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
Monday, October 25, 2010
Sunday, October 3, 2010
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
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
Thursday, February 25, 2010
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
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