Category Archives: Steven's Journey

Memorial Day Weekend – Keeping Steven Close at Heart

On this Memorial Day weekend, we remember Steven and his valiant fight against cancer and infection.  What an amazing kid.  I thought the best tributes to share with you would be those written by his mom, all of which follow for you here.  They will take you from his final week and beyond, and into healing in the form of a great new dog named Bubba.  The healing part doesn’t come easy … it is with baby steps that parents try to move forward after the loss of a child.  I am heartbroken for them, wishing there was something we could do to help, knowing it will just take time to get through. 

I remember when my friend Doug, lost his little girl suddenly to a condition known as ITP, where the spleen attacks the blood.  Another classmate of mine from high school, Charise, had also lost a child and told him his daughter “will be the angel that watches over you now from a much better place.”  She said it’s hard to think of God’s reasoning sometimes, but believes He must have an important plan in place for them.  She told him nothing can take away the pain of losing a child, letting him know they still miss their son every day.  She also said they take comfort in knowing God may hold him in His hands, but that they will always hold him in their hearts. 

And there is where Steven will always be:  in all of our hearts. 

HIS JOURNEY’S END

For those of you who haven’t seen this loving account of Steven’s final week, I want to share what his mom, Denise, had written about it after his passing:

“Steven told me on Monday, May 17 that he was tired. I asked him if he was ready to give up and he said yes. I asked him if he was ready to go to heaven now and again he said yes. Tears started streaming down both of our faces and I told him I was too selfish to let him go. I told him that he had beaten the candida infection and begged him to fight just a little longer for his dad and me. He finally nodded ‘okay’.

The next day, Steven again told me ‘I just want to die’…and again I begged him to keep fighting. On Wednesday I could see that the Sepsis infection was taking over, Steven had lost the fight to live. On Thursday the doctor told us Steven’s liver was shutting down. We couldn’t get ahead of the sepsis infection or the DIC. The doctors asked us if we wanted to revive him if his heart should stop. Steven had already given us his answer earlier in the week so we told the doctor that we would let him go peacefully.

Up until the bitter-sweet end, Steve and I held out hope that the antibiotics would kick in and save his life. When Steven’s heart stopped at 4:43am on May 21, 2010, he was surrounded by his dad, his brother Rocky, his sister Whitney and me, his mom. We took off his bipap breathing mask and saw a smile on our beloved son’s face. I have no doubt he saw Jesus take him by the hand. That image will live forever in my mind. His eyes were fixed and happy and his beautiful red lips and white teeth were smiling at us. I kissed him one last time.

Steven was a miracle. Please know that the cancer was gone, it was the sepsis infection and DIC that took him away from us. He is finally free from that hospital bed and for the first time in months, I don’t have to worry if he’s in pain.

Thank you all for praying, we had 10 more weeks than we thought we’d have with him and it meant the world to his dad and me.”

Steven with that great smile, hangin' loose in Hawaii before cancer struck ... his beautiful smile will be missed.

A MOTHER’S PRAYER

I also wanted to share with you her plea for reassurance that Steven was indeed okay that was answered in a most interesting way … A heartwarming story of signs that are given when asked.  This story was shared with everyone at Steven’s services.  FYI – You might need a tissue after this one!

“Today as I sat with Steven I cried. I cried so hard I thought my insides would burst. I prayed for a sign. Please God, give me a sign that you have Steven with you and everything is okay. It’s not fair! You gave Mary a sign three days after Jesus died…where’s my sign? You took my son too, and it’s been three days…where’s my sign? Please tell me my son is okay and he’s with you!

I prayed that prayer and asked that question over and over. After pacing or sitting there with Steven for 3 hours I decided to leave and go down the street to my mom’s house to eat some spaghetti she’d prepared. My sister Dena was there and handed me a sealed envelope. Attached to the front of the envelope was a note from one of Steven’s teachers.

‘To Steven’s family,
One of Steven’s assignments in 7th grade was to write a letter to himself that he would receive when he was a senior. The letter has been locked in the vault since the day he wrote it and, as promised, nobody has read it. I pray that it brings you comfort and joy.’

I trembled as I held the letter, feeling sick to my stomach about what the letter would say. I called Steve. We decided to meet back at the funeral home and open it there with Steven. My hands were shaking as I opened the sealed envelope and started reading this letter dated May 18, 2006. His dad and I decided to keep the contents of the letter private but we wanted to share the ending. The letter had us laughing out loud until we got to the very end and it brought me to my knees… his last sentence read…

‘Live and have a good life and try to live as long as you can.’

