Medical Recap

Medical recap:

We’ve had a lot of new friends join the tribe and I’ve gotten some messages about what led us here. So here’s a quick (actually long! )recap of the last 8 years. The emotion and the details are left out. It’s been a long, painful road. We are so grateful we don’t walk alone.

August 2015 (8 years old): Mass amounts of constant mouth ulcers started to show up. Swollen cheeks, bleeding lips, etc. Thought they were extreme “canker sores.”

Oct 2015: Weeks of fatigue and fever and ulcers led to mono dx.

Jan 2016: Mono turned into one acute illness after another. Ear infections, UTI’s, colds, GI bugs requiring IV fluids, daily fevers and sleeping 16-18 hours a day. Couldn’t get through a couple hours of school without spiking a fever or falling asleep.

Finally pneumonia and double ear infection discovered.

Feb 2016: Pneumonia cleared but never physically improved. Headaches started and overnight personality shift as yet undiagnosed disease started attacking Tates brain.

March-June 2016: (Turned 9)

Brain involvement continued to progress. Academic ability and daily functioning skills continued to deteriorate. Labs couldn’t pinpoint a cause. Meds didn’t help .(wrong kind ) We couldn’t get the medical community on board that there was an organic, systemic cause or to treat it that way. We spent lots of $$ on alternative, holistic care, private therapists, etc. Nothing helped. School was a nightmare and we agreed to Tates first of two 3 week partial hospitalization stays. We were hoping more consistent eyes would lead to help.

July 2016

Special approval obtained to see adolescent specialist that focused on chronic fatigue. Autoimmune labs finally run and discovered a Concerning ANA (antibodies to self) level. This led to rheumatology referral…3 months later. We waited and tried everything we could while life continued to unravel. Lack of understanding by friends at school and us trying to protect Tate led to a lot of isolation.

October 2016:

We met our beloved rheumatologist, Katie Moore. Finally aknowledged for some kind of immune dysregulation, but unable to isolate through labs. Neutropenic. Referrals started for immunology and Dr. Moore started consulting with Texas Children’s and Ottawa, Canada. Two leaders in autoimmune brain disease.

November 2016

Second 3 week partial hospitalization. Us trying to appease to keep Tate out of inpatient care. Liver enzymes skyrocket. Despite my learning brain mitochondrial damage elevates liver enzymes, biopsy done. Of course, normal.

December 2017

ANA skyrocketed above measurable levels. Steroid burst eased brain symptoms briefly then things continued to worsen. Ivig infusions started as a shot in the dark. 1st month: aseptic meningitis and worsened symptoms. By this point, the Tate we knew was gone. Official CNS lupus and systemic lupus diagnosis.

January 2017: Month two IVIG, no meningitis, but still worsened brain symptoms.

February 2017: A MIRACLE! Ivig calmed the brain inflammation and brought our Tate back.

March 2017-September 2017 (turned 10 years old)

Brain symptoms mostly controlled with monthly ivig infusions. Systemic rheumatology meds started to try to control progressive body symptoms, with poor results. Mild, sporadic knee pain, regular fevers, fatigue, butterfly rash, Sun sensitivity, headaches, etc.

Tate would go into a “flare” and the pot would be stirred. She’d lose all academic gain and physically all symptoms would worsen. Steroid infusions used to calm her immune system but never worked like they should.

October 2017

School was no longer a possibility as she just couldn’t keep up due to all the health changes and how much she had missed over the years. The year of untreated brain inflammation took its toll. Tate moved to homeschooling. Fear does crazy things to parents and students, afraid to “catch” what Tate had, this was a lonely time. We had some amazing teachers!! The next fall we joined ApEX (homeschool hybrid) which led us to the most amazing support network. Tate also found theater through NYT and we arranged everything to get through those 2 hr rehearsals and her shows. It kept her fighting !

***We had a few blips during these years when ivig was denied from insurance or we trialed a month off. Symptoms returned rapid fire, Confirming we were on the right track with treating brain inflammation.

January 2018-Spring 2021 (Turned 11,12,13&14)

Multiple weekly appointments for years.

Every infusion was tried, immunosuppressants, steroids, etc….things continued to progress. Many hospitalizations for normal viruses (flu, colds,) that would trigger flares. Tate was developing massive, painful ulcers in sensitive areas that they’d never seen before. But as they’d never seen Behcets and lupus documented together, they didn’t think it could be what turned out to be the rare pediatric behcets. Vasculitis would cause horrible all over pain. Joints were swollen, first signs of movement disorder, labs becoming more abnormal , etc. Really scary bone and blood infection with no known cause. Things just were Becoming more abnormal and difficult.

