Butterfly Queen - By Katie Reider (click play to listen)
On June 27, 2008, just before leaving for vacation, Katie received word that the MRI she had revealed FURTHER SHRINKAGE of the tumor....in fact so much that the tumor appears to be 95-97% GONE.
While they thought they had progress with the major shrinkage of Katie's tumor, there have been some major complications. While on vacation in Bethany Beach, Delaware over the 4th of July Holiday, Katie had some bleeding from her mouth. Apparently the tumor shrunk so much, that it partly dislodged causing Katie to severely hemorrhage from a major artery in her brain.
After being taken to a local hospital to get the bleeding under control, Katie was sedated and put into a medically induced paralysis. She was then airlifted to a more-well equipped hospital in Wilmington Delaware where she underwent 3 hours of surgery to stop the potentially fatal bleeding all together. From this point Katie had to be transported her back to her doctors in New York City as soon as possible.
Here is a detailed account of information sent in from Katie’s family about Katie’s experience.
Sunday June 29th, 2008
Around 8am while hanging out at the house at Bethany Beach Katie began to suddenly bleed a little bit from her mouth. This had happened once before almost exactly 1 year to the date and when it happened a year ago it just stopped and didn't happen again, so no one seemed to worry about it.
When the bleeding stopped the first time that morning everyone thought..huh?...interesting...and went on with the day. So, Katie sat around for a while and decided to eat a big lunch. After lunch Katie started bleeding again...this time...the tumor came out…
While inspecting the tumor, she couldn't believe she was holding it. Katie decided that she just wanted to flush it - leaned over to flush it down the toilet and WAMO the bleeding started again and this time didn't stop.... it became so bad that she started to choke on her own blood.
Katie was taken to a local hospital where they intubated her (put a tube down her throat to breathe for her) and were able to stop the bleeding. Katie was immediately sedated and airlifted via helicopter to a bigger more well equipped hospital an hour and a half north to Wilmington, Delaware where they had to put her into medically induced paralysis and perform emergency surgery to stop the bleeding.
The hospital there believed that the bleeding was coming from a major artery in Katie's brain and were working to find the source of the bleeding and to stop it. If Katie were to start to bleed again it would be fatal.
At 10pm that night Katie was fully sedated in a medically induced paralysis and put on machines that were breathing for her. The surgery was schedule at 11PM and was to take approx 6-8 hours....and we wait….
Monday June 30th
Last nights procedure to stop the bleeding began at about 11PM and seems to have been successful, yet Katie remains totally sedated and in the forced paralysis. Concerns remain that the bleeding could start again should she move.
Doctors in Wilmington didn’t know if they were fully able to stop the source of the bleeding, but they did fix a number of blood vessels that seemed to be ruptured. The problem was that no doctor was willing to take the packing out of her mouth/head... for fear that she'll bleed again.
This evening, just as visiting hours were ending, doctors decided that a tracheotomy would be performed tomorrow while she's on stand by for the OR. This will help Katie breathe more comfortably and will be safer for her transport to NYC, which is also scheduled to happen tomorrow morning. Katie will be helicopter airlifted to New York City where her own team of doctors can attend to her.
Tuesday July 1st 2008
Today Katie is still heavily sedated and medically paralyzed. Doctors don't want her coughing or moving anything for fear that bleeding will start up again. HOWEVER with all of that said, despite all the drugs, Katie is fully aware of what's going on...she nodes when asked questions...she can tell you by raising her eyebrows what level of pain she's in if any, so while it's nice to know she's in there...and comfortable - we don’t know what she's thinking. Visiting hours in the ICU are from 11am – 8pm. She must be going mad just laying there...she cries sometimes...but for the most part she seems ok...
Right now we are hoping that we can transport her by air from Delaware to NYC first thing tomorrow morning, but it has been difficult to get the insurance company to approve her transport to New York. Katie is aware, she doesn't open her eyes...but she does nod...and respond with her eyebrows. They're currently putting in the tracheotomy...she's in the OR and hopefully should be finished any minute....
Wednesday July 2nd 2008
No problems putting in the trach yesterday, but Katie is still in Delaware as the hospital and/or the insurance company have been dragging their feet in approving her transport to New York. Today is Day 4 in the Wilmington hospital, tomorrow is the earliest she can go.
Katie is comfortable, but they are worried about infections from leaving the "packing" in that originally stopped the bleeding on Sunday. She’s in the ICU…she’s conscious and can communicate. Tonight Karen has to leave Delaware to meet Katie's dad Rob in New Jersey – where they will both meet Katie in New York tomorrow afternoon.
Thursday July 3rd, 2008
Today is FINALLY the day that Katie will be transported from Wilmington, Delaware, back to Beth Israel hospital in New York City.
