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.

Home at last...

It has been a long busy week, but we are finally back in Fort Ransom where we belong.  After a week of hard good-byes, packing, loading and cleaning, we are finally getting some down time to take it all in.

Last Sunday we had great visits with several friends who stopped by to wish us well on our journey.  We have met so many great people in Tim's seven/my six years in Kansas City.

Tuesday morning Arya had her follow-up appointment with the neonatologist.  As expected, our little angel has exceeded all expectations.  She no longer needs to wear the heart monitor, and she is growing well.  In fact, our "preemie" was now 9 pounds, 1 1/4  ounces in weight and 21 1/4 inches in length.  Knowing my due date isn't until Monday, September 16th, I am guessing I could have had a 10 pound kiddo!  One of our greatest blessings in all of this is that she is healthy and thriving.

Tuesday evening our ND moving crew arrived.  With the help of some of Tim's buddies, our first trailer was packed and ready to go that night.  Wednesday morning with the help of more friends, we were loaded up before 1pm.  Mom, Tim and I were on the road shortly after.  We stayed in Sioux City, IA Wednesday night and completed the trek Thursday.  We rolled into my parents driveway that afternoon.  Arya was a trooper both days in the car.  Our little angel slept nearly the whole time.

We had a special surprise upon arriving.  Tim's aunt and uncle from Illinois were waiting for us at my parents' house.  We were thrilled to show them around our new home.  Arya was busy getting aquainted with her ND family.  She has had lots of "holding" time.  Today, we unloaded our belongings into my parents' garage in anticipation of the big move to our new home.  We were able to go see the house today.  Tim and I LOVE it.  We are excited to start this new chapter of our lives, raising our daughter in the community we love.

I am feeling surprisingly really good.  Today was day 4 of my chemo dose regimen.  Currently, the medication makes me tired.  Now that we are home, I intend on taking it easy for the coming week.  Other than Arya's pediatrician appointment in Fargo next week, we don't have many other plans until Mayo Clinic on the 24th.

Planning for the benefits continue, and Tim and I couldn't be more grateful for the outpouring of support from everywhere.  It is so appreciated. 
As always-Thank you for keeping us in your prayers and following our story.

Preparing for the big move.

Life has kicked into overdrive in the last several weeks.  Life as a new parent has been wonderful.  Arya is growing so fast.  She was 6 weeks old yesterday which make her 38 weeks, 5 days gestational today.  Already our baby girl is well over 8 pounds, is sleeping for 4-5 hour stretches, and is just an easygoing baby.  I cannot imagine how big she would have been had I actually carried her to term.  She continues to be on a heart monitor to monitor heart rate and apnea episodes, but hopefully she will no longer need it after her neonatal appointment next week.

I am currently on an "off" week of my oral chemo medications.  My current regimen is high dose oral meds for 14 days then 7 days off.  As far as side effects, I have been fairly lucky so far (fingers crossed).  The first drug for days 1 through 14 just resulted in some fatigue and lightheadedness.  On day 10, I started another drug.  Thinking it would be similar to the previous, I did not take my anti-nausea medication.  I paid for it by being ill for 4 hours that night.  After one complication with my first anti-nausea med, I was able to tolerate the rest of the regimen with no significant difficulty.

We had some major life changes as well this past week.  Not only are we in the process of selling our home in Kansas City, but with the help of both of our families, Tim and I were able to buy a home in Fort Ransom near my parents.  And by near, I mean around the corner from my mom and dad.  We are anxious to start a normal life with a normal routine.  Cancer will just be a part of our lives; it will not define it.

Yesterday was a bittersweet day for both Tim and I as we had our last appointments at the maternal-fetal medicine office and my oncology office.  We have had such excellent, compassionate care that it was hard saying good-bye to the professionals who have cared for us, particularly the staff at the oncology office that has been with us for the past 2 years.  All appointments went well.  My blood work is good, so chemo thus far has been well tolerated.  I have had no to minimal symptoms.  I will start my next oral chemo regimen on Tuesday.  The next step is the big Mayo appointment on September 24th to further assess and establish a care regimen there in conjunction with Sanford.

This week we are also saying good-bye to all our Kansas City "family" that we have grown to love over the years.  Today was Tim's last day at the air traffic center.  His coworkers have been such a supportive group of people, and have made accommodations for him over the course of my illness that I cannot thank them for enough.  I went in to work Wednesday to say good-bye to all my former coworkers who have truly been some of my closest friends during my time in KC.  Tomorrow several friends are dropping by for a last get together at our house.  We have some AMAZING friends.

