SwimStrong SKG

Posted on April 30, 2013 by

I really miss blogging about Stephen.  Lucky for me there are some ongoing things I want to share.

Stephen has so many friends that love him that the joy just keeps coming.  The Hilltop Aquatics Swim Team (HAST), held their Last Chance Qualifier meet in honor of Stephen. They had a big poster made about him that now hangs in the American Fork Fitness Center on the wall across from the track.  Micheal King, a long time swimming friend of our family, had a T-shirt and swim caps designed in Stephen’s honor.  These were also sold at the meet.  The proceeds from this far exceeded what was expected due to great support and donations.  Coach Janet Oles, (Stephen’s coach beginning at age 7) brought the funds to our house.  Micheal King later presented us with the proceeds from the swim caps.  Gratitude is not a big enough word for what we feel.  It is far more than the money, it is the gesture of love, appreciate, and desire to never forget our son that is so moving to us.  It is so wonderful to know that he won’t be forgotten.

One of the most difficult things going forward from his funeral, is the necessity of moving on with life.  You can’t live forever in that moment, but you hate to leave it, because you feel in some ways that you are leaving him behind.  It has helped to create new memories honoring him and having some pictures, t-shirts, swim caps and other things that help us know he is not forgotten.  I love to go to swim practice and see so many kids wearing an SKG SwimStrong cap.  I want to tell them “Awesome cap!  That’s my boy!”  I frequently see yellow or black SwimStrong shirts around town.  I love it.

I especially want the members of the HAST team, many that I don’t even know, how much we appreciate their support.  The funds raised have been used to purchase Stephen’s headstone.  We were able to get a really beautiful granite headstone.  We hope it will be put in by his birthday, June 9th.  If not, it will for sure be in by July.  We hope that it can be a physical reminder to us, and to you, of the difference you have made in our lives.  One day I went to Costco to pick up a canvas wrap photo of Stephen that I had printed.  When I picked up the box, it had a receipt taped to it with a note that said someone had already paid for it.  It was a HAST parent.  To whomever that was – thank you.  It was such a sweet gesture   I can’t help but smile every time I see that picture!

 

I have more to say, but I’ll save it for a couple of days so I can blog again.  Love to you all!

Posted in Uncategorized | 3 Comments

Viewing and Funeral Services

Posted on February 13, 2013 by

I hear there is a way to download your blog and so I decided it would be good to continue adding a little to it so I will have a complete story that I want to save and share with our children as they get older, and someday our Grandchildren can learn about ‘Uncle Stephen.’

Stephen passed away on Thursday afternoon, January 24th.  Friday we met with the funeral home.  We selected a beautiful pecan wood casket with a dark natural wood finish.  The lining was an off-white color.  Very simple and elegant.  We selected a spray of white roses and lilies, with an accent of bluebells for the flowers.  We were able to purchase 3 plots in the Alpine cemetery.  It’s nice to know now where Jeff and I will be laid to rest as well.     Part of the cemetery property in Alpine has a very steep slope to it and so it cannot be used for burials.  It has been used, however, for sledding.  Sledding at cemetery hill is a tradition in Alpine.  Josh liked the plot we chose for Stephen because he can go by and say hi to Stephen and then go sledding.  Stephen would be happy with that.

Sarah wrote the obituary for Stephen and she did a fabulous job.  Part of her training in school was to write press releases.  I think her skills helped her write a beautiful obituary.

We spent other bits of time writing short memories for the funeral, gathering together some photos of Stephen and some memorabilia we wanted to display.   Stephen’s dear friend (famous for the ‘see you again’ video he and Stephen made), Daniel Glade, came over and helped me put together a slide show of pictures that we could show at the viewing.  It was so wonderful of him.

Jeff and Jared got a new suit and the girls and I went shopping for something special to wear.  Lucky Nathan fit perfectly in one of Stephen’s suits and so he had the honor of wearing it to the funeral.  He looked great in it.   Josh is still growing so fast he got a Walmart suit!  It looked just great and probably won’t fit him in a month even though I bought it big.

