lot of things.  She was hungry for a good hamburger today, but ordered a hamburger steak, since she knew she would have to cut it up in little pieces and eat it with a fork. Anna just had a Remicade infusion a few days ago, and they took blood work, and this time, her doctor asked for some more specific numbers to check on her iron levels.  Although her hemoglobin, hematocrit, and red blood cell count were all just a little low, they were not far from the normal range.  That is good news, since there have been some days when she has seemed rather pale and tired.  We'll continue with the iron supplements for now.

Blessings in the Unscheduled Stops in the Journey

"Have you ever noticed how God has a blessing on the unscheduled stops along the journey?"  -- Beth Moore

If you have been following along on our journey, you already know that our summer schedule was discombobulated in June, when our plans for Anna's jaw reconstruction surgery came to a screeching halt.  At the time, it seemed like God was closing the door and locking the door.  So we rethought our plans for the summer and rearranged some things.  We were resting in the truth that God loves us beyond measure and this is part of His plan, even though we don't totally understand. We've learned again how to be flexible with our schedules and take things one day at a time.

As the weeks have passed, we've faced a few obstacles, we've called on our friends and family for prayers for wisdom and guidance along the way, and we have seen God working---creating that "pathway in the wilderness" as Isaiah 43:19 describes.

Our medical insurance carrier changed in July, and that has been a GOOD experience for us! Our previous carrier had denied coverage for Anna's surgery.  The secondary insurance she has through the state was considering coverage of the surgery, but even up to the point where we had to cancel Anna's June 1st surgery, they were still wanting more information and hadn't given the green light.  The surgeon's office has been frustrated with insurance companies lately, as more and more are denying this type of surgery, even after appeals.  The surgeon has had to make some decisions, and now (as of the beginning of July), before the pre-op appointment, his office needs to have approved pre-authorizations in place, or the surgery will be canceled.  Our new insurance approved the surgery---over a week before her pre-op appointment!  And the secondary insurance gave the green light, as well---they will cover what the primary insurance doesn't cover.  They agree that Anna's surgery is medically necessary.  Even the surgeon's scheduler was so relieved when she received that word!  She told me she did not want to cancel Anna's surgery a second time. (Anna's Remicade was also approved by the new insurance carrier---that was also a blessing, because a few years ago when we changed insurance providers, the Humira pre-authorizations took weeks and many phone calls and debates.)

Another issue was the inflammation in Anna's left eye, which had resurfaced in June.  The retina specialist had increased the frequency of the steroid eye drop.  Anna saw the ophthalmologist last week, and we left with smiles on our faces.  Both eyes are totally clear, and the pressures are on the lower side of normal.  I was holding my breath as the pressures were measured, because I was expecting those eye drops to cause a spike in the pressure of the left eye.  Not so!  Huge blessing!

Another huge blessing has been that I have NOT been asked to serve on the jury for the District Court (yet).  I remain "on call" for the month of July, but I don't have to check in again until this next Friday.  One more week, and I am free and clear!  I've gone from week to week unsure of whether I would need to scramble to find family or friends to take Anna to some important appointments.  (Hubby is really busy at work, and family and friends are pretty busy, as well.  I just haven't wanted to inconvenience anyone.)

And so now surgery is four weeks from tomorrow:  August 10th.  We'll continue to take each day as it comes.  Anna has been diligently practicing her bassoon, knowing that she will have a forced hiatus when her teeth are banded together for several weeks.  We have appointments coming up with all but one doctor (the ophthalmologist, who won't see her until early September, since the retina specialist will see Anna less than a week before surgery to keep tabs on the eye inflammation).

Our journey continues . . . . . God continues to refine us on this journey which He has called us to travel.  He is also building our faith as we see Jesus working through the little details and surprising us by removing some obstacles along the way.  We are so thankful for Him and for the prayer support and the loving compassion and care we receive from family and friends.

Well, hold on---the road may get a little rocky . . . . .

Anna reads a book while waiting for the retina specialist

We had an appointment with the retina specialist today.  She monitors the macular edema, which hasn't been a problem for months (thank the Lord!).  Anna had seen the ophthalmologist almost three weeks ago, and he saw only "trace cells" in the left eye. Today, I think (and the retina specialist believes) that Anna's weeks off Methotrexate and a prolonged span between Remicade infusions (because of the upcoming and then postponed surgery) has caught up with the eyes.  There is a "dusting" of white cells around the cornea. (She let me look at them through the lens she uses with medical students and residents---that experience was simultaneously interesting and dismaying---because of what I was seeing.)  The answer is not simple, because of the postponed surgery, scheduled for August 10th.  Anna started back on Methotrexate last week, but will have to take a break from it again closer to the surgery date.  We will schedule Remicade for sometime in mid-July and then again about two weeks following Anna's surgery.  Anna is to increase the frequency of both the Prolensa and the Pred Forte eye drops for now.

