#EsthersMiracle

Esther's left eye visibly and obviously began turning inward on April 23, 2022.  We had seen a similar symptom with her 9-year old sister's left eye, and Evelyn has been seeing Dr. Sebastian Troia (a pediatric ophthalmologist) since she was 2 years old.  We made an appointment for Esther to see Dr. Troia on Monday, May 2.  He said her vision was fine, but there is something going on with her sixth cranial nerve, which is causing her left eye to turn inward.  Dr. Troia had another doctor in the clinic examine Esther, too, and they both agreed she needed to go to the ER immediately to get an MRI of her eyes and her head.

The MRI at Omaha Children's Hospital revealed a mass at the base of her head, where the neck and the head meet.  Their diagnosis is diffuse intrinsic pontine glioma.  Esther was admitted to the hospital and the neuro-oncologist team met with us on Tuesday, May 3.  They agreed with the ER doctor's diagnosis, and scheduled us for a telehealth visit with the lead neuro-oncologist doctor for Wednesday May, 4.  The doctor informed us of two treatment options - one standard care of treatment in Omaha, NE at the Children's Hospital and one trial study in Rochester, MN at the Mayo Clinic.

After two days of researching and discussing things with hospitals and other families with similar stories, Esther's first healing miracle is that she has been accepted to St. Jude's Research Hospital in Memphis, TN.  This is the number one recommendation from Dr. Troia and other families alike, and Esther was accepted by Dr. Klimo and his neuro-oncologist team on Thursday May 5.  Esther and her baby brother, Josiah, and Mommy and Daddy left Omaha, NE on Sunday, May 8 (Mother's Day) and arrived that evening at St. Jude's.  Esther had her first appointment Monday, May 9 at 8:30am.

Esther's last radiation treatment was Thursday, July 7 at 7am.  Daddy and Bubba James arrived in Memphis, TN on Friday, July 8 and the Memphis Three headed home on Saturday, July 9th.  The entire Desrosiers family is going to Orlando, FL August 7-12th for our first-ever family vacation for Esther's Make a Wish trip to see the Princesses.

While we were at Disney World, Children's National Medical Center in Washington, DC called to invite Esther to start preliminary tests on August 12th for the Sonalasense Clinical Trial.  While Esther passed all the rest of the preliminary labs, tests, and exams, there was too much inflammation in her brain as a result of the radiation treatment.  Doctors prescribed dexamethasone (steroid) to help reduce the inflammation, and planned to rescan in 2 to 4 weeks.  Since Esther was due back at St. Jude Children's Research Hospital the week of August 23rd, they would look at Esther's MRI from the 24th to evaluate the inflammation.  The swelling was looking better, so as soon as appointments at St. Jude were done, Mommy ad Esther returned to Washington, DC on August 27th to officially start the Sonalasense Clinical Trial!

On August 31st, 2022, Esther became the first person ever to receive the ALA drug with LIFU (Low-Intensity Focused Ultrasound) treatment to the brain stem for DIPG.  The right half was treated on August 31st, and the left half will be treated on October 3rd.  Follow-up MRI scans will be done prior to the second treatment to evaluate the effects of the first treatment.  Overall, Esther has been doing much better since the first treatment, and says that her right half is "waking up" from the neuropathy (tingling, stiffness, weakness as a combination of the diagnosis, biopsy, and radiation).  Esther and Mommy went home for a week in Omaha for local appointments (OT, PT, SL, chiropractor, dentist, and hospital clinic/lab).  Esther is busy being her feisty, independent, playful, silly little old self with all her brothers and sisters!

Esther came back to Washington, D.C. for CureFest 2022 and her second Sonodynamic Therapy treatment on Monday October 3rd.  She went home for about two and a half weeks after a clinic visit on October 10th until her next follow-up MRI on November 2nd.

Esther's November 2nd MRI showed 17% reduction in tumor size and the tumor cells appear less prominent and more like normal tissue - PRAISE THE LORD!!!  THANK YOU, JESUS!  Continue to pray Esther 7:3.

Esther's December 29 MRI showed more reduction in tumor size (42% smaller from diagnosis) and the tumor perimeter is less defined and getting harder to measure.  The doctors said it is "very reassuring" and "impressively better."  THANK YOU, JESUS, again!  Continue to pray Esther 7:3.

Esther's MRI at St. Jude on January 20, 2023 showed multiple smaller tumors and metastasis in her brain and spinal cord.  We were sent home with morphine and atavin for pain and seizures.

On Saturday morning February 11, 2023, Esther was experiencing extensive and repetitive grand mal seizures.  We took her to the nearest ER and she was transferred to the PICU at Omaha Children's Hospital.  Hospice stepped up to support us and we were able to bring Esther home around bedtime with oxygen and more atavin and morphine.

Esther went back to Jesus being cradled in her mother's arms surrounded by her family at home on Sunday, February 12, 2023 at 11:45am.

This fight ain't over.  We will keep fighting for "kids with ports" just like Esther.

Esther's Miracle, Inc. was approved by the Board of Directors on April 15, 2023.