Thank you Dr. Banck

Dad, Mom, Tim, Arya and I left for Rochester on Sunday morning nervous and anxious, yet excited. Since our last visit where we received excellent news after just two chemo rounds, I have completed five more rounds totaling seven.  My first orders of business early Monday morning were fasting blood work and abdomen/pelvic MRI.  We waited around until 2:45 to meet with my doctor.

Dr. Banck is very pleasant German woman with the thick German accent to prove it.  My family and I, including my sweet pea, were waiting anxiously for the good German doctor to arrive to let me know the results of my MRI.  She was thrilled to give her report and somewhat shocked as well.

The lesions in the liver have shrunk approximately 50% since my last MRI at Mayo in September. Some of the small lesions in fact have disappeared.  The malignant regrowth on my pancreas has shrunk by approximately 50% as well.  There are still two undefined lesions on my spine that are likely cancer.  They are still the same size, but they have not grown and they are less dense than previously seen.

Dr. Banck then looked at me and asked "what would you like to do?"  I had been wanting to give her my input on our "plan" so I was happy that she had asked.  I asked to do 3 more months of chemo seeing as it has shown so effective with a surgical consult at the next 3 month appointment.  She said that is what she was thinking as well.  At that time, my doctor along with the surgical team will have to define the nature of the spinal lesions.  They most likely cannot be removed surgically without significant risk.  Radiation on those lesions might be needed, but we will not know until they are further tested.  She strongly believes surgery will be an option for my liver and pancreas, but it will depend on my spine.  Overall, she was very excited about the progress I have been making on these medications. She showed us the new MRI images and the pictures don't lie.

Dad, Mom, Tim and I left the appointment feeling like another huge weight had been lifted.  We had to celebrate our victory with the other miracle in our family, the Tommeraus'.  We had a celebratory dinner with cousin Dewey and his amazing wife Peggy, who has been in Rochester since September recovering from a successful double lung transplant.  For all of you who know cousin Peggy, she looks amazing.

We returned home today to continue our normal daily routines.  Arya for the most part was a trooper on the car rides, with only one major meltdown the whole trip.  Thank you everyone for thinking about us this past week.  It was an encouraging appointment and a major victory in my fight.

God Bless-Jenny

2014, my 31st year...

As we enter into the new year, I also enter into my 31st year.  In the past I have not been huge "fan" of my birthday, but I've learned we have to cherish each year no matter what your age.  Each year is a gift.

I have seen many people do their year in review, triumphs, trials and tribulations.  So here is a quick recap of our year.

My 30th birthday, Tim and I went out to eat crab legs.  Oddly enough, that is exactly what we had last night at my Mom and Dad's to celebrate the occasion.  I received the best birthday gift last year, when on January 5th, I discovered we were expecting a baby.  After months of waiting, we were finally blessed.

The first several months of my pregnancy went fairly smoothly.  On week 18 in mid-April, we found out we were having a baby girl.  We were ecstatic; we had both been hoping for a girl.  We immediately painted her room and started prepping for our new roommate.

May 20th the start of my 23rd week of pregnancy, life changed forever.  This was the day that the lesions were first discovered.  The next several weeks were extremely hard and emotional.  Many life decisions, health decisions, and financial decisions had to be made.  We had several weeks of waiting for our sweetheart to be far enough along to minimize likelihood of problems.  In that time we decided to move north, so Tim set the paperwork in motion.  I had not returned to my career as a speech pathologist since being diagnosed in May.  I resigned from my position in July with full support from the employer and coworkers I loved.

Arya was welcomed into the world July 26th.  The same day, we were notified that Tim's transfer to Fargo ATC tower was approved.  Arya spent the next 3 weeks in the NICU.  She made huge strides while there and was released sooner than originally expected.  While she was there, we along with our family were busy prepping and packing our home so that it could go on the market.

Also during this time, we had significant issues with our insurance companies (which we are still dealing with today), and a perfect home came for sale in Fort Ransom.  Again with the help of family we were able to purchase our new place before selling our KC house.

