Dr. deGuzman began explaining that Hope has plenty of  clinical symptoms (and in her history) to diagnose Pediatric Sarcoidosis.  To say that she absolutely has it we would need a biopsy of the granulomas in her lungs, which is very invasive, or ones that have formed in her hands, feet or elbows.  At this point we are going to move forward with immediate treatment to slow the progression of the disease.  We would have begun an infusion today but that department was completely booked.  But now I’m getting ahead of myself.

Her CT scan showed granulomas in her lungs have not grown in the last 2 years.  Since she has not been on any kind of treatment plan this is very good news!  The fact that her lungs have not been greatly affected thus far is encouraging.  Her abdominal ultrasound did not show any unusual activity of granulomous formation which is also very encouraging!  She does continue to have nephrocalcinosis (calcium deposits in the kidney’s) but it has not gotten any worse in the last 1 1/2 years.  This is likely due to keeping her hypercalcemia (high calcium in blood stream) within normal limits by her calcitonin injections.  However, with children who are diagnosed with this disease, they usually prescribe an NSAID first, like Naproxyn.  We tried Hope on Naproxyn before Christmas and it caused irritation in her kidneys which caused blood in her urine.  So, we are unable to use non-steroidal anti-inflammatory drugs such as these.

On Monday we will go back to TCH for an IV-infusion of steroids called Solumedrol.  These infusions should take approximately an hour and we’ll do this once a week for the next 4 weeks.  I was told to buy her some sour candies to suck during this time to keep the nasty taste out of her mouth.  She will also begin a very low daily dose of steroids in pill form (Prednisone) and a dose of Humira every 14 days for a month.  The Humira will be injected by me every 14 days with something that looks like an Epi-pen.  Darrel and Hope went into the waiting room after our appointment so I could make other appointments and get ‘trained’ to give this new injection.  When the nurse brought the ‘pen’ and showed me how it worked I started fanning my face with papers.  They asked me if I was hot and I said, “No, just trying not to cry!”  The LAST thing I want to do is give Hope more injections.  Ahhhhh! [Charlie Brown style when Lucy pulls that football away from him]   I need prayer.  Hope needs lots of prayer (I was made aware that this medication stings, like her MiaCalcin, and I have to hold the needle in 10-15 seconds while it pumps).  She is NOT going to be a happy camper.  Again, very thankful this is only every 14 days and not every day.  Since Humira suppresses the immune system we are going to be prayerful and careful about infections, bacterial and viral.  She cannot be a hermit but we will be praying for wisdom in keeping her healthy.

In a month we’ll have a follow-up appointment to see if the medications are effective.  She will continue her MiaCalcin injections every 12 hours during this time…BUT…our prayer is that, if this disease gets controlled, that her hypercalcemia will desist and she will get to stop taking these daily injections.  I have NOT told her of this possibility, as I believe the devastation of it not happening would be very great.  I can hardly ponder the thought of it myself.  There is hope.  We will need to take blood for labs during this time so our endocrine Dr. can see if there are changes occurring in her blood calcium levels.

Right now our concerns are getting the inflammation down; back, all knuckle and hand joints, wrists, elbows, hips, ankles, feet and toes.  These are the main points that are causing her such pain.  Sarcoidosis causes granulomas [medical term for tiny collection of immune cells known as macrophages.  These form when the immune system attempts to wall off substances it perceives as foreign but is unable to eliminate.  It's a special type of inflammation.] all throughout organs in the body including but not limited to the eyes, heart, liver, kidney’s, and lungs.  She’s had them form in her hands, feet, elbows and lungs.  We are praying these new medications will eliminate them and keep new ones from forming.

Another challenge will be to keep her active.  We’ve learned taking steroids causes the patient to be very hungry and usually gains weight, not to mention the swelling or ‘puffiness’ that naturally occurs.  Praying that the Lord will help all of us through this time.  The Dr. said taking steroids can make one very moody.  I wonder if it’s from the med’s or from people saying they shouldn’t eat so much! ha  Please pray for her specifically in this area as well… we want to feed her healthy snacks, comfort her and point her to Christ.

