Wednesday, July 13, 2011

June 25th, 2011 Update

Hello Everyone,
          First, let me apologize for not getting something out to you sooner.  I can’t believe it’s been nearly 2 weeks since my last update.  I’m very sorry about that.
Just to briefly go over my last email to you all, Lindsey had a major seizure on Monday, June 13th.  She was being cared for at home by Josh and the hospice team but it became clear as the week progressed that more care was needed than was capable of being done at home and Lindsey was admitted into the AF hospital on Thursday, June 16th.  At that time they inserted a feeding tube as Lindsey had not been able to intake any food as she was having ‘seizure activity’ in her throat muscles and tongue that prevented her from swallowing.  She had not eaten anything since Monday morning.  Gratefully, her color improved almost immediately and she began speaking a little more.  It was very slurred to begin with and almost imperceptible but with each day we witnessed her determination and perseverance to get better and each day her speech improved, she gained strength and was standing, going on wheelchair walks around the hospital, etc.  By Monday, the 20th they decided the tremors, which had remained fairly constant, had subsided enough to try food.  She did well and she was able to order dinner.  If any of you know Lindsey well, you know she LOVES food.  She ordered nearly everything available to her on the menu and the hospital staff thought it was awesome!  And darned if she didn’t eat nearly everything they brought her.  It took a while but she did it!  One of those “I can’t believe it”! moments (We know there have been many of those).
          The hospice team was overall in charge of her care while she was in the hospital and the Dr. was amazing.  They have only known Lindsey in this state as she wasn’t having to utilize hospice much since they placed her on it in February, so they had no comprehension that she would be up walking, talking, eating, and determined to “get out of this hospital!” Which she did on Tues, the 21st.  However, upon getting settled at home she experience another seizure for which Josh administered the shot and we waiting.  She woke up 4 hours later and all she wanted was french fries and so that is what she got.  Of course, we were stressed as you can imagine.  Josh got very little sleep the next few days watching her and making sure in the night there weren’t any problems.  He is still having to go to work, which is a blessing in itself as he can get out and clear his head, regroup, and when he gets home he is ready to take care of things thru the evening and thru the night.  Lindsey has a wonderful girl, who has been her friend for years, taking care of her throughout the day and she has been a huge blessing for Josh and her family.
          Now what?  I want you to know that first and foremost, we need to keep our hope alive and the prayers and positive energy flowing.  We realize that the course Lindsey is on is not the one we were hoping for, which was to be healed and live a long and full life with her best friend Josh.  Indications; continuous seizure activity and another major seizure on Saturday afternoon while taking fairly heavy doses of anti-seizure medication, are that the tumors are progressing and placing pressure on her brain.  The seizure which landed her in the hospital has taken its toll. She has less fluid thought and has trouble at times putting it all together.  The feeding tube remains and helps to get necessary fluids, medications, etc administered.  However, she still has the fierce determination which has caused her to beat all the time limits the Dr.s had placed upon her.  Friday nite she very much wanted to go have a little fire up the canyon and did just that.  She even walked the entire distance from the truck, down the path, across the bridge and to the little site we were at.  She never ceases to amaze me.  She had a beautiful morning with her Mom and sisters and then had another major seizure on Saturday afternoon.  Josh is handling everything extremely well.  He’s in hyper mode watching for any sign of trouble but being very stable and a strength for Lindsey.
          At this point I’m not going to get into the details of what will more than likely occur over the next days to weeks but we know that our time with Lindsey here is limited.  This is not a discussion each of us needs to have with her and please don’t flood their phones with calls.  I believe these conversations are for her and Josh to have alone together.  Your love and support have been there, we know it is there, and we have found that place where peace resides.  There has been so much to be thankful for on this incredible journey that Lindsey has allowed each one of us to be a part of with her.  It has been as individual for Joshua, her family, friends, people she has inspired, even people who don’t even know her, as it has for her.  We have each taken something from this experience and hopefully allowed it to take a foothold in our souls to the extent that we never forget what we have learned.  I know for myself that my life will never be the same.  I hope to love deeper, be more and live more than I ever have before.  Yes, Lindsey will forever be a part of me and I love her more than I can ever express.
          In the days and weeks ahead I encourage you to pray for peace, understanding and freedom of pain for Lindsey and Josh.  I want you to know that she has experienced the miracle of absolutely no pain.  The oncology nurse who lives next door told me that is unheard of with what she is going through, yet she has not had to have one dose of pain medication.  I will keep you updated as best I can.  Again, there is much peace to be found and we are experiencing that.  Thank you, thank you to you all.
With thanks and deepest love,