On September 11th, we left our KC home for the last time.  We arrived in Fort Ransom on the 12th.  In the weeks that followed, we unexpectedly had to deal with the government furlough, a time where Tim was not allowed to work as well as the sickness of our beloved Bentley.

Bentley passed away in early October after being diagnosed with a severe GI infection secondary to lymphoma.  The vet said that he had to have been sick for quite sometime.  We miss him every day.  

Amongst all of this we were concerned with family health issues, including Tim having a blood clot.

We were blessed with support from others through multiple benefits to help relieve the financial burdens of our health and abrupt life changes.  

We officially sold our home in Kansas City on November 12th.  It was a huge relief to no longer carry that burden but sad and bittersweet to give up the home we loved, that we bought when we were first married.

My initial visits to Mayo went smoothly with good news received.  The initial rounds of oral chemo were shown to have shrunk the lesions.  Good reports have been received at all follow-ups in Fargo, normal blood work, liver function tests, side-effect management, etc.

We have celebrated multiple firsts with Arya including first Halloween, Thanksgiving and Christmas in our new community.  Tim's parents have been able to visit twice.  She is the light of our lives.

Tim and I have talked a lot about our year in review.  It has seemed unfair that the best year of our lives has also been the worst.  We have received so many blessings and reaffirmed our relationships with many friends and family.  We moved to a community that we love and had always intended to come back to; however, the circumstances were very trying.  We miss our friends dearly in KC, but we have excellent family and friends in ND.  My sisters aka my best friends are with me, and my Mom and Dad are here as our rocks.  I miss my job and coworkers, but being able to stay home with Arya truly is my calling, and I cherish every moment of staying with her being mommy.  Tim really likes his new job at the Fargo tower.  He is enjoying the experience of learning new procedures as well as watching the planes daily.  With each coming year you take the good with the bad.  You celebrate the good times and blessings daily, and take all the bad days in stride, having faith that good times will come again.

I used to complain about my birthday, but I have made a promise to myself to be thankful for each day I'm given, each year that passes, and all good times I have to look forward to.

Happy New Year everyone.  

The happiest of holidays

I'll start this blog entry with my most recent health update.  I have been going to see my managing oncologist at Roger Maris Cancer Center in Fargo, ND every 3 weeks since my last Mayo appointment.  At my most recent appointment (December 23), once again all my blood work is considered normal: no drop in white counts, normal liver function, no change in cancer indicating markers, etc.  I am currently on my seventh round of oral medications, and so far my symptoms are very manageable.  As I identified before, the biggest side effects have been hand/foot syndrome and fatigue.  I will be going to Mayo again for appointments January 6th.  As the appointment draws near, we become more anxious, but we are optimistic that we will have another good report.

Since I last wrote, Arya celebrated her first Thanksgiving and Christmas.  For Thanksgiving, Tim and I hosted our Isley (mom's sister's) family.  It was a lot of fun, and anyone who knows me well would know how much I like hosting.  It was our first official holiday hosted in our new home.

Tim and I had a "date" evening in Grand Forks, ND where we went to Tim's first Sioux (I will forever call it that) hockey game.  We had seats on the ice directly next to the UND box.  It was an awesome first game for him.  I'll never be able to top it.  We also got to meet up with friends of mine that I hadn't seen for years.  It was a great mini getaway that brought back great college memories at UND.

Being home in our small community, I have enjoyed the perks of a tight knit community during the holidays including school and church children's programs, community parties, etc.  We have certainly had a white holiday.  Yes, for all of you not from ND, it was very cold this year.  Negative 20 windchill is not the most desirable, but I am lucky to have a nice warm fireplace in our window room so I can enjoy the pretty snow covered scenery in the comfort of our home.

Arya's first Christmas was WONDERFUL.  It is true what they say "The only thing better than being a kid at Christmas is HAVING a kid at Christmas."  We were constantly reminded of our many blessings, but most of all for the angel that was given to us.  Tim's parents were able to spend the week in ND with us.  We had several family functions with Olsons and Ekvalls together.  Arya is sure one lucky girl with so many grandparents, aunts, uncles, cousins and family friends who love her in her life.