Sunday evening Jeff and I went to the funeral home.  We had asked if we could dress Stephen in his burial clothing.  When members of the LDS church worship in temples, we wear special temple clothing.  The clothes are white to represent the fact that we must repent of all our sins through the atonement of Christ and be pure in order to return to the presence of the Lord.  In the temple everyone is dressed in beautiful white and there is no distinction made between wealth or status.  All are equally loved and valued by God.  If someone has gone to the temple, then we bury them in their temple clothing.  My parents had purchased all new temple clothing for Stephen.  As we arrived at the funeral home, I asked Jeff, ‘are you sure we want to do this?’  He said that he was certain he wanted to.  I was a little worried.  We had allowed the BMT Doctors to have an autopsy performed so that they could learn exactly what had caused his death.  We knew that Stephen would want that because he wanted to help those who came after him.  He had benefited so much by the cancer patients who went before him.  I just wasn’t sure how his body would look and how I would handle it.  From the moment we entered the room with his body I was overcome with a feeling of complete joy and happiness.  I am certain he was in the room with us and was letting me know how completely happy he was.  I couldn’t quit smiling the entire time we were there.  I didn’t want to leave when we were done.  He looked great and his body was just as cute as ever.   From that time on I have never been quite the same.  I still feel moments of intense and painful sorrow but when I think back on that moment, I can’t help but smile and know that he is happy.

Monday we went over to the funeral home about 4:30 pm.  We spent some time with just our kids and then we had invited family members to come around 5 pm.  The official viewing was from 6-8 pm.  What a wonderful, uplifting experience to be surrounded by family and friends who love you and love your son.  We heard the most wonderful stories of how Stephen had affected other people.  I was worried how we would hold up under such emotional circumstances.  I can tell you now, that the prayers of others, through the spirit of the Lord, absolutely carried us through this and the next few days.  I felt as though we were being help up by angels.   What a wonderful feeling.

Tuesday morning we woke up to a huge snow storm!  It was snowing unbelievably hard.  We laughed.  Stephen had done everything the hard way right to the end.  Not by his choice.  However, it was such a pure, white, beautiful day that it was fitting for him.  We had a short viewing before the funeral.  Then all of our extended family gathered with us and my father offered a family prayer.  It was a prayer of comfort and peace.  Following the prayer,  those who wanted to, came forward to look one last time at his body.  Our kids wanted to place a few things in the casket with him.  He had worn his ‘swimstrong’ band and a balance band on his wrist since the day we launched a ‘SwimStrong’ fund raiser for him.  The doctors took them off during the last few hours in ICU.  We put those in with him.  He had a small stuffed bear named Braun braun.  I sent it to him when he was on a trip following high school.  For some reason, that bear went everywhere with him.  It went on his mission with him, to college, and to the hospital for each transplant or surgery.  We decided Braun braun needed to go with him.  A small donald duck had been hanging in his car ever since he could drive.  One of Stephen’s hidden talents was talking like Donald Duck.  He could have been hired by Disney.  So Donald got to go.  And finally, we put his missionary name tag in because  his heart was still on his mission.  Then they closed the casket.  I reminded all of our kids, and especially myself, that his body was all we were laying to rest.  Stephen’s, spirit, that is, who Stephen is, was not in the casket but was rejoicing on high with family and friends and most importantly, the Lord himself.

The funeral was so wonderful.   The music was so beautiful and the talks were so comforting and inspiring.  Jared, gave a life sketch of Stephen.  He did a great job and captured the essence of Stephen’s spirit and personality in it.   Then Sarah and Jennie talked about some of Stephen’s wonderful character traits and shared some memories.  They were so strong and did a fabulous job.  Our brother-in-law Mike Hawks gave a fantastic talk on life and the plan of salvation.  Then Jeff and I gave a few words of thanks and our Bishop, Bill Hesterly spoke some incredible words of peace and comfort.  Lastly, Elder Corrbridge of the first quorum of the 70 gave a few thoughts.  We had been blessed to have Elder Corrbridge, on assignment from President Monson, come to Stephen’s room at LDS Hospital and visit with him and give him a blessing about 2 weeks before he died.  His support and love was so touching and it was really nice of him to come to the funeral with us.  He gave some great words regarding the blessings of the Lord.

We went from the church to the cemetery.  It had continued to snow all morning.  A few men had stayed in the parking lot the entire funeral just plowing and shoveling snow to keep the walks clear and the parking lot accessible.  I didn’t know if we would even be able to get to the cemetery. You have heard of police escort before?  Well we had a snow plow escort.  The city had a snow plow waiting for us.  First the snow plow went, then the Hurst  then the funeral procession.  We made it!  At the cemetery Jeff gave the dedicatory prayer which designates the spot as the final resting place for his body and asks for the Lords protection for it.    Following the prayer, some of Sarah’s friends had arranged a wonderful surprise   They had brought tons of yellow balloons.  They gave one to all of the cousins and a few others.  Then on the count of 3 we yelled ‘Swim Strong’ and let the balloons go.  It was so special and made each of the little children feel like they had participated in the funeral.