I've heard many wise mentors ask people, "So what has God been saying to you lately?" And because I've heard that question asked throughout the years, I've worked to listen carefully to what God is saying to me (just in case someone asks!---and besides, I want to know!!!). I had a lot of time to listen this morning, because at the crowded Eye Center at Hershey Medical Center, there is a lot of waiting time.  (We arrived at 8:30 a.m. and left at noon---sometimes I've thought they should provide treadmills for patients and parents, so that we're not constantly sitting or making people nervous by walking around in small spaces!) A few things came to mind today.  I recently heard or read that if we truly knew God and who He is, we would never need to fear anything at all.  I was thinking about this before the eye exam, and that was a good thought to be meditating on.  And the song in my head this morning (all morning---before and after) was Colton Dixon's song "Through All of It."  I'll post a video below.  And on the way home, on the radio, a song reminded me that "God is in control."  He truly is our anchor---our steady rock, when the road gets a little bumpy.

I know so many people are praying for Anna and for us.  Thank you!

Realities of the Journey . . . . .

Oh, my!  In the last two and a half months since I last updated this blog, I've thought many times about an update, and most specifically, a title.  Many title possibilities have crossed my mind, and from late October to the present, the gist of the title has certainly changed.  Here are some of the options, which will give at least a little summary of the roller coaster journey:

Not a Fan of Oral Prednisone!
When we returned from Boston, Anna had been on oral Prednisone for about a week or two.  But side effects began surfacing.  Her thought processes were in a mess, and her emotions were very scattered and a bit crazy.  We were in touch with her rheumatologist, and he gave us a faster taper schedule.  The good news about the Prednisone:  it cleared up whatever was causing Anna prolonged pain in her one big toe.  That hasn't returned.

Truly Thankful at Thanksgiving
Anna had an appointment with the local pediatric ophthalmologist just before our Thanksgiving holiday.  Her vision was 20/20.  No inflammation, although the doctor described a "haze" or a "flare" being present --- no actual cells floating around.  What he described is like a haze of humidity/steam after a summer rain---the moisture is still in the air until a front comes to blow it out to sea (we live on the East Coast, and that's how many of our weather patterns occur---it's what I'm familiar with).  He wasn't worried; he was actually very pleased.  Anna had also seen a new doctor---a retina specialist at Hershey Medical Center, who will be monitoring Anna's macular edema issues.  A new OCT (imaging of the eyeball) at that appointment showed that the macular edema had improved since her last OCT.  Good news!  The retina specialist basically said let's not change anything right now, since she's improving, and we aren't exactly sure which latest change in her medications we can attribute the positive changes to.

Anna also saw the pediatric rheumatologist just after Thanksgiving.  Joints remained quiet, and he was pleased with the reports on the eyes.  Anna was in a negotiating mood.  She had previously talked the ophthalmologist into allowing her to stop the dilating drop she was on---he said okay, although he couldn't promise that she wouldn't ever have to use it again.  And then she was cheering when the prednisone taper was rushed.  Since the doctor brought up the idea of maybe trying to decrease Methotrexate a little, Anna asked if she could switch back to the oral Methotrexate instead of the injectible (she has psychological issues with the shots).  He agreed.  We stayed at the same dose---just a different form, knowing that the injectible Methotrexate is probably more effective than the oral.

I always try to be thankful, even in difficult circumstances, but for Thanksgiving 2014, it didn't take much effort to come up with things to be truly thankful for.  We were counting our blessings, indeed!

Feeling Good Towards the End of 2014!
or A TRUE Holiday!
I often spend time reflecting when a year comes to an end (it's always good to take stock of where you've been and where you're going, I think!), and after Christmas, as we moved toward a new year, I was thinking how challenging 2014 was in so many ways.  This JA Journey in 2014 seemed like a hike up a high, rocky, tough mountain.  But I kept thinking that at the year's end, we seemed to be nearing the top of the mountain where the view is really great---sometimes AWESOME if the weather is just right.  I wasn't juggling my work schedule and projects with doctors' appointments as much; Anna was able to attend school fairly regularly, so she wasn't getting behind in her school work.  I was "breathing a little easier" as far as Anna's health issues go.  I was taking a break from replaying in my head doctors' thoughts, theories, and opinions (lots of variation there!) to decide which one I trust most and agree with for Anna's overall health's sake.   The holidays (Thanksgiving, celebrating the birth of Jesus, and celebrating the new year) were not just holidays in name only---I felt like we had been given a true holiday from health issues (once Anna had her Remicade the week before Christmas and my son had his wisdom teeth removed the day after that---we put all health stuff on the back burner to celebrate Christmas and some time off to spend with a whole lot of family and friends.)

