July 18th, 2011 Happy Anniversary Josh and Lindsey!

Hello Everyone.

Well my promise to do better on the updates didn't pan out too well.  Sorry about that.  I know everyone is interested in what's happening and 2 weeks is much too long (ok, it's been 3).  Yikes. 

The reason I haven't sent out more regular updates is that things are pretty status quo, however, I will tell you that we had a remarkable day with Josh and Lindsey on the 4th of July.  As I tell you the events of the day, keep in mind that she is mostly in her bed for the majority of the day.  Each day she had small seizure activity or tremors that prevent her from swallowing and she is generally very tired, however, she really wanted to see the balloon launch in Provo early in the morning, so we made our plans.

At 5a, Mark and I were up and going, out the door and over to Lindsey's parents by 5:30a.  (not just us but the boys as well!)  Lindsey and Josh were up and getting ready, she was excited to be able to go.  We loaded her up and made our way to Provo.  We arrived just as they were beginning the flag raising ceremony.  This was a large US flag attached to the Alexanders red, white, and blue balloon and the entire gathering repeated the pledge of allegiance with the announcer and then played the Star Spangled Banner.  It was awesome.  All of the balloons began to inflate and they even had Darth Vader head (haha) which was a massive 86' across and a price tag of $500,000.  Most of the balloons were inflated and ready to take off when a pretty stiff wind came and the launch was cancelled.  It was a little disappointing but still it was a fun time for our family to be together.  Matt, Jenny and their 2 boys along with Mitch, Mike, and us all spent a beautiful morning together in the midst of these awesome balloons and field of color.  (ok, that's the Mom version)  The boys were a bit disappointed but not to fear as the Karrs tend to make their own entertainment.  Pretty soon we had made our way to the parking lot where our vehicles were and Mike (with Jaxson in the stroller) and Matt (with Logan in a stroller) began to do stroller races.  We were all laughing and having a great time.  I'm not sure who won but it was close!  I thought for sure by this point that Lindsey would have wanted to go home and rest but she was still going strong so we headed out to breakfast.  Her appetite is healthy and it took a couple of hours but we had a great meal and she did really, really well.  Afterwards, yes, by then she was ready for a nap (we all were ;) and later we all went and watched Josh and his Dad fly their RC planes.  A bit more rest and she was ready for fireworks!!  We parked in the church parking lot and had a perfect view.  It was a magical day and the best part is that she had absolutely no tremors or seizure activity the entire day.  It was a bit of a miracle in itself.





Since that day Lindsey has had her ups and downs.  My daughter Jessica spoke with Lindsey while she was in the hospital this last time and then spoke to her again recently.  She said she couldn't believe how much better she now sounded!  On the phone that day, you'd never know.  A girl stopped me in church yesterday and she had stopped and spoken to Josh and Lindsey a few weeks ago and  said she couldn't believe that after spending a few minutes with them she walked away feeling happy and joyful and she had expected to be full of sadness at their situation but they gave her a huge dose of happiness instead.  Isn't that truly incredible?

Today, July 18th, is Josh and Lindsey's 3rd Anniversary.  Unfortunately, Lindsey is having a down day and is extremely tired and not too aware that it is actually their special day but Josh still took the day off to be with her.  He made her favorite food of all time, french fries, for lunch.  Honestly, that girl could eat french fries for breakfast. lunch, and dinner!!  And she loves fry sauce!  She will even eat it on brocolli.  Crazy and fun.  Their love shows through everything else that is happening.  Josh is strong, a little sadder, but I think not as full of anxiety, which is a blessing.  If you'd like to shoot them a "Happy Anniversary" note, I know they would love it.  If you are on FB drop them a line on their pages, Josh Karr or Lindsey Kae Robinson Karr.  You do not have to be on their list of friends to drop a note.  Otherwise go to the blog http://www.forlindsey.blogspot.com/ or even better to the website of http://www.livingthroughlaughter.com/  The website has much more information on it than the blog but whichever you are comfortable with.


Don't forget to still offer prayers, or send positive energy to Lindsey at 5:55.  Thank you one and all for all the notes, love, and encouragement.  There are people I knew very little at the beginning of this journey which began a year ago, who are now some of my greatest sources of peace.  Friends and family, you are loved.

With love,
Julie

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,

Julie