Thursday, March 09, 2017

Still in a Storm on This Journey . . . . Update

I can recall many times over the past three decades when we faced rough spots, and I've said to myself, to my husband, and to my children, "God has been so faithful in the past, and we can trust Him to be faithful in the present and in the future." Sometimes His faithfulness doesn't mean that we see a miracle.  Sometimes things get worse.  I do know that when our journey gets stormy, and I share with our support system (our friends, family, and network of families going through similar circumstances), that support system lifts up Anna (and us) to Jesus.  We continue to pray for Anna's body as the Plaquenil (at a half-dose now, because of adverse side effects) does little, if anything, to keep the inflammation at bay, not only in both eyes, but also at least one joint.  Anna's knee has been very painful these past ten days.  We also pray for Anna's doctors as they work to determine what will help Anna with the least side effects.  

Anna had an eye appointment yesterday.  My husband went with her instead of me this time (he already had a day off, and I didn't then have to interrupt my work day and make up time later).  When I got home, I saw the OCT (the picture of the back of Anna's eye), and the swelling (macular edema) is definitely back.  I didn't see Anna before or afterwards--she is so busy with college work as she gets ready for spring break.  So the realist in me has been a little sad, a little worried at times, wondering how Anna is doing (emotionally and physically), remembering how the first several months of 2014 were when the macular edema first surfaced, and stress was very real, and school work (high school at that time) suffered.

However, Anna just "Voxed" a message to me this evening.  (We use an app called "Voxer" and she and other family members and friends can record messages---sort of like verbal texting---we can send pictures and videos and text messages, as well, individually or in groups.  Our family really likes it, and we use it frequently.)  She sounded upbeat, even though she has a LOT of work tonight and tomorrow before spring break---said she wouldn't even be able to listen to any replies I may send or read the latest e-mail I sent her last night.  As she is processing all that is happening, she assured me that this recurrence of the macular edema and eye issues is different than when Humira failed in 2014.  Anna was thinking that I would probably be updating this blog soon, and she gave me some positive thoughts to share:

  • In 2014, when her vision was a problem, we had no idea what was happening, and it took weeks if not months for the pediatric ophthalmologist to realize that maybe she had swelling in the back of her eye (he did not have equipment to test for that). Now we know what macular edema is.  It's no longer an "unknown."  And she trusts the retina specialist to stay on top of the issue and do what needs to be done in order to do everything possible to preserve her eyesight.
  • In 2014, she was going back and forth between the pediatric ophthalmologist and the retina specialist, and juggling the two very different personalities and methods and relaying information from one to the other--that was stressful!  Before entering college, Anna pared down to one eye specialist---keeping the retina specialist who treats adult patients as well as pediatric patients, and who works at the medical center where everything they need for testing and for treatment (like ocular injections) is readily available.
  • Those stressful months in 2014 led Anna to meet frequently with her awesome high school guidance counselor (God bless him!---I'm still thanking God for his compassion and wisdom), who helped her come up with coping mechanisms and practices to help manage the stress of health issues and frequent appointments and a boatload of assignments and tests.  She now knows ways to stay organized which help to keep her from being totally overwhelmed with everything.
  • We don't have as many appointments to Lancaster (in 2014 we were going to Lancaster every six weeks for orthodontia and preparation for jaw reconstruction surgery in 2015).  So that's one thing off our plate.  (Now she's on a six-month appointment schedule with the Lancaster Cleft Palate Clinic and doesn't go back until June.)
I was thinking today that obviously, God's plan for this moment is not any miraculous healing.  So maybe one purpose of this storm is about changing me and my own thoughts and attitudes.  This entire journey has been a process of changing me (and I can only speak for me---not Anna). Please know that when you pray for us, you ARE helping. Even when the answer is not some fairy tale ending.  With your prayers, Anna is staying positive and sounding upbeat and she is filled with hope and excitement of her spring break plans to visit her sister and family in Tennessee in spite of knee pain and vision issues.  Your prayers for her doctors help (I've seen it in the past and trust we'll see again that they work hard to come up with creative ideas and options to help Anna).  Your prayers for us help---to keep this journey in perspective. This is not all that our life is about.  It's just a very small part.  I'm reminded often that each and every day is a gift.   

