We were very excited to meet a wonderful group from Walgreens of Youngstown, Ohio recently.  They traveled to Pittsburgh to participate in a Walk-a-thon for the Ronald McDonald House.  They heard about Katelyn, were touched by her story and came to walk in her honor.  And… as if that wasn’t enough, they came bearing gifts!  We were truly blessed to make such great new friends and we appreciate their kind hearts, encouraging words and prayers for Katelyn and Zoe.

A Little Surprise

   We got a little surprise today.  Katelyn and I were over at the hospital so that she could run around and play in the atrium on the 6th floor.  It's a large, open room with a very high ceiling.  We spend time over there when we need to get out of our room for a while.  Katelyn always hopes that other children will show up while we're there.  She gets pretty lonely without her brother and sisters.
   A nurse started playing with her today and then invited her into Austin's Playroom.  In the 3 months we've been here Katelyn has never been able to go in because it's for inpatients.  Many things are off limits to outpatients but Katelyn has come to accept it.  When the nurse invited her in, Katelyn said that she isn't allowed because we live at the Ronald McDonald House and don't stay in a hospital room.  The nurse left to go check on things and when she came back she said that Katelyn was more than welcome to join the fun in the playroom!  She got to play on the computer, paint a picture, socialize with other kids, play on the wii and before we left she was given a teddy bear.  What a nice, unexpected surprise!

Plan B

   We were so blessed to be able to spend a week as a family in Pittsburgh!  We did lots of sight seeing and had a wonderful time exploring.  Dropping Jeff, Shannon, Caleb and Zoe off at the airport was very hard and we really miss them.
   We've decided it's time to start working on a 'Plan B'.  We've been approved by the doctors to go home IF we can find a jet that can get us from Western Colorado to Pittsburgh within a 6 hour time limit... that's 1,730 miles.  So now the search is on for a corporation that would be willing to help us out when the time comes.  We can't take a commercial flight because if the call was to come at 2am we wouldn't be able to book a flight and make it to the hospital by 8am.  Please join us as we pray for God's will in this situation.
   Katelyn and I have been here for 78 days.  Yesterday we moved from our apartment to the one across the hall.  Our old view was overlooking a massive graveyard and it was getting a little depressing.  Now we have a wonderful view of the city!  The view wasn't the only plus... we now get the afternoon sun which is good for Katelyn's Crigler-Najjar.

Our old view

Our new view

Thank you for your prayers and encouragement.  It really means a lot to us!

Tired

Katelyn and I are getting pretty tired of waiting.  We've been here for almost 9 weeks.  Still no liver cell transplant.  But we were able to get connected with the right people at the hospital and were given tickets for Jeff, Shannon, Caleb and Zoe to fly out here for Spring Break!  They'll be here in 3 days and will get to stay for a little over a week!  We are so excited.  This couldn't have come at a better time.  We are all starting to get pretty weary.
We are so thankful for some new local friends.  They have blessed us with trips to run errands and taken us on some fun trips around town to get us out of our apartment.  As always we are still praying for some good news from the hospital to come soon.

Local News



One of the camera men

 

Katelyn and I were on the news here in Pittsburgh with Matt Cooke, who plays hockey for the Pittsburgh Penguins.  Since we've been living here for almost 2 months, we were asked to attend the news event where Matt was named the new spokesperson for this Ronald McDonald House.  We were honored to be a part of it and to be able to tell a little bit of our story!
Here's the link to the video...
http://www.post-gazette.com/video/?v=1518779712001



Katelyn, Matt Cooke and me

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