And then we arrive at 2015---a new year, with only the knowledge that God walks with us wherever we are.  He sees and understands.  He's already in our future and knows how all of the pieces will fit together once the big picture is done.  There are a whole lot of options for a blog title to begin the new year:

Navigating the bumps along the way
Finding the joy when troubles come our way (from James 1:2-4)
Developing our character and endurance (from Romans 5:3)
Sometimes, during our drive to Hershey in 2014, Anna would warn me when she thought a visit to the ophthalmologist may not be a good appointment, because she knew something was going on with her vision that was not good.  She forgot to mention anything to me this past week as we made that drive which has become so familiar.  So when she was taking the vision test and couldn't really see the larger, circular letters, I realized that our "holiday" was officially over.  Reality has set in once again, and we choose to deal with the realities.

Although the local ophthalmologist doesn't have the equipment to do an OCT in his private practice (that's why we've added a retina specialist at The Eye Center at Hershey Medical Center), he used the equipment he does have to see as much as possible into the back of Anna's left eye, he could tell that it's different than the right.  Just the vision test itself gave me a good indication that the macular edema is a problem again--that's it gotten worse than it was in October.  Dr. M. asked Anna when she first noticed a change for the worse in her left eye vision, and she said right around Christmas time.  I later asked her why she hadn't mentioned anything to me, and she said it was very gradual, and she just forgot to mention it, and she knew she had an appointment coming up soon, anyway.

The bottom line and most probably cause of this decline:  at Anna's appointment in November, she was probably still benefiting from the oral Prednisone, which she had just finished taking.  Those effects have worn off.  And Anna really does NOT want to go back on the oral Prednisone.

So where do we go from here?  We'll see what the retina specialist says on the 20th.  (I really do like her.)  Time for various thoughts and statements to swim through my head now as we wait for Dr. N's opinion.  Anna was not able to tolerate Sulfasalazine (problems within the digestive system many years ago when she was 4 or 5), but two of the doctors are wondering if she would be able to tolerate Diamox (a sulfa-based med), which is normally used to treat macular edema---they are considering that.  Dr. Foster has prescribed Prolensa drops, which Anna continues to take, but one doctor says that prescribing Prolensa for Anna's macular edema is like sprinkling water on a raging fire.  It's not going to do much at all.  He doesn't know what Dr. Foster thought that would help.  (Anna's macular edema had improved a bit by the time we were in Boston---it wasn't nearly as bad as it had been in August.)

Our worship service speaker this morning spoke from the book of James, first chapter.  A few years ago, I started memorizing that book (only got to the first 12 verses before life got in the way of memorizing Scripture).  But I love how the Lord seems to speak directly and clearly to me when it's time to face some big and hard realities of life (even more so than when life seems fairly carefree).

"Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy.  For you know that when your faith is tested, your endurance has a chance to grow.  So let it grow, for when your endurance is fully developed, you will be perfect and complete in every way, needing nothing."  James 1:2-4 NLT

He allows these circumstances because He knows that when our faith is tested, our endurance has a chance to grow.  Endurance is a foundation for character.  And character produces hope.  (from Roman's 5:3)

I may have quoted Victor Frankel before, from "Man's Search for Meaning," which all of my Messiah College alumni friends (from my years in college, anyway) will be familiar with---we had to read it for one of our general education courses.  We may not be able to choose our circumstances, but we can choose our attitude.  Victor Frankel spent time in a concentration camp, and yet he still chose his attitude.

We may be at the foot of another tall, high mountain for the coming months of 2015, but we'll choose to keep our focus on the bigger picture.  Until then, we carry on with life, not letting the realities of JA and uveitis and macular edema consume us.  Anna just participated in District Band this past weekend (beautiful concert of gorgeous band music), and she has County Band and County Orchestra coming up in the next few weeks, as well as playing the bassoon in the "pit" for the high school musical, "Peter Pan" in March.   We love staying connected with family and friends, and appreciate the love, support, and understanding we receive from them---we are surrounded by a great support system.  We "keep on keeping on."  Life is still good.  God is still good.  His plans for us are good.  We know that, and we trust Him.

