An Update

Well, I had hoped that I would be updating you all that the new drug worked for Hannah, that her psoriatic and rheumatoid arthritis was in remission or at least getting better, and that she was pain free.  Unfortunately that's not our update.  Hannah has had three injections of Stelara, the new biologic that she was prescribed when we stopped her Enbrel.  It has been over 14 weeks since the first shot, and with this biologic, we should have seen some improvement or at least the stop of the progression of the disease.  Her psoriatic arthritis is continuing to spread, and her rheumatoid arthritis is now flaring, and in new joints - specifically in both of her feet.  She has pain every day, but is trying so hard to stay normal and finish the school year strong!  And every time her rheumatoid arthritis flares, she develops uveitis in her eyes.  We saw the pediatric ophthalmologist last week, and she has developed inflammation in both her eyes.  She is on steroid eyes drops multiple times a day, hopefully keeping the inflammation from causing permanent damage. 
So after a long conference with her rheumatologist on Monday, we decided together to put her on Humira, a drug similar to Enbrel.  She will receive injections every other week, and we are praying with faith that this biologic will halt the progression of all three diseases that she has, and give her relief from the pain.  But, through it all, we have seen God's faithfulness and we are thankful.  Thankful for doctors who take the time to talk, explain, and commiserate with us.  Thankful for an amazing team of nurses at CHOP who call and check on us and truly care how our whole family is coping.  Thankful that after months of fighting with our insurance company for drug approval, when the Humira was prescribed, it was approved in less than 36 hours and will be at our home tomorrow so that Hannah can receive her first injection tomorrow.  Thankful for our daughter's sweet spirit and constant joy - her attitude is always hopeful and she finds the best in every situation.  We covet your prayers - please pray that the Humira works, as we are running out of options for treatment.  Please pray that the new drug works quickly, and that there are not side effects or reactions.  Hannah still has some of the Stelara in her system, as it is an every 12 week drug, and so adding the Humira further suppresses her immune system and leaves her susceptible to infection.  Even a simple cold could cause her to become extremely sick.  Please pray for protection for our girl, and for her to be able to enjoy her summer and get ready to enter middle school!  Thank you for being on this crazy journey with us!

Waiting

I am not a patient person.  At all.  I have always found it ironic that the life verse that I choose years ago speaks about waiting (Isaiah 40:31) - I am positive that God has a sense of humor!  Anyways, I hate waiting.  Over the past few years I have been working on trying to enjoy the journey, and not hurry to the finish.  Now, more than ever, I am struggling in the wait.  Will her new medication work?  How soon?  If it doesn't what next?  Every day I look at her fingers and heels, and nothing has changed.  In fact, her fingers are progressively getting worse.  So we wait.  And I attempt to not be consumed with questions, worry, and anxiety. 

I will trust in You.  We will wait for Your healing.  I will look for the little things that you send each day, reminders that you are in control.  

She woke up this morning and was only a little stiff walking.

She was able to balance on her left foot for 30 seconds yesterday - two years ago she couldn't stand on that foot alone at all.

She played with friends yesterday without needing medicine for pain.

She walked into school with a smile today.

She is home.

Simple reminders.  But they are filled with hope and healing. 

My heart

This entry is for Hannah, but we would be honored for you all to share in our journey.

Oh my girl - mommy doesn't even know where to begin.  You have been my hero since you were born.  A struggle even before you entered the world, you were our fighter.  Days in the NICU, home on a heart monitor, multiple doctors and unknowns.  Many sleepless nights for mommy - and I now treasure every one.

You are so strong.

Then at 18 months, the unknown again.  Why was your ankle swollen, why were you in so much pain?  Again, multiple doctors and tests.  Juvenile idiopathic arthritis.  How is that even possible at 18 months?  Why God?  Meds, injections, inflammation in your eyes.  Trying to hold you down to put drops in every two hours, trying to keep sunglasses on a two year old every time we went outside. We prayed for healing, for answers, for understanding.  You were our fighter.

You are so strong.

