The Obituary

Graham Allen Johnston passed away Friday, July 15, 2016 at Kindred Hospital, Dallas Central at the age of 37.  Graham was born October 16, 1978 in Nacogdoches, TX. He was born with cystic fibrosis and he never let his disease define him.  As a child, Graham was active in all sports, but fell in love with soccer and golf and attributed these sports to his many healthy years.  He later went off to Kilgore Jr. College and then graduated from Texas State University (SWT) in 2002.  It was in these college years that he met and fell in love with his wife, Erin.  Never underestimate the power of a good band at a hole-in-the-wall place in Austin, TX; these two didn’t, and they were inseparable ever since.  They married November 10, 2007 in Las Vegas and their daughter was born the next year.  He was the recipient of a double lung transplant on August 24, 2010 that gave him a new lease on life and finally, a breath of fresh air.  Graham worked in finance and finally ended up in his dream job as a credit underwriter at Exeter Finance and later Nissan Motor Acceptance Corporation.  His personality was larger than life and his humor and attitude were highly infectious.  He never took a single moment for granted, making experiences and memories daily.  Graham is survived by his wife Erin B. Johnston and daughter Jordan K. Johnston of Grand Prairie, TX; father, Richard A. Johnston of Longview, TX; mother, Barbara J. Rehm of Mansfield, TX; brothers, Luke Johnston and Brent Johnston of Longview, TX; grandmother, Zelda Johnston of Longview, TX; along with many aunts, uncles, cousins, in-laws, nieces and nephews who all loved him very much.  Visitation will be held Friday, July 22, 2016 from 6:00 – 8:00pm at Blessings Funeral Home in Mansfield, TX.  The memorial service will be held Saturday, July 23, 2016 at 1:00pm at First United Methodist Church in Mansfield, TX followed by a graveside celebration of life at Emerald Hills Memorial Park in Kennedale, TX.  In lieu of flowers, donations may be made to the ROCK CF FOUNDATION 2990 W. Grand Blvd. STE M-21 Detroit, MI  48202 https://rockcf.giv.sh/  The family wishes to extend a special thank you to the staff of Baylor University Medical Center and Kindred Hospital, Dallas Central for their outstanding professional and personal care that Graham received.

Last Days

The last 3 days of Graham's life were as phenomenal as they could be.  Most people, when put on a drip of powerful drugs go in to some form of comatose state.  Not Graham, not my Graham, he used these drugs to make the most out of his last days.  Right before they began the Morphine, I held his hands and asked, "Are you ready?" and he hesitantly said yes. You could see the pain in his eyes that he wanted so deeply to stay, but knew he couldn't.  Once the drip started, he finally had some relief - and he never shut up for a solid 72 hours.  We laughed, we cried, we played Rummikub. He visited with family and friends and joked around with the nurses.  He even giggled and called it "awesome" when Uncle Jacob had the koozie finished.

I left him to go home on Wednesday for a long 3-4 hours.  When I leave all I can think about is him, my anxiety goes through the roof and I can't wait to get back to him.  I never know how much more time I have with him, I know it's limited.  When I returned, he told me he missed me...that he's loved the 24/7-ness of our life recently.  I share his sentiments exactly.  Wednesday night we watched a stupid movie and played more Rummikubs, joked around, and laughed - well, he tried too.  He had to switch from Morphine to Fentanyl due to nausea and it seemed to help a lot.  We went to bed around 1 and his last words to me, "Hey, tomorrow, can we play a couple more games of Rummikub and will you bathe me?  I love you, Goodnight."  Of course! 

He never woke back up.  It wasn't pleasant or peaceful, he suffered...all day long on Thursday.  His mom said it best, he's been struggling his whole life to breathe and it just comes naturally to him now.  I never knew how hard it would be to say, OK...I knew his wishes and I wanted them too - no more suffering, but it's so hard to not fight for someone who you love so much.  Slowly turning off things that helped save him - hospital grade C-Pap then his own trilogy, all while upping the meds.  I know he didn't feel any of the pain, and that gives me peace. 

24 hours after he told me good night and that he loved me, he passed away in my arms.  My life is forever changed, and not for the better.  I have barely laughed since and I have this weird quiet voice - I'm no longer loud, and I enjoyed being loud.  I can't stop staring off into space and I can't stop crying.  But I have to, I have to raise our daughter.  Things are happening and I have no one to tell, the one person who could REALLY comfort me is not here anymore.  Only time will tell if I will be OK, but I plan on faking it until I make it for our daughter, his pride and joy...SHE will be OK and she WILL remember how awesome he is - not was.

Graham...I still Love You.

Suffering and Ready

SUNDAY: Not good.  With his frustration of sleeping all day and feeling worthless, he decided to stop the Marinol.  This did help, he was up all day and trying to talk, but he began feeling horrible.  Tired, drained, uncomfortable - both mentally and physically.  And he's come to terms with where he is and since he is unable to go home to his house, he is ready to go to his Heavenly Home.

We fully believe that God has put us here on Earth for a purpose.  And once your purpose has been fulfilled, and you are ready, God will bring you back home.  Graham is struggling with what his purpose is that God has sent him down for.  Is his purpose not completed?  He claims that he is at peace, he believes me when I tell him we will be OK and that we are OK with him letting go. 

MONDAY: Worse.  He didn't sleep well and woke up massively struggling and scared.  His worst fear is suffering and dying while hurting...and it was beginning.  I can't thank our Nurse and the Staff here enough as to how fast they moved to make him comfortable.  Within minutes, he had a dose of oral Morphine and a Xanax (and I took 1/2 of my clonazePAM).  After 10 more minutes, another dose of oral Morphine.  5 more minutes, an IV push of Morphine...all this to keep him comfortable enough to start the Morphine drip.  This being the beginning of the end.  So I took another 1/2 of clonazePAM, I was not well...I COULD NOT control the snot.  And with Jordy on her way up, I know I needed to not scare her.  Just so you know, those 1/2 pills didn't work so I might have taken something else, probably not what I should have, but IT helped! 