We Keep Singing . . . . even though it's been a little dark

A favorite author, Cindy Woodsmall, posted a quote today:  "Faith feels that dawn will break, and sings while it is still dark."  We are a singing family, and sometimes the on-going health issues seem to have a darkness about them.  So this quote seems so appropriate to describe the year of 2014 so far.

I'm not feeling particularly eloquent tonight, but this blog needs updating.  I know many of the blog followers want to know what's going on with Anna in her JA journey.  Other JA parents like to know about life with Juvenile Arthritis and Uveitis.  It truly helps to know that none of us are on this journey alone.  We have each other, and for those of us who put our faith and hope in Jesus, we know that He is with us on this journey---no matter whether we are feeling Him or not.  For me, and for Anna, He is the source of our strength---our "strong tower," our hope, our anchor.  Despite everything that has happened these past several months, one of the true highlights of 2014 for Anna was attending the Creation Festival (Northeast)---celebrating our Creator!, and especially seeing and hearing her favorite group, "For King and Country."  She was excited to see the above photo on the Creation website, and she found herself in the picture!

The summer has been busy with trips to and from Hershey at least every two weeks, sometimes even more frequently.  (Plus a few visits to the oral surgeon, and a trip the Lancaster Cleft Palate Clinic as we begin to get her teeth into place for eventual jaw reconstruction.)  Add to that daily Pred Forte eye drops, a dilating drop at night, Remicade infusions (every four weeks), and weekly Methotrexate.  Except that Anna has not had her last two Methotrexate injections, because she developed what would seem to be a small infection from the extraction of her four wisdom teeth and four front molars (that was in mid-June).  Her ophthalmologist sighed a little when we told him that (about missing the Methotrexate recently)---her left eye has maintained inflammation at a 1+ level for the past month at least, with no improvement.  While we are so thankful that the eye is not worse, we're getting a little uncomfortable with the duration of this level of inflammation, and the negative effects it's causing for her left-eye's vision.

I've talked to God a lot about all of this!  He has answered.  I've heard Him---with loving whispers from Him, songs and peace and assurances that we can trust Him for the entire, big, beautiful picture, despite the fact that He's not planning a sudden, healing miracle in the near future (I got that message from Him, too).  So we continue to sing, praise Him in the storm, thank Him for protecting Anna in many ways (her brother ended up with a bacterial infection at Creation, but Anna didn't!, and she hasn't experienced a whole lot of really negative side effects from her various medications so far).  I also pray for her doctors a lot (and thank God for them and the wisdom and intelligence He has given them).

And when the worrying seems to get a little heavy at times, I remember the lines of a Newsboys song from their "Adoration" CD:

Lord, I don't know where all this is going, or how it all works out.
Lead me to peace that is past understanding; peace beyond all doubt.

"In the Arms of God, Who Won't Let Go"

God continues to speak to me through so many various songs lately as we travel this journey.  On Easter Sunday morning, we were singing a song I've sung countless times in my lifetime.  I had even prepared the PowerPoint slides for Sunday's worship service, but the relevance of the words didn't truly sink in until I was staring at the words on the wall as we sang, "How sweet to hold a newborn baby . . . but greater still the calm assurance, this child can face uncertain days because He [God] lives."  ("He Lives," Gloria Gaither | William J. Gaither; © 1971 William J. Gaither, Inc.)  Such a perfect reminder for me, especially when my heart's desire is to live what I truly believe.  Since I believe that I serve a living, loving God whom I can trust with all of my heart, then I can trust my children's "uncertain days" to Him.

And then there's a Casting Crowns song I first heard at a concert I recently attended.  Just purchased the album two weeks ago and had a chance to really listen to it yesterday as I was cleaning my kitchen.  "Just Be Held" has such beautiful words and a beautiful message:

So we continue on this JA Journey, knowing that God is painting beauty with the ashes and our lives are in His hands.  We ARE finding Him in the storm, and where we are, He holds our hearts.  We can come to Him, find our rest, in the arms of God who won't let go. (from "Just Be Held," by Mark Hall, Bernie Herms, and Matthew West)

Since I last updated this blog, we've had a flurry of activity, putting plans into place, and Anna has had her first Remicade infusion.  No problems, really, so far.  Anna doesn't always like to broadcast what's going on with her life (she wants to be known for who she is as a person--her character qualities--, and not for her diseases), but last week it was time to explain exactly what's going on to the staff at her high school.  She's been missing quite a bit of school for appointments, and will now be missing more because of infusions.  She had just been telling them, "I have health issues, so my absences are necessary."  There comes a time when the people you deal with on a daily basis need a few more details, and it was time.  (I'm SO thankful for the school district we live in---couldn't ask for more understanding staff there.)  She does have a lot to catch up on (not much gets studied or worked on during an infusion day---just mostly sleep).