By this point, Tate had developed antibodies to most organs in her body which all result in diseases. Most were “in progress” meaning the organs were being damaged and eventually would fail. Thyroid, pancreas (diabetes,) adrenal glands (Addison’s,) etc. Most days despite her sweet, bubbly personality, she felt awful.

April 2021:

After an especially rough but no answer winter, we were sent to Mayo in Rochester, MN. Genetic

Panels had already been sent (what rheumatologist does that? Ours!) and Mayo added POTS and sleep disorder to the long lost of dx.

Genetics came back showing lots of issues on chromosome 8. Nobody understood. 2nd panel sent.

May-June 2021: June Admission with a flare and more terrible ulcers.

2nd genetic panel confirms devastating mosaic trisomy 8, Behcets, EDS, among others including “unknown significance“ meaning they don’t know yet what they represent. Met with our dear geneticist Janet bell and Learned Tate likely would develop bone marrow cancer and would need a transplant. There was a bit of hope that although awful, this was the answer and the progressive issues were treatable and possibly curable! We chose to turn it into hope.

First bone marrow biopsy confirms 97% MT8 but no cancer. Blood at 96% MT8. Highest recorded they could find. They knew of nobody else like her (most MT8 kids had syndrome characteristics from birth.) central line (port) surgically placed .

Found the story of Andrew (The Chicken who saved us) and made a sweet friend through his mom, Kristin. Andrew was the 1st Patient transplanted for what we now know is inflammatory MT8. 12 years ago-he’s doing great! More hope.

Hematology appt brought Taizo Nakano (our sloth Dr.) on board and he started presenting Tate to national boards.

July 2021:

Tate admitted to the pulmonary floor (only place with room) in severe abdominal pain. Unable to keep anything down. Discovered a gut filled with terrible ulcers-again, like nothing they’d seen. She had an ulcer perforate outside of her gut in June. A perforation in the gut is life threatening . There was a lot of concern. She was very sick.

August 7 2021:

Meds not stopping the inflammation. Tate is on a PCA narcotic pump. Told she will not survive without a bone marrow transplant. But currently too sick. Only 10% chance of surviving.

September 2021: Sent home on hospice for pain management on a never before given extreme amount of immune suppression to try to get her body to heal those ulcers enough to survive transplant. Tate was so very sick and so medicated due to pain. We felt like we were watching her slip away a little bit everyday on our couch. She had a couple more admissions during this time to deal with varying issues. Hospice was so so hard. But we had a fabulous nurse, Kathy, who helped so much! Covid time meant limiting exposure only to necessary medical teams coming into the house. Any additional illness would disqualify Tate from transplant. It was her only chance.

December 21st 2021:

Broviac central line and feeding tube surgically placed. Ovary removed. Discharged Dec 24th.

December 27 2021: 3 miserably sick days at home and admitted back to the ICU. Didn’t leave the hospital again until the end of May 2022. Tate didn’t sleep in her own bed again for 7 months.

February 2022: MT8 Almost 100% in both blood and marrow. Showing early MDS (bone marrow cancer) More confirmation that transplant was the only option.

Feb 2022: Ablation chemo started

March 2nd 2022: Bone marrow transplant (15 years old-spent in the iCU) We had the best nurses and therapists during Tates admissions. Transplant was horrifically difficult. But Tate did it by the grace of God.

May 2022:

Discharged to Brent’s Place apartments.

July 2022:

Home!!

Lots of admissions since initial end of May discharge. Movement disorder dx, lupus is back, behcets is simmering and although transplant was successful at eradicating the cancer, it’s considered a fail for the MT8. However, we believe there is something else that was missed and are waiting on further genetic studies and are working with other teams across the country. Tatum’s pain continues to progress and she continues to struggle on many levels . Doctors really are at a loss for next steps. She truly is 1 of 1. There are 20 kids in a study at the NiH with mT8. And although there are definite shared characteristics, Tate is different than them all.

We are so grateful for her loyal team here, the family and friends that have hung with us and all of you…Tate’s Tribe. We are grateful. Every day is a gift from God. Cherish the people in front of you.

Keira’s story:

Dec 22, 2022: Brain tumor in 3rd ventricle found.

Jan 6, 2023: Tumor removed in Jacksonville, FL. Benign but life threatening if left in.

Keira is still recovering, but doing well! She doesn’t like the public attention, so you’ll only find sporadic updates here.