And that’s just what he did. He lived a good life and he tried to live as long as he could. Up until the very end … until he was too tired to lift a finger or take a breath, Steven tried to live as long as he could.

Thank you God for answering my prayer.  I received a letter from my son today that I didn’t know existed. That was my sign. He does hear a mother’s prayer and he gave me my reassurance that I’d asked for. I can go to bed tonight knowing Steven is fine. I get one last day to sit with him and then I can let him go.”

Steven's beautiful red coffin surrounded by gorgeous flowers at his services on May 26, 2010.

A BUBBA FOR THE FAMILY

This touching account of the new family pet was shared by Denise this weekend:

“The twins are having a really hard time adjusting to Steven’s passing, especially Jaxie. The twins, who are now 7, have always begged for a puppy but I never had the time to deal with a dog. I was always too busy with my job to seriously consider getting the twins a pet. In fact, my 4 adult children were only allowed a dog or two growing up because I was too busy working and didn’t have time to deal with it. I also couldn’t bear the death of a pet. I went through several pets as a child and was devasted by each of their passings. I’m the type of person that lacks ‘coping with death skills’ therefore I’ve always avoided bonding with pets as an adult.

Steven taught me that the most important job I”ll ever have is to be a good mom. It’s my new focus. Maybe a dog would help our family heal. We decided to get a male dog and name him Bubba. The twins called Steven ‘Bubba Steven’ so maybe having a Bubba to love wouldn’t be a bad idea. On Thursday we started dog shopping. I warned the twins that we are ONLY LOOKING and that it would be a couple of weeks before I’d be ready to bring a pet home. Ha! Famous last words spoken before we entered the Humane Society.

In the top row, first cage was a silky haired dog with the cutest face. The twins were drawn to him like a magnet. they looked at the other dogs on display but always went right back to the first one. Jeff and Rock were hoping for the Cocker Spaniel in the end cage on the bottom row. But for some reason, the twins insisted our search for Bubba was standing in that first cage. I looked around at the other dogs and he was the only one with a red collar. He was also the only one that didn’t bark at us when we walked in. He was quiet, loving, and seemed to be smiling.

We decided to take him to an interaction room and shut the door. He couldn’t stop licking our faces. He snuggled up to me like he was home. I looked over at Jeff standing outside the observation glass door and, like a 7 yr old, I begged him with my eyes to let us take Bubba home.  Our search was over.

We filled out the adoption papers. Immediately we were approved but we couldn’t pick up Bubba until the next morning because they had to place his microchip. We all were so excited. I never heard him bark the whole time we were there. We picked him up the next morning, signed the adoption papers and so begins our life with Bubba.

He’s 18 months old, looks Havanese in the face with a West End Terrier/ Wheat mix. He’s already house trained. We’ve had him home since Friday and I still haven’t heard him bark. The twins said he barked once when the doorbell rang.

As was Bubba Steven, Bubba never complains, he’s always smiling and is the most loveable dog I’ve ever met. He doesn’t let me leave his side. He must sense my grief. His favorite spot is resting his head on my heart. I watch him like a newborn baby. The twins are extremely excited, and so am I… the good mom.”

Jaden and Jaxie greet Bubba, who is wearing a red collar as if sent directly by Steven!

ORDER YOUR TEAM STEVEN ITEMS – PROCEEDS GO TO THE FAMILY

Below are the links to order your Team Steven items.  Touched by Steven’s story, Team Steven member Amanda Kramer created all of these wonderful ways to promote our Team Steven network and support Steven during his fight and beyond.  All commissions/proceeds from your purchases will go to the family.  I am including the links on the sidebar as well.  Additional information for donations to the family to help with medical expenses are also listed on the left side of our blog here as well. 

Team Steven Items (clothing, mugs, water bottles, bags, hats, teddy bears, etc.):

http://www.cafepress.com/punkpixiecr/7162821 

http://www.cafepress.com/punkpixiecr/7162827

Team Steven Commemorative Items (dog tags, necklaces, badge holders):

http://punkpixiecreations.com/category_41/Team-Steven.htm

 THANK YOU

Once again, from the bottoms of our hearts, we thank you for your endless thoughts, prayers and support during Steven’s journey.  Your words, cards and love all provided motivation for Steven to hang on a little longer, to continue to try to live as long as he could.  They also provided much comfort for his family.  We all appreciate it more than you know.  Thank you for loving our boy.  He was such a gift.  Let his gift of appreciating life and believing in miracles continue to live on in you.  Don’t ever take anything for granted.  Fight for what you love.  Love what you have.  Live a good life and love others.  That’s really what it’s all about.

