Thursday, March 31, 2016

The Aftermath

We were able to leave the hospital and come home the afternoon of Easter Sunday.  Such a blessing for us - especially Lothaire, who had been "caged" and poked and prodded for nine straight days!       Here is how he felt about coming home:

That's a Happy Face!!!

Some of the kids popped over to visit that evening and we enjoyed a pie fest, thanks to the sweet mom of one of our returned missionaries!

The last four days at home have had their share of fatigue and upset stomach for Lothaire, but that is to be expected.  We have met with his oncologist and it has been determined that Lothaire will go in for five more treatments.  There may or may not be radiation at the end - depending on the results.  Lothaire was SO hoping to be able to have the infusion as an outpatient, but this particular regimen must be administered as a continual drip over 5 days.  It is the optimal treatment for his particular lymphoma - so that is what we will do!  He will go in every 21 days - with the next treatment beginning April 14th.  They removed the PICC line before he came home, and will "install" a central port two days before he goes back in.  Good thing he isn't needle shy like someone else I know :)!

The prognosis is very good - and the lump on his neck has already reduced significantly.  His vocal chords are still compromised and he can only speak in a whisper - we are hopeful that his voice will return as the treatments continue.

The Saturday before Easter, I was able to slip away to our family gathering for a couple of hours.  That is usually held at our home, but this year one of our daughters hosted, and everyone pitched in with the preparations.  Our kids have been so amazing and supportive!!  Here is a glimpse:

Everyone waiting inside for the Easter Bunny to finish hiding the eggs out front!



Wednesday, March 23, 2016

Change is Inevitable

When I last posted, it was Monday evening.  It is now Wednesday evening - just 48 hours later.
Here is how those 48 hours have gone!

When I arrived at the hospital Tuesday morning, fully expecting to bring Lothaire home with me, the team of doctors came in to the room and said that unfortunately, Lothaire did not qualify for the study since he had already taken doses of prednisone that were different from what the study required.
Back to Plan A - and Lothaire would not be coming home just yet!

The chemo plan for him is DA EPOCH - here is my simplified version:  4-5 hours administration of a bio therapy drug called Rituxan, followed by 96 hours of the chemo regimen, concluded by the administration of cyclophosphamide (spell THAT without looking!) which is the drug that apparently often brings on severe nausea.  And that is when he gets to come home.  This occurs every 21 days - the number of treatments depending on the response of the cancer.  Usually somewhere between 3 and 8.

Fortunately, they had not removed the PICC line, so after signing some paperwork and explaining that the first drug administered, Rituxan, could have some crazy side effects, they hooked him up and began the treatment.  This was about 5:45 PM.

Crazy side effects - rigors.  I can talk about this now because it is over and he is okay.  But within 10 minutes of the onset of the therapy, Lothaire began shaking uncontrollably.  Anticipating that possibility, the nurse had doses of demerol on hand.  It took two doses, after pausing the therapy, and lots of blankets, but he finally became calm again.  They started up once more and bumped it up slowly, and he tolerated it well after that.

Son in law, Shane, came to visit just before the treatment began.  Lothaire was
ready to get going!!!

Ready, Set, Go!  Smiling - not knowing what was just around the corner (the rigors)

As soon as the bag was empty, they connected the chemo formula.  No side effects.  I went home about midnight, assured that he was going to be fine.  And he was.
When I returned the next morning, here is what I found:):

He was up and showered and ready to do laps around the floor!  Our daughter, Chelsea, had slit tshirts on the right side - where the picc line is - and attached velcro.  No more hospital gowns for our stylin' man!  He felt great and we took our 5 laps, then settled in to our computers.

I must tell you how much your emails and messages and Facebook posts and responses to the blog mean to him and to me.  Your love and your concern and your prayers help to sustain us in a very real way!  We don't have time to respond to all of them, but we read and treasure each and every one!

The journey ahead is promising.  Yes, he will probably lose his hair and a little weight.  But he is a fighter and a man of faith - knowing that he is in the Lord's hands and that all will be well, regardless of the outcome.

WE CAN DO HARD THINGS!  And we know that each one of you have hard things to deal with in your lives!  As we seek help from the Lord, He strengthens us and helps us to understand.

We are so grateful for the feelings that arise during this Easter week - contemplating the hard things that our Savior did for us.  We love him, and want to be more like him, and marvel at the comfort, the mercy, the peace, and the hope that his wondrous atoning sacrifice offers to each of us.

