A New Specialist...

The time has come for Kara's appointment to see a pediatric rheumatologist at UCSF Children's Hospital. Her appointment is Wednesday at 8:15am. Would you please join us in praying for this appointment? We no longer have expectations, but our prayers are that this doctor is truly interested in Kara's condition, her future, and the future of the disease itself. Your thoughts and prayers are felt daily...we cannot thank you for your prayers!

Blessings,
Kelly

A New Hope...

Since Kara's last appointment with her GI specialist, I have been researching our options for a rheumatologist. The one we currently see is actually Kara's pediatrician now. As we await the referral approval to see a doctor at Stanford, I thought I'd do a few searches on the internet to see if I could find a local Scleroderma specialist.

My search found a thread on a message board where I am a member that connected me to a mom in a town near me. I sent her an email. She called me the very next morning. She began to share her journey with her daughter's Scleroderma. Tears welled in my eyes. Their journey has been very similar to our journey with Kara...all the way down to having the exact same experiences with the two rheumatologists we have seen so far!

They told her daughter she had 2 years to live because of her lung involvement, while saying that she didn't have Scleroderma, and they wanted to put her on the normal chemo treatments to slow down the progression of the disease...that she didn't have...ARE YOU KIDDING ME???? I couldn't believe what I was hearing.

Kara's rheumy has been saying nearly the same things to us. "If she has it, it isn't active...but look into this treatment..." I am so thankful that Kara's GI doctor has been so on top of Kara's disease and has bee honest with us along the way.

Thankfully, this mom began researching her daughter's options for treatment other than the chemo treatments that are used for Scleroderma and found one that has far less side effects...using antibiotics! After seeing multiple specialists, they proceeded with this treatment and her daughter has been in remission from her Scleroderma and her lungs are functioning at 100%!!

I have seen this treatment as an option but hadn't really looked too far into it because we haven't thought of Kara as being "sick". There are so many other patients who are living with Scleroderma externally that it is easy to see that they are "sick". Kara's disease has been primarily internal at this point, but we are realizing it is causing more and more issues for her GI tract.

Kara had a tough weekend. We had an emotional weekend. Scleroderma caused great frustration and fear to rise to the surface of our emotions. Our emotions do not dictate a lack of faith that God is in control, or that He can and will heal her. Our emotions are real. They are moving us to act in faith.

We have a new hope that Kara will not have to wait until the disease is very advanced so the benefits of chemo outweigh the quality of life she is living. We are reading up on this Antibiotic Protocol through The Road Back Foundation. I am hoping that she can be treated this early on in her journey and switch it into a journey of remission.

"Hope deferred makes the heart sick,
but a longing fulfilled is a tree of life."
~Proverbs 13:12

Our hope is not deferred, but it is a longing to see Kara a tree of life and our family to offer hope to other families on the same or similar journey.

Jessica's story

Autopilot

I have realized that I have been living in autopilot since Kara's diagnosis. We are approaching 2 years of our journey with her Systemic Scleroderma. God has been so sweet to allow me to get used to this new journey little by little. To catch you up since my last post...

In May 2010, Kara's achilles tendon decided to tighten up. She was on crutches for a week. We had hoped and prayed it was a sprain, but when the pain suddenly went away one evening, we realized it was her Scleroderma reminding us it was still around. PRAISE THE LORD that the tendon did release! Exactly one week later it tried to do it again, but didn't stick around.

We had a great summer riding roller coasters, visiting the beach, enjoying bbqs with friends...a typical summer. Aside from an occasional tummy ache remedied by resetting her digestive tract, health wise the summer was quite uneventful.

In September we participated in the Stepping Out for a Cure Scleroderma Walk in Sacramento. I was surprised that it was so difficult for me to be a part of it. I had to face the reality that this is now our life. Most days I was able to not think about it, but being a part of the walk showed me that even when Kara is having great stretches of time, there are still other families out there who are not. So, as a familiy, we are now praying God will show us exactly what we are to do with this journey outside of just caring for our family's immediate needs. This means, autopilot is now turned off and I am learning to be present every day. I am letting myself feel, everyday. I am trusting God, every day.

