A Little Rough Patch in the Journey

As Anna continues to hold the reins of control in her medical journey, I am usually now just observing (and praying!).  And she still asks for my advice sometimes---like which doctor should she call---on a Sunday morning, should she call Hershey or just go to Urgent Care?  When the issue in question is the eye, my immediate response is "call Hershey."  Anna woke up this morning thinking she had pink eye.  She did call the Eye Center at Hershey, as the on-call ophthalmologist wanted to see her as soon as she could get there.

She may or may not have pink eye (conjunctivitis).  In fact, the doctor didn't give her any antibiotics.  But he did find some inflammation in the front of the eye (the right eye this time---not the left eye, which has the most complications).  He said that it's very possible the inflammation was causing the itchiness and irritability and redness. So he prescribed some increased Pred Forte drops for the next two days and an appointment to see her retina specialist on Tuesday morning.  Anna has been dealing with a cold virus, which has likely exacerbated her eye issues.

While Anna was driving herself to Hershey and taking care of her medical needs, I was with my small group at church, going over some very wise words from James MacDonald in his "Lord, Change My Attitude" study.  MacDonald was talking about "a specific combination of circumstances that might be stretching us or about something He's allowed to keep us close and humble . . . instead of disrespecting God with [our] complaints, see this as your best opportunity to draw near to Him and let Him provide what you need for the situation."   So that's the perspective we will take with this bumpy stretch of road in Anna's JA Journey.  

I have come to the point where I realize that we have little control over Anna's uveitis issues.  We're doing the best we can by partnering with doctors whom we respect and trust.  The rest is in God's hands.  There are so many little things to be thankful for----that we live within a relatively short distance to the medical center, that as soon as Anna calls and explains who she is, who her doctor is, and her present situation, they say, "Come right now," even on a cold, Sunday morning when the doctor also has to drive to the Eye Center just to see her.  We can be thankful that she drove herself home with no problem, even though her eyes had been dilated (she didn't tell me that until she was safely home---she knows I don't like her driving with dilated eyes).  We can be thankful that she will see her retina specialist in two days, instead of waiting until January 24th (her previously scheduled appointment).  We are very thankful that this is

all happening before she heads back to college this week.  (When she started having some cold symptoms, I told her that if she was going to get sick, at least it's happening about a week before classes begin again, and before she goes back to dorm living!)

Some of you who read this are believers and pray for Anna.  Thank you so much!  The fervent prayers of the righteous are powerful and effective.  In these combination of circumstances, God has indeed provided for our needs in so many ways. I never want to take that for granted.  

Unexpected GREAT News!

Well, many of you know that we experienced several weeks of thinking about worsening macular edema, possible solutions with definite risks, and wondering how we were going to juggle an increase in appointments in Hershey (that comes with the territory whenever the eyes have issues).  And then, as my last post discussed, the threat of a snow storm on the morning of Anna's appointment which had already been rescheduled twice.  I've been having constant conversations with God, asking for wisdom, and as the first chapter of James tells us, thanking Him, knowing that He will give wisdom abundantly when we ask!

We ended up with a family adventure---drove to Hershey (in light rain) and camped out at a hotel overnight (I never knew that this hotel offered a flat rate discount for patients of Hershey Medical Center!  That was so nice---it pays to be a little chatty when you make inquiring phone calls)  Even though the storm was not as severe as predicted, it was nice to have a complimentary hot breakfast at the hotel (slow, quiet night and morning at the hotel---there was only one other couple in the large dining area), and to only travel about three minutes over to the campus of HMC.

We explained the recent history to this retina specialist (only the second time we've seen her), including the major concern three weeks ago, when Anna's visual acuity was tested (and found to be problematic) at the ophthalmologist.  We had an OCT done, and it's amazing!!!  That OCT (an ocular CT scan---it takes photos of the back of the eyeball) is the most normal OCT I've ever seen of Anna's eyes.  Whatever problem there was three weeks ago (and there was, indeed, a problem, and Anna said then that she had noticed a change since Christmas) is gone.  Wow!  Awesome!  so instead of talking about the not-so-great options for treating macular edema, we can cancel next week's appointment with the ophthalmologist (and reschedule for six weeks from now), schedule the next appointment with the retina specialist for late April, and talk about the short-term goal of getting Anna totally off the Pred Forte drops, using Methotrexate and Remicade to keep things under control.  (Of course, we can call and get in to see either doctor if Anna notices any adverse changes.)

