Jennifer Ireland

The treatment went well...

I'll be brief tonight.  We're sitting in Dallas' Love Field Airport and all the flights are delayed.  I think the snow in the Rockies and the storms here in Texas have everything backed up.  We'll hopefully be home by 1 AM. 

Jen's treatment took about 5 hours today.  It begain with the trial drug, Avastin was next, and then an hour and a half of observation.  We were done much earlier than expected due to the nurse coordinator personally driving to the facility in Fort Worth to pick up the drugs and have them to the hospital early this morning.  Following her treatment, we killed a couple of hours at the movie theater and watched Night at the Museum.  The movie was entertaining - good for kids.  We are about 2 hours into 5 hours of hanging out at the airport.  No earlier flights had available seats.  Like yesterday, Jen is dealing with some major swelling due to the buildup of fluid in her body. 

Tomorrow she'll relax.

Back in Texas...

As I mentioned a couple of days ago, we were ready to accept the clinical trial available to Jen in Dallas.  M.D. Anderson confirmed that with her ascites (fluid in the abdomen) she would not be eligible for any trials in Houston.  It would have been fantastic to find an opening in a trial at Barnes-Jewish Hospital in St. Louis, but they also have nothing available until at least late January.  Sooo...early in the day on Wednesday, we called the Sammons Cancer Center in Dallas to accept the slot that Jen had already signed up for.  Initially the nurse coordinator for the Phase 1 program said a lab/screening appointment wouldn't be available until next week and she wouldn't be able to start treatment until Jan. 8th or 9th.  To me this was not acceptable after the urgency they put on us to make a decision.  After a long conversation (one where I did not hold back my frustrations) things were not looking good.  Not even an hour later, we received a call back.  If we could get Jen down there on Thursday for screening labs, they could administer the first treatment on Friday.

Finding a flight with available seats during this holiday season is no easy task, finding one that leaves in the next 12 hours is very difficult, and finding one that is economical is impossible.  After scouring the internet we found a flight and at 3:15 this morning our alarm clock began our very long day.  Jen had a rough start at the airport when the TSA screener did a pat down on her and said "ohhh...are you having a baby?"  When Jen replied "no...I have a tumor" the conversation ended real fast.  Both Jen and the TSA rep walked away from that conversation a little upset. 

We made it to Baylor by noon and Jen's labs were complete within 2 hours.  We would have been done within an hour and a half but she just couldn't muster up enough urine to fill the cup the first time.  We left the hospital and headed to a Lenscrafters to get Jen a new pair of glasses.  Her contacts are becoming pretty unbearable with all of the traveling we have done and will now have to do.  She deserves a new, stylish pair of specs.  We had a nice dinner at P.F. Changs and headed to the hotel.  This evening she is lying in bed with her legs elevated while she relaxes.  She has been upright since 3:15 this morning and her legs and feet are very, very swollen.  Tomorrow morning we'll head to the hospital for Jen's 5 hour treatment.  We'll catch a 9:00 PM flight back to KC tomorrow night.

I also want to mention that my good friend Shawn Amerine's mother passed away last night.  She was diagnosed with cancer in October and fought courageously for several months.  Unfortunately, the cancer was silently taking its toll well before the diagnosis.  Our thoughts and prayers are with Shawn and his father Mike as they put Donna's seemingly sudden death into perspective.  The Amerine family has been one of which I have felt a part of for 20 years.  Once again, cancer has hit close to home.

Winding down from a great Christmas...

We hope everyone had a great Christmas.  Like most people, today we tried to wind down from too much food and a lot of presents.  It really was a great Christmas day. 

The next several days Alexis is helping take care of the girls while Jana is on a family vacation.  The girls take to Alexis as if she never left town.  Jen had a second paracentesis today.  North Kansas City Hospital isn't a teaching hospital like Loyola in Chicago so the procedure took no longer than 30 minutes.  They pulled another 2 1/2 liters of fluid off her abdomen.  Tonight she feels a little more comfortable.  We'll attempt to make another appointment on Saturday so that she can "deflate" just before New Years Eve.  We hope to spend that evening with about a dozen friends at the Plaza.  I'm sure it will be a little more fun for Jen without a swollen belly.