Kara has now started 8th grade. She is doing well, even though we are realizing her Scleroderma is active after all. Her Pediatric GI doctor confirmed that it is, which has confirmed that we need to pursue a Rheumatologist who is top-notch in Scleroderma research and treatment.

So, here is added blessing to one from last summer...Kara's original Pediatric Rheumy switched over to General Pediatrics and became her Primary Care doctor. At that time, the blessing was combining 2 doctors into one. The added blessing is that we can now add a Pediatric Rheumatologist at Stanford to Kara's Dream Team! GOD IS SOOOO GOOD! Please join us in prayer that we will be able to get the referral and get her in to see this particular doctor who is brilliant and highly recommended!

We have also been blessed by two young people that we know who each wrote research papers on Scleroderma for school. It is such a reassurance that people care, people are praying and people will join us in our efforts to get the word out about Scleroderma and desire to understand what our daughter and our family is facing.

Most everything else is still the same. Kara is playing on the school volleyball team again. She is staying active and I think most days she doesn't think about her health issues. She doesn't complain, she just lives and loves life!

"Yes, we should make the most of what God gives, both the bounty and the capacity to enjoy it, accepting what's given and delighting in the work. It's God's gift! God deals out joy in the present, the now." Ecclesiastes 5:19 The Message

It's been a year!

I cannot believe we are at our 1 year anniversary of finding out Kara has the Systemic Scleroderma marker. I couldn't wait for last year to end. It was a tough year for us personally. God has been so good, though, as he always is!

So far, this year is off to a great start! Kara is feeling pretty good. School has been the true test of her body's strength. She has some tired days, but not at all like she was last year. She actually doesn't fall asleep on the way home from school anymore! Not bad for a junior-higher! YIPPEE!! Kara even played volleyball in the fall and handled that extremely well! She will be playing again this spring!

Friends, God is faithful! He has sustained us through the most difficult year of our adult lives. As parents, it is horrible to know that there is nothing you can do to make your child better. My heart hurts for those battling this terrible disease who don't have the hope that only Jesus gives.

Right now we are facing upcoming one year follow-up appointments. As we learned last year, this will take a few months to get through all of the appointments and know test results. We are expecting God to continue to give us great news! Believe and pray with us for miracles to continue in Kara's life! We felt your prayers all year and know that God heard you!

Thank you for your prayers and encouragement! You have been an amazing support not only to Kara, but to us all.

"Therefore, brothers, since we have confidence to enter the Most Holy Place by the blood of Jesus, by a new and living way opened for us through the curtain, that is, his body, and since we have a great priest over the house of God, let us draw near to God with a sincere heart in full assurance of faith, having our hearts sprinkled to cleanse us from a guilty conscience and having our bodies washed with pure water. Let us hold unswervingly to the hope we profess, for he who promised is faithful. And let us consider how we may spur one another on toward love and good deeds." Hebrews 10: 19-23

No news is good news!

My mother-in-law has always said, "No news is good news." I hope you have all subscribed to that over the last couple of months since my last update. Although, I am realizing now that I have deprived you of GREAT news during a time when we all need it!

We found out in June that Kara's Pediatric Rheumatologist was making the transistion to Pediatrics in general. This was GREAT news because that eliminates one whole doctor from our team...now her Pediatrician is also her Rheumatologist! YAY, we save a copay and other input! LOL

In July, Kara tolerated our Teen Girl Ministries Road Trip to Disneyland very well! It was an exhausting time but she had a fabulous time...even riding on the bus!

July also began our many follow-up appointments. Here Gastro and Rheumy gave her a quick thumbs up, then we saw her Pulmonologist. This was a first time work-up for her Scleroderma and a follow-up for her asthma. The dr. put her back on her rescue inhaler and scheduled a full set of Pulmonary Functioning Tests to check her lungs. This was the last baseline of testing we really wanted to have done, and also the last organ that needed to be checked for peace of mind. All of her doctors agreed that they were curious to see how she tolerates school.