Wednesday, February 22, 2017

One Step Forward, Two Steps Back--Praying for Wisdom

Twenty days can bring a whole lot of change, and not all of it good.  In the last twenty days, Anna stopped taking Methotrexate (because of elevated liver enzymes).  She began taking oral Prednisone and Plaquenil. The oral Prednisone was finished after a week (thank the Lord! Anna does not like what Prednisone does to her mind).  In the middle of that medication dose, Anna's foot was feeling so much better, but as she tapered the medication, the arthritis returned.  So her rheumatologist arranged for her to have a cortisone injection into the joint this past Friday.  This was done by the radiology department at the medical center, as the joint is to tiny and the procedure needs to be precise.  Afterward, Anna wished she had her phone or a camera with her.  She was able to watch on the monitor as they completed the procedure.  She thought it fascinating to see them insert the needle into the joint. Within 12 hours, the foot was feeling good!  In the past, I described this as a toe issue, but Anna explained that it wasn't exactly the joint in the middle of the toe---it was the joint that connects the toe to the foot. Anna has grown to greatly appreciate cortisone injections! Last week Anna described walking as painful.  This week she is back to going for runs on campus.

Thirteen days into taking the newly prescribed Plaquenil, Anna sent me pictures of a rash on her cheeks.  She described some other symptoms of side effects which she was experiencing.  She contacted her rheumatologist, who suggested that Anna stop taking Plaquenil for a week to see if those symptoms would go away.  They did.

Today we had an appointment with the retina specialist, with Anna taking no systemic
medications for almost a week and just eye drops for the eyes.  We discovered that Methotrexate had been doing a great job at controlling inflammation in Anna's eyes---even without the Remicade that we had to abruptly stop in early October. We were dismayed to discover that inflammation is back in BOTH eyes (the right eye has been quiet for years), and the macular edema is recurring in the left eye.  So what do we do now?  The retina specialist put in a direct call to the rheumatologist and left a message.  They will confer with each other to come up with a plan to control this inflammation.  (Dr. N---the eye doctor is willing to use ocular injections, although the risk of cataracts increases with the frequency of those).  For the next two weeks, she is adding eye drops.  And she told Anna to call her and even have her staff page her if she is in surgery if Anna has any concerns.

The Hershey Eye Center became a prayer room/area for me today.  As soon as Anna took the visual test, I knew that it would probably not be the best appointment.  I was praying for wisdom from God for Anna's doctors.  That prayer continues.

This journey is getting rather bumpy again---almost a little out-of-control.  But I know that Jesus remains in control.  The joy of the Lord is our strength---keeps us from drowning in worry and sorrow (although I still tend to sigh a lot as I process all of these new developments).  I just sent out some cards to some people today, and the notecards have a verse on them that kept running through my mind today:  "May the God of hope fill you with all joy and peace as you trust in Him."  I'm praying that verse over myself today. Thank you for your prayers for Anna and her doctors.
 



Sunday, February 05, 2017

A Spoonful of [Hershey's Syrup] Helps the Medicine Go Down . . . .

Lord, I come, I confess
Bowing here I find my rest
Without You I fall apart
You're the One that guides my heart
Lord, I need You, oh, I need You
Every hour I need You
My one defense, my righteousness
Oh God, how I need You . . . 
Jesus, You're my hope and stay*