I feel like some of the pieces of our life's puzzle are fitting together lately (at least as far as scheduling).  The first few Remicade infusions are now on the calendar, and some insurance details have been worked out for Anna's wisdom teeth extraction (they need to use a surgical room for that, because of the structure of her jaw and the way her tongue sits---the oral surgeon feels it's medically necessary, and insurance didn't want to cover that cost at first).  We also decided that we needed to wait until school is out to have that done.  So we now have that scheduled for the week after school lets out (two weeks after the June infusion).  That's helped to know when to schedule her next visit to the orthodontist in Lancaster.  As of right now, I don't have any short-term medical appointments that are up-in-the-air, waiting for another detail to be in place before I can nail down a specific date.   

I HAVE found some definite positives lately:  Anna's eye inflammation is down to a 1+ (while still concerning and not good, it sounds a whole lot better than a 4+!).  I was able to take all of her unused, leftover medications (Cyclosporine, Methotrexate, Leucovrin, Lidocaine for mixing with the Humria, etc.) out of the "Anna's Medication Box" on the counter and put them up in the cupboard for now.  Anna says it's a little strange not to have to remember to take medications at home (besides the eye drops she currently uses).  We are VERY thankful to stop the Cyclosporine.  Anna had a list of side effects that she was experiencing, even after just a few days of taking it.  It's good to find little things to celebrate and be thankful for.  We have NO appointments this week!  That's definitely cause for celebration!!!  

I was reminded this morning of our purpose and goal.  In all of life, in the good and the bad, our prayer is that we remain "a witness to the resurrected Jesus."  (Thank you, Pastor Dean, for those words.)  Because Jesus lives, we can face tomorrow.  We don't need to fear.  We know He holds the future.  Life is worth the living (even when troubles come) because He lives.  (Happy Easter one week late!)

We Have a Plan . . . .

As of today, we have a plan.  And we have a little breathing room.  At Anna's appointment with the ophthalmologist this past Thursday, the inflammation was better.  A 2+ instead of the 4+ inflammation a week prior.  (ANY inflammation is not good, but a 2+ actually sounds good after a 4+!)  Anna's pediatric rheumatologist has researched the latest information available to decide between Remicade and Orencia.  The plan is to start Anna on Remicade.  Then, once her eyes are quiet, he will switch her to Orencia.  This will happen soon, but we still have some things to do, like wait for the insurance company to approve the Remicade, get a TB test for Anna (that will happen this week), and settle on a time frame for the infusion.  Anna didn't realize until tonight that this means she will no longer be taking Humira.  She seemed pleased with that.  She's glad that she can give herself injections, but it's not her favorite thing to do.

I choose to share Anna's story here, because for so many years, I have wanted other parents to know that Juvenile Arthritis does not HAVE to overtake your life.  (Things I wanted to read when Anna was first diagnosed and I wanted to have a glimpse of what life might be like in the future.)  I do have to concede that for the past few months, this disease (more the uveitis than the arthritis in the joints) has interfered with our lives a little more than we would like, although not nearly as much as some families experience.  I do believe, though, that this is just a season of life.  Although we cannot choose our circumstances, we can choose our response.  So we continue to choose to pray for those who make decisions for Anna's care, for wisdom and clear direction.  We choose to find all the things we can be thankful for, and we've seen and felt so many answers to little and big prayers.  We choose to laugh and set goals for the future.  This may be a sizeable bump in the journey, but the journey is not done yet!  Stay tuned . . . . 

His Grace Is Enough . . . . (Update on Anna, family, and questions for God)

So many ways I could begin this post:  The bottom line is the update on Anna:  the injection to the elbow worked wonders!  Within days of receiving that shot of cortisone, she is back to having full range of motion and can easily do all the normal tasks of life without having to compensate for an elbow that would not extend or bend normally.  The eyes are another story.  Despite a flurry of changes in dosages and then medication, her left eye is not responding.  It's not getting worse, but it's not getting any better.  Something different though, from previous flares--despite having Pred Forte drops four times daily, her pressures remain in normal range!  And this is after six weeks of those daily drops.  SO thankful for this, since Anna's pressures usually rise quickly even when she has been on two weeks of two drops daily.  (That was several years ago.)  