So, August poofed and yesterday was her final follow-up with her Pulmonologist for the results of the PFTs and........................

Not only did God decide to protect her lungs and they showed no sign of Scleroderma damage but...He healed her of her asthma!!! That's right, her lungs are functioning at 105% capacity!! Praise the Lord!! WOOHOO!

So, now she will have follow-ups every 6 months and will have all of the tests re-run annually. This will allow us to jump on anything that could possibly come up.

She is back on the volleyball team at her school and plans to play basketball in the Spring and tennis in the Summer. She isn't so excited that she now has the thumbs up to run the mile, but she'll muscle through it and do well.

I am so grateful for your prayers. Kara told me that she has been comforted many times just knowing how many people were praying for her. As a family, we have needed those prayers. This has been a very stressful year for us, but God has been so gracious through it all. He is so good to his children!

When I began this blog, God gave me a scripture that is in the sidebar on the left. In all of this, we will "always have hope and praise you more and more." Psalm 71:14

The latest...

I am so sorry it has been so long since my last post. Just remember, no news is good news. That's right...it's lots of good news...

Kara's heaviness in her abdomin is completely gone. The morphea spot on her leg is gone. Her fatigue has diminished significantly since we began treating her thyroid. Her weight gain has stopped and the puffiness in her face is gone.

She was my sidekick at Stars Camp and kept up pretty well. She needed alot of sleep when we got home, but she was up for the adventure walk and didn't miss breakfast or swimming while we were there. It was great to have her there to thank so many of the churches that have been praying for her.

Tonight she had pain again in her abdomin for the first time in a long while, but it seems to be her GI tract. She hadn't eaten well today, then delayed her dinner which left her with a pretty bad tummy ache while walking the dogs with her sister. It was so bad I had to go pick her up, get her home and get food in her quickly. It subsided within an hour or so. I guess she had to test the boundaries...normal for any of us.

Kara has a few upcoming follow-up appointments and labs to do in the next few weeks. We anticipate all good news. Thank you for your continued prayers...we serve a faithful God!!

"All the ways of the LORD are loving and faithful for those who keep the demands of his covenant." Psalm 25:10 NIV

What a week!

Kara's blessing turned out to be quite a pain! Her rash didn't begin getting better until Thursday. It was very uncomfortable and itchy. Once it began getting better, it healed up quickly, though! YAY, God! By Thursday evening, she said, "Mom, I've got to go to school tomorrow." Boy, did I agree!

She went to school, then we hurried off to an event at a church out-of-town. We had a great time at New Hope in Cotati. It was An Elegant Affair: Chocolate by Candlelight. I think Kara regrets the amount of chocolate and dippers she ate that night. She was so exhausted from Friday, that on Saturday she missed her tennis match and just couldn't get it together for our Mother's Day luncheon at our own church. We are learning how to handle Kara's fatigue, unfortunately, the hard way.

Mother's Day itself was a great day for us as a family...and we were home early enough to get to bed early. 8-) See, we are learning.

Today Kara had a follow-up with our Family Practioner in regards to her Thyroid. Her Thyroxine (T4) is low, so she will begin taking a low dose of Levothyroxine to bring it back up to the normal range. We are hoping that this may help her fatigue, constipation, muscle aches/cramps, and personally...her forgetfulness! LOL She has seemed quite forgetful, so a mom can hope, right??

Kori also had an appointment today...for lower abdominal pain. Oh, grrrr! Remember, we had her tested, so I am confident she does not have Scleroderma. She has an ultrasound scheduled tomorrow morning. Please say a little prayer for her. They are looking at her gallbladder, among other possibilities, but very common possibilities.

God is in control. He loves us. He is our comfort. He is our provider. He is our healer. He is our Deliverer.

"The Lord is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song." ~Psalm 28:7 NIV