I'm learning to not be totally devastated when the "game" of controlling arthritis and uveitis totally changes, when most of the cards to help win the game (is there ever a winning of this game?) are taken off the table. Maybe it helps that Anna has now taken control of her medical appointments and medications.  I'm now more of an observer and coach on the sidelines than one of the active players.  Maybe it helps that even when Anna has moments of describing the pain in her toe as a "7" on the scale of 1-10 (with her reminder that she hardly ever registers pain with her arthritis), that's only a momentary exclamation of her reality in the middle of a conversation mostly filled with happiness and excitement about college and some of her classes, about a book she's reading, and some of the professors, and an alternate chapel she's attending. She is doing well with not allowing a chronic disease to control her life or define who she is.
Anna asked me on Thursday (on the way to an appointment with the rheumatologist) if I was okay with NOT coming in the exam room with her.  She's an adult, so what can I say but, "okay"?  She wanted to talk to the doctor herself, and had been researching and thinking about the best way to "articulate" (her word) to the doctor her desire to get a cortisone injection in her right toe, which has been causing her many problems.  (She wants to go running for some exercise, but the toe hurts too much.  I asked if she could go for a swim in the college pool, but she said it still hurts then, because she does need to stand in the pool sometimes---and then there's all the walking around campus for classes and work and meals.)
Anna did give me a rundown of the appointment as soon as she reached the waiting area. The results of that doctor's visit did change the "game" for Anna.  We had been grateful that she could still be on Methotrexate, but now her liver enzymes are elevated, and she can no longer take the Methotrexate.  The rheumatologist wasn't able to give Anna a cortisone injection into the toe---she first wanted xrays taken to be sure of what's going on inside that swollen and painful toe.  And she also said that she can't do an injection into the toe in the office, because the joint is so tiny and an injection would have to be precise.  Anna was given prescriptions for a 7-day dose of the dreaded oral Prednisone.  And for the long term, a 'script' for Plaquenil.  Anna was on Plaquenil probably over 15 years ago, and it wasn't effective for her then.  But Anna did not remember that she had been on it before, and I was not in the room.  So we will give it another go and see what happens.  I did remember that when she took it before, the doctor and pharmacist both warned me that it is a very bitter pill to swallow.  I remember mixing the bitter compound with equal parts of Hershey's syrup in an oral syringe to get it down.  So when we stopped by Target to pick up the medications, I also purchased a bottle of Hershey's syrup for her to keep in her dorm room.
Anna and I both separately have been "drinking in" Scripture.  I started a new devotional plan in the new year and also began a 10-week Bible study, both of which keep me saturated in God's Word.  This has been a blessing.  I was reading last night a verse and a commentary which talked about how the Holy Spirit brings Scriptures to our minds which related to our current circumstances---part of how He works.  I've experienced this especially this past week.  Scriptures flooding through my head and heart (like a shower!) with assurances of God's love for me, and for Anna.  Reminders of the Israelites who wandered in the wilderness and complained and didn't trust Him in spite of the tangible presence of God on their journey (the cloud by day and the fire by night) and the miracles He performed on their behalf.  His reminder to remember His faithfulness in the past and His faithfulness to come ("The steadfast love of the Lord never ceases---He mercies never come to an end.  They are new every morning!  Great is His faithfulness.").  Every day is a gift.  And He continues to lead us in His love and faithfulness.  Jesus IS our hope and stay on this unpredictable journey.  
*Songwriters: CHRISTY NOCKELS, DANIEL CARSON, JESSE REEVES, KRISTIAN STANFILL, MATT MAHER
© CAPITOL CHRISTIAN MUSIC GROUP
For non-commercial use only.

Thursday, January 19, 2017

Still Cautiously Optimistic . . . . and navigating adulthood


It's was the first week of October 2016 since Anna had her last infusion of a TNF inhibitor.  And her eye remains clear of inflammation and any swelling as of ten days ago. That's three months with her health pretty much holding steady.  She still takes Methotrexate and Leucovorin as well as Pred Forte eye drops and Prolensa eye drops.  So another inward sigh of relief.  We have monthly appointments with the retina specialist to keep a close watch on the eyes.  (our appointments with Dr. N. are already scheduled through May)

Anna continues to do well in college, having begun her second semester as a full-time, first-year student.  There have been some things along the way that are a part of navigating adulthood while having a chronic disease. Since my purpose in keeping this blog is to help others who are traveling similar journeys, I was thinking that there are key aspects which we as parents need to prepare our young adults for, and to encourage them along the way.

One tip for college students:  It's a good idea (if not essential) to register with your college's Office of Disabilities.   Anna is still working on this (it's a process, requiring a letter from your doctor, etc.), but she's realizing the value.  We've been told that the awesome people in this office will help advocate for Anna with professors and classes and in her work study position when necessary.  While Anna's overall health is not bad, she still has frequent absences for doctor's appointments (which even understanding bosses and co-workers may begin to question when a person doesn't look sick).  