I have a tendency to over-think anything and everything in life.  And it's easy to do so now.  Is this a miracle?  I have no idea.  The doctor said that macular edema can come and go (I had no idea that it could go away THIS quickly!).  Why has God allowed this to go away now and not anytime last year?  I have no idea!  I'm all for accepting that God allows things in our lives to refine us and to help us grow and mature.  I have worked to accept that.  For whatever reason that we have this wonderful turn of events, I am so grateful and inwardly dancing with joy and thanking God over and over that our lives are not going to become even more complicated in the next few weeks with added appointments and treatment options.  If I use the analogy of trying to keep a row of spinning plates balanced and spinning, I can say that I feel like someone has removed one plate---one less plate to spin, and that is a HUGE relief.

We are so grateful for the prayers and support and encouragement we receive from so many friends and family.  We're thankful for you, and so glad that we can share great news that we are on a easy road at least for now (jaw reconstruction surgery is still on the horizon for early summer).

For today, we are joyful.  We are smiling.  We are laughing.  And we're laying down some of our concerns.  It's been a good week so far!

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?

Update since May . . . . .

We've had a busy spring!  Since I last posted, Anna had bilateral injections to the TMJs (she's always been mostly asymptomatic with the TMJs, so I'm thinking that they are helping but don't know for certain).  We also had an eye appointment.  There is a trace of inflammation in the left eye again---but nothing overly concerning.  Back on Pred Forte eye drops (once daily to the left eye).  Pressures are fine.  We can handle all of that.

Life goes on, and Juvenile Arthritis and uveitis is taking a back seat to everything else in our life at the moment.  (Thank the Lord---it doesn't consume our lives---but I'm very thankful that her disease is mild and stubborn instead of raging, as some children and teens experience.)  Anna has a summer job!  (She wanted to do this!  We didn't tell her she needed to!).  It's a good job with good hours for a 14-year-old, and she's having fun, making new friends, and learning things.

We also took a trip to Nashville, where Anna's sister Abby was married just last weekend.  Two more weddings to attend this summer, but I'm thinking that the next month overall may be a little less busy than May and June (hopefully).  Anna will see the pediatric rheumatologist in July, start pre-season cross country training in August, and enter high school as a freshman this fall!

Better News . . . . Sustained Improvement!

I've been meaning to give an update for the past month. Anna had an eye appointment about four weeks ago, and we were so pleased that the changes we had made resulted in improvement! The added Pred Forte drops and Methotrexate (with the accompanying Leucovorin) has indeed been effective in decreasing the eye inflammation down to a trace of cells in each eye. Four weeks ago, at that appointment, the doctor was happy, and I was happy, even though I'm a true realist and know that we're making progress in a battle, but the war may be ongoing for some time. For the past four weeks, we were able to decrease the eye drops from three per day to one a day.

Anna's next eye appointment was this afternoon. Another day to be so very thankful! Both eyes again have just a trace of inflammation. Eye pressure in each eye (17 in each, for those who are familiar with eye pressure numbers) is also very good, especially considering she has been on steroid drops. We can now drop the Pred Forte drops and go back in six weeks for another check.

Since Anna has been back on Methotrexate for a few months, she needs frequent labs once again. Our regular lab (a few blocks away from our home) closed at the end of the 2009 (the building had been sold, and the new owners had other plans for that space). We loved that lab, and the people there had been a gift from God to us when Anna first started Methotrexate and was so very scared of needles. But she is now more a young lady than a child.

Since we had to make a change in labs, we made major changes. We decided to have them done 20 miles away at the Hershey Medical Center (since we're in the area so often for eye exams anyway), and she decided to try them without the Emla cream. Also, at the old lab, the lovely people were so good about allowing Anna to use the blood donor lounge chairs and always gave her a snack, and basically welcomed her like family (when my husband went in to give blood once, they looked at his paperwork and said, "Oh! Are you Anna's dad?!"). All of those special concessions and arrangements were part of our plan to get Anna comfortable with labs since she had to have them every 6-8 weeks and started at an age when she was rather needle-phobic. Now Anna has grown up, and she said it was no problem just to sit in the regular old lab chair--no need for the comfy lounge chair. So today while in Hershey, we found the building we needed, found the lab, and were in and out in five minutes! Since Hershey Med has Anna in the system, there was no lengthy registration process (like at the old hometown lab). While Anna may not get to know these people like family (Hershey Med is a great place with great people on staff, but it's so large with so many patients coming and going that it's not usually a homey/family feel), this is still a good change.

The photos above are from Anna's experience with her school's Quiz Bowl team. She's been working and practicing hard, and was able to participate as one of her team's alternates. Her team did so well at the regional competition, only losing to the first and second place teams. Such an intense but fun day! (When she wasn't participating in a particular quiz session, she sat with her brother, Joel to watch her teammates.)