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
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