Following the cemetery, we returned to the church and the ladies in our ward had prepared a wonderful meal for our family and extended family.  We were able to visit and enjoy each others company.

It was a great experience.  Very emotional, very spiritual and very special.  It is a time we can look back on and draw strength from as we now go on and learn how to live without Stephen here.  Each person in a family is such a treasure and plays and important roll.  No one can take their place.  There is no way around the gaping hole that he left.  It is not easy but I know Stephen, and I know he wants us to be happy and enjoy life as much as possible without him.  We will miss him until we are together again but we know we will have the comfort and peace to make it until then.

Posted in Uncategorized | 4 Comments

Saying goodbye…for now

Posted on January 26, 2013 by

I want to finish what I started.  This will be my hardest post but I need to do this.  I started this blog to share information with family and friends.  Then I realized that it would be a great history to keep for Stephen.   Then it became therapeutic for me.  I had no idea how many people had begun following it and were praying, hoping, and pulling for Stephen.  Now it is a way for me to pay tribute to Stephen and to share the truth of Eternal Life.

Wednesday the doctors placed a catheter in Stephen’s neck that they could use for dialysis.  In order to do this they use a drug that paralyzes your body for 20 minutes or so.  It is very important that the patient doesn’t move at all because of the proximity to vital pathways in the neck.  After this was placed he slept peacefully.  They finally started dialysis about 3 in the afternoon.  During the dialysis the nurse continue to observe his unresponsiveness.  He wouldn’t open his eyes when asked and wouldn’t squeeze her hand.  The doctor had the dialysis machine stopped and they took him down for a CAT scan of his brain to make sure everything looked normal.  We were so relieved that all was OK.  That night I left the hospital for the first time in several days.  I went home and slept and Jeff stayed with Stephen.  Around midnight he became more alert and Jeff was able to talk with him a little.  After that he seemed to be in a heavy sleep.

Thursday morning they started dialysis again.  The doctors were hoping that removing  the overload of drugs and waste from his blood would help the kidneys and wake him up.  There was a freezing rain that morning and parts of the freeway were closed.  Because of this I didn’t leave for the hospital until 11 am.  While I was driving to the hospital with Jared, Maria  Jose, and Josh,  Stephen’s heart stopped.  They were able to revive him somewhat stabilize his vital signs.  I got to Stephen’s room as soon as possible.  Jeff was so calm and peaceful.  Many of the staff of ICU and East 8 helped us to understand what was happening and to help us and comfort us in any way.  My sister and parents picked up Sarah, Jennie, and Nathan and brought them to the hospital.   While they were en-route  the doctor met with us and explained that the tests they just performed show that his liver was also failing and that there was little hope left that he could recover.  When our children arrived we met with them in a room and explained what had happened.  The director if ICU came in and told us that they couldn’t sustain Stephen’s life for much longer.  We went into his room and we were all able to give him a kiss and tell him good bye.  He passed away a few minutes later.

It was a very sacred and personal experience for our family.  While it was a very difficult day, there were definitely many tender mercies from the Lord.  It was a tender mercy that I went home and wasn’t there to witness his cardiac arrest.  It would have been too difficult for me.  Jeff was blessed to be calm and peaceful through the experience.  It was a great blessing that Stephen was able to hold on long enough for his brothers and sisters to all say goodbye and be present with him.  There are other sacred experiences as well but these I wanted to share.

I want to thank all of you who have become so close to us through this experience.  Your faith and prayers have truly sustained us.  Your faith, fasting and prayers that brought about our Christmas miracle gave our family the most beautiful time together.  It was a time of happiness, peace and hope that we will treasure forever.  While Stephen’s body lost the fight with cancer, he came out the victor because he endured to the end with complete faith and trust in God.   He truly fought a great fight.  As parents, we couldn’t be prouder of him.  All of our children have been so valiant and have stood by his side and fought the fight with him.  I pray that I can be strong enough to follow his great example and endure to the end in righteousness.  We have no doubt that he is safe, happy,  out of pain and with loved ones.  We will see him soon and he will always be our son.  I can’t wait to hug him again!