Currently my mom is still here with us helping with Arya and packing.  Tim's mom Deb and Aunt Linda are here as well to help out and see us off.  My dad, Darrel, Terry and Greg will be here Tuesday to help us move.  We should be back in Fort sometime on Thursday.  I cannot wait to see everyone in Fort, especially my sisters and Corbin.  I'm pretty attached to that little guy.  He will get a lot of aunt "Nenny", uncle "Mim", and cousin "Aw-ya" time.

Friends and family in both Fort Ransom, ND and Glasford, IL are busy setting up benefits to assist our family in medical expenses for the months ahead.  We cannot thank everyone enough for all they have done, all the support, and overall love and prayers.  Overwhelmed doesn't begin to describe how we are feeling right now.  We truly know we are blessed and that someone upstairs is looking out for us.

Thank you for taking your time to follow our story.  I will continue to make updates as life goes on.  With Love and God Bless---Jenny

Our latest story... for those who may not know...

In October of 2011, my doctor discovered a large mass in my abdomen during testing for suspected kidney stones.  The tumor was approximately 15 centimeters long on the tail end of my pancreas.  Testing determined that the mass was a malignant grade 2 Neuroendocrine Tumor (NET).  Because the mass appeared to be fully contained, it was removed on January 6, 2012. 

Further follow-up CT scans in May and September indicated no signs of further disease.  Because reoccurrence rates were considered low, we decided it was time to start our family.

On January 5^th, one day before the one-year anniversary of my surgery, we were elated to find out that we were expecting.  The only thing I had ever wanted in my life was to be wife and mother.  The pregnancy had been going along smoothly with minimal pregnancy symptoms.  I was feeling great.

On May 20^th of 2013 at 23 weeks pregnant, I woke early in the morning with a horrible backache.  I decided to go into work despite the pain, but once there, I could no longer tolerate the aching.  My coworkers convinced me to call my obstetrician who advised me to go straight to the labor and delivery department.  My husband Tim met me there, and testing was started.  The baby appeared to be in no distress, but an abdominal ultrasound revealed multiple lesions on my liver.

The next week was a blur.  MRI results further confirmed what the ultrasound had already detected.  Multiple lesions in both lobes of my liver were revealed along with re-growth of the original tumor.  My parents were with my husband and I when my oncologist gave us a rather dire report.  The lesions had grown so quickly that he suspected they might have been a higher grade.  At only 23 weeks along, I could not initiate treatment without risking the pregnancy.

While my oncologist researched and collaborated with doctors at Mayo Clinic on treatment options, I had biopsies of the tissue to confirm the grade.  We were pleased to find out the lesions were again grade 2 in nature.  I started octreotide injections as initial treatment.  This drug had been deemed safe during pregnancy, and the use is to slow or stop lesion growth in the liver.  We hoped to use this drug to get me further along in my pregnancy.  I also started seeing a specialist in high-risk pregnancies to monitor pregnancy progress and to plan for an early delivery.

Over the next several weeks, we worked to arrange our affairs at home.  I had not returned to my job as a hospital speech pathologist since that day in May.  I resigned from my position in mid-July.  Tim and I made the decision to move to North Dakota to be closer to my family.  In his job with the FAA, he had to submit for a hardship transfer to the control tower at Fargo airport, a process that could have taken months to get approved.  We had to switch my insurance coverage to his plan since I was no longer working. 

The baby, our little girl, continued to grow quickly in the womb and was healthy as can be.  The goal was to at least make it to 32 weeks, if not 36 weeks if able.

Mid-July I had another MRI to use for comparison with the original MRI results.  The test had shown that the lesions had grown, so plans for an early induction were initiated. 

Arya Joyce Ekvall was welcomed into the world Friday, July 26^th at 1:23pm, weighing 5 pounds, 1 ounce and 18 inches long.  For a preemie of only 32 weeks gestation, she was remarkably healthy.  She was admitted to the NICU for three weeks.  We spent out time bouncing back and forth between the NICU, my medical appointments, and preparing at home for a move.  We finally brought her home on Sunday, August 18^th.  She has been a true angel.  She is laid back, easy going, and sweet as can be.

One week after Arya’s birth, I had additional testing that could not be completed while pregnant.  My oncologist prescribed an oral chemo regimen in addition to octreotide injections.  He also laid groundwork for transfer of care to Mayo Clinic following our move.   After much hassle getting insurance approval of treatment protocol and eventually switching carriers, I started chemo medications August 20, 2013.

Tim’s transfer with the FAA was expedited, so our official move date has been moved up to September 12^th.  We will be moving back to Fort Ransom, North Dakota where my family lives for support in caring for Arya and myself.  Our house is now on the market in Kansas City.

The past several months have been extremely hard, emotional and stressful, but from them, we also received the love of our lives Arya.  The support from our family and friends during this time has been overwhelming.  The number of people who have reached out to us, prayed with us and for us, has been truly amazing.  It is very humbling to know how many people care, and that there truly is hope in this whole situation.