There’s so much more I’ve left out from the day but it’s late and time for me to rest.

I go to sleep very thankful.  I’m thankful God has let us have precious Hope for 3 more years (since initial flare in 2008); thankful for medications and Dr.’s, thankful for friends who pray, thankful for a Godly husband and children; thankful for funny movies and ice cream; and thankful to  Jesus for unimaginable suffering for the love of His people.

Holy God in love became

Perfect Man to bear my blame

On the cross He took my sin

By His death I live again!

Trinity has also been coughing since December 13th and I finally gave in and took her to our pediatrician yesterday.  Long story short, I didn’t agree with her diagnosis, but didn’t say anything; didn’t fill the new prescription given either.  But this morning Danielle reminded me that she and Isaac both had brief bouts with asthma at about her age; I totally forgot!  So, I do believe the coughing might be some form of allergy asthma and will be calling the Dr. back to get her opinion.

Although I feel washed over with medical issues at times [weary, not fearful] I know Jesus cares for us, loves us and is interceding on our behalf.  How kind that He would even care to have us kneel down at His feet and communicate with Him.  That He would allow us to do so; that He has bridged the gap, crossed the great divide, so that we can be His; called His children; that we may be comforted by Him.  Oh, the sweet love of Jesus!

We ate a picnic and I sat.  I sat in a chair and watched the clouds roll by.  It was lovely, although I kept seeing creepy faces in the clouds.  You remember as a kid all the fun animals and things you would see in the clouds?  No cute figures that day, all scary faces.  I don’t know why.

I ended up reading a book I’d just started, Till We Have Faces by C.S. Lewis.  It is beckoning me right now!

The day wasn’t what I’d planned but it was a good day.  Came home to hear someone from rheumatology trying to schedule us an appointment.  ha  They had closed for the day.  So, Friday morning I called.  Hope has an appointment at 9 a.m. with Dr. DeGuzman.  I am, at the moment, very happy about this.

Today, I took Hope and Danielle on a couple of errands and ended up at Hobby Lobby for Danielle to find some things to make a mask for a party next weekend.  After walking around, perhaps an hour, Hope’s feet and ankles were killing her.  When we were walking out she was just hobbling and hobbling along.  Ladies older than me were trying to pass.  She said, “I must look ridiculous!” But outwardly she didn’t seem to care much, just wanted to get off her feet.  By the time we got to the van she couldn’t even get in.  So, I am VERY glad we are getting in to see the Dr. Friday.  It couldn’t come soon enough.

Good news!  Darrel’s biopsy came back as Morphea which is just a localized scleroderma (hardening of the skin).  Nothing to be worried about.  She told him not to go snooping about online about scleroderma or we might get a shock, but his is nothing to worry about.  He has some topicort to use on it for a couple of weeks and his hair might even grow back.  So, my heart has been set at ease.  Thank you, Lord!

And last, but not least, Grady was kind enough to give us a leg of lamb this week.  It was a BIG leg.  I looked up a recipe he told me about and got it roasting this morning.  Roasted that leg for over 8 hours. {I must insert here a very strange occurance today.  For reasons unknown to us, Luther has a ‘no tolerance policy’ to roasting lamb in this house.  From about hour 2 of cooking, he ran upstairs sniffing the air, hid under the bed and wouldn’t come out.  When we finally coaxed him out he would only sit under Darrel’s desk, walk a foot or two out, sniff the air and go right back under.  It wasn’t until the lamb was eating and all the dishes washed that he came out of the room.  Weird-y!!!}   The lamb turned out  fall-off-the-bone tender.  The children all liked it, Darrel thought it was prepared well, but wasn’t too hot on it and me, well, the one who tries it all and loves it all…. Bleh!  I ate it, but I won’t be eating it again anytime soon.  It’s that after taste.  I don’t want to spoil the lamb eating experience for anyone else, so I won’t share my reason with anyone, but I have farm issues in my past that won’t allow me to enjoy goat cheese and now leg of lamb.  Oh well!  Back to my bacon. [I love bacon]

Praying for our friends, Leslie and Jessica Padilla.

