Dear KKIM Family……….
Read these words…….please……….carefully……..don’t rush………repeat them…………prayer over them……….
Beware of any work for God that causes or allows you to avoid concentrating on Him.
Now let’s repeat this reading from Billy Graham……….
Our days are numbered. One of the primary goals in our lives should be to prepare for our last day. The legacy we leave is not just in our possessions, but in the quality of our lives. What preparations should we be making now? The greatest waste in all of our earth, which cannot be recycled or reclaimed, is our waste of time that God has given us each day. — Billy Graham
WOW! How impactful!
Here is an update on little Fiona from Belen, NM, who we have been praying for……….
Here’s the latest on Fiona, it’s in the Journal today. Frank
Two months after her daughter was hospitalized with a brain inexplicably shorting out, Desiree Jaramillo-Egan remembers being told it was time to consider hospice, time to start contemplating goodbye.
“I just want to give you my honest opinion,” a tearful doctor had told her. “She might not make it.”
She heard the words but could not accept them. Mothers are stubborn like that, passionately unwilling to let their children go so easily.
Thank goodness for that.
“The doctor was as frustrated as I was,” she says. “They had done everything they could for my daughter.”
Fiona was 3, a fireball in frills who enchanted people with her singing and dancing and a smile that could brighten her mother’s worst days.
But that was before Jan. 22. That night, Fiona was home in Belen playing Lucky Ducks with her mother when her cheery face went blank, then blue.
A few times in the two weeks before that, Fiona’s eyes had unfocused and rolled back before she vomited, leaving her lethargic and weak but apparently fine.
“But it wasn’t consistent,” Jaramillo-Egan says. “We didn’t know what it was.”
That night, Fiona vomited again, and at first it seemed that she had stopped breathing because she was choking.
Jaramillo-Egan was wiping her daughter’s mouth with her finger when Fiona bit down hard.
“And I thought, oh, my God, this might be a seizure,” she says.
She was right.
For 15 minutes, Jaramillo-Egan, who worked part time in a doctor’s office in Belen before her daughter’s illness, says she administered CPR and brought Fiona back from the dead. Her daughter required several more lifesaving efforts before she was stabilized at the hospital.
But what was causing her breathing to cease and her brain to seize was a mystery.
“We tested her for, you name it,” her mother says. “Swine flu, lupus, Hantavirus, meningitis. We did tests for lead poisoning, copper poisoning, mercury, two spinal taps, four MRIs, genetic testing. Anybody who would think of something, we’d test for that. I felt like we were using my daughter as a testing facility.”
Despite steroid treatments, seizure medications, antibiotics, infusions and plasmapheresis, the seizures became more frequent — one time as many as 30 an hour, Jaramillo-Egan says.
Fiona was slipping away.
Gone was the sparkle in her eyes, her ability to walk, talk, hold her head up, move her tiny body, limp and looped with tubes and electrodes. She needed to be diapered again. Her only voluntary movement was flopping her left arm.
These were her mother’s worst days, but there were no Fiona smiles to be had.
When doctors finally ran out of ideas, Jaramillo-Egan hadn’t.
“I asked for a second opinion,” she says. “There’s no way I could go home and wait for her to die.”
On April 5, Fiona and her mother were medevaced from the University of New Mexico Hospital in Albuquerque to The Children’s Hospital in Aurora, Colo., for more tests and treatments. And answers.
“The worst thing is not knowing what is doing this to my daughter,” Jaramillo-Egan says. “At least if you know, you can have a plan.”
Nearly three weeks later, doctors finally have that plan.
On Thursday, test results indicated Fiona has encephalitis with N-methyl-D-aspartate (NMDA) receptor antibodies. That mouthful essentially means that a portion of Fiona’s brain is under siege by her own immune system. What causes this rare disease, which predominantly strikes women, remains unknown.
The good news is it’s treatable. Even before results of her spinal fluid came back positive, doctors had begun treating Fiona with the first of two rounds of Rituxan, a cancer-fighting agent that has become something of a go-to drug for all types of rare diseases, particularly autoimmune diseases.
Fiona, doctors have told her mother, is one of the youngest and more severe cases they have seen, but her prognosis is good.
It will take time, perhaps a year or two, for Fiona to find her way back to being that singing and dancing pixie her mother misses.
“Now it’s just the waiting to see if it works,” Jaramillo-Egan says. “But at least we finally know what we’re up against.”
It’s a rare moment of relief for a single mother whose crusade to save her daughter is being waged miles away from home, from her 14-year-old son, her family, her friends.
“It’s hard to be away,” she says. “But this is where we need to be right now.”
One night this week, she heard Fiona moan softly. It was the first sound her daughter had made in months.
It is, she thinks, a good sign.
“Just that one second is priceless, and I enjoyed it and cried,” she wrote on Fiona’s Facebook page. “Come on, baby, fight this, pull through.”
Jaramillo-Egan is not about to give up that fight.
PRAISE GOD for this news….Friends, thank you for your prayers….Let us keep Jannetta, Our DAILY CUP webmaster and of Albuquerque Rescue Mission, in our prayers as she mourns the loss of her Brother.