The Office of Disabilities will also be helpful when other situations are encountered, and this brings me to another tip for parents.  It's absolutely necessary that our young adult children know which immunizations they are not allowed to have.  Anna does know this information, but she has been up against a situation where people are questioning why she doesn't have the varicella (chicken pox) vaccine and Anna was feeling some pressure from them.  She has been working to gain approval to volunteer at a hospital (part of a requirement for her major and for a course she is taking this spring). Part of the process was to have a physical with the hospital's Employee Services department.  The nurses there (the same huge hospital system where Anna's doctors are in practice) did not understand why she could not have these vaccinations.  Anna confirmed with me about the varicella vaccine, and I urged her to get a letter from her adult rheumatologist to put in her file (that's what I did when we had a similar situation with the middle school nurse years ago). I also urged her to "stand FIRM" under the pressure in these situations for the sake of her health.  

I spent many, many years trying to ensure that everyone (multiple caregivers and school personnel) were on the same page.  Now it's Anna's turn to navigate this path, with the added pressure of college life. (This aspect of parenting---the stepping to the sidelines and encouraging and cheering on the young adult child while allowing them to take the driver's seat---is an adjustment, and not always easy, but essential for their successful transition into adulthood.  I spend a whole lot of time talking to Jesus about this!)

Despite these challenges that arise, Anna still loves college.  I love to hear that she is having fun with friends in the evenings and on weekends.  I love to hear when she receives some good news and exclaims, "I'm going to happy for at least a WEEK!"  And I'm glad that she still uses me as a sounding board.  (We use the Voxer App on our phones, and she messaged me tonight just to talk through some scheduling issues she's facing.)  I love that she remains close to her older siblings.  She and her brother took a trip to New York to see one of their favorite YouTube people: Olan Rodgers.  She plans to visit her sister and brother-in-law and nephew in Nashville over spring break.


I was just telling Anna tonight--sometimes when I think back over situations, knowing that we've prayed and prayed for God to guide and direct us, I can really see that He certainly has in so many situations.  So when other situations come up and we pray through them and work through them and continue to take steps in the journey, we can be confident that He is with us, and remember that He has promised to work everything for good, because we love Him and are endeavoring to follow His calling.





Wednesday, November 30, 2016

The Dreams of Moms . . . . Holding Steady


I had a dream one night before the appointment.  In my dream, Anna's uveitis had returned. It was a dream that startled me awake.

In the past 17+ years since Anna's initial diagnosis, I've learned that for me, it's best not to go into appointments with any wishes, hopes, dreams, etc.  I'm a realist, when it's all said and done, and I've concluded that this is the journey that God has allowed us to travel, and we can rest on His promises that although life will have troubles and trials, we have the opportunity to grow and to be refined (and better reflect the light of Jesus) in the process of the journey.  Each time I've been tempted to wallow and worry about what will happen to the uveitis without biologic meds, I've heard a whisper in my head---a reminder:  "Who of you by worrying can add one hour to the length of his life?" (Matthew 6:27 AMP)

Monday was Anna's first eye appointment since we received the news that she is no longer able to use any TNF inhibitors (like Remicade, Humira, etc.). We started out with Anna's vision test (not terrible).  She did tell the assistant that she was noticing a bit of blurriness sometimes at long distances.  Given my dream and this information, I was mentally preparing myself for not-so-good news.  BUT, the OCT (a test which takes a picture of the back of the eye) was clear (Praise God!), and as Dr. N. thoroughly examined every square centimeter of Anna's eyeballs, she found no evidence of any inflammation.  Dr. N. was not commenting during those long moments of examination, and when I told her afterwards that I had dreamed the inflammation had returned, she apologized for not saying anything sooner! She said, "These are the things moms dream about."

So relief for today.  Appreciating these days and weeks of no inflammation and no swelling in the back of the eye -- and no injections or infusions! Thanking God for the gift of each new day, for this semester of college that Anna is enjoying and appreciating.  In this photo, she is up on the ropes course at the college, with an experienced partner beside her, navigating the course as a strong cold front blew in with gusty winds (right as she was up in the air!). Sometimes I think life seems a bit like this ropes course: exciting, a little scary, a little treacherous at times, but exhilarating when you make it through some obstacles and precarious situations. Life with a chronic illness certainly has some precarious situations.  How thankful I am that we are anchored to Jesus---our rock.

Monday, November 07, 2016

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.