Our kids worked together to create this precious poster to have in Lothaire's hospital room.
Each picture filled with love and joy!  How we love our posterity, and how grateful we are to know that families can be eternal, through the Atonement of our Savior Jesus Christ!

Monday, March 21, 2016

At the End of the Day

No pics today - just a little info:

When I arrived at the hospital this morning, Lothaire had already had his echocardiogram and his breakfast:) - a very important item on the agenda!

The doctors came in doing their rounds and talked about the chemo treatment. We decided to go ahead and begin this evening, and preparations were underway.  It will require 5 days in hospital for the treatment.

I left for an hour to have a birthday lunch with our daughter, Amy, and our three other girls plus 7 little grandkids who were not in school today.  It was delightful, unorganized chaos at Joe's Farm Grill:).  Okay - maybe one pic:)


When I returned, another of the doctors had been in and there were some changes.
He presented a new regimen of chemo that targets the cancer cells, is particularly effective with non-Hodgkins lymphoma, and is administered outpatient.
That was so much more appealing to Lothaire, who is feeling very much like a caged animal after only two days in the hospital!  SOOOO - he will be released tomorrow, come home and take some large doses of prednisone for the next several days, then hopefully have the first treatment later this week.

This afternoon brought on a bone marrow biopsy and another needle biopsy of the neck mass.
I told Lothaire that if I had been poked and cut on that many times in one day I would be hiding under the bed!!!

If there is one thing that I have learned this whole last month, it is that I am not in control of ANYTHING!  Except my attitude - sigh.  Working on that right now.

Arizona - Home Sweet Home!

We know that many of you have been waiting for an update.  Please forgive me for being a little slow!

We arrived in Arizona last Saturday evening the 13th of March.  It was so good to be HOME!!

Fresh off the plane!

Hugs and Smiles - long overdue!

We gathered at home and just enjoyed some together time.

Our little Miss Adelynn was born while we were gone.
She was a little suspicious of the smiling man claiming to be her Grandpa!

The plan of action was that Lothaire would be seen on Tuesday at Banner MD Anderson Cancer Center, as a transfer patient from the Huntsman.  We were okay with that - just anxious to get things going.  However, on Monday, the center called and said that the doctor had gone out of town - spring break.  Our appointment was pushed back to Friday.  Lothaire was not having pain, just increasing discomfort.  We could see that the mass was growing.   We waited patiently.

On Thursday the center called and pushed the appointment back to Monday (today).  I should have taken that call!!!!  Lothaire is too nice sometimes!!
We were all on super anxious, frustrated, maybe a little bit angry mode!

So that is why I didn't post anything last week - there was nothing happening!

On Friday, however, things took a turn for the worse.  In the afternoon, Lothaire became very uncomfortable and began experiencing pain for the first time.  His voice, which had been at a low whisper, became a COMPLETE whisper - no volume whatsoever.  He spent a miserable night, trying to control the pain - finally falling asleep in the early hours.

I felt prompted to arise early and get showered and ready.  As soon as he woke up I said that I think we should DO something about this!  He agreed - a sign of his true discomfort.  After kneeling in prayer together and pleading for divine intervention, I, being the only one with a voice at this point, and feeling a bit protective of my companion(!), made a call to MD Anderson and, of course, got the call center because they operate on clinic hours - Monday thru Friday.  I explained the situation with urgency to the fellow on the other end of the line.  Even though we were not officially patients there at this point, he agreed to call the on call oncologist - a tender mercy.  She called us within 5 minutes and listened carefully and compassionately to our story.  I will forever be grateful for her at that moment in time!

She told me to take him to the ER at Banner Gateway, which is the admitting facility for them - right next door.  We were there within the half hour. Our sons in law, Max and Alex, who had just driven in the evening before, were able to give Lothaire a blessing of health and comfort before we left.  

 Suffice it to say that it was a very lengthy procedure, but 5 hours later he was admitted to the oncology floor.  I felt that he was finally where he needed to be and was so greatly relieved!
They were able to control his pain and make him comfortable.  He had a much better night.
The next day - Sunday (yesterday) - the doctor came in, we went over his transferred records together, and she ordered a PICC line installed for the chemo, and a CAT scan done to measure the growth of the mass in the last two weeks.

