Tomorrow morning, we will venture into new territory.
After Rebecca’s diagnosis involving her shut-down colon, Rebecca’s GI doctor tested her for an obscure autoimmune disease. Of the hundreds of children this doctor tested over the years, Rebecca was the only one positive. Her antibody diagnosis is GAD (glutamic acid decarboxylase) and it primarily affects the neurological system. We now know, this is the cause of Rebecca’s brain stem problems involving her lung and heart regulation and her stroke. Even her pancreatic issues can be at least partially attributed to this antibody. Rebecca’s profound neurological loss in her colon is now assumed to be the GAD antibody attacking yet another organ in her 5 organ-less body while the muscular portion of Rebecca’s colon is most likely affected by a tremendous amount of scar tissue. And we may still be missing other pieces of the puzzle.
What we do know: the GAD antibody is definitively causing destruction in Rebecca’s body, with or without added factors.
What we do not know: whether other obscure autoimmune/metabolic factors are involved in Rebecca’s body. GAD can often be paired with another systemic immune diseases.
Knowledge in a disease can bring great power but also great fear. We daily fight against the fear-factor.
So, what do we do with this critical piece of information? Good question. Dozens of specialists spread across the nation in multiple major hospitals have asked this same question on behalf of Rebecca the last couple of months. They have poured themselves into researching this little-known antibody because there are no studies to be found in pediatrics and we only have a couple of studies to examine in the adult population.
After countless meetings, conference calls, appointments, consultations nation-wide, tests and vials of blood, an experimental decision was made:
Rebecca will undergo IVIG (Intravenous Immunoglobulin) treatment in the hospital a minimum of one week of every month. The infusions will be delivered 5 days a week, 8 hours a day. This will continue (assuming Rebecca’s tolerance) until the month of May in which we will then re-test Rebecca’s colon and determine if any motility has returned. If her motility continues to be non-existent, Rebecca will undergo yet another major, life-threatening intestinal surgery.
I could give you a long-list of massive complications with this infusion treatment, but I feel you could look that up with a few clicks on Google. I will boil down our top concerns unique to Rebecca for specific prayer requests:
- IVIG infusions are black-boxed in the medical world for thrombosis, in particular, pulmonary embolisms and strokes. Unfortunately, Rebecca has acquired blood clot disorders which make her even more prone to clotting. Her last iron infusion with a mere IV formed a clot across her entire forearm. We are asking for prayers that with blood thinners on board, Rebecca will not develop any clots during her infusions.
- Rebecca’s colon is what they call a mega-colon (Rebecca affectionately laughs when she hears this term because she states it is the first time she has a disease that sounds like a super-hero disease as opposed to her un-fun, nearly un-pronounceable other afflictions. In fact, we will be engaged in a very serious conversation with doctors and when they say the word ‘mega-colon’, Rebecca will laugh out-loud, unable to contain herself, which in turn causes me to laugh while the doctors are looking at us like we have lost our minds. Yes, we have lost our minds and yes, we have a very strange sense of humor living in this maddening medical world….). Despite our laughs, a mega-colon is a very serious problem. Waiting these next few months on treatment and not directly removing the colon places Rebecca at a high risk for toxicity. A toxic colon without a spleen is a life-threatening crisis. Rebecca is also high-risk for torsion of her colon (twisting that causes a severe blockage requiring immediate surgery in a mega-colon state). We are asking for prayers against these complications.
- We also humbly ask for prayers for our emotional spirits. Rebecca will miss even more life outside of the hospital including school (which she holds dear), and time with friends and family. The boys will miss their mother and sister a minimum of a quarter of every month – all the way from milestone events like watching football games and getting ready for school dances to everyday events like having a parent home to help with their homework and share a meal. Brian will miss time with his girls and constantly fluctuating between hospital life, work life and home life. And I will miss my family being whole again….
The phrase I coined during this new medical frontier is “doing our best to make an educated guess”. An educated guess this treatment will not harm Rebecca. An educated guess this treatment will help Rebecca’s colon. An educated guess Rebecca’s colon will hold steady during the months of treatment. And an educated guess Rebecca’s immune system will be healed….
But while the medical team and I are making our researched and educated guesses, our ever-knowing, omniscient Lord is in control. He will guide us and prepare the way for whatever future He has written. And that gives me immense peace, an unexpected miracle in the midst of my ‘guessing’.
Thank you Lord.
“Then He placed His right hand on me and said: Do not be afraid. I am the First and the Last,” Revelation 1:17.
Your prayers keep us afloat during these rough waters.
Love to each and every one of you,