Like I said, we are always remembering and giving thanks for our many blessings.  We are still receiving donations and cards, which continues to be a humbling experience.  I know God has been good to us, and He will see us through this next hurdle.  Remember, all of you who continue to support us by following our story and keeping us in your thoughts and prayers are collectively one of the greatest gifts we could have.  As a favor, please take the time to think about the loved ones in your life and give thanks for every moment you have with them.

Wishing you all a happy holiday season with new joy in the New Year-----Jenny

Settling into our home...

The past few weeks have been a whirlwind once again.  I have been feeling really good; I will not let this slow me down.  I am now on round 5 of my chemo medications.  The biggest side effect I have had to endure is called "Hand-foot syndrome".  It is a result of Xeloda oral medication, causing significant dryness, cracking and peeling of the hands and feet, as well as sensitivity to hot and cold.  I have received my itinerary from Mayo clinic for my next appointment.  It is scheduled for January 6th. Ironically this date is the 2 year anniversary of my initial surgery, when I was considered "cancer free." I will have repeat blood work, MRI, and follow-up with the specialist.

We also had a health scare with Tim recently.  He had been having an ongoing pain behind his knee. He was concerned for a blood clot, so luckily he went in to see a doctor.  It was confirmed that he had a clot in an axillary vein.  He has been taking blood thinners, and so far, he is doing great.

Halloween was a special day.  Not only was it Arya's first Halloween (she was the most adorable baby chick), we also took possession of our new home in Fort Ransom.  Since then, we have been working our tails off unpacking and settling in.  Anyone who knows me well, would know that my home is my hobby, and I will not stop working on it until it is truly a home.  As promised, Tim painted Arya's room the very same color as our nursery in KC.  I have all her stuff hung on the walls and organized, and it is beautiful.

We have had many visitors from Illinois recently as well.  Tim's parents as well as his aunt and cousin arrived November 4th.  Also a friend of Tim's from high school came for a few days.  We all had a blast at the Sportsman's banquet in Fort, we've introduced Tim's family to our family and friends in our new community, and we have worked a lot in our house.  Arya has had a lot of Grandma and Grandpa Ekvall time.

November 12th, we officially no longer owned our home in Kansas City.  It was bittersweet, but we are relieved to have the house selling process behind us.

Today was a VERY special day.  Today we baptized our angel into God's family and Tim joined my hometown church.  She did amazing. She didn't cry; she didn't even wake up when the water was poured on her head.  We had a great dinner at our home, our first family dinner in our new place.  We couldn't be more grateful than to have such a supportive family and the support of our congregation.  It truly was a celebration.

Although the benefits have been over for some time now, we have still been receiving cards and donations from people all over, many complete strangers who have been touched by our story.  We are always grateful and humbled every time we receive such generous gifts.

I want everyone to know that I am truly doing really well.  I have very high spirits.  I truly believe I am getting better.  Tim and I make a point to live each day as normally as possible.  Arya is the center of our world.  We are settling into our more "country" lifestyle.  We are honestly, truly happy.

With Love Always-Jenny

Houses, Benefits and Baby Showers...

It has been an eventful week once again.  I have been on my "off" week from my chemo medications, so I have been feeling great.  We are working on developing more of a routine, so I have been doing normal activities like cleaning, organizing, grocery shopping...you know...the fun stuff.  I am blessed everyday that I am able to stay home with Arya and be "mom".  It's my dream job.

Tim is now back to work from the government furlough.  He is really enjoying training at the tower. He is truly one of those people who always likes to learn new things, so he is excited about this new experience.

Arya is continuing to amaze us.  Our "preemie" is now 12 weeks 3 days old and weighs well over 14 pounds!  She is visually tracking more accurately, intentionally smiling and just this weekend she started grasping toys and putting them to her mouth.