Visiting will be held on Monday, January 28th from 6-8 pm at the Warenski Funeral Home (1776 N 900 E AF, UT 84003) and Tuesday, January 29th from 9:30-10:30 am with Funeral Services to follow at 11:00 am at the Fort Canyon LDS Chapel (890 N Heritage Hills Dr, Alpine, UT 84004).

The Griener Family, February 2012

The Griener Family, February 2012

Posted in Uncategorized | 29 Comments

Taking it one day at a time…

Posted on January 22, 2013 by

During the first few days in the ICU Stephen struggled to get enough breath, to sleep, and to communicate.  Despite all of this, as he has throughout this entire ordeal, he has shown great courage and determination   His goal was to get out of there as soon as possible and get that tube out of his throat!   Things were pretty stable other than not being able to sleep for more than a few minutes at a time….for three nights in a row!

After a rough night, Monday morning he took a serious turn for the worse and the medical staff determined that his lungs  had begun to bleed.   The first sign of this diagnosis was that his blood counts were dropping.  They then put him under a deeper sedation (finally!) so that he could relax and quit struggling to live with a ventilator tube jammed down his neck.  We were all thankful for that.  He was so tired and the constant feeling of trying to breathe through a straw was so draining both physically and mentally.

As the doctors tested and learned more of his condition they concluded with more certainty that Graft vs Host Disease was causing pneumonitis.  They decided to begin the Etanercept drug.   So Monday about 9 am they gave him a shot of Etanercept and gave him 1000 mg (1 g) of prednisone.

Today we did received some encouraging news.  Stephen’s x-rays look better than yesterday.  His Hematocrit (red blood count) has stayed the same for a few hours (25) and his platelet count is finally as high as they would like it to be (above 75).  He’s used up all the platelets they can get that are a match for him and so they have started giving him some non-matched but compatible platelets as well.

His kidneys are really struggling now.  Many of the drugs they are giving him are very hard on the kidneys.  He is also retaining a lot of water.  Normal functions are not clearing the water from his body so they may move to a temporary dialysis.    They are considering placing a catheter in his neck area tonight so that they can do dialysis in the morning.

We feel encouraged and hopeful.  The doctors told us to understand that he is not out of the woods but is definitely moving in the right direction.  They told us to take it one day at a time and not try to look any farther ahead than that.  We are grateful to all of you who have prayed with us, and for us, throughout the day and night on Monday.  The doctors told us that he could still recover fully from this setback if the drugs bring about the desired results and if he continues to make forward progress.    We know that through the power of God and your prayers and faith that we are being carried day by day.  We seriously don’t know how we are walking, talking, and functioning but we are!

Jeff

Posted in Uncategorized | 5 Comments

About the same

Posted on January 19, 2013 by

Quick update:

Stephen is still in ICU.  He has stayed about the same the last couple of days.  He’s getting help breathing, using a feeding tube and receiving steroids with his regular medicines.   They have had to make a few adjustments.  His bronch tube was too low and was causing him to cough so that was raised, his feeding tube came partially out and so they replaced it today and they have been making constant adjustments to the breathing machine (don’t know the name for it!).  Tonight I feel like everything is in place for him to rest peacefully and hopefully do some serious healing.

Each day they are doing x-rays, blood tests, kidney tests, and more and more tests.  They are very carefully monitoring the interaction of all the medications and the effect on his organs.

We really need these steroids to work!   The doctors are continuing to stick with the steroids as the treatment plan for the next couple of days.

I’ll post if anything changes.  Have a great Sunday!

 

Posted in Uncategorized | 2 Comments

Hope is shining!

Posted on January 18, 2013 by

Dear Family, Friends, and supporters of Stephen all around the world -

Just a quick update.  Stephen is showing some signs of improvement this morning.  They have his oxygen down to 40% .  His breathing patterns are better and he is more relaxed.  They gave him some sleep aids and he was able to get a lot more sleep last night.  He will get a chest x-ray and further testing later today (they do it everyday).   I may post again then.  It is just too tiring to call and text more than a couple of people.

The Cancer doctors are researching a medicine that can be used if the condition worsens. His condition has very little data on it and so it will be a difficult decision whether to use it or not.  For those of you who are in the medical field or med students, the drug is called: etanercept.  The medical condition that they think Stephen has is called: GVHD IPS (idiopathic pneumonitis syndrome or in some articles, idiopathic pneumonia syndrome).  It is a rare but documented type of graft verses host.  If he continues to improve with the steriods, then they will not need to use the drug.  Praying that the steroids will work!!!!!!  Go Steriods GO!