June 13th, 2011 Update

Hello Everyone,
Many of you have already heard that Lindsey suffered a massive seizure
yesterday morning around 10a.  She was brushing her teeth, Josh had gone to work
and her sister was sitting with her in the room.  Her Mom heard her fall and
rushed in while her sister ran next door.  Their neighbor is an oncology nurse
and Lindsey’s friend.  They were able to administer the shots with anti-seizure
medication, call Josh, and call hospice.
 Mark and I were in St. George when we received the call.
She experienced several more seizures throughout the day.
The hospice nurses were really good and got her set up with oxygen, IV,
medications, etc.  It was a very long day for Lindsey and the family but I just
came from being with Josh and Lindsey today at lunch and though tired and weak
she is doing much better.
There haven’t been any seizures today.  While I was there she wanted her notebook to write in
and when Josh was being helpful and writing what had happened today she gave him that look
that says “I was trying to do that”!
I told her about being in Zions National Park and doing the hike
we all did together in 2009. I told her about taking an honorary platypus
picture (Jenny, Lindsey, and I took one in 2009 and it’s one of my favorites)
She smiled and looked at me deeply. She isn’t able to speak yet but was
trying. I told her we would all go again in the fall. Another big smile. It
made my heart happy.
She drew Josh close and kissed him several times and wanted him to hold her hand.
I think these are very big improvements over what we experienced yesterday.
As I was leaving I told her I loved her and would be back later.
She waved goodbye to me.  Another good sign.
Please keep her in your prayers.  I posted the event yesterday on FB
because that’s all I was able to do mobile.  I will keep you posted as I’m able
with her progress.  I know we all have a interest in what happens here.  It has
been a journey to be sure.  A friend of mine posted this and I feel it’s
appropriate to share with you.
“When the Japanese mend broken objects, they
aggrandize the damage by filling the cracks with gold. They believe that when
something’s suffered damage and has a history it becomes more beautiful.”
~Barbara Bloom
I’m not inferring that Lindsey’s broken by any means, but that our experience with
Lindsey’s journey and being able to share in it with her and Joshua have made our
lives more beautiful.  We are filling in our broken bits with the gold of knowing her
and having her in our lives.  And truth be told, Lindsey is one of the most beautiful
people I have ever known.
With love,

Sacrament Meeting Talk given by Josh's cousin Brandon Karr May 28, 2011

The 7th Article of Faith
Sacrament Meeting talk given by Brandon Karr May 28, 2011

When I was asked to speak today, I was asked to speak on the 7th Article of Faith. 

It reads: 

“We believe in the gift of tongues, prophecy, revelation, visions, healing, interpretation of tongues, and so forth.” 

...I am going to focus on just one of the items in the article, “healing”, which as I'll explain in a moment why, is very near and dear to my family...(pause)... 

In the June 2008 Ensign,  Elder Alexander B. Morrison speaks about healing.  He talks about Christ's healing powers and how they extend beyond physical ailments to include “all manner of disease among the people”.  This means that he not only heals people with physical ailments, but also those with mental or emotional ailments.  These healings are an integral component of the Atonement of Jesus Christ. 
            The Savior can heal all with his powers, but mortal men with the Melchizedek Priesthood are subject to his will.  Sometimes, we are not able to heal an afflicted person, because God's will is otherwise.  In 2nd Corinthians, the Apostle Paul sought out the Savior three times asking him to remove an unidentified “thorn in the flesh”.  The Savior declined his request, explaining:  “My grace is sufficient to thee, for my strength is made perfect in weakness.”  Paul then understood that tribulation and suffering are both necessary and inevitable parts of life. 

Because we have felt the power of prayer and healing, it is something that has really affected my family for the last few months, and there have been a lot of feelings from tender moments that have been very close to the surface,  

I have some cousin's, Josh & Lindsey Karr, that are currently going through a “”thorn in the flesh” as mentioned;  as she(Lindsey) has many tumors that medical professionals have deemed at this point untreatable: the following excerpts are from an email sent to our family in February of this year:

Dear Family, Friends, and loved ones.