This morning Lothaire will be having an echo cardiogram to make sure that his heart can withstand the treatment, and they will be doing a bone marrow biopsy to make certain that there is no cancer there.  They plan to begin the R Chop chemo this afternoon/evening.

That is what we know to this minute - and I am on my way to the hospital right now.

We are both very hopeful - and grateful for the divine intervention that we felt take place.
Lothaire is in very good spirits.
We had many sweet family/friend/missionary visitors yesterday in the hospital.
We thank you ALL for you continued love and prayers and support.  We honestly can feel it and love you for it.

I will post a few more pictures and then off I go.
I will update as soon as I am able -

Jordan came to be with us for the admitting process - so good to have him!

He, along with us, had been very frustrated with the whole week!
Before the nurse came in and fill in all of the blanks, he filled in the bottom two:):):)

Patiently waiting - with a big lump on his neck!

If you haven't had your flu shot or if you have a little cough, you have to wear a mask to visit on this floor!!

We enjoyed our visitors so much yesterday!!!!!

Thursday, March 10, 2016

A little more news

We were so hopeful for some definite results today as we visited the oncologist at the Huntsman.    
However the final biopsy results were not complete, so we are still hopefully guessing that Lothaire has non hodgkins lymphoma.

The doctor said that the PET scan showed hot spots only in the neck area - mostly the right side, but a few in the left.  He is recommending a bone marrow biopsy as well, to make sure that everything is covered.

Unless the biopsy results show something totally different, the treatment will be IV chemotherapy which will probably last from 3 to 6 months.  Much better than invasive surgery!

When he found out that we live in Arizona, we talked about transferring to the MD Anderson Cancer Center, and that is what we have decided to do.  His office is making the arrangements so that the treatment for Lothaire can be expedited.  We hope to be home early next week.

"Home" is an interesting word.  We have been in temporary homes for the last 20 months - in Concepcion, in the hotels we frequented as we traveled our mission, and now, here in Salt Lake City. To a very large degree, home IS where the heart is, and we have been very happy and have felt extremely blessed.  However the thoughts of returning to HOME home brings a flood of emotions.
We know that it will be wonderful, and that it will provide the best healing environment for Lothaire, surrounded by the love of sweet family and friends.  We are grateful.

And here is a little taste of "home" for us!  We are still in Salt Lake City (this was yesterday), but we are surrounded by sweet family - Amy and Patrick and their 4 cutie pies drove up from Arizona, Rick flew in from Virginia, and Jonas flew in from Hawaii.  We are counting our many blessings!
And just in case you have never visited Crown Burger in Salt Lake City, it's a must!!!!!

Monday, March 7, 2016

Monday & More

While trying to patiently wait for today's biopsy, we found a few random things to do:

On a tip from my brother Norm, we found a strange little sculpture garden
Case in point

The three of us (Jonas is with us) took a long, leisurely stroll along South Temple Avenue

We found the beautiful, very old First Presbyterian Church - finished in 1903
And the magnificent Cathedral of the Madeleine - circa 1909
Just look at those two handsome men!!

And then, FINALLY, it was Monday.  

I spent the morning on FaceTime with my dear friends, Ingrid and Michele who were inside of our home in Concepcion.  Thanks to technology, the three of us (with a cameo appearance by one more special friend, Pres. Arrington!), were able to sort through and "pack up" our belongings there so that they can be shipped home to us.  I may have sobbed uncontrollably more than once.  Thank you, sweet friends, for your service, your time, your love, your friendship.  You will forever be treasured by us!

And then the hospital called and requested that Lothaire report at 1:30 instead of 4:30.  There was a two hour prep time - odd to witness Lothaire as the patient instead of the doctor:):

Can't help but notice that lopsided neck!  I wish you could have been there to witness him trying to talk three different doctors out of administering general anesthesia:):)

They took him back to the OR around 3:30, and told Jonas and I that it would be about 1 1/2 hours before he was back in recovery and awake.  We went upstairs and found something to eat and tried not to be nervous.  Just as we were finishing, the doctor called.  He said the biopsy had gone well and the resident was closing him up.  They took a large piece of tissue (2x1x1 cm) and it indeed seems to be a non Hodgkins lymphoma.  The pathology will disclose whether it is a B cell lymphoma, and that will take several days. 