I know so many of you wanted to come up, to either see Graham, be with Jordy and me; but it was important to keep it to just immediate family.  We THANK YOU SOOOO MUCH for your love and support.  And WOW facebook prayers were so wonderful.  As Graham looked this morning, no one - not a nurse, doctor, or family member, believed that he'd make it through the night.  Dr. Rosenblatt even paid us a visit and was SHOCKED at what he saw - perky Graham. 

MONDAY NIGHT: 90 degree turn to the positive side!  Prayers were answered and the Morphine drip kicked in.  Graham is very comfortable.  And true to Graham's form, when he feels good - ain't nobody sleeping.  We were up talking, playing Rummikub, watching TV (there was NOTHING on!!!) and just being us.  I'm sure all the cuddles and talks with Jordy helped.  After 1 day of golf camp, she's in love and she is now officially a Mini-Me of Daddy...soccer and golf.

TUESDAY: eh....his stats throughout the night proved he had a good night.  But he woke up with nausea and a headache.  He is a little more out of it today, but still comfortable and feeling OK.  As long as he can live the rest of his life out like this, prayers will be answered. 

#PrayforDallas

Once our home and now our adopted city has been struck with a devastating blow of hatred.  As we watched everything unfold on the news and as I heard from our friends at Baylor, I couldn't help but cry.  Explaining this event and the actions of 1 man to our daughter was hard.  How do you answer the question "why?" when you don't know the answer?  We have taught her to respect and admire all forms of law enforcement and she hurts that her Super Hero's were hurt or killed.  We have taught her to love all and treat all people and walks of life the same, and she doesn't understand why other's do not.  I realize that I will only have to explain to her that she will receive mistreatment because she is a female, and never have to explain that it will be the color of her skin.  But I'm with Jordan - why can't we love and respect all?  Is it really that hard?

Family Holidays

In our house, holiday's are meant to be with family.  Even if it is just us 3, no one is to be alone.  We have spent many a holiday in the hospital and this 4th of July was no different.  Thanks to one of Graham's oldest friends, Jordy was prepped and ready to celebrate with anything and everything to dress you up with.  And so she did.  From Graham's window, you couldn't see any fireworks; all of the sky scrapers in Dallas blocked those.  So the Daddy didn't get to see any, but Jordy and I went to the opposite side of the building and watched 5 different shows, 1 of them being at most a mile away from our Hospital.

The 4th was a little emotional for us.  It has been 1 year that Graham was diagnosed with rejection.  One year ago, they told us that he could live years in rejection.  But we were all proved wrong with his being so aggressive.  We also discussed that this is most likely Graham's last holiday.  Therefore we made sure it was memorable by dressing up, playing Rummikub, having a sleepover, and just be together.

You can't really tell, but Wolfy and Boog are dressed up too.

He's THRILLED to be a dress up doll - hahaha

The New Place

Turns out that everyone was right - this place is great.  All the nurses are very familiar with how to care for Graham and they do it all with ease.  Graham no longer has to stress that someone is not doing their job.  The hardest thing to get use to are our (or maybe just my) habits.  Because we are on an "ICU" type floor - one wall is all windows facing the hallway.  This leads to many awkward situations...I don't care, I live my life awkward.  But I do know that the person who sits at the desk next to the sink gets uncomfortable and this makes me smile.  I just wave as I brush my teeth, wash my face, fix my hair, wash my hands.  I might just start doing the fun stuff like pick my teeth and nose too!  For everything else, we can just close the curtain and have some privacy.

They are doing a great job with keeping him comfortable.  After convincing OT and PT that he doesn't need them, respiratory that he might deny a treatment or 2 or 10, the dietician that he has his own eating habits and there is no forcing anything down him, and all the other odds and quirks of Graham - he's at a level of comfort that he has only ever been when at Baylor.

The frustrating aspect of their awesome work...it is giving Jordy and me false hope.  His sleeping habits are showing that he isn't as well as he seems.  He is gradually sleeping more and more, resting his hurting body.  We checked his hemoglobin out of small hope that he was anemic again and a transfusion would fix it all; but no, it was 9.2, higher than it has been for awhile.  So I just sit and read next to him, or crawl in his bed and sleep with him, and if he's up - I'll watch any sports he wants to watch.  I even look up when he tells me to see something (this is something that I have always loathed in our marriage - I REALLY don't care about most sports moves) but I am willing to do anything to hold on to our final moments together.

Puppy Therapy

Graham has been a little depressed lately - who wouldn't be, right!  And so what better way to liven up a mood than PUPPIES!!!!  This actually excited him and he was looking forward to having the dog lay in bed with him. 

Because of Cystic Fibrosis and Baylor's new rule - Graham is put on "Contact Isolation" no matter if he has drug resistant bugs or not.  And because of this contact isolation, the dogs could not come into the room to see him :(  Of course this ruined his day...but we didn't let the dogs go to waste! Jordy spent the night with us and was able to receive the puppy therapy and it was awesome!  Pretty sure I want to look for a Blockhead Golden Retriever now - Micha was the bomb!

There is some good news however...at this new place, as soon as Graham is up for it, I am able to bring Sadie up for his very OWN PUPPY therapy. 

Meet Micha and Eli

Just look at that sweet scrunchie face and big paws that Micha has!!!