I know that some of you were moved to pray for Caitlin and her family by my previous post. Now I would ask you to pray for her family, and if it seems appropriate, to weep for them and for the brokenness of this world and the pain of death. Caitlin passed away this past Sunday. I would encourage you to read her mom’s testimony here. But I know that many of you won’t click through, and so, to make it easy, I will copy and paste it here. And as I type, it is raining.

It is Florida’s dry season

There is a joke about Florida’s seasons. Florida has 2: a wet season and a dry season. The wet season runs from April-October, and the dry season runs from November-March. They are just that. It rains every day during the wet season and not at all during the dry season.

So imagine our surprise when God winked and threw us a couple rainbows and some rain in the last several days.

Sunday morning, as I woke next to Caitlin, on the make-shift bed we had relocated downstairs, I knew the day was going to be different. Although she begged for me to take her to church, I knew we would not get there and that she was failing us.

I will not weigh this post down with details and specifics, because death is not beautiful or glamorous as some have described it. I will tell you the beautiful part of this story however.

We held Caitlin in our arms, while family gathered around, and at 3:24 on Sunday afternoon Caitlin took one last breath and died.

We cried some more, and said goodbye. And then, as if God rolled out the carpet for her to travel to heaven, a rainbow appeared. That means, moments after each of her family members said goodbye it rained (for only a few minutes) AND produced a rainbow….in my heart I want to believe Caitlin took the hand of loved ones, and unafraid, she skipped up that rainbow and right into heaven with only one look back to wave and say, “It’s ok mama! I promise I’m not scared! I can skip again!”

Again, without details of the day, I will fast forward to several hours later. We let go of the shell that had once contained Caitlin’s incredible spirit. We kissed those uncharacteristeric chubby cheeks, and the no-longer crooked and droopy mouth, and we placed her body into the care of the funeral home.

As they drove away I started thru the house and out the back door to retrieve the other children from a friend’s house. As I got half way thru the backyard, the sky opened up, and it rained. I stood in the rain with a friend who was walking with me. Honestly, I think we were both paralyzed with shock. Turning our heads toward the sky in stunned silence, we put up our hands and shrugged our shoulders because words weren’t necessary. As our feet hit the back porch of our other friend’s house just a few yards away, the rain stopped.

We gathered children and sent them running thru the backyard for some dinner. Again as we reached the halfway mark in the joined backyards, it rained. It rained harder and harder until we reached the door of my back porch. It rained for 3 minutes and was done. Another wink? How can it be anything but a wink.

Then, finally, after a day of being surrounded by family and friends, and Jeff and I dealt with the tasks of funeral home and church service arrangements, we arrived home yesterday afternoon. We were greeted with a dozen excited and shouting adults and children. Apparently, while we were out “arranging”, at exactly 3:24, a rainbow, ever so faint and light, appeared in the backyard of our home.

God let Caitlin throw her own rainbow. She loved them so much. She thought they were beautiful. And in the last year, when everyone joined in and made it “hers” to own as a symbol of things so much bigger than she could ever know, she was thrilled.

So I’m going to believe, that God picked her up, and said, “Let’s send a message to mommy, daddy, and everyone left down on Earth crying for you. How could we let them know that you’re ok?” It wouldn’t take Caitlin long to reply, “Mama loves rainbows!” And with that, God held her hand, and together they threw a rainbow; a tiny, fading, almost invisible rainbow.

Rainbows and rain, during the “dry” season…..best.wink.yet.

with love from our broken hearts, d

Our church, Covenant Presbyterian Church in Oviedo, Florida, meets in Partin Elementary School. A student there has a sister, five year old Caitlin Downing, suffering from a fatal cancer. We’ve joined the school in ‘cheering for Caitlin’ by praying for her. This morning’s Orlando Sentinel published an article about Caitlin’s condition which gives us a greater understanding of the seriousness of her situation. I invite others to join us in prayer for this little girl.

Can FDA help Caitlin Downing battle brain tumor?

By Marni Jameson, Orlando Sentinel

Medical science moves too slowly for some, in part because the Food and Drug Administration’s job is to carefully, methodically regulate the pace.

But once in a while, even the FDA makes an exception to its own rules. Sometimes it takes just one little girl.

“The FDA is all about science, not emotion,” said Dr. Jeff Downing, a family-practice physician from Oviedo. “I get that. The government doesn’t want wild procedures going on without science behind them. But waiting is tough because we don’t know how quickly this will grow.”