Since I last wrote, there have been two more benefits to raise money for our cause.  Monday, October 14th my cousins in San Diego, Jaime and Jeanna Kylstad, held a fundraiser at Ponce's Mexican Restaurant where they work.  The owner graciously donated 15% of all sales that evening to us.  On top of that, multiple cash donations were given.  The entire San Diego Kylstad-Coulon crew was on board for support.  They even had a 5k beach walk in solidarity with family who participated in the Fort Ransom 5k on October 5th.  I am so lucky to have such an amazing large family who supports in all ways they can.  Thank you to Ponce's Mexican Restaurant in San Diego, those who were able to attend the event, as well as my awesome family.  Love you guys.

Saturday, October 19th, another HUGE benefit was held in Glasford, Illinois, Tim's hometown, by our family and friends there.  There was a raffle with multiple items donated by local businesses, a 50/50 raffle, silent auction, children's events, a dinner, etc.  Tim's parents, aunts, uncles, cousins and numerous friends all pitched in to help.  The night was a huge success, and once again, we are grateful and left feeling extremely humbled by the outpouring of support from Tim's hometown community. The generosity of many we know and even complete strangers is amazing.  We really wish we could have been there because it sounded like a lot of fun.  Tim was able to talk to many people at the event on the phone.  He spent over 2 hours talking, and he was so glad he was able to catch up with old friends and family, as well as thank many involved in the event.  We would like to give special thanks to the committee of family and friends for all your hard work, Whitetails Firepit and Grill for hosting the event, all individuals and businesses who donated either time, money or items, and lastly to all of those who were there making our night a success.

Donations continue to arrive in Fort Ransom as well.  With the help of everyone, we have been able to secure medical financial stability for the many years of treatment to come.  We could not be more grateful.

Yesterday, many friends of ours at our church in Fort Ransom hosted a baby shower for Arya following the service.  Little Miss received a ton of great gifts.  She now has enough clothes for 3 wardrobe changes a day, and enough pink for 5 little girls.  It was great to once again feel the love and support of our tiny community.  Thanks, ladies, for hosting.  We had a great time.

In other news...we sold our house in Kansas City!  We finalized an agreement last night, and we will be closing on the deal November 12th.  We are so excited to have that burden relieved as we start the new chapter in our lives.  We close on our house in Fort Ransom October 31st.  We are ready to have a permanent home again with all the comforts of a true home.

It has been nearly two weeks since we lost Bentley.  We think about him everyday and miss him terribly.  Thank you to all of you for your kind words for our loss.  He was so special.

As always, I will continue to keep everyone updated on our newest news.  We are excited for life to become a little "boring" so hopefully I won't have a whole lot to say in future posts.
Love and God Bless-Jenny

LIfe's ups and downs...

Once again, a lot has happened since my last post...

The benefit in Fort Ransom was held October 6th.  Because of very rainy weather, the event was held at our friends Larry and Shirley Kenyon's shop.  It is a good thing it was moved.  We needed the space.  Between the vast number of donated auction items and number of people, we had the building packed.  There were four long rows of silent auction items, multiple (about 9) raffle drawings, meat raffles, free will donation dinner, and live auction. Many people in the community commented on how they had never seen a benefit that large.  Tim and I as well as our family are overwhelmed by the support, generosity and general heartfelt concern from our community, family and friends.  Things like this bring people together, and you can see how truly good people are, and we couldn't be more grateful.   I was able to visit with many people I hadn't seen in years, and Tim was able to meet many people in the community.  I will be putting out a formal thank you in the paper, but I would like to thank the Kenyons, Thor's Bar, the LARGE committee of family and friends who made all of this happen, all those who donated items, all those who donated money, Titan for use of tables and chairs, Joe and Deb Billing crew for food, and all those I might be forgetting (I am sorry I am so scatter brained sometimes).

Friday October 11th, I met my oncologist at Roger Maris Cancer Center for the first time.  I really like him.  He is very soft spoken and gentle, both good qualities for someone in his line of work.  He has worked with my Mayo oncologist before and is 100% on board with Mayo's recommendations and plan of care.