The photograph above is my view of the ophthalmologist's exam room, and I've seen it many times since January, usually every 7-10 days.  Something else to be thankful for:  the location is about 20 miles away from home.  The doctor was mentioning that he has a family who comes every other week from over 100 miles away.  And I thought Anna's appointments have been really eating into our schedule--especially her school schedule!

For those readers who, like me, want to know what happens next if the inflammation continues, the ophthalmologist says he'll give it one more month.  If it's not any better, then we need to consider a different medication.  The rheumatologist had already mentioned "infusion therapy" if the Cellcept doesn't get the inflammation to subside.  We've talked in the past about pros and cons of Remicade and Orencia.  My guess is that the infusion therapy would be one of those two. 

In the midst of all of this, I have just finished up two surgical procedures (3 weeks apart) to fix two significant issues which have been plaguing me since the end of October. Thank the Lord, I've been released from the acute care of two different doctors, and all I really need to do now is get over the "anesthesia haze" which always takes me several weeks to do. 

So a lot has been going on with the family!  I have been happy, though, to get back into a Ladies' Bible Study, and we are doing Priscilla Shirer's "Gideon" study.  This has "homework" which really has us digging deeper into God's Word and seeing what God has called us to do and be, and how He uses our circumstances to accomplish His purposes, and equips us with His strength when the tasks seem hard and dangerous.    I've also been reminded that God welcomes our questions, but there are many, many times when we ask questions which He has already answered in His written Word---great incentive to get into and really learn to KNOW His Word.

There are so many times when the Lord has spoken to me, and very frequently through songs which are playing in my head when I wake up in the morning, or one passage of Scripture which constantly pops up in various places and ways during the course of a week or two.  But this past week, He was definitely speaking through a clear but soft voice in my head.  In my Bible Study homework, we were encouraged to write into one side of a chart the questions we ask God.   And then there were a sets of Scripture verses to look up---ones that would answer many of the "usual" questions that people often take issue with Him about.  None of them really answered the two questions I put down, but we were encouraged to go back to the questions on our chart, and pray about those questions, and write down what God was saying to us (encouraging us to see if we had answers from Scripture).  So my one question was, "Why isn't the inflammation in Anna's eye responding to treatment??!!"  Every time that question even hovered in the back of my brain, I would instantly hear, "My grace is sufficient."  So instead of the question just hovering, I intentionally talked to the Lord about Anna's eye inflammation.  And the answer I knew I needed to put on the other side of that chart was again speaking more loudly in my head, "My grace is sufficient."   (That verse was no where in the homework---but definitely in my head.)

So then I go to our weekly Bible Study session (yesterday), where we watch the DVD, and this week's session was powerful and inspirational.  As Priscilla Shirer was winding down this session, I was looking in the notes of the book for Session Three, and she had several Scripture references in the notes.  I looked at the very last reference in the notes, and it was 2 Corinthians 12:9.  Since my memory for Bible verses (at least bits of them, memorized in my childhood and teenage years) is fairly decent, but my ability to remember references is somewhat lacking, I wasn't sure which verse that was.  So I looked it up, and KNEW that it was definitely there for me in that moment (thinking about Anna's uveitis all week---or the past six weeks---and anticipating another visit to the eye doctor that afternoon).

2 Corinthians 12:9  (written in red letters in my little NLT Bible)  Each time he said, “My grace is all you need. My power works best in weakness.”

So there it is.  We continue to trust God and His purposes and calling on our lives.  (When we are afraid, we will trust in Him ---somewhere in Psalms!) The doctors are doing all that they know to do  (Dr. M. was going over that out loud with us---explaining that in January he dilated her eyes, even though it was a late appointment and he hadn't planned to do that---he wanted to make sure that there wasn't something else going on in her eye, and making sure that there wasn't something he missed, with such unexpected and significant inflammation after almost two years of quiet eyes).  We continue to pray for Anna's doctors and thank God for their wisdom and knowledge.  We are continually thankful that Anna so far has experienced very minimal (if any) side effects from the potent medications she puts into her body.  We live knowing that we are precious to God and He allows some circumstances in our lives for ultimate good and to show others who He is. He holds us in the palm of His hand.  (Now how can we be afraid when we know that?)  We continue to pray that the inflammation will go away.   Until it does, God's grace is sufficient.