Tomorrow we'll make the call to Dallas and accept the Phase 1 treatment slot that Jen signed up for last week.  This may entail a trip to Dallas late in the week.  Until then, we'll continue to clean up the house and make room for a HUGE amount of new toys!

I'd also like to thank all those that have sent e-mails and messages through the blog in response to the story about Jen in the KC Star.  The response has been overwhelming.  Whether it be encouragement, empathy, or suggestions of treatment and alternative therapies, we have done our best to reply to everyone.

Merry Christmas...

We've put the girls to bed, spread the presents around the tree, and "Santa" is eating his cookies (while typing).  We hope that everyone has a wonderful Christmas.  We will certainly cherish the time spent with family and friends.

<-- Family pic from Christmas Eve with Jan and Bob!

Kansas City Star article...

Please check out the great piece about Jen in the Kansas City Star by Barbara Shelly.

Click here to go to the Kansas City Star website.

Heading home, sweet home...

It has been a long week.  This evening we are waiting on a delayed flight at Chicago's Midway Airport.  It will be nice to be sleeping in our own bed at least through the Christmas holiday!

We spent the day today at Loyola University Medical Center.  The Bernardin Cancer Center looks to be a very well run facility that many Chicago area patients depend upon.  Jen's registration process was very quick and most of the staff and doctors were already familiar with Jen and her history.  They really were fantastic.  It made things feel very comfortable and she was treated as a VIP.  Due to her increasing discomfort and difficulties controlling it, their first recommendation was to have the fluid drained off of her abdomen.  The "paracentesis" was immediately set up and within an hour she was in radiology having it performed with the aid of an ultrasound machine.  I could not believe my eyes when I walked in and saw 2 1/2 liters of what looked like Mountain Dew.  It definitely reduced the size of her belly and decreased the frontal pain.  Unfortunately, with the fluid gone, her lower back is much more uncomfortable.  This is more than likely due to tumor pressing against nerves and the back wall of her abdomen.

Following the procedure we were driven by hospital security back to the Cancer Center -- I forgot to mention we had a security escort around the very large facility!  A medical oncologist met with us and discussed things in depth.  Dr. Hantel was very nice and very honest.  His opinions echo those of Jen's other doctors.  Her best option at this point is to begin a Phase 1 trial drug due to her resistance to the available drugs on the market.  He wants her to be realistic about things and make sure that we choose a clinic that will be close to home where she is comfortable and continues to be close to family and supporters.  Our nationwide search may bring about too many options too far away.  His best recommendation of a hospital nearby is Washington University's hospital in St. Louis.  Ironically, Jen and I initiated contact with their cancer center (Barnes - Jewish) a couple of days ago.  Dr. Hantel even recommended the same doctor whose number we already had. 

Tuesday we had asked Dr. Pluenneke if he could give Barnes-Jewish Hospital a call and speak with the G.I. oncologist.  Hopefully he had some luck.  Jen has an appointment with Dr. P tomorrow at the KC Cancer Center.  Her priorities in that appointment are to check on his progress with "Barnes", discuss pain management options, and have him set up a plan for future occasions when she'll need another paracentesis. 

We both would like to thank Annie Braun and her friend Katie Battern for setting up the appointment here in Chicago.  Like many of the cancer nurses we have come across in the past year, you can tell that Katie has a huge heart and would do anything for anyone.  In the face of this horrible disease, people like Katie give comfort and even hope to those fighting cancer.  This trip was not a waste - just a fresh opinion on her current situation, an opportunity to meet some really special people, and reaffirmation that Jen will be best served closer to home where she can feed off of the love and support of friends and family.  If anything, she's leaving Chicago 10 pounds lighter with some good pain meds!