Fall of 2011.  Your arthritis was still there, but most days you were running around playing.  And then you threw up, one random day in September.  Just once.  You know mommy - my little ticking time bombs.  I hate the stomach bug!  But no one else got it.  A few weeks later, you threw up again.  Once. But no one else.  And then again, and a week later again.  Your labs were fine, once in awhile you would complain about your left side hurting.  You started losing weight.  I finally took you to the emergency room right before Christmas.  They told me you had anxiety-related reflux - I know, those preschool days were rough:).  Momma didn't buy it and I refused to leave until they did a scan of your belly.  They did an ultrasound to pacify me (I'm sure they had choice words to say about me demanding they scan you) and I could tell from the ultrasound tech's face that something was wrong.  You had severe hydronephrosis (your left kidney was grossly enlarged), and that was causing the side pain and vomiting.  They sent us immediately down to Maria Fareri Children's Hospital to see Dr. Lori Dyer.  Starting in January, you had 5 surgeries over the next 5 months, to place stents, fix an obstruction, more stents, and finallyto  reconstruct your ureters and bladder.  We spent weeks in the hospital and you never stopped smiling or amazing us with your gorgeous smile and never-ending positive attitude.  I prayed constantly - for God to take this from you and give it to me.  For complete healing.  For just one pain-free day. To steady Dr. Lori's hands as she operated on you for 6 hours. You were only 4.

You are so strong.

Over the next 6 years, we saw doctors constantly.  Rheumatology, urology, ophthalmology.... ultrasounds, mri's labs.  You were started on low-dose chemo for your arthritis.  I injected you with it every Saturday night and you would spend the next 36 hours vomiting.  It was the hardest thing I had ever done - sticking that needle into your stomach knowing I was injecting a toxic chemical into your body that was going to make your hair fall out and cause vomiting for days.  Every week.  You had pain every day, you wore braces on your little ankles to stop them from growing the wrong way.  And yet you were my constant sunshine, always smiling, always thanking me for giving you your injections.  Oh, my heart broke every day. And I dreaded Saturday nights. Why God?  Why?  Give it to me.  I'll gladly take it for her.  I prayed that you would never know that my hand shook while I was drawing up your chemo, that I desperately wanted to run away every Saturday night so I didn't have to make you sick.  I prayed constantly, many days without words, just my heart broken for you and knowing that He knew my longings, my unspoken words.

You are so strong.

April 18, 2015.  You were jumping on the trampoline and I heard a scream I will never forget.  You had shattered your tibia and fibula in over 15 different places.  Surgery. A bright pink cast from hip to toes for 6 weeks.  Wheelchair to couch to wheelchair.  Then a below the knee cast for 6 weeks with crutches.  Then a walking boot for a month.  No swimming in our pool, you had to watch your siblings play and have fun while you sat on the sidelines.  I cried with you, held you when you said "it's not fair, why me again"?  And then you dried you tears and smiled and went on with life.  You amaze me with your strength, physically, emotionally, mentally.  And after all the casts and boots were off, what did you do?  You jumped on the trampoline!

You are so strong.

February 2017. We had found doctors for you at Hopkins, but you were not getting better, in fact your arthritis had spread to both ankles, your back, and possibly your jaw.  We prayed about what to do, and we finally switched to the Children's Hospital of Philadelphia and met Dr. Weaver.  His strong presence instantly calmed us both, and he had you laughing within minutes.  But he told us what I had been dreading - you were getting worse and we needed to switch your meds.  To Enbrel.  Another injection, this one with the possible side effect of lymphoma or leukemia later in life.  Dear God - How do I make that decision?  How can I inject her with that knowing what it might cause?  He calmly explained what could happen if we didn't start it and we knew that he was right, you needed it.  $1200 a week sitting in my fridge door.  I wanted to vomit.  Every friday night you continued to thank me when I gave you your injection.  I wish I could say it got easier for me - I give hundreds of shots a year at work and don't even think about it.  But my sweet girl, you are my heart, and it shatters every time I draw up your meds.  But it worked.  You started to feel better.  You weren't losing your hair, you didn't throw up at all.  You were able to go to the mall and not sit in your wheelchair the whole time.  The mornings became easier - you could move without horrible pain and you didn't need to sit in a warm bathtub in able to move.  We prayed for complete healing, we thanked God for pain-free days.  We thanked God for every day you weren't in the hospital.