Monday, October 31, 2016

First Semester College Days--- Quiet Eyes, Remicade, Labs, and Possible Changes

Anna is about halfway through her first full semester of college, enjoying some of the fun activities (Homecoming, trip to Longwood Gardens for a class, attending a national conference in Minneapolis), persevering through the times of stress (papers and exams and projects), exploring all of the opportunities (volunteering with the Student Activities Board and some other groups, and possible semesters or service projects abroad), and occasionally taking time away from her classes and work study job to travel to Hershey for doctor's appointments and Remicade infusions.

One doctor's appointment was today--with the Retina specialist.  Such a relief and sense of gratitude to God that her eyes have been quiet--no inflammation at all!--for the past few months, since that ocular injection.  (So many of you pray for Anna, we know---thank you!).  Dr. N. did mention last month that she saw maybe the very beginnings of a cataract in the left eye.  Not surprising at all, really, since Anna has been taking Pred Forte drops in that left eye for years.  I'm actually surprised (and grateful!) that we've gone this long without any side effects.  Anna asked about this "beginning of a cataract" today, and Dr. Neely said that it's almost not even there---just a very faint tiny haze in one spot as she shines the light over the surface of Anna's eye.  Dr. N. is not overly concerned right now, but she does want to lower the dose of drops, especially since Anna's eye has stayed so quite and clear for several months.

We don't know what will happen with the Remicade.  The rheumatologist encouraged Anna to make an earlier appointment to discuss the dose and Anna's lab results.  We will see her next Monday instead of waiting until December.  Dr. S. has been concerned about Anna's current dose of Remicade.  Her initial plan had been to lower the dose. Now she would like to talk to Anna about taking her off Remicade and changing to another medication (I have no idea which one).  Dr. S. says that Anna's labs indicate a lupus-like disease, which high doses of Remicade have been known to cause.  The good news is that Anna is not feeling badly, or feeling like she may have lupus or a similar disease.  I looked at Anna's lab results, and the abnormalities were very slight---not significant.  I had been concerned about abnormal liver enzymes in previous months, but those numbers have now stabilized.

I can almost feel the prayers of everyone.  I have felt peace instead of worry and alarm as we face some changes and have no idea how these changes will affect Anna's eye and/or her joints.  I am learning over the years to focus on the now instead of worrying about what might happen in the future (still a work in progress, but I think I'm getting a lot better!).  As you can tell from Anna's pictures, she is experiencing joy in the journey!

No song for this post, but some verses from Philippians 4:

 "Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus."





Monday, August 29, 2016

Some Stability in the Middle of Major Life Changes



This past week has been full of a major life change for Anna (that's what her retina specialist calls it, and she is absolutely right!).  So until now, I haven't taken an opportunity to let everyone know the results of Anna's last eye exam (almost two weeks ago!).  Can I tell you how grateful I am that in the middle of so many changes for Anna, she has chosen to move forward with an eye specialist who has known her and treated her for almost two years?  With all of the mixed feelings of aging out of the pediatric rheumatology program and the learning curve for both Anna and me, her mom, in the switch to adult rheumatology, having her calm, brilliant retina specialist gives me a whole lot of peace.

The OCT for Anna's left eye was completely normal. Praise the Lord!  That means that the swelling in the back of the eye---the macular edema---has receded.  The steroid injection to the back of the eye did not cause her eye pressure to rage out of control.  Additionally, Anna's eyes were totally clear of any inflammation!  First time in months!  Thank you to all who are constantly praying for Anna.  She can begin her college career (classes begin tomorrow!) without an eye issue lingering in the background.  We decided on the way home from that appointment that Dr. N. is a stable force in all of these changes.  We will hang on to her wisdom, her insight, and her calmness as so many other aspects of Anna's life are changing.  For now, she has become what I call our "default doctor"---the doctor you listen to the most when so many other doctors are telling you very different things.

We explained to Dr. N. (the retina specialist) the concern of Dr. S. (the adult rheumatologist) regarding the Remicade dose, which Dr. S. considers "a dangerous level."  Maybe that's true for rheumatology patients, but eye specialists have gone with higher doses to treat eye inflammation than Anna is currently receiving (and I think patients with Chrone's Disease are probably on higher doses, as well, although I don't know that for certain).  Dr. N says (in her calm, matter-of-fact manner), "With a major life change like starting college, lets not rock the boat."  She was willing to reduce the frequency of the Pred Forte drops, but she does not want to change the Remicade dose at least for another month.  she said, "We just got Anna's eye to a quiet point after a very long time!"