Many of you have been asking about our Bentley, so here it goes.  Bentley's health had continued to decline so Tim brought him in to an animal hospital for further evaluation.  By the time he got there, Bentley was nearly in shock and bleeding internally.  He was told Bentley had lymphoma and has had it for quite some time.  He had developed a severe GI infection which resulted in the bleeding.  There truly was nothing that could be done.  October 9th, Bentley was put to rest.  Tim and I are truly heartbroken.

Why do people cry when Old Yellar died?  Why is it impossible to watch the end of "Marley and Me"?  Because it is sad.  We get attached to dogs, the most loyal of friends, who are such a part of our family as a whole.  Anyone who knows Tim and I, knows how much we loved Bentley.  He was such a sweet, gentle boy with the emotions and facial expressions of a boxer.  It's hard to look around the room without seeing him there.  It's hard to lay down at night without him right next to us.

So rest in peace our buppy, Mr. Puppy, puppy-pants, Mr. Bentley.  We love you and miss you so much.  March 17, 2006-October 9, 2013.

Mayo or Bust.

A lot has happened since my last post.  I am currently sitting in a hotel room in Rochester, MN with Tim and Arya.  Mom and Aunt Sherry are in the next room.  We are all relaxing after an eventful day at  Mayo Clinic.  Let me get you up to date from where we left off...

Arya had her follow-up pediatrician appointment on September 20th.  She weighed in at a whopping 10 pounds, 9 ounces at just 8 weeks old!  I contest that she was wearing her wet diaper when they took that measurement.  She had her first round of shots.  She did fairly well, but of course, Mom and Dad had a rough time with it.  Overall, she is thriving!  She's becoming more alert and vocal, and she's visually tracking so much better.  

Many of you may know our beloved boxer Bentley.  He's seven and a half years old and a total slobbery sweetheart.  Unfortunately with all the changes occurring in our lives the past several weeks, he had been acting somewhat "off".  He has always been sensitive to changes in his environment but never to this degree.  After multiple times becoming physically ill, Tim took him to the vet.  Sonogram shows a severe inflammation of portions of his GI tract.  He's currently on steroids to see if the inflammation reduces, but we have been told to prepare for a more severe diagnosis.  The meds have helped him regain some of his spunk, but boxers are prone to cancer, so we are on a "watch and wait" pattern with him.

Monday, September 23, Tim, Mom, Aunt Sherry, Arya and I made our first trip to Rochester's Mayo Clinic.  My first appointment was the morning of the 24th.  I saw a gastroenterologist who specializes in pancreatic disease.  We didn't get many answers from this appointment, but tests were ordered along with a oncologist consult for the following week.  I had blood work and an MRI then we were sent home.

Fort Ransom was abuzz all weekend with the annual SVACA festival.  It felt great to be home and a part of this annual event.  My sisters, cousin and friends had a stand to support the benefit in Fort next weekend.  All their hard work paid off, and again we couldn't be more grateful.  

We returned to Rochester yesterday.  I had some tests this morning and the much anticipated oncologist appointment in the afternoon.  We received EXCELLENT news.  When comparing my most recent MRI scan with the scan completed in May, the lesions have significantly shrunk in several areas.  Tim, Mom and I were able to see the images, and it was astounding!  In other words, the 2 rounds of chemo I have received have worked tremendously.  I was told that we will continue this therapy as long as needed.  Some patients take this chemo combination for years.  We may be able to surgically remove a portion if the lesions shrink enough.  The doctor said that this combination of drugs has become the standard of care and that there has been great results.  I will resume treatment through an oncologist in Fargo, and we will return to Mayo in three months for follow-up scans.  This was obviously a very emotional appointment.  I know that everyone's prayers have been paying off.  I have one more appointment tomorrow, and we should be able to come home after that.

Meanwhile, benefits in Fort Ransom, Illinois, and San Diego are planned by our friends and family.  We are eternally grateful and humbled by the generosity of family, friends and complete strangers in our time of need.  We look forward to seeing many of you at the benefit in Fort this weekend, and our hearts will be with you in Illinois and California.  Thank you and God bless.