You are so strong.

Summer 2018.  You came to me and said you had a few bumps around your left thumb.  I told you not to pick them:).  And then they spread.  Under your nail, and then the nail fell off.  Countless doctors, meds, pills, creams, ointments. Nothing helped.  And we have no idea whats happening to your joints inside, we can only see the outside.  The whole time my heart cried out to our God - please no.  Not again.  Hasn't she gone through enough?  Give it to me.  Please.  In August we received a new diagnosis, and a medicine that seemed to help.  But then it stopped.  And it spread.  Your fingers and heels look so painful precious one.  Cracked, bleeding.  How do you do it every day?  You get up, snuggle with me, all smiles, ready to take on the day.  I look around and see all the healthy children and I am screaming on the inside - why you?  why more?  please no!  But you are here, not in the hospital.  You are home, constantly positive, my sunshine.  And now we have a new drug, one with the potential to take this away.  $20,000 sitting in my fridge.  But will it?  Only He knows.  But I rest today in the knowledge that He has never left us, none of this is a surprise to Him.  He loves you so much more than I can ever comprehend.  Oh sweet girl, I pray you continue to feel His love and experience His peace.

You are so strong.

You are my singer, and there is nothing that you love more in the morning before school than turning on the speaker and belting out songs with mommy.  Our song has always been "Trust in You" by Lauren Daigle.  Precious one, never forget the words of our song.  Momma loves you.

You are so strong.

Letting go of every single dream
I lay each one down at Your feet
Every moment of my wandering
Never changes what You see
I try to win this war
I confess, my hands are weary, I need Your rest
Mighty warrior, king of the fight
No matter what I face You're by my side

When You don't move the mountains
I'm needing You to move
When You don't part the waters
I wish I could walk through

When You don't give the answers

As I cry out to You
I will trust, I will trust, I will trust in You

Truth is, You know what tomorrow brings
There's not a day ahead You have not seen
So let all things be my life and breath
I want what You want Lord and nothing less

When You don't move the mountains
I'm needing You to move
When You don't part the waters
I wish I could walk through
When You don't give the answers
As I cry out to You
I will trust, I will trust, I will trust in You
I will trust in You

You are my strength and comfort
You are my steady hand
You are my firm foudation
The rock on which I stand
Your ways are always higher
Your plans are always good
There's not a place where I'll go
You've not already stood

When You don't move the mountains
I'm needing You to move
When You don't part the waters
I wish I could walk through
When You don't give the answers
As I cry out to You
I will trust, I will trust, I will trust in You
I will trust in You
I will trust in You
I will trust in You

His faithfulness!