This is a huge relief, because these types of lymphoma respond well to chemotherapy which is SUCH a better option than surgery in this situation and location!

We had mentioned to the doctor that we would like to hop down to AZ while we awaited the pathology.  But on the phone he told me that the mass was growing too rapidly and that treatment should begin sooner rather than later.  He made an appointment with a noted oncologist there at the Huntsman, for Thursday.  And she has requested a PET scan to be done before then, to determine if there are any other hot spots in the body.  So our grandchildren (and us) have to wait just a little longer.  We are incredibly grateful to have such caring, competent doctors and nurses and to have things moving along as they need to.  And we sense angels around us - seen and unseen.

Here he is - post op - still a little tipsy from the meds:)

We made a quick drive thru at Crown Burger for a strawberry milkshake, which hit the spot and made him so happy!
He is resting peacefully and we are prepared for what comes next.
We thank you again and again for your fasting and prayers - your notes and your emails - your love and concern.
We have been touched to the core by the efforts of so many of you!
We are in it to win it!!!!!

Saturday, March 5, 2016

A Time of Challenge, A Time For Faith

This photo was taken the middle of January in the Mission Home, with our special friend Ingrid and our special Elder Woods.  It is a very sweet memory.  We had no idea what was in store for us just a month later.

Many of you are aware that we are currently in Salt Lake City undergoing evaluation for Lothaire at the Huntsman Cancer Center.  So many of you have emailed and messaged and called to express concern and support and to ask what is going on.  Because I can't respond to everyone, and because Lothaire doesn't really like to be the center of attention on Facebook, we decided that I would post the situation here on our blog and also post updates as they come in, so that those of you who want to can find the latest information this way.

Early in February, Lothaire noticed a relatively small mass on the right side of his neck.  It was a very busy time.  We were just finishing up interviews for our 178 missionaries, took a trip to Buenos Aires for a Mission President training seminar, came home to a big cambio with 32 new missionaries arriving, and started up the next round of Zone Conferences.
The mass seemed to be getting larger and I made him go in to the Dr. before we left to the south of our mission for 5 days.
The mass was soft and an ultrasound was recommended, but we left the next day.

By the time we returned to Concepcion, we could tell that the mass was larger and firmer.  And then on Tuesday morning, Feb. 23, Lothaire woke up with no voice.  He had been experiencing some hoarseness over the last month, but he talks a lot almost every day of the week with interviews, trainings, conferences, etc.  So we assumed he just needed to rest his voice.  But when he woke up with NO voice, a big red flag went up.  We had a big Zone Conference that morning and he somehow whispered his way through his part, using a microphone.

That afternoon, he called his cousin who is an ENT in California and the urgency of the situation became more apparent.  Many calls were made and an appointment was made with an ENT in Concepcion the next day.  He was very concerned and sent Lothaire for a CT scan and an ultrasound.
The tests were completed and we were back in the Dr.'s office on Thursday afternoon the 25th.  We all assumed that it was a thyroid issue, but the tests showed there was no thyroid involvement.  The Dr. was puzzled and recommended a
sub specialist, getting us an appointment the next day.
At this point, Lothaire and I were on much higher alert.  He continued to consult with his cousin in the states, and also called the medical department for the missionaries.  We have called them many times for some of our missionaries in trouble with their health, but now it was our turn.  Without skipping a beat, the head Dr. heard the story on the phone and said, "We need to get you out of there ASAP".

Later that evening, they called with our flight information and we were to fly to Salt Lake Friday afternoon - the very next day.  Appointments were being set up for immediate care.
What were we to do?  We knew that we had to go, but for how long?  Would we be back?  Who would watch over our missionaries while we were gone?
Friday morning we already had a Consejo scheduled - a meeting with the Zone Leaders and Sister Trainer Leaders of the entire mission - 32 missionaries plus our 2 Assistants.  We went to the meeting with anxious hearts.  After I gave my training, Lothaire came up and stood by me as I explained the situation and that we would be leaving for an undetermined length of time.  There were tears all around - probably mostly from me.  Lothaire gave me permission to hug each one (I usually only hug the Hermanas and shake the hands of the Elders), and say goodbye.  One of our sweet Elders started playing the hymn, "God Be With You Till We Meet Again", and they all softly sang.  I was afraid my heart would burst.  We love each one of our missionaries so very, very much!!
Lothaire took me home so that I could quickly pack, and he finished the meeting.  And then, before we had time to even think about it, we were on the plane to Santiago, then to Atlanta, and then to Salt Lake City.