And now we come to the point where I listen to all of this medical information, but step aside as a mom, and allow Anna the adult to address these issues and be the team coordinator between doctors. I changed the patient portal so that I don't even receive notifications anymore. All messages will go directly to Anna, and she will communicate with her doctors and let me know what she needs and wants me to know.  Among my many parting words to Anna when we left her on the college campus, "Stay in touch with your doctors!"

Monday, August 15, 2016

"Be Still My Soul . . . . Through Every Change He Faithful Will Remain"


Last week was Anna's official switch to adult rheumatology.  The rheumatologist and the resident were very thorough, and had a good knowledge of Anna's history.  I liked them both.  Anna's first thought when we left was that she missed her pediatric rheumatologist. But she has known him for almost all of her life, so this change will take some adjusting. Relationships take time.

One new thing for parents who are making the switch---and maybe you've already experienced this.  I was asked to step out of the room for a little bit, so that the resident could speak freely with Anna about sex and drugs and alcohol.  He didn't tell me what they were going to talk about, but Anna filled me in later.

Since Anna is an adult, and all medical decisions go through her (although I'm always available for consultation!), I was trying to be very intentional about mostly listening and not talking.  There was a lot of information to listen to.  Different doctors mean different perspectives and opinions.  Dr. S. (the adult rheumatologist) is very concerned about Anna's Remicade dose, feeling that it is very high.  Anna is at 15 kl/per kg, and Dr. S. feels that 10 kl/per kg should be the maximum.  I did speak up to explain that we went that high because Anna's uveitis was in a stubborn flare.  (I didn't mention that Dr. Foster in Boston recommended that Anna be on 20 kg/per kl---so I was thinking that at least 15 wasn't as high as 20!) Dr. S. would prefer to decrease the Remicade and increase the methotrexate. However, when Anna had labs done later (before the Remicade infusion), two of her liver enzymes were elevated, and I know this means that we may have to reevaluate Methotrexate in light of those numbers.  Dr. S. is waiting to make any decision on these medications until Anna sees the retina specialist this week, to see the status of the uveitis and macular edema.  It sounded like Dr. S. has a good working relationship with Dr. N. (the retina specialist), so that is good---they can talk about it together.  They both seem to be brilliant doctors who know their stuff.

The MRI Anna had done in June showed that there has been more active arthritis in the TMJ since her surgery last year.  Anna has been having problems with her one big toe for about six weeks (since she went on a day trip to Washington, D.C., and walked a lot).  The doctors did not address these issues (except to ask if she ever takes ibuprofen for the toe issue)---I think they were more concerned about the Remicade dose. (And maybe we're to accustomed to a pediatric rheumatologist whose goal was medicated remission.)  Maybe we (Anna) should be asking what Dr. S's overall goal is for Anna's arthritis.

This all happened days ago, and I spent the next few days with hundreds of thoughts swimming through my head---about this medication tightrope we are walking, and wondering if Anna knows all of these details and implications of the medications and their side effects, etc.  (I'm thinking she probably does, since she's heard me talk about them, and maybe she will have more to say on the matter when I keep quiet about it.)  This is all probably the normal thoughts of a mom transitioning and handing over the medical reins.

ANYway . . . . Sunday rolled around, and even during the singing time of our worship service, I still had all of these thoughts and questions and concerns about Anna's appointment going through my brain.  And then we sat as the offertory was played.  "Be Still My Soul."  Played by a substitute pianist, who didn't know that our regular pianist had played that song just last week (different arrangement).  And this made the third time this song penetrated my brain and my soul within the past week---a friend had posted the lyrics on Facebook.  When these situations happen, I feel like God is telling me to sit up and pay attention.  "Be Still My Soul, the Lord is on thy side . . . . "

As we get ready to move Anna to the college, I know from past experience (having gone through this with two older siblings) that we will have a candlelight worship service after we move our first-year students into their dorms.  My husband (who works at the college) once explained to me (when they first began this tradition), that it's a service where the purpose is to remind parents that God has been faithful in the past as we have raised our children to this point, and He will be faithful to them for the next four years in their college journey, so we can trust Him and trust our children and trust the college (and let them spread their wings and fly!).  It's an awesome service!  No matter what the future holds for Anna (with college, relationships, medications, disease, etc.), we know that "through every change, He [God] faithful will remain."

