Update #2 (See older post as well - 2/15.)

Hello Everyone,

First, I want to thank all of the love and support, notes and phone calls we received yesterday.  They were full of expressions of prayer and concern and we are truly grateful to everyone.  This has been an emotionally and physically exhausting couple of days and these have strengthened us each time a note popped up on my phone or in my inbox or on FB.  It really helped more than you know.

It never ceases to amaze me at the fierce determination of this wonderful girl.  I called Joshua yesterday morning to see how the night had gone, not expecting much change but when I phoned he put me on speaker phone and there was Lindsey saying 'Hello' in her big Lindsey voice and laughing.  I couldn't believe it.  I spoke to her for a few moments, it felt so good to hear her voice.  When Mark and I arrived at the hospital she was sitting up and talking with Josh and us.  She was eating some breakfast.  It was so wonderful.  They had administered a steroid (sorry, I can't think of the name) and it reduces the swelling in her brain and helps to make her more alert.  It was a night and day change.   She was joking with her Dad and talking to all of us.  Her speech improved more as the day wore on.  Her appetite is good.  She was able to get up and shower with the help of an aid.   She was very adament about making to her sister, Savannah's, last basketball game.  She had a dream that she needed to be there.  So we packed everything up.  Got hospice arranged before we left the hospital and took her home.  She was exhausted but we did make it to the game with all of us cheering on the sidelines.  It meant the world to her sister, who is really struggling with the news.

Up to this point we still had not told Lindsey her prognosis.  Josh wanted her to be able to enjoy the day being alert, and happy, and being, well....Lindsey.  It was the right choice.  Josh needed that day as much as Lindsey.  We protected her from anyone saying anything and it was a wonderful reprieve from the previous days news.  Following the game Mark and I, her parents, and Josh gathered her in her parents room to break the news to her.  Josh knelt down by the bed and held her hand, looked in her eyes and was getting serious when Lindsey said loudly "Is this bad news"?!!! and yanked her hand away and put on her pouty face.  She was laughing.  Josh was trying to compose himself and it rattled him but he just started over.  He told her about the tumor spreading thru the membrane surrounding her brain.  She moaned and thru herself on the bed but in a playful, funny way.  She came right out and said "Am I dying"?!   We didn't give her any prognosis as far as time remaining.  There really is no point to that.  When Josh continued on, Lindsey sat up in bed with her legs crossed and adamently patted her legs and her arms and very determinedly stated "I'm still here and I'm not going anywhere"  True Lindsey form.  The only time she cried was when she realized why her sister was so emotional at Lindsey making it to her game.  She wasn't thinking of herself, she cried because she knew her sister was in pain.  Oh, she is the most amazing person on this earth.  Instead of how I thought it was going to go with us breaking the news and all of us crying more tears and feeling sorry for ourselves we all left feeling better than we had in the 2 days since we had received the news.  I know this is how our Father in Heaven would have us feel.  He would not want us to dwell on the sorrow we are feeling for our loss but rather the joy of life we still have yet to experience.  Each day is a gift and a priviledge not a given.  I pray that as we move forward thru these next few days and weeks that we will all try to emulate Lindseys example of life, attitude, and love for others.  Make a difference for someone today in her honor.  Help someone is need or simply offer a smile to someone who is feeling down.  You will never know what that means to the other person but you will have done it nonetheless. 

I'm am eternally grateful for the love and support and outpouring of concern that has been shown to Josh and Lindsey and to our families.  We love you with all our hearts.  We will continue to pray for a miracle and for strength for the days to come.  Please continue to do so as well.

With love...and hope,

Julie

Lindsey Update

Dear Family, Friends, and loved ones.

 

It's been a season of peace and healing for us since Lindsey finishsed 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 optismistic 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 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 at IMED on 53rd.  They 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.  We were hoping that the 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.  We needed answers and we needed them right away.  They finally took her for her MRI and were preparing to do an EEG which measures the brain function and lets us know if there are any seizures occurring that we haven't been able to see.  She began having so much pain for the preparation of that test they had to stop and administer morphine, along with anti-seizure medication which essentially put her into a deep sleep.  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 ependymoma.  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 dead.  Indeed, the tumors have spread throughout her brain and there is no more treatment that can be done.  We knew that the radiation treatments were 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 conscienceness 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.  As 2 famillies that love Lindsey we all bonded in the face of what is to come.  We encourage visitors.  Please come and see Lindsey and Josh.  Keep them in your prayers and close to your heart.  The insurance company is being extremely difficult and we are enlisting an attorney to help with the situation. 

 

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.  Josh is not up to answering the phone so please return any questions via email here and I will answer them as best as I can.

 

As a beautiful and emotional sidenote:  Lindseys sister, Jessica, is expecting a little girl this summer.  They have struggled with coming up with a name and last night they made the decision to name her Lindsey Kae. 

 

With love (and a broken heart)

Julie