In the windy city...

Tonight I'm writing from a hotel near downtown Chicago.  Following our Dallas visit, Jen and I arrived back in KC Tuesday afternoon.  We weren't home long, when an e-mail popped up inviting Jen to Chicago for an appointment at the Cardinal Bernardin Cancer Center at Loyola University Medical Center.  It ends up that an old friend of Jen's, Annie Braun, has a friend that is the nurse coordinator at the cancer center.  Katie has followed the blog and quickly offered to help when she found out we were looking for some other treatment options.  Over the course of the past week Katie has been gathering info on Jen and was able to expedite a consultation that will take place tomorrow afternoon.  A team of doctors will take a look at Jen and her records, put their heads together, and recommend a new course of treatment for her.

Back at home, the girls are in good hands with Jana and Jan.  It continues to be important to us to keep the girls in their usual routines and make sure things seem as "normal" as possible. 

Behind me in this small hotel room, Jen is lying in bed trying to keep her mind off of the pain in her abdomen.  Her belly continues to swell and she feels (and looks) about 5 months pregnant.  There will come a point in the very near future where the accumulated fluid will need to be drained.  She is hoping sooner than later.

A great weekend in Cape G...

I hope everyone had a good weekend.  Like us, I'm sure many were celebrating Christmas early with family from out of town.  It seems these days, the holidays need to be spread out a couple of weeks to adequately get the quality time with everyone!

We took off for Cape Girardeau early Friday.  The girls handled the drive well with a little help from the DVD player in the SUV.  Upon arrival, we needed to address Jen's pain.  The upright position in the car and the accumulating fluid in her abdomen made things steadily more uncomfortable.  Luckily Dr. Foster and Dr. Pluenneke gave her some recommendations by phone.  Dr. P called in some higher dosage pain pills that have seemed to help.  Our stay with Dennis and Tina was even more fun than usual thanks to a huge see-saw they bought for the girls.  The girls spent hours on it and are excited for it to eventually end up in our back yard.  Saturday morning we opened presents and Saturday evening we enjoyed the company of the Bles family at Jen's Grandpa's.  The girls loved the attention -- and the gifts!  Thanks to the Bles family for everything.  Sunday morning we had a great breakfast with the Kohlfeld family (Jan's side of the family).  Jen's grandma and grandpa hosted a wonderful family gathering.  The whole weekend was a great way to escape the rigors of typical life and cancer-related stuff.  More importantly it helped bring into perspective the importance and power of being with family and friends.  It was a special weekend for Jen.

Like most road trips, the drive home Sunday afternoon seemed just a little longer.  We were able to caravan with Jordan and allow Jen to ride in a car without the girls. They can be a little "high maintenance" in the car and Jen needed to rest.  Thanks to Jason and Jan who traded off as my passenger, DVD operator, and snack provider to the girls.  Once at home, we spent a couple of hours unpacking and repacking bags and getting a few things done before heading to the airport.  We were checked in to our Dallas hotel right around midnight.

Today we went to Jen's appointment at the Sammons Cancer Center at Baylor University Hospital.  Following all the registration steps we met with Dr. Carlos Bacerra.  Based on his quick review of Jen's records, scans, and conversation with Dr. Foster, Dr. Bacerra offered a Phase 1 trial drug.  Fortunately, there happened to be an opening for Jen to sign the acceptance into the trial today.  There was a good possibility that this "slot" would not be available tomorrow.  Needless to say, she signed the papers but we still have several weeks to weigh any other options.  The basics about this drug are as follows:

the drug is currently designated as CGC-11047...the pharmaceutical company is Cellgate Inc...The manufacturer is Baxter Pharmaceuticals Solutions, LLC...it is believed to stop the production of new DNA in cancer cells...it will be administered with Avastin (a drug that has proven some effectiveness with Jen's disease)...there will be about 60 participants that take part in this study while in the Phase 1 status

Beyond that, we have no idea.  I guess we were hoping to have more facts and data regarding its effectiveness in patients thus far.  Unfortunately, when it comes to clinical trial drugs, facts are hard to come by.  We didn't walk out of the visit disappointed, maybe just a little more scared of the decision we will eventually have to make.   This evening Jen and I talked about the role of faith and God in this decision.  We will probably be presented several options in the coming weeks and at some point God will make the right choice glaringly obvious.  Just like in our initial meeting with Dr. Foster and Dr. Loggie at Creigton, we will walk into a consultation and it will just feel right. 