Be still my soul the Lord is on thy side
Bear patiently the cross of grief or pain
Leave to thy God to order and provide
In ev’ry change He faithful will remain
Be still my soul thy best thy heav’nly Friend
Through thorny ways leads to a joyful end


Be still my soul thy God doth undertake
To guide the future as He has the past
Thy hope thy confidence let nothing shake
All now mysterious shall be bright at last
Be still my soul the waves and winds still know
His voice who ruled them while He dwelt below

Jane Laurie Borthwick | Jean Sibelius | Kathrina Amalia von Schlegel

Tuesday, July 26, 2016

Shifting Gears, Transitions, and Distractions . . . .


We are truly shifting gears in this JA Journey, which we have been traveling now for 17+ years.  I've mentioned before that Anna has been taking the reins lately.  She is decisive, and one of her decisions was to say good-bye (along with a huge "thank you" and a hug) to her pediatric ophthalmologist.  We saw him two weeks ago, and she told him then that she has decided to pare down to just one eye specialist, and she has chosen the retina specialist. Makes good sense, since the retina specialist has all the instruments she needs at the medical center to do what needs to be done as issues arise with Anna's eye.  The pediatric ophthalmologist does not, as he is in private practice and has to send us to see someone at the medical center when the macular edema recurs.  Anna thought this was also the perfect time, since she has aged out of pediatric rheumatology and will be meeting her adult rheumatologist in about two weeks.

Anna has also begun to keep her own calendar of appointments.  This is especially important since she will be moving to her college campus in less than one month, and since she will be keeping better track of her class and activities schedule than I will.  It's time for me to step back (believe me, this is not easy, especially since Anna is our last child to leave home!), but I feel like I'm making progress as a mom.  (If some of you are praying about this for me, THANK YOU!!!  I can feel your prayers as the Lord is shifting my emotions and attitudes and my worry as I continue to let go.)

Does this mean the end of the this blog?  I don't think so.  I know many who continue to search for stories to see what the future may hold for their child with Juvenile Arthritis and uveitis and TMJ issues.  Since this is what I was searching for 17 years ago, I want to provide this for others who need it.  I will continue to share as Anna moves forward.   I don't yet know how we will fit college classes, doctor's appointments, Remicade infusions, etc. all together, but we won't know until we try it.  Anna has scheduled her classes so that she has three mornings free.  She worked with the Lancaster Cleft Palate Clinic to reschedule her team appointment (that's tricky---they only schedule team appointments two Tuesdays per month), so that she won't miss class.  It will help that her college is just six miles from home, so she can still get to the local appointments and not necessarily have to wait for fall break or Thanksgiving or winter break.

As for an update:  We believe that the Periocular injection (steroid into the back of the eye to treat macular edema which Anna received a month ago) is working.  Two weeks ago, Anna had just a haze of protein, but no cells of inflammation in her left eye.  "Yay!  And finally!!!"  Although her vision is not quite back to 20/20, the vision test results were much better than last month.  So we believe that the swelling in the back of the eye (the macular edema) is receding.  They decided to reduce the frequency of the Pred Forte drops, and she will see the retina specialist in about three weeks for another exam (and an OCT, which will show us a picture of the back of Anna's eye).

We did have a little distraction.  Anna always has blood taken for labs prior to her Remicade infusion.  The results showed some abnormalities, and I probably should not have researched what "smudge cells" indicate before hearing from her doctor.  (Sometimes I check the results of her labs on the Health Portal system, especially when she's had some abnormalities in the past.)  That was new, and the search results were worrisome to say the least!  (Practice for me in calming myself down!)  But her pediatric rheumatologist (he's still monitoring her until she sees the adult rheumatologist) ordered more labs, had them sent to pathology, and the results today showed that they are back to normal.  What a relief, and thank the Lord!  He thought that would be the case, since her other numbers were not way off base, but he wanted to be cautious and double check.