Here is a copy of Steven’s obituary that was in the Bristow News:

Today We Laid Our Sweet Warrior to Rest

Saying goodbye … never an easy thing to do.  Today was the day that we held Steven’s services and celebrated his life.  But saying goodbye?  No … I don’ t believe in that.  I know better.  I know that those who have to leave us live on in our hearts, and we don’t have to say goodbye … they are still with us in a different way, and we will see them again.  Someday.

We gathered at the Bristow Freeland Center in Bristow, OK, the same place where his benefit concert was held not long ago – so we filled an entire concert hall with wonderful people who all came to show their love for Steven!  Many people wore red in his honor, since it was his favorite color.  Red Team Steven bracelets were donned by many, and gorgeous floral arrangements surrounded his beautiful red casket on the stage.  Pictures of Steven from the time he was a baby through his 18th year played on the screen before us, and we all got to see him once more as he grew from a boy into a man while the music played.  One slideshow ended with Bad English’s “When I See You Smile.”  Steven always had the most beautiful smile, and that is the smile that shines on in our hearts. 

I sat directly behind Steven’s dad, Steve, his mom, Denise, and my brother, Jeff – Denise’s husband/Steven’s stepdad.  There was a moment where Jeff put his arm around Denise’s shoulder and pulled her closer to him as she cried, and he then reached his hand over and squeezed Steve’s shoulder.  My tears started anew as I reflected on their journey together, and how tough this has been on everyone.  This is not the way we wanted things to end, but in realizing it’s how things had to play out, there was some comfort in the fact that he lived longer than was supposed to be possible.  Steven’s will to live inspired many and gave his family a chance to spend some important time with their son:  10 more beautiful weeks.  He turned 18 and became a man.  He had one last Mother’s Day with his mom.  He got to spend time with his beloved relatives.  He was surrounded by loved ones when he peacefully left this Earth.  Steven was incredible.  He was a miracle.  He brought families closer together in love.  Our families.  Hopefully yours, too.

At the graveside, we looked upon his beautiful red casket and felt the peace surround us.  After a brief dedication, we released red Team Steven balloons into the air, as we sent up our prayers and love for our sweet warrior, watching them fly away and eventually disappear.  It was poignant and hopeful, peaceful and pure.  It was a final moment where we got to send up love and celebrate his beautiful life together.  It was perfect.

Team Steven "Can You Hear Us Now" Balloons released at the end of the graveside service.

I have been a huge fan of the TV show, LOST.  As the series finale came this past weekend, so many of the themes reminded me of our sweet Steven.  It was about purpose and faith, testing and redemption, soul connections, letting go and moving on … together.  Steven and his parents were tested by his illness.  They all maintained their faith, and Steven’s will to live as long as he could was one of the most amazing and inspiring things for so many to witness.  A little piece of all of us found redemption in our love for that beautiful boy.  Today was a day of family, of coming together to let him go … physically, at least.  The beauty of it is that Steven will stay with us, and the lessons he taught us about embracing life will remain.  One day, he will be reunited with the wonderful souls who loved him so during his time here with us, where everyone can move on … together.

Thank you for your thoughts and prayers of support that have been constant.  Once I return to California, I will share with you a few things about his journey’s end, along with a lovely story about how his mother’s prayer was answered.  I will also be posting a link for you to order any Team Steven items you may want (there are great hats, shirts, bags, cups, etc.) – all proceeds will go to the family.  If you would like to sign the online guestbook at the funeral home, you may do so via the Steven Wilson link on the funeral home’s website:  www.hutchinsmaplesfuneralhome.com – following is Steven’s obituary information.  Thank you again for your love.

Steven Tyler Wilson was born April 12, 1992 to Robert Steven Wilson and Tela Denise Sargent in Tulsa, Oklahoma. He departed this life in the early morning of May 21, 2010 at the age of 18 years.

Steven attended Bristow High School where he was a Junior. As a child, Steven attended the First Church of God and later the Bristow Christian Center. Steven has been an active member of the High School Academic and Debate Team. As well, he enjoyed history, video games, paint balling and listening to his zune player. Steven will be most remembered for his beautiful smile; he will be missed by all who knew and loved him.

Steven is survived by his father, Steve Wilson of Bristow; his mother, Denise Sargent and her husband, Jeff, of Tulsa, Oklahoma; Paternal Grandparents Bob and Bonnie Wilson of Bristow; Maternal Grandparents, Mike & Melba VanOrsdol of Bristow and Phyllis Whitehouse, of Bristow; two brothers, Rocky Adcock of Tulsa, and Ryan Adcock of Jenks, OK; three sisters, Whitney Whitekiller of Tulsa, and Jaxie and Jaden Sargent of Tulsa; two nieces, Shyanne Adcock of Jenks, and Kaydence Whitekiller of Tulsa; as well as numerous aunts, uncles and cousins.