We knew that someone from the church would be meeting us and taking us to where we would stay.  What we didn't know was that 5 of our children had booked flights to be there with us.  So when we got off the plane and Meagan was standing there, and Jordan shortly after, we were astounded, humbled, and weeping once again.  Chelsea and Amy and Bee flew in a few hours later.
Our appointments were not until Monday, so we were able to enjoy the weekend with our kids - it was some of the very best medicine!  Some of them were able to stay until after the appointments.  We felt very fortunate to be seen by the head of the ENT Department at the Huntsman.    He very carefully went over the reports we brought from Chile and considered three different options:  a Schwannoma, a paraganglioma, or a peripheral nerve sheath tumor.  The tricky part is that the mass encases the carotid artery - which would be a very difficult and delicate surgery.
Also, the vocal nerves have been compromised which is why he can only whisper.
The Dr. scheduled an ultrasound guided needle biopsy, a CT scan of the chest (because of the size and location of the mass), and an MRI of the neck.  The tests couldn't be done until Thursday, so we sent the kids home to their families.  However, the next evening, our son Jonas flew in from his home in Hawaii, and is with us still.

The tests were done and seem to indicate lymphoma - treatable with chemo and radiation.  Not great news but a much better scenario than surgery.  To make certain, Lothaire is scheduled for an open biopsy to harvest a larger piece of tissue, on Monday afternoon.  The results will probably take several days.

So what does this all mean?  Will we be able to finish our mission?  Quite possibly not - a very difficult thought for us.  The church has appointed a stand in President until we know our time frame.  If treatment takes too long, we will need to be released and replaced.  We know that our missionaries will be fine - they are incredibly awesome.  But to say that we will miss serving with them is an understatement.

Will we ever get to see our grandchildren, who are in AZ, CA and Hawaii and Virginia?
We sincerely hope that will happen much SOONER than later!!!

The most important thing is to get the right care for Lothaire - to get him in good health once again.
Many might say, "Why did this happen when you were serving the Lord?"
We have lived long enough to come to know that our lives here are kind of a proving ground!
We are given challenges so that we can exercise our faith and hold tight to the word of God!
Our challenges stretch us and help us to grow and to become who we are meant to become!
The reward of eternal life with our family is well worth any trial we have to bear.
We trust in the Lord.  We know that this is HIS plan, not ours!
We give thanks for our Savior and his atonement, which brings mercy and comfort and peace and joy into our lives.

We express our love to you and our gratitude for the praying and fasting and words of love and encouragement that keep us going forward!

I am including some random photos from the last month, and as I mentioned before, as we receive news, I will post it to this site.

A happy moment together - one of many!

Much loved missionaries
These two young men spotted us at a chapel where we were having interviews.
They recognized us and requested a photo - great prospective missionaries!

On the 19th of January we taught classes on living Prophets and making good choices, for several hundred young people.
With us in this photo are President and Sister Alder - Santiago Temple, and President Warne from the Rancagua Mission.
This cute returned missionary helped us all day.
These are our missionaries who returned to their homes on Feb. 9th.  Such amazing young people!
And here are some of our new 32 who arrived that same day.
Here are the rest, minus 2.  We had 2 from Brazil fly in later that day from their training center in Argentina.

Here we are at one of our Zone Conferences inTemuco - completely unaware that we would be heading for Salt Lake City the very next week.

It's always fun to eat with our missionaries!

Some of our cute, sweet Hermanas!
Our last Zone Conference with San Pedro, Lebu, and Coronel - just 3 days before we left.  Still unaware!


Missionaries in Loncoche - our furthest South!


Some of our Zone Leaders in Los Angeles (Chile!) - the middle part of our mission .

Such awesome young men!!!
This happened the Sunday before we left - still unaware of the seriousness of the problem.  Our sweet Hermana on the left was having trouble with her eyes, and the family here in the photo brought them up to the mission home for President to look at her.  The members here watch over our missionaries so wonderfully!
And here is President in his office with his two outstanding assistants.
They carry a big load and do it well!
Here in Salt Lake City with some of our kids - trying not to think about the serious stuff!

And with Jonas - finding something delicious to partake of at Kneaders:)