I am working on de-cluttering our home as to have more time to do the things I love, to spend more time with the ones I love and to have more time to serve without feeling like our ‘things’ rule us.  I am so thankful for all we have but the moment they rule me they become a burden and not a blessing.

Today I take Hope to TCH for her CT scan.  She’s had quite a horrendous night cough the past 4 nights but praise the Lord, she didn’t cough at all last night.  I was concerned about her lying on that table, having to be perfectly still for at least 5 minutes.  I didn’t want to put this off any longer so I’m so thankful the cough is leaving her.  I’ve noticed her appetite has decreased significantly and her coloring is changing too.  Where she normally scarfs down her entire birthday waffle, she ate 3/4 and said, “I’m stuffed!”  What? [very surprised]  Then at lunch she ate her side salad and started in on her meat and said she was too full to eat it.  And same at dinner.  So, not that I’m upset, because frankly she’s probably over-eaten in the past, but there’s a change going on for sure.

Praying we can get results soon and get on a plan to slow down this Sarcoidosis, if this indeed is what she has.  Should know soon, Lord willing.

Hope’s had an abdominal exam this week which was painful because I believe her organs are inflamed, especially her liver.  Her rheumatological exam last week was also painful but possibly very telling.  Until her CT scan is complete and all labratory results are in they [Dr.'s] won’t say for sure, but they put a diagnosis of Sarcoidosis on her check out sheet.  It was exciting for me to see and emotionally exhausting as I sat in another room while she had pulmonary tests and mused over this new finding.  To hold back the tears of joy and sorrow were very stressful on my body.  God was with me, and her, and we now wait for the next step.

Lab results a few weeks ago showed her to be pre-diabetic.  The warrior rose up in me when I found out these results and I cried, with brandish held high, “NO! NO! NO!  We will not deal with diabetes too!”  And we made a drastic change in carbohydrate consumption in her and a little bit in us as well.  In less than 2 weeks her sugars came down from 118 to 95 which is now in normal range.  Praise you Lord Jesus!

It is possible that they want to start her on steriods, which every time I think of I cry.  Another option is methotrexate.  There are several more I cannot remember, but they need to see what her other organs currently look like in order to know how to best care for her body.

My fox of a husband has lost 40 pounds since August and is a running maniac. [4 mile run every other day and 15 mile bike ride on the other days]  That is said in a good and loving way.  I am very happy, proud and thankful that he is taking better care of his body to the glory of the Lord, to feel better and to give me a tiny bit of peace of mind that he might stick around for a while.    I know, we could all be called home today, but I appreciate his efforts and know that he feels better.

Although this daily journey is hard, sad and frustrating at times, my hope is built on nothing less than Jesus blood and righteousness.  I may not always be smiling but I do have a deep rooted joy and thankfulness because of the Holy Spirits work in all our lives.  I feel like such a failure at the end of many days but His mercies are renewed every morning and I know that He who began a good work in us will be faithful to complete it.  All praise to the King!

I’d just made another appointment for Hope to see her pediatrician and knew she was going to have to give blood for lab work.  She’s sick and tired of needles and shots so when I mentioned us going she broke down in tears.  Isaac, being the kind and compassionate brother that he is, went into his room to get something, of which none of us knew.  BTW, he’s just lost 2 of his last molars and received $2 from the ‘tooth fairy’ that very morning.

He emerged from his room and walked up to Hope.  “Here,” as he handed her a dollar bill, “maybe you can buy something with mom after you are finished with your labs.”  Hope graciously takes the dollar and he finishes with, “And remember…”, as he points to the words on the dollar bill that states In God We Trust.