Hoping for Hope

As Megan's husband and Kyrie's uncle, I will do my best to stand-in and update the site. No additional news as of yet. Prayers are needed more than ever and we continue to hope for hope. Thanks to everyone for your continued thoughts and prayers.

More about today.

Kyrie is receiving her blood transfusion this afternoon. She still hasn't opened her eyes, but has moved a little and mumbled words.

Jordan said that the MRI showed tumors growing all up and down Kyrie's spine, in the cracks and crevices, and he was told that "it's one of the worst cases they've ever seen." The tumor in her brain is twice as big as the original tumor, before the surgery.

As far as a next step goes, Dr. Rosen will be seeing Jordan and Lacie tomorrow morning. Jordan said that he and Lacie wouldn't be opting for radiation because it's very painful (it burns the cells) and would leave insurmountable brain damage. No matter what, after Dr. Rosen's visit, they'll be leaving the hospital, either to pack for a trip to St. Jude's or to make her comfortable at home. Those last five words claw at my eyes and rip at my gut.

I'm heading to Wichita this evening, so I may not post like I normally would.

Words fail to convey the pain right now. It doesn't make sense, it isn't fair and even weeping an ocean couldn't alleviate the hurt. All I can do right now is ask that you not leave them. Please continue to pray. That's all we've got.

Each one of my fingers feels like a brick as I type this.

The tumor in Kyrie's brain is twice as big. The tumor in her spine is also larger.

Before Kyrie's MRI this morning, her hemoglobin was low, so they were looking at a blood transfusion this afternoon. Now, I don't know what the plan is. We're waiting on Dr. Rosen, Kyrie's oncologist, to come in.

We're hoping for hope.

Moments away ...

Okay, today's the big day. We'll know more about the cancer that Kyrie is fighting. Are the tumors growing? Are they the same? Are they shrinking? Signs of stroke damage? Fluid? Lots of things to check.

I know each one of you has a life full of complicated needs warranting prayers. You may have children or grandchildren of your own, health issues of your own, situations in your immediate family that need divine guidance or any number of conundrums that need your help and attention. You care. You give. So, when you take a moment to step aside and think of Kyrie or when you include in her in your spiritual practices, you are not only a caregiver in your own circle of influence, but you become a caregiver for humankind. And even if it weren't Kyrie, I know that you would be doing the same for anyone vulnerable, anyone who needs your help. The whole What Would Jesus Do? You're doing it. Thank you, thank you, thank you.

I'll post today's progress as it arrives.

9:00 a.m. Tomorrow

Kyrie's MRI is schedule for 9:00 a.m. tomorrow.

She still hasn't opened her eyes yet today. Doctors say that with severe, intense seizures, sometimes it takes children days or even weeks to come out of it completely. Or ... Kyrie may have had a stroke. Earlier this morning she stopped breathing for 10-15 seconds which could indicate a stroke. She had an EEG today, too. Jordan and Lacie do not have the results of that yet. The MRI tomorrow will check for signs of a stroke, plus look at her spine and brain tumors.

Even with all of that, this afternoon has been a bit better for Kyrie: no seizures, and Kyrie felt around for That and put it to her face. Soft mumbling for "mamma" and "dadda."

Please keep the prayers a'comin'.

Still in PICU

Kyrie's surgery went without complication yesterday. Such a relief. The end of her cerebral drainage tube was clogged (with proteins? scar tissue?), so the surgeon cut off the end, fitted the tube with a new tip and thread the tube back through Kyrie's body. She is not on a ventilator but has an oxygen mask close by to keep her O2 level up, which has dropped every now and then. Technicians took a chest X-ray, and everything looked fine.

She still hasn't woken from yesterday's procedure. A few small, mild seizures yesterday. A little mumbling "mamma" and "dadda" and reaching for the hoses around her chest, but she hasn't fully snapped out of it yet. And that's okay for now. Rest heals.

There's talk of doing that ever-elusive MRI tomorrow. Depends on how today goes. After she comes out of PICU, she'll likely still be in the hospital a few days for monitoring.

Thank you for continuing to be with Kyrie, Lacie & Jordan through this, especially during the last 48 hours.

UPDATE

Kyrie returned to the hospital yesterday.

After more than a week of vomiting, restlessness and weakness, Kyrie began having seizures yesterday. Jordan and Lacie rushed back to the hospital Sunday afternoon, thinking she was having a reaction to her new anti-nausea meds. After a quick CT scan (They thought to do a MRI last night, but something about on-call staffing problems ...), they discovered that her fluid drainage line was clogged and as a result she had been building fluid for over a week.

They were going to prep her for surgery last night, but her seizures became much worse. Jordan said that he and Lacie were told that they got there in the nick of time. Kyrie's heart rate reached 200+ and she was running a 103 degree temperature. In an effort to remove fluid and pressure, a doctor punctured her tube. Her neurosurgeon arrived and drained off even more fluid for a grand total of 75 mL. They tested the fluid and there is some infection, perhaps from the abdomen area. She continued having seizures until early this morning.

She is being prepped for a 9:00 a.m. surgery to either replace the drainage tube or to insert an external drainage tube. We're not sure which. Either way, Kyrie will be on a ventilator when she wakes up.

And here's the salt in the wound: Had she completed her MRI as first scheduled last Wednesday, they would have found the fluid and avoided this current peril.

We don't know if they will do the MRI today or not. Probably not with all the other things happening.

More news as it comes in.