Tomorrow we'll catch a late morning flight back to KC.  We'll hope that some of the other potential consultations will become solid appointments in the next couple of days.  What was accomplished here in Dallas will be set aside as a strong option in early January.

Was it really 60 degrees today?...

What a great December day.  Our deck is being reconstructed right now.  We purchased the house knowing it would have to be addressed eventually. It was pretty dangerous for a couple of little girls to be running around on and adults to be leaning on the rails.  With the great weather, our hired help might even finish it this week.  That would be much better than it being an ongoing winter project.

Last night we were proud parents as we watched Emma perform at her first Christmas program.  She is in the Little Angels program at the First Baptist Church in Blue Springs.  She had a speaking line and the entire group of "Littlest Angels" sang several songs and recited a great poem.  We got plenty of video footage of Emma and her cousin Lilly.  I think we spent the majority of the night laughing because such a large group of 3-5 year olds is about as entertaining as anything I've ever seen.

Today Jen has been feeling a little sick.  Her abdominal pain requires a good amount of pain medication and the side effects of those medications are an upset stomach and fatigue.  She's in relaxing on the couch right now watching TV.  Tomorrow we'll get out and about when we take the girls to see Santa.  Maybe some fresh air and the Christmas atmosphere will take her mind off of things.  We did make a little more progress on the search for a cancer center that might be able to offer a new drug alternative.  Monday we'll be heading to Dallas for a consultation at the Sammons Cancer Center.  That could possibly be one of several trips next week if things continue to fall into place.

We'd like to thank Ginger and Connie for stopping by to draw a little blood for Jen.  We'll be sending back a couple of vials to Creighton University where they'll be doing a genetic work-up on Jen's blood to see if the cancer is hereditary.  This could prove helpful for her family (brothers especially) and future generations.

Here are a couple of smiles to start your Thursday with. 

A productive Monday...

Thanks to everyone that e-mailed us today with contacts at various cancer centers throughout the country.  In addition to Jen's own doctors formulating a professional opinion on where to go from here, I was able to make contact or at least begin the process of contacting various doctors elsewhere.  All of the phone calls and e-mails I sent out were based upon "leads" from many of you out there.  Part of me feels a little guilty insinuating that we are looking for other opinions when the truth is we trust the advice and direction of both Dr. Pluenneke and Dr. Foster.  However, they have other patients and jam-packed work days and cannot turn over every stone.  Jen is our only concern and we can put in the effort to leave no stone unturned.  Just maybe we'll find a doctor that has successful experience with a nearly identical situation or a cancer center with a drug that has shown promise in patients like Jen.

Our fist phone call this morning was from Dr. Pluenneke who, as promised, made several phone calls to top cancer centers.  As a result, the ball is now rolling for an appointment at M.D. Anderson at their clinical trial office.  The G.I. specialist at M.D. Anderson agreed with the course of treatment thus far and his best recommendation was to try to match up with a Phase I, II, or III trial drug.  We'll see what tomorrow brings.

Today was a typical Monday, and Jen was buzzing around doing her motherly thing...feeding the girls, doing laundry, wrapping presents, etc.  Of course Jana was here from noon to 5 helping out.  Tonight when we returned from running errands we discovered a bag full of presents on the front porch.  The attached letter read that the gifts were from one of Santa's elves, Jolly.  There were gifts for each of us and one for us all to share.  It was a great surprise and definitely made our day.