We are praying and exercising our faith in the power of the God who can make the lame walk and the blind see.   I know he can and will heal Stephen if Stephen’s time on this earth is not complete.  We have receive indisputable evidence that God is aware of us and is aware of Stephen.  Knowing that God is all-powerful, and that He is aware of our situation, we can conclude with peace that His will, will be done.

Much love to you all from LDS ICU

Posted in Uncategorized | 2 Comments

A new room in ICU

Posted on January 17, 2013 by

Wow.  A lot has happened since I last posted.   After the last post, Stephen’s throat began to heal but then he seemed to stay the same for several days.  He could swallow, but would often throw up what he drank.  His throat was irritated, he started coughing, and felt short of breath.  He had some water retention but it got better with meds and less fluids.

Monday morning he had been up and was really panting hard while getting back into bed.  I hooked up a spare oxygen monitor and checked his oxygen level.  It was at 75.  Everyone at the hospital did a great job of reacting quickly, getting him on oxygen, giving a breathing treatment and other supportive measures.   Doctors and Nurses had listened to his lungs multiple times a day and they were completely clear sounding so pneumonia wasn’t suspected.   Cardiology came up and did an EKG and then Radiology took him down for a CT scan with contrast.  The CT scan showed major involvement of fluid in the air sacs of his lungs.  Basically his entire right lung and over 50% of his left lung had fluid in the air sacs.   He was working so hard to breath and his oxygen levels were struggling to stay up even with oxygen support.  He was taken in for a bronchoscopy to look at his lungs and take some samples of the cells.  These were sent for testing.  The decision was made to move him to the ICU for more support.   In ICU the pulmonary doctor checked him and talked to us about his situation.  He was taking about 80 breaths per minute.  The doctor explained that he was exhausting all his physical and mental energy breathing.  He also showed me how his chest and stomach were moving opposite each other as he struggled to breathe.  He felt like we should move toward putting him on some assisted breathing.  He didn’t want to wait until it was an emergency.  We agreed and by they time they were ready to intubate him he was really getting tired.  Neither Stephen nor I expected how difficult this would be.  I’ll spare you the details but it was really rough for a few hours then.  Luckily Jeff arrived as this all began.  After Stephen’s body adjusted to the sensation of the tube in his mouth and throat, lots of medication to calm the body, and Stephen learning how to breath through a straw, things began to settle down.  It took an incredible effort on Stephen’s part to get his head wrapped around his current situation and to start fighting.  He did a great job.  For the first 12 hours or so he would cough fluids up from his lungs and would have to have assisted suction.  To begin with, it was about every 15 minutes.  Then, about every 45 minutes, and now he only needs help with coughing or suction every few hours.  He did an amazing job.  Much better than me – I ended up with a migraine and had to go sleep in his old bed in the BMT for 5 hours till I could see straight again!  Good thing Dad’s are tougher than Mom’s at some things.   The ICU has a great team of doctors and nurses.  They have had Stephen up walking twice (it takes 4 people to walk with him), they had him sit in a chair twice, and have been very helpful and supportive of any breathing problems.  The source of the Pneumonia is the real question.  Labs, cultures, and other tests have all come back negative.  There isn’t a virus, bacteria, fungus or parasite that they can blame the pneumonia on.  Given these results, the conclusion is that the pneumonia is a result of graft vs host disease.  One of the possible symptoms, (a rare one of course) is pneumonia for no-good-reason syndrome.  It is actually an inflammatory response caused by the battle with the donor cells.   It is treated with high doses of steroids.  So tonight, they started him on his first dose of steroids.    I’m writing this with my limited understanding (and lack of sleep) so if my story changes tomorrow, you’ll know why.

The BMT floor has quotes hanging  on the walls.  One has become my favorite this week.  It reads “When you think about quitting, think about why you’ve kept going this far.”  Cancer patients are endurance athletes in a sport that isn’t so fun.

Stephen has received a couple of very special Priesthood blessings in the past week.  They have really given him strength to face his current situation.  We are so thankful for your continued prayers.  I have thought about it several times today.  I’m so involved in what is going on I can hardly form a prayer longer than a few words.  I find great comfort in knowing that all of you are able to pause and pray for us.  We love you!

Posted in Uncategorized | 7 Comments