It’s been difficult dealing with some of the staff in Wilmington at the hospital there. Only nurses - no doctor - have seen Katie in more than 24 hours and there was concerned that the packing put into Katie’s mouth needed to be checked for fear of infection. No one at Wilmington wanted to do that because an additional procedure might have to be performed if the bleeding were to start again. They were between a rock and a hard place. - it made things much more critical that Katie be transported back to New York as soon as possible.
Karen has been through the ringer – emotionally - and very diligent in not letting things slip through the cracks and finally got the authorizations completed, so that U.S. Air Ambulance could send their medical and flight crew to Wilmington to get Katie. Arrival time is expected to be 4PM. Katie will be admitted to the surgical ICU and then her doctors will be making decisions as to how to proceed at that time.
Friday July 4th, 2008
Katie arrived at Beth Israel hospital in New York City Thursday at about 8:10PM after traffic in the Washington, D.C. area held up the flight and medical crews.
Doctor David Culang took a look at Katie and wanted to get at least part of the gauze packing out of her mouth. She desperately wanted that junk out. It tasted horrible and was getting very nasty. He started to get a bit out but found that it all came out without a problem or any bleeding starting. That was a major happening for the evening.
Katie’s pain is being managed and she’s trying to get some sleep. Things are going well, she is doing ok and able to communicate. They hope to schedule a surgery sometime later in the week. Katie is indeed a trouper - we have all been amazed at Katie’s continued, “let’s get her done” attitude.
Wednesday July 9th, 2008
Since Friday - Katie is doing alright...not great but alright.
The results of the chemotherapy and steroids have caused a significant thinning of the tissue on the left side of her face. A hole in her cheek has opened up. That’s been difficult for Katie - it’s just not a pretty sight. She now has about a quarter sized hole in the left side of her cheek. The skin in her cheek has just worn so thin, that a few nerve endings are exposed - so that causes her some significant pain. She has also lost a significant amount of weight from not being fed for a while in Delaware, down to 86lbs....
SO the doctor is going to put off the next surgery until August 4th and then it will be a big one...
They are going to do a total clean out of any dead tumor that they can reach, so Katie doesn’t have another bleeding episode. This tumor that came out of Katie has eaten away at so much of the left side of her face that Katie no longer has half of her upper palate (roof of her mouth). She has nothing for her tounge to hit up against to speak clearly and a huge cavity on the inside of her head.
During surgery they'll replace the skin on her face with skin from her belly...and they will craft her a new upper palate to her mouth from muscle and tissue in her belly. It will be a 6 hour surgery and recovery is 10 days in the hospital, so she'll need to use these 2 weeks to bulk up and recover...
In the meantime, Katie expects to be released today and will come home, tracheotomy and all until the surgery, which Katie is facing with a great deal of courage. Friends and family have been at Katie’s side and we’re grateful for that.
There has been continued pain, but the physicians tasked with its management have been very helpful.
Sunday July 13th, 2008
It's 11:15PM Sunday, Eastern time and Katie has started to bleed again - like she did two Sundays ago. She's being transported to a local New Jersey hospital so they can stop the bleeding.
I'd ask that you pray for the bleeding to stop and that the physicians in the emergency room treat her well and effectively.
It's my hope that she'll be able to be transported to Beth Israel as soon as possible so that Katie's team can be working on her.
Monday July 14th,2008 - 12:50AM
Karen said that the doctors were able to stabilize her and are putting in gauze packing - again - to keep bleeding to a minimum. As soon as Dr. Urken can make arrangements for her admittance, Katie will be transported tonight to Beth Israel hospital back in New York City.
It took a while for the doctors to stabilize Katie and Karen was very concerned - as we all are.
The bleeding started after a cough - as soon as it started, Karen called 911 and Katie went right to the kitchen, grabbed a big cooking pot, and went to the bottom of the stairs to await the paramedics. She knew that it would be very difficult for them to work on her in their second floor apartment and move her on a stretcher down the steep flight of stairs. She remained conscious throughout the ordeal. Once again, Katie is a trouper.
We're trusting that God does, indeed, have a plan for her life!
Monday July 14th,2008 - 7:00AM
While in the ambulance en route to Beth Israel hospital in New York City this morning, shortly before 7:00am Katie's fight came to an end.
Katie had had a very tough week - when she wasn’t sleeping she was crying. She had become extremely weak, her weight had gone down to 86 pounds, and had the hole in her cheek that really scared her. Karen said that Katie at some point had said, “I’m done.”
Friends and family are rallying around Karen and the kids so for the short term they’ll be OK.
Services for Katie Reider will be held Saturday, July 26 at 11 a.m. at Crossroads Community Church, 3500 Madison Rd., Cincinnati, OH 45209. This is definitely open to the public. Please come celebrate Katie and pass the word on.
Katie Reider Says Goodbye here - http://www.500kin365.org/katiegoodbye.htm