The “this” he refers to is his 5-year-old daughter’s deadlybrain tumor.

Diagnosed in January with diffuse intrinsic pontine glioma(DIPG), Caitlin Downing is one of about 200 children in the United States each year who gets this type of cancerous brain tumor. Because these growths wind around the brainstem, they cannot be surgically removed.

They are 100 percent fatal; 98 percent of children die within two years of their diagnosis.

Dr. Mark Souweidane, a pediatric neurosurgeon atMemorial Sloan-Kettering Cancer Center in New York, has devoted much of his 17-year career to finding a cure for DIPG.

On May 1, Caitlin became the first person to take part in a phase one clinical trial for which he had just received FDA approval.

The experimental treatment involved opening the skull to create a window onto the tumor site, then delivering a cone of enhanced radiation directly to the area. This “cone of death” emits radiation laced with small molecules that seek out the tumor tissue, attach to it and kill it.

“We get a high concentration where we want it,” Souweidane said.

Initial results were encouraging. A follow-up MRI of Caitlin’s brain showed that the tumor tissue in the treatment area was dead.

“But the cone of death didn’t get the whole tumor,” said Downing, whose family practice is in Casselberry.

By September, medical scans showed the tumor was growing back.

Because Caitlin did so well with the first round of treatment, her parents wanted the procedure repeated. That, however, would require special FDA approval.

“The physicians we worked with all said, ‘We’ll submit the paperwork, but don’t expect this is something we’ll get,’” said Denise Downing, Caitlin’s mother.

So, they put in their plea to the FDA, knowing that the words “government” and “fast” don’t usually occur together.

Yet in a move that stunned everyone, the FDA responded quickly with a go-ahead, a one-time, “off-study” approval that fell under the murky heading of “compassionate use.”

Those who qualify must submit proof that they have life-threatening conditions, no other treatment options and a good argument that they might benefit, said Stephanie Yao, FDA spokeswoman.

“If the doctors thought it was a good idea, and the parents wanted the treatment, they said we could go ahead,” said Denise Downing. “It was really a David and Goliath moment, and we won. They came through.”

There was just one catch: Caitlin had to get the same dose she received during her first treatment. Since Souweidane treated Caitlin, he has doubled the dose in subsequent study patients, who have tolerated it well, and he plans to quadruple it.

However, as with all phase one trials, the goal of this study is to prove the safety of a new treatment and to figure out dosing. Subsequent trials aim for effectiveness. A double dose of this radiation treatment on a human brain has never been done. Giving Caitlin a larger second dose would be “unconscionable,” said Souweidane.

But Caitlin’s tumor has grown beyond the reach of the approved dose. So after conferring with their cancer experts, the Downings decided to try one more cancer weapon. Chemotherapycan get where the immuno-radiation therapy can’t. The Downings hoped chemo would shrink the tumor and create a smaller target.

Caitlin has gone through two rounds. However, both Souweidane and the Downings believe that shrinking the tumor to the point where the second, FDA-approved surgery would be advisable is unlikely.

“We are so grateful that the FDA came back with an approval,” said Denise Downing. “I just wish her tumor wasn’t so big. We either need a bigger dose or a smaller target.”

Meanwhile, Caitlin’s symptoms are worsening. Her face is puffy on one side, and she’s having more problems walking and seeing, her mom says.

“She knows her body’s not doing what it used to,” said Denise Downing. “She apologizes to me all day long, saying she’s sorry she needs my help, sorry she’s not getting better.”

When Souweidane saw Caitlin and her mom in New York two weeks ago, he saw the same spirit that had won him over from the start. “She was still her spunky self, challenging us in thought-provoking ways,” he said.

In fact, she had a question for him: “Can you get rid of the bump on my brain before I go to heaven?” she asked.

Denise Downing says she has no doubt that Souweidane and his team are on the right track. “I believe in everything this man is doing,” she said. “He probably has a cure. I had hoped that our daughter could live long enough to get that cure. But that’s not going to happen.”

Regardless, “Caitlin is a pioneer,” Souweidane said. “She has advanced science in important ways. She has not gone through this for nothing.

That said, he added, “If I could save one child’s life, it would be hers.”

mjameson@tribune.com or 407-420-5158

Copyright © 2012, Orlando Sentinel

[The Orlando Sentinel keeps articles behind a paywall. I am a subscriber, and so I am making the decision to share this article with my friends who are not.]