Services were at 1:00 pm today, Wednesday, May 26, 2010 at the Freeland Center in Bristow with Reverend Wayne Gemmill officiating; assisted by Merlin Mosher. Interment followed in Bristow City Cemetery.

Our Sweet Warrior Has Gone Home – Steven is at Peace

For those of you who are not on Team Steven on Facebook, it is with an extremely heavy heart that I tell you our dear Steven Tyler Wilson passed away peacefully this morning at 4:45 a.m.  His Aunt Dena said she knew after seeing him late last night that it was time to let go – he had fought so long and was so tired.
 
Thank you so much to all of you wonderful people who have followed Steven’s journey so closely and who have extended such compassion to Steven and the family during his brave battle.  Your support, cards, healing thoughts and loving prayers shared during Steven’s valiant fight against cancer and infection helped keep his spirits up and showed us all that anything is possible.  Steven taught us all lessons about the beauty of life, the gift of people who truly love us and what it means to never take anything for granted. 
 
This morning on my way back to Tulsa, I have been touched and frequently in tears at the airports today when reading all of the messages on Facebook of how Steven has inspired several of my friends along with many people I don’t know at all who grew to love him (I write you now through blurry vision from Phoenix Sky Harbor airport, as I didn’t have time to update you before my flight).  Steven has been such a gift to me and to our family.  That boy was so amazing, and will live on in all of our hearts.  I hope you will keep him in yours, too, and never forget whatever lessons you took from his brave journey.
 
We now ask that you please pray for his brave parents, who have been by Steven’s side every step of the way, and for all of the family members who have been affected by this loss.  Please keep everyone close to your heart during this difficult time and send loving thoughts.  It is time for peace and comfort.  
 
DONATE
 
If you would like to donate to Steven’s benefit fund, you may do here on our blog page via the link on the left hand side, or simply send a check to:
 
Steven Wilson Benefit Account
c/o Sharon VanOrsdol
Community Bank
P.O. Box 1020
Bristow, OK 74010
 
SEND LOVE
 
If you are on Facebook, feel free to add your thoughts and love to the Team Steven wall.  Or if you would like to share your stories of how Steven inspired you, cards of condolence may be sent to:
 
The Steven Wilson Family
c/o Denise Sargent
10111 S. Sandusky Ave.
Tulsa, OK  74137
 
Again, we thank you for all your support and love through Steven’s tireless journey.  Your support and love has meant more than you know.  Thank you for showing up and showing love to our amazing boy.  Remember this quote:  “Look at everything as though you were seeing it either for the first or last time.  Then your time on earth will be filled with glory.” – Betty Smith, from A Tree Grows in Brooklyn
 
Steven Tyler Wilson 4-12-92 – 5-21-2010 
 
Rest in Peace, Sweet Warrior.
 
In closing today, I would like to thank the music of The Eagles, which happened to be on my iPod during a difficult flight, and has offered the comfort of an old friend.  Keep in mind this guided meditation by Patricia Ellsberg as you think of Steven in your days to come and appreciate the beautiful life you live:
 
Open in gratitude …
 
… for the breath that nourishes every cell in your body and has sustained you from the moment you were born.
… for the miracle of your body that, despite whatever weaknesses or limitations, serves you and allows you to sense the wonders of the world.
… for your brain that coordinates all the functions of your body without your even being aware of it.
… for consciousness that allows you to perceive, feel, and be amazed.
… for the eyes that allow you to see the abounding beauty that surrounds you – colors and shapes, the face of a loved one.
… for the ears that enable you to hear birds singing, wind rustling in leaves, words people say to you, and the laughter of children.
… for the sense of smell that allows you to enjoy the fragrance of flowers, the scent of fresh air, your favorite food.
… for your mouth and tongue that enable you to taste the fruits of teh earth, to enjoy a ripe peach or chocolate melting in your mouth. 
… for the skin that protects you and yet allows you to touch and sense teh world, feel warmth, coolness, softness, and the touch of a loved one.
… for your heart that beats faithfully your whole life, from even before you were born.
 
Open to a sense of wonder and gratitude for the amazing gift of being awake and alive in this precious human form.  The fact that we exist or that anything exists at all is a wondrous mystery.  We all live in the midst of a miracle.

URGENT! Thoughts & Prayers Needed – SERIOUS Liver Problems

Today Steven really needs ALL of the thoughts, prayers and good energy you can muