Friday, January 23, 2015

Accepting that which we have no control over . . . . . (and praying fervently)



Our plans to see the retina specialist hit a major speed bump, when said doctor got called into surgery this past Tuesday, the very day when Anna was supposed to see her.  I am not always a patient person.  In my mind, macular edema is a problem, and I just want to know (sooner rather than later) what our plan of action is going to be.  This is the second time an appointment with this specialist has been cancelled and rescheduled.  As I thought this change of plans through, I made sure to tell the scheduler that Anna's ophthalmologist  thought that Anna needed to see the retina specialist soon, and was even concerned that Tuesday's appointment was not as soon as he would have preferred, and that this is the second time we've been asked to reschedule.  The very best the scheduler could do is to make an appointment for this coming Monday at 8:00 a.m.

And now our local weather people (the ones who have a good handle on forecasting weather---the ones I trust the most!), are thinking that the morning commute on Monday is going to be a problem (snow Sunday night into Monday).  I'm still looking at all the pieces of this puzzle and figuring out what to do.  In my mind, rescheduling is not an option.  It's challenging to get an appointment with this doctor.  We have 20 miles to go, but on snow-covered roads, who knows how long that will take!  Maybe spending a night at a hotel in Hershey on Sunday would be the best option.  By the time Anna gets finished with the appointment (anticipating at least one test---an OCT, I'm certain), the roads will probably be much better.  I did call the Hershey Eye Center today, to see if they ever cancel appointments because of weather (didn't want to waste the time and money if the appointment would end up being cancelled by them anyway).  She said they never cancel for weather-related conditions.

We shall see what this weekend brings.  And we will get to Hershey on Monday morning.  On the bright side, maybe school will be cancelled on Monday, so Anna won't miss any classes!

I am confident that God is sovereign over those things I cannot control.  I've done everything I know to do within my boundaries.  (Really, it is not in my nature to scream and yell at the schedulers---this is not their fault, and it's not the doctor's fault that she was called into surgery---someone really needed her more than Anna and other patients needed her on Tuesday.)

Casting Crowns has a song called, "Already There," which helps me have some peace when there are so many circumstances beyond my control, and I can't see how everything is going to work out:

"Already There"

From where I'm standing
Lord it's so hard for me to see
Where this is going
And where You're leading me
I wish I knew how
All my fears and all my questions
Are gonna play out
In a world I can't control

Oh, oh

When I'm lost in the mystery
To You my future is a memory
Cause You're already there
You're already there
Standing at the end of my life
Waiting on the other side
And You're already there
You're already there

Oh, oh, oh, oh

From where You're standing
Lord, You see a grand design
That You imagined
When You breathed me into life
And all the chaos
Comes together in Your hands
Like a masterpiece
Of Your picture perfect plan
When I'm lost in the mystery
To You my future is a memory
Cause You're already there
You're already there
Standing at the end of my life
Waiting on the other side
And You're already there
You're already there

One day I'll stand before You
And look back on the life I've lived
I can't wait to enjoy the view
And see how all the pieces fit . . . . . 


Sunday, January 11, 2015

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.






Sunday, October 12, 2014

Boston Review . . . .

view from Dr. Stephen Foster's waiting area

Our trip to Boston has confirmed that we are definitely "small-town girls" at heart!  We love visiting big cities, but prefer the slower pace and more open spaces of our area.  (And we love living in a valley, with mountain ranges on both sides of us.)

I hardly know where to begin with an update.  Maybe I feel a little bit of pressure, feeling that some (with limited understanding of Anna's issues) may hope for us to have received a quick fix or a brilliant answer from God above revealed through this appointment.  I've learned over the years to "manage my expectations."  In fact, I try to go into many appointments with no expectations, having learned that what I thought I might hear and what I thought might happen are usually NOT what I hear and not what happens.

Because of my continuing conversations with Jesus, I know deep in my soul that He guided us in this direction.  That is not to say that I didn't have concerns--mainly about where we would stay without paying more than our monthly mortgage to stay just two nights and then once I found a decent hotel for a reasonable price---I kept asking Him how in the world we were going to get where we needed and wanted to go, since we were outside the city and not all that close to a "T" stop! (I did NOT want to drive a rental car through Boston and pay all the parking fees which would come with that.) Now those issues were where I saw brilliant answers from God!  We met such helpful people along the way, and it turns out that the hotel we stayed at provided 24/7 shuttle service to the "T" stop and to the airport.  Our shuttle drivers were such a blessing and were so kind and nice.  They also gave us a chance to rub shoulders with the local people---I LOVE to do that whenever we go anywhere---I prefer doing that than to visit tourist attractions.  (AND, God "sang" to me via Casting Crowns songs playing in my head continually, each and every day in Boston---some of the songs I've quoted in previous blog posts--we KNEW He was walking with us with every step.)

So . . . . why did we make the trip to see Dr. Foster?  When we first thought about it (and talked to Anna's pediatric ophthalmologist), it was because she had significant inflammation since January, and I felt like we were spinning our wheels, and her vision continued to get worse (just in the left eye, thankfully), even when the inflammation was finally quieting down.  As indicated in my last post, we figured out that the vision issues were being caused by Macular Edema, which is usually treated by Diamox, unless a person is allergic to sulfa drugs, like Anna.  Anna's doctors in Hershey decided to try an oral Prednisone taper (thinking that maybe this would take care of the Macular Edema.)  They were thinking that Dr. Foster might want to do an injection to the back of the eye, which is not without risks, and they wanted to see if this would help before we had to resort to that. 

Good news---because Anna has been on Prednisone, the left "anterior chamber" (correct medical term) was totally clear of inflammation---has been for the past week or so---for the first time since January 2014.  AND, the extensive testing completed at Dr. Foster's office revealed that there has been significant improvement in the swelling of the macula.  I find that doctors don't get overly excited about Prednisone, though---because staying on it long-term is not good (too many side effects), and once a person stops taking it, the problems can come back. 

The tests done at Dr. Foster's office included a "Fundoscopic examination," which was very interesting.  The technician injected a vegetable-based dye into Anna's vein, and then took photos.  The dye enhanced Anna's blood vessels in the pictures.  The "fellow" we had with us on Friday was very nice, and she showed the photos to Anna and me, and explained them to us.  They do show that Anna's blood vessels in that left macular are still "leaking" a little bit---that's what causes inflammation, she explained (and it's fascinating to see the difference between the right eye and the left eye).

Dr. Foster listed four options to treat the macular edema.  He gave us a sample and a prescription for Prolensa--an eye drop--but he told Anna she would need to take it twice a day "without fail," for probably at least 2 1/2 years.  The other options include "sandostatin," which is an injection, I believe, into the buttocks (long-term, and I think he said maybe daily? for several years); "Retisert," which would be an implant to the back of the eye (that would be more long-term than short-term, as well), or "intravitreal avastin" (the injection to the back of the eye).  Both Dr. Foster and the fellow, Dr. Li, cautioned that the Prolensa is very expensive.  I haven't taken that to the pharmacy yet (since we have a sample), but I'm really hoping that the supplemental insurance through the state will cover what our primary health insurance does not. 

Since it's unrealistic for us to take regular trips to Boston for follow-up care, we will continue to see the pediatric ophthalmologist we always see, as well as a retina specialist at the Penn State Hershey Medical Center (so that she can monitor the macular edema with OCTs, etc.).  And of course, we continue with the Remicade treatments every four weeks.

 

Monday, September 15, 2014

"Something Is Just Not Right!" -- on the road to some answers


For some reason, I've always loved the book, "Madeline"  (by Ludwig Bemelman). Remember when Miss Clavel woke with a fright and said "Something is just not right!"?  Some people have intuition like that.  I sometimes do!  (My husband recently said he needs to learn to trust that intuition, because in many instances, my intuition is right!")

For weeks (maybe months) now, Anna has been saying, "Something is not right!" with her vision in her left eye.  She has mentioned this to the ophthalmologist on several occasions (we've been seeing him at least every two weeks since January) and has explained to him in detail how her vision is different out of her left eye.  He has listened well, and tried a few things (thinking that maybe she had some near-sightedness going on there---but that didn't pan out).  I remember that in the spring, he also dilated her eyes again to make sure he wasn't missing anything.  But all along, her inflammation had been hovering around a 1+, and she had clumps of white cells sticking to her cornea.  So he attributed her issues to those factors.

So many people (including many of you!) have been praying for Anna.  THANK YOU!  Our pastor has been recently praying for her doctors---for creativity to help them figure out how to help Anna.   I've been so thankful for her doctors and the care they give Anna and their wisdom and intelligence that I believe God has blessed them with.  Today we had another appointment with the ophthalmologist.  I was expecting another routine appointment---check the level of inflammation, chat a little about the upcoming trip to the specialist in Boston so that we're all on the same page and so that I have all the background information I need (summary of care) to hand to Dr. Foster in October, etc.  Anna's visual test on that left eye was not the best (not too much different from other appointments).  So the doctor went ahead with the slit lamp examination and found that the right eye is totally clear (as it has been), and the left eye inflammation is down to "trace cells."  With no clumps of white cells sticking to the cornea.  That was the good news.  The bad news was that her vision STILL was not right (and he was thinking that it should be with the "trace cells.")  It should have improved, anyway.  So now the doctor is thinking, "Something is JUST not right."  

He dilated Anna's eyes and examined them more thoroughly.  He was beginning to suspect that she has Macular Edema (swelling of the back part of the eye).  He sent us over to the medical center to get an OCT to confirm his diagnosis.  The photographer explained the images to Anna and me (we were asking a lot of questions---the differences between the right eye and the left eye were blatant---I could see it as soon as he moved the camera from one eye to the next.  He did give us a disclaimer about him being only a photographer and not a doctor---but he's been doing this for 20 years and has a good understanding of the images on the screen). 
right eye (what the doctor sees when he
looks at the back of Anna's eye, and a
cross section.  (This is the normal eye.)
This is the left eye---this is what swelling
in the back of the eye looks like.





















Our reactions to the images have been interesting.  For Anna and I, I think we were feeling validated that yes, something is different.  For Scott (my husband), his reaction to the images tonight was one of compassionate dismay.  Both responses are appropriate, I think.  I'm so sorry that this is happening, but so relieved that we finally know what's going on.  Sometimes I have fleeting thoughts of "Why didn't we figure this out sooner?"  But I'm reminded that God's timing has been perfect in the past, and it continues to be perfect in the present.

It was such a long day (so much more time spent in Hershey today than we anticipated), and we just wanted to get home (and in time for Anna's bassoon lessons, and for her to touch base with a few teachers about what she had missed in school today).  I don't exactly know where we go from here (except another appointment with the ophthalmologist on October 1st, and the appointment in Boston on October 10th).  But I am relieved that finally it's more than Anna and me that is saying, "Something is not right!"  (Something besides the inflammation.)

Tuesday, September 02, 2014

Taking More Steps . . . . .


If you read my blog regularly, you know I usually have songs running through my head all the time!  I figure it's the soundtrack of my life.  The songs for this part of Anna's JA Journey are the same as some in the past.  Focusing on Steven Curtis Chapman; specifically his "Take Another Step" song that I've quoted before:  "Take another step, and another step, when the road ahead is long, and you don't know what to do---take another step . . ."

My conversations with the Lord are constant, but last week, my conversations with Jesus were more frequent and fervent.  Anna was seeing both of her doctors within two days of each other, and we had already resolved with the ophthalmologist that if there was no significant change in Anna's left eye by this week, we should make plans to see a uveitis specialist.  Anna had shared with me (at length as we drove home from an appointment two weeks ago) her concerns about the vision issues in her left eye.  The ophthalmologist had already explained his conclusions for why she's having the vision issues (she described them in detail to him at one appointment).  His thinking is that once the inflammation goes away and she no longer needs the dilating drop, her vision should clear up again.  I think Anna is getting tired of waiting for that to happen, and two weeks ago, the inflammation had decreased (at the appointment on Friday, it went back up to 1+), but her vision had not improved.  More frequent and fervent talks with Jesus (on my part, and I think on Anna's part, as well.)

So this week has been a turning point week---when we decide which steps to take in our journey.  Over the past few weeks, we were presented with two different options for a specialist to see.  My talks with Jesus involved entreaties for wisdom!  I once heard that to intentionally follow God's will often means doing the next wise thing (when He doesn't send down an e-mail from heaven, as I often long for Him to do!).  So while Anna was receiving her Remicade infusion on Friday afternoon, I began to make phone calls.  The wisest choice seemed to be the specialist in Philadelphia.  (The trip would be shorter, and cheaper, and the specialist is nationally known, and recommended by the pediatric rheumatologist.  We're familiar with the Wills Eye Institute, since my mom was treated there for ocular melanoma years ago.)

What seemed to be the wisest choice ended up being a closed door.  (I like closed doors sometimes---then it's easier to turn away and go to the other open door, instead of agonizing over the choice between the two.)  To get an appointment with the doctor in Philly meant a six-month wait (unless the doctor deemed otherwise, but he's away for two weeks).   Six months?!?!  Anna has had chronic uveitis (usually at 1+ inflammation or more) for the past 8+ months.  I don't want to wait another six months for some answers.  So I called Dr. Foster's office in Boston.  They could have made an appointment for September, but we decided on October instead, since Anna has a few days off school in the middle of the month.

Since we have to be on this journey, at least we can have
some adventures along the way.  I like Boston!  Anna doesn't remember our visit there in the summer of 2001---she was too young.  So she is eager to go again (and pinning some tips and places on Pinterest!)  I like to fly---and we're choosing to fly up and use public transportation (which we like to do in big cities.)

There's an older song that often flits through my head at various times.  I can't remember the artist, but it says, "For such a time as this, I am placed upon the earth, to hear the voice of God and do His will . . . "  I have no idea why we are on this journey or why we now need to go to Boston to see a specialist.  But I DO know that Jesus loves us beyond measure, and that He makes all things work together for good (maybe not right this minute, but eventually---God's time is not our time.  His ways are not our ways, His thoughts are not our thoughts---but He LOVES us).  So whatever the purpose--whatever the plan, we continue to take another step, and another step . . .

Monday, July 14, 2014

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.


Friday, May 16, 2014

Wrestling with God (and He continues to offer songs, people, direction, and peace)


Lay your head down tonight
Take a rest from the fight
Don’t try to figure it out
Just listen to what I’m whispering to your heart
‘Cause I know this is not
Anything like you thought
The story of your life was gonna be
And it feels like the end has started closing in on you
But it’s just not true
There’s so much of the story that’s still yet to unfold

And this is going to be a glorious unfolding
Just you wait and see and you will be amazed
You’ve just got to believe the story is so far from over
So hold on to every promise God has made to us
And watch this glorious unfolding
Oh, these song lyrics!  This "Glorious Unfolding" song must have been recently released for radio broadcast, because I've been hearing it on my favorite station, WJTL.com (90.3) for the past two weeks.  God has used it to speak over our life and to my heart in various ways lately.  (I own the album, so I've had an opportunity to listen to it previously and get to know the words and upbeat melody.)
In this journey/race of life, the road has been rather busy and rough lately.  We've had two infusions of Remicade so far (the latest one just last Wednesday), but Anna's vision in her left eye is worse than it has been.  The inflammation is at a 2+.  The level of inflammation has held steady since last Wednesday (at least we can be grateful it's not worse), although her vision today was slightly worse in that eye --- she couldn't read the (sight test) line she was able to read last week.  Clusters of cells have clumped on the cornea, and that's why her vision in that eye is slightly impaired.
I was SO hoping and thinking that these Remicade infusions would "fix" the problems with Anna's eyes.  I often shake my head at the society in which we live being such an "instant" society---and we've come to expect "instant" fixes to everything.  I find myself having those exact expectations, even though I really do know better.  
I've been wrestling with God---working through all of this, longing for some sort of peace in the turmoil and worry over the Anna's vision.  He's provided calm doctors with knowledge and solutions to propose.  (Calm doctors who sound confident in their knowledge and wisdom really help me to maintain a level of calmness.) He's provided friends and family who constantly keep in us their thoughts and prayers and encourage us when we need it most.  He's opened up the lines of communication with just the right people at just the right time at Anna's school, to help her work through the pressures which she puts on herself to be the best student that she can be and to accomplish all the work which needs to be done in the next few weeks as school winds down (taking into consideration a LOT of missed classes for appointments, Remicade infusions, and then another day off last week for the funeral of her grandmother).
So where do we go from here?  The dose of Remicade will be increased for the next infusion (early June).  We had the option of going back on Cyclosporine until the next Remicade infusion, but in conference with the two doctors, we decided to go with adding Methotrexate injections instead.  I am actually happy with that, and the doctors seem to think it's a good decision.  (I know so many parents balk at Methotrexate, but I'm actually more comfortable with it than with other medications, including Cyclosporine---I've come to dislike Cyclosporine for Anna.)  For the past ten days, Anna has been using the Pred Forte drops six times per day.  I am very, very grateful that she has not had problems with those drops.  In her younger years, her pressures would rise fairly quickly after just a few weeks of Pred Forte drops.  But she's been on them since January, and her pressures have remained lower than the right eye (which is perfectly fine).
I sometimes wrestle with how much to share here.  Anna would prefer to err on the side of privacy.  But we also want to provide a realistic picture for other parents and families, and hopefully at least a little bit of hope for those who are traveling this journey behind us or beside us.  Although life currently is not as "normal" as it used to be (for this season, at least), we are not in despair.   God doesn't mind that we wrestle with Him---we work out our faith and grow in our relationship with Him as we continue on this journey and work through the hard parts.  On my hardest days, my meditation often is, "May the God of hope will you with all joy and peace as you trust in Him."  I'm hanging onto hope, and enjoying the little bits of peace I'm feeling as I continue to trust in Him and hold on to every promise He has made to us --- as we continue to see how the rest of this story is still to unfold --- we know that ultimately, it WILL be a glorious unfolding---and we will be amazed!   

Sunday, April 27, 2014

"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!)

Monday, April 07, 2014

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 . . . . 

Saturday, March 29, 2014

Circumstances We Would Not Prefer

I LOVE the "undo" features that come with most computer software.  It is such a relief when I am creating letters and and flyers and newsletters, changing things which sometimes become a mess.  And I can just hit "undo".  The mess goes away, and I can try a better fix.

This week, I wish there was a way to "undo" the switch to Cellcept.  But no going backward in life.  We have to pick up from where we are and move forward.


If you've read my blog posts before, you know that God has a way of playing songs in my head at times.  About two weeks ago, I remember waking up early hearing the words to "Even If" by Kutlass:

Sometimes all we have to hold on to 
Is what we know is true of who You are 
So when the heartache hits like a hurricane 
That could never change who You are 
And we trust in who You are 

Even if the healing doesn't come 
And life falls apart 
And dreams are still undone 
You are God You are good 
Forever faithful One 
Even if the healing 
Even if the healing doesn't come 

Lord we know your ways are not our ways 
So we set our faith in who You are 
Even though You reign high above us 
You tenderly love us 
We know Your heart 
And we rest in who You are 

You're still the Great and Mighty One 
We trust You always 
You're working all things for our good 
We'll sing your praise 

You are God and we will bless You 
As the Good and Faithful One 
You are God and we will bless You 
Even if the healing doesn't come 
Even if the healing doesn't come

Songwriters: WOOD, TONY / KRIPPAYNE, SCOTT
Even If lyrics © Sony/ATV Music Publishing LLC

Since the phrase "even if the healing doesn't come" kept repeating more than the rest of the song, it felt like a forewarning in some ways.  And rightly so.  Scott took Anna to see the ophthalmologist this past Thursday.  I was home with a stomach bug.  He stopped by the house before going back to work, to tell me that  in the span of ten days (since the last appointment), Anna's left eye had gone from an inflammation level of 1+ to a 4.  (On a scale of 1 to 4 for those of you who are unfamiliar.)  Scott's assessment of Cellcept for Anna is summed up in one word:  "worthless."  Her inflammation has never been this bad.  The two doctors conferred via phone while Scott and Anna were there, but Scott asked them to call me about any final decisions.

Anna's pediatric rheumatologist called me to discuss options.  We're going to go with infusion therapy.  (Something to be thankful for---there is no agonizing over all of the pros and cons of this decision for me---it HAS to be done---I AM constantly praying for clear direction.)  The question is just the choice between Orencia and Remicade.  He's doing a bit more research and will let me know and start the necessary steps for insurance approval.  That could take awhile, evidently.  So since we need to do something before we can make infusion therapy happen (could take weeks, and most likely, more than a month), we have stopped the Cellcept and started on Cyclosporine.  Anna had responded favorably to Cyclosporine in the past, until she began to experience noticeable side effects.  But since she'll be on it for weeks instead of months, the hope is that she'll be stopping the Cyclosporine before the side effects begin to appear (more hair growth, and darker hair---like eyebrows and upper lip--, gum growth, etc.)  Anna continues to take the Pred Forte eye drops four times daily, and a dilating drop at night (to keeps those cells from sticking together when they begin to cluster).

I want my friends, family, and blog-readers to know that I believe in my loving, Creator God, and I know that He is faithful, and I know that He walks with us and loves us more than we can ever imagine.  I've said that before---many times over.  Sometimes I talk about feeling calm and feeling peace.  To be totally honest, right now I'm not FEELING much of anything (but feelings are fickle---I know---we cannot rely on feelings!).  I am human, so there are aspects of this disease and this development that strike some fear in me at times, if I allow myself to dwell on that.  There are times when I receive news such as this when I know I need to absorb and process the information (and allow a few tears to escape at times), before I'm really ready to talk about this with anyone.  There are so many things going on right now (BUSY, busy schedules around this time of year, still a lot of appointments to get to, schedules to rearrange because of appointments, unexpected stomach bugs, etc.)  When life seems overwhelming and we face even more "circumstances we would not prefer" (phrase borrowed from Priscilla Shearer from the Session 5 DVD of the Gideon Bible Study), we go with what we know, not what we feel.  We hold fast to our Anchor for the Soul, because how else could we handle storms such as these?