February 27, 2019 - I cannot believe it has been over 5 years since I blogged!  I could use the excuse of 4 kiddos, a move to Maryland, new jobs (for both Eric and I), high school for two boys (how in the world did that happen?), health struggles, etc .... but let's be honest - I forgot!  In the day to day crazy it is hard for me to sit down and type out my thoughts.  But today I need to write, to remind myself of His great faithfulness in our lives.  My life verse is Isaiah 40:31 - They that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles, they shall run and not be weary, they shall walk and not faint.  I pray this hundreds of times a day.  Many of you do not know, but Hannah has been struggling physically since last summer.  We noticed some spots on her left thumb during the summer, it looked like a cluster of little pustules.  It spread quickly, under her nail, which fell off and the nail bed continued to have many many yellowish bumps and it was bright red and sore.  We took her to her pediatrician, her rheumatologist, and many dermatologists.  They said she had a bacterial injection, a virus, a fungal infection.  She was prescribed countless antibiotics and creams.  Nothing worked.  Our insurance company suggested that we contact best doctors, which is a consortium of specialists throughout the country that consult on difficult cases.  On August 24, 2018, a professor at the University of Florida Miami diagnosed her with just her case study and pictures with Hallopeau's acrodermitis, a very rare and extremely difficult type of psoriasis.  A topical cream was prescribed and overnight the redness and pustules disappeared!  We were elated!  The nail started to grow back, and then more pustules appeared.  And we noticed pustules forming under the skin of her heels.  Back to the rheumatologist in Philadelphia, who got us in with a pediatric dermatologist at CHOP the same day (I cannot tell you how amazing every single person is at CHOP - they are angels on earth!).  The peds dermatologist recognized the hallopeau's acrodermitis immediately (finally!) and said that she has psoriatic arthritis, on top of her rheumatoid arthritis.  This was in October 2018.  We (dermatology, rheumatology and eric and I!) chose to keep her on her weekly injections of Enbrel and daily oral leflunomide, as her arthritis was the best that it has ever been (there has even been talk of weaning meds), and use topical treatments.  A change in biologic was mentioned as a treatment if the topical treatment did not work.  (quick facts on biologics - they are a newish class of drugs that have proven to be very effective in treatment/slowing progression of autoimmune diseases.  They do come with risks - like increased risks of lymphoma, leukemia, immuno-suppresion and they are extremely expensive - Hannah's enbrel cost approximately $1200 an injection and she receives those weekly). in a very very small percentage of cases Enbrel can cause psoriasis (like 0.01%) but it usually used to treat it.  Fast forward to January 7 - we had appointments at Chop with rheumatology and dermatology.  Her finger had not improved - it was spreading to surrounding tissue and her heels were cracked, bleeding, and full of pustules.  Reading online about Hallopeau's acrodermatitis is frightening - permanent joint damage, loss of fingers, and of course the knowledge that if this is what we see on the outside the psoriatic arthritis could be causing irreversible damage on the inside.  Her doctors had talked before we arrived and it was decided that we would switch her to a new biologic Stelara.  This is scary for us - switching her from the enbrel could mean the return of swelling and pain, or it could mean total relief and remission!  Stelara has an incredible response rate - 70% of patients show a 75% reduction in symptoms in the first 4-12 weeks of treatment!  We prayed over the decision and felt peace about moving forward.  The prescription was sent to our insurance's prior authorization department (Eric's company was bought by another company in September 2018 and our insurance switched from carefirst BCBS to anthem BCBS).  We had never had a problem getting coverage for her meds - and I was totally unprepared for the journey we were about to embark on.  Over the next 6 weeks, her medication was denied multiple times for a variety of different reasons.  Every time we called the insurance company they told us they never received a prior authorization request, they had no idea what I was talking about, etc.  I finally asked for a nurse case manager, and while she doesn't actually help with what we need , she was a third party on the line every time I called the insurance company.  Last friday, the 22nd of February, the nurse case manager called me and said she had called to check on the drug approval and they said there was no record again.  But this time I had her!  She escalated our case to a manager, who apologized profusely and said he was going to work on it over the weekend.  I'll be honest - I was not holding my breath.  Through this all we were praying constantly, struggling to trust that our God loves our girl even more than we do and that none of this was out of His control.  The bumps spread to another finger, and she was probably now lose that nail as well.  It is so hard to see her is pain and hurting, knowing that there is nothing I can do but hold her and cry with her.  Walking hurts at times because her heels are cracked and often bleeding.  We pray for healing, for pain relief, for peace.  And we wait in Him, on His timing, because I firmly believe that our girl is going to soar!  On Monday February 25th, we received the news from our ped rheumatologist that the medication was approved!!  The injection is being over-nighted to our house so that I can give it to her on Friday night.  We are praying that it works and stops the spread of her psoriatic disease, that her joints do not flare, and that she does not lose her fingers.  We also have to watch her eyes closely as she has had uveitis (inflammation of the middle layer of the eye) and when her arthritis flares she is at increased risk of that returning - it can cause permanent blindness.  But He is faithful, and we cling to Jeremiah 29:11 - "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to have you hope and a future."