We feel him walking beside us.
Day 8: Child life squish mallow for the win! A brief smile amidst continual pain today. Adding another pain patch once insurance jumps on board and praying that the two steroid slugs she’s gotten will start to kick in.
I’ve received several messages from sweet friends with various ideas wanting to help Tate-We appreciate the love! I think it’s time to share what we’ve learned the last 6 weeks and where we’re potentially headed. (This will be long.)
Tate got sick the end of 2015 when she was 8. End of 2016 she started ivig and 2017 we finally landed on a lupus dx. These years were brutal as her body initially chose her brain as it’s primary target. In addition she struggled with fevers, fatigue, oral ulcers, migraines and constant acute illnesses. PWe saw our Tate slipping away for about a year and a half. We were terrified, Dr’s were confused and kept trying all kinds of psych meds (didn’t help) as we pleaded to show them they were missing the organic cause. Praise God IVIg was a miracle(and continues to be) to save her brain. With her brain inflammation finally calmed down, her body inflammation started to increase. All the above persisted as we added joint pain, muscle pain, brain fog, memory issues and infections. Bacteremia, osteomyelitis, influenza, flares with horrid ulcers and body pain, unrelenting fevers, GI issues, dystonia, antibodies and med reactions have increased the length and frequency of in patient stays. We were always told, “There’s more going on than lupus, we just aren’t sure what it is.” All we knew is that she was continually adding organ specific issues….antibodies to her spleen, adrenal glands, thyroid and ovaries as well as full body symptoms. Meaning they anticipate a whole host of additional autoimmune diseases as those organs slowly are destroyed by her body. Lots and lots of meds have been tried, most with little positive effects. (We’ve also tried a host of naturopathic tests and treatments to no avail.)
About 6 weeks ago we received a second genetic panel back showing that Tatum not only has a mutation for crohns and colon cancer but has Behçet’s disease (never seen with lupus,) and more importantly a chromosomal issue called mosaic trisomy 8. The % of Tates cells that are affected are higher than they’ve seen here…almost 100% in her bone marrow and 93% in her peripheral cells. Skin biopsy is pending but they anticipate it’s everywhere.
This is extremely rare (maybe a couple hundred reported in the world?) Most of those have syndrome characteristics e.g. low IQ, developmental difficulties, hypotonia, congenital anomalies, etc. Tate has none of those. They believe she’s in a rarer category of people for whom this creates unusual autoimmune and auto inflammatory issues. These issues progress as the trisomy 8 takes over more and more cells. It also can turn into blood cancer. Terrifying!
There is a miracle boy named Andrew (and his sweet mom Kristen,) who really created awareness of this category and in order to save his life received a bone marrow transplant a handful of years ago. He is now a healthy young adult. As far as I can see through research, there hasn’t been any documentation of another trisomy 8 kiddo receiving a bone marrow transplant. As Tates diseases and illnesses progress, this is a real possibility for her. Her case is being presented to pediatric transplant boards across the nation. A transplant for Tate with all her accompanying issues would be difficult and dangerous. Absolutely terrifying! But it also gives us and more importantly, her, the chance to dream of a better quality of life. In the last year and a half, her health issues have stolen so so much. Friends walk away, school (even homeschool) is horribly difficult, extracurriculars-namely her love of theater is nearly impossible, vacations, a trip to the store, bike rides, going to church and even walks with her dogs have been abandoned or require such orchestration that there’s not much left for the main event. We are praying that getting this current flare under control will offer a reprieve so we can move forward with our long term goals. We are tired, and worried, but we are ready to fight back. Please pray that God opens the doors we need for the outcome he has planned. We feel him walking beside us.