Waiting

We are still in Pittsburgh waiting for liver cells.  Yesterday marked exactly 4 weeks.  The Ronald McDonald House has definetly become our home away from home.  We found out that the doctors have been receiving other liver cell offers but none of them have met their standards.  So we are waiting... and praying... and will continue to stay hopeful.  We know God has a plan for us and we are excited to see how it will all fall into place.
The emails, facebook messages and words of encouragement have been so great.  I can't even explain how much it means to us.  Thank you so much for your support and prayers.  I hope to be able to write again soon with the great news that the right liver cells have become available.

Details

I've had some people ask exactly what the liver cell transplant is all about.  I got some details from the doctor so I can share the steps with you...
When we got here a few weeks ago they did a CT Scan on Katelyn.  Then they spent days doing calculations to make sure that the upcoming radiation treatment is aimed in exactly the right place.  Once the right liver cells become available Katelyn will be admitted to the hospital.  They'll hook her up to an IV, take some blood and then we'll spend some time waiting for the procedure to start.  When the liver arives at the hospital the doctors will start working to harvest the cells.  They'll take Katelyn back to the room where she got the CT Scan.  They'll get her back in the exact same position as last time and prepare her liver for the cells by doing the radiation treatment.  This step is very important.  It will prep the liver so that it will accept the cells.  Right before the procedure starts the doctors will use the IV line to administer medicine to make her fall asleep.  They'll make a one inch incision above her belly button... that's where the major artery is that runs to the liver.  They'll give her 3 different injections of liver cells through that artery over the course of 24 hours... roughly 8 hours between injections.  Once the entire procedure is done she'll wake up and spend about a week in the hospital so that they can monitor her progress and work to get her medication at the right level.  Right now she's on phenobarbital, which will counter act the anti-rejection medication.  The doctors will slowly lower the phenobarbial while they raise the level of the anti-rejection medicine until they get everything just right.  Within a week or two the new liver cells should start to become active.  The plan is that she'll be able to spend less and less time under her light each day.  Then she'll be released to the Ronald McDonald House for about 2 more weeks until she is released to go home.
When Katelyn is done we'll go through the same process with her little sister, Zoe.

Not Good Enough

The liver arrived at the hospital around 9pm and by 10pm we got a call from the doctor.  He said that the cells weren't good enough and they decided not to transplant them.  The nurse had already put the IV in (after 2 tries) and Katelyn's first response was, "You mean they have to do the IV all over again next time?!"  Even though she wasn't happy about the IV she's doing well and is ready to get some sleep. We've been sent back to the Ronald McDonald House but are very hopeful that the right cells will come soon. 

The Call

We got the call around 3:00 today. The right cells have become available. We were at the Children's Museum so we got on the bus and headed back to the Ronald McDonald House. We packed some pajamas and Katelyn's toothbrush and headed to the hospital.
The liver should be here around 9 pm. Katelyn is scheduled for radiation around 3 am. After that they'll put her to sleep and begin the procedure. They'll do several cell injections throughout the day on Friday and Katelyn won't wake up until some time on Saturday. Things are really moving quickly and we really appreciate the kind words and prayer support.

Progress

The doctors spent several days doing calculations to prepare for the radiation treatment.  Yesterday they put Katelyn on the waiting list for liver cells.  We just found out that since then 2 offers for liver cells have already come in.  Neither one of them was just right so the doctor turned the cells down but we are excited that there has been progress in such a short period of time.  Thank you so much for your prayers!

The Evaluation

Katelyn and I arrived in Pittsburgh, Pennsylvania yesterday!  It was a long trip from Colorado but we are so happy to be here.  This morning Katelyn had an appointment with Radiation Oncology.  The first step was to put an IV in.  Katelyn loves to watch when she gets shots or gives blood so she was very excited about watching the nurse put the IV in.  The nurse told her what she was doing... step by step... almost as if Katelyn was a nurse in training.  Katelyn thought that was pretty cool but it was a little more info than I needed.  :)
Then they got her set up on the table for the CT Scan.  They put her on a blue foam pad that molds to her body.  She had to be perfectly still for about 45 minutes or so while they ran the scans.  She did really great.  As I stood back watching the whole thing I couldn't help but giggle as I pictured the doctors trying to get Zoe to be that still.  They'll have to put her to sleep for sure!
The doctors needed to mark a specific spot on Katelyn's skin.  A marker or pen would wash off so they asked for permission to tattoo a dot on her.  When she came out I said, "So is this your tatoo?  Oh wait... that's a freckle."  She had to point the dot out to me.  It's located toward the bottom of her right rib cage, above a specific part of her liver.
Now that the scans are done the doctors will spend the next few days doing calculations.  They have to plan exactly where they need to point the radiation.  This step is very important because the radiation will prep the liver to receive the liver cells.  The doctors are hoping that the calculations will be done by Monday so they can put her on the list to receive liver cells.  Waiting for the cells could take a few days, a few weeks, or a few months.  There's really no way of knowing, so for now we are just waiting.
We really appreciate your support and prayers.  Being here is a real blessing and an answer to prayer.  I'll continue to update as things progress.
Tammy

New Hope!

Our daughters, Katelyn (age 9) and Zoe (age 3), have Crigler-Najjar Syndrome.  They have to get as much sunlight as possible during the day and sleep under special blue medical lights at night in order to stay healthy.  The girls’ livers don’t produce enough of a specific enzyme to control the biliruben levels in their bodies.  Type I CNS patients produce no enzymes on their own.  Type II patients produce partial enzymes.  We recently found out that Katelyn and Zoe seem to be Type 1 1/2.

The only cure in the past was to have full liver transplants but we now have new hope.  Children’s Hospital of Pittsburgh called this summer (June 2011) to let us know that they would like to perform Liver Cell Transplants on our girls.  That means they’ll be getting an injection of liver cells to make up for their enzyme deficiency.  We are so excited about this possible cure and feel very blessed to have the opportunity to give our girls a 'bright future without bright lights'.  For more information about CNS you can visit www.KatelynsLight.com.

We will be traveling from Olathe, Colorado to Pittsburgh, PA soon to have the procedure done.  I’ll be using this blog to journal their progress along the way.