It's been a season of peace and healing for us since Lindsey finished her radiation treatments.  We have watched her gain weight, have no pain, start to drive, begin teaching lessons again, of course her laughter never left her. It's what makes Lindsey so unique and amazing is that despite all her adversity her view of life always has remained optimistic and full of love for all those around her, especially Josh who has been by her side (and as he said they have grown so close thru this experience that he couldn't have hoped for more) We have truly been blessed.

However, just 2 days ago on Sunday Josh and Lindsey had their first get away since her radiation treatments ended. They were staying in SL and during dinner Lindsey looked at Josh and said it felt like she was having a seizure.  He gathered her up and rushed to the ER. 

The medical team began treating her with anti seizure medication which made her very groggy.  Her speech began to slur and she began having pain.  The cat scan that was ordered did not show any fluid build up in the brain, and  we were hoping that a previous shunt had plugged or was malfunctioning and that we would get it fixed and move on.  More tests were going to be done so they admitted her to Neuro ICU, where she is currently.

As you can imagine our emotions have been high.  While she rested. we got the information back from the radiologist who conferred on her case when we were at the hospital last time.  He told us that it appeared the tumor had spread throughout the membrane which surrounds her brain and it is totally encompassed now by the disease.  We tried to take in what was being said and still hoping that what we were looking at would end up being something else.  Josh was devastated.  The neurosurgeon came in to see us as soon as he was thru with his surgery.  He and his team broke the news to us that if what we were looking at would have been infection she would already be gone.  Indeed, the tumors have spread throughout her brain and there is no more treatment that can be done...  as this news was soaking in,  thoughts of what we knew...  that the radiation treatments she had were going to be a one time chance to conquer this horrible disease which took such a toll on Lindsey, and that chemotherapy is not effective in these cases.  It was very difficult being told by all the doctors that proceeded to come and see us that there was nothing more to be done.

Josh is trying to come to terms with the information we received yesterday.  It was one of the most emotionally devastating days of my life, and I felt wholly inadequate in trying to comfort my son at facing life without his best friend.  We are taking Lindsey home today and will enlist hospice care to care for her for the time we have left.  Josh decided that she will be moved into her parents home, where Lindsey and he will move back into, to spend her last days or weeks surrounded by her family.   We do not know how much time we will have with Lindsey.  At this point she regained consciousness  for a short time last night and Josh was kneeling by her bed.  She looked at him and told him she loved him.  She reached her face over and kissed him all over his face and said she loved him again. 

He just lit up.  She has a hard time speaking and we don't know how much coherency she will regain.  It was a beautiful moment.

We love you all very much.  We have been surrounded by the love and prayers which have been offered on the kids and our behalf.  Please continue to do this.  Now, more than ever, we are in need of strength we do not possess.

With love (and a broken heart)
Julie(Josh Karr's Mother)

As you can see this is a situation where man has stepped aside, and we are clearly dependent on the powers of Heaven. 

They gave my cousin only days, or at best, weeks to live at that point, and sent her home to be “comfortable” which in itself doesn't make much sense to me. 

The story doesn't end there however, Lindsey, as she has put it says “I am still here, and I am not going anywhere”!  She is no ordinary person, she simply refuses to give up.  She and Josh are an inspiration to me, through their extreme circumstances, love of life and sheer optimism.

Since February, Lindsey has been in the news papers, and featured on KSL news, for her amazing happiness,  love of life, and  putting others before herself, regardless of her circumstances, she is truly an inspiring.

She has a credo which is “Living Life through laughter” which has sustained her and Josh though the past months.  The Healing power of the priesthood, and of the many prayers offered on her behalf, have kept her here longer than any of the medical teams ever expected...

Back in February, Lindsey and Josh asked our family to set an alarm to remind us to pray for her at 5:55 pm every day, which we do happily.  She has since told us that she can actually feel the healing power of the the prayers.

This has helped to build my testimony of prayer, and healing through the power of the priesthood, which I have seen first hand in the lives of my family.  I say this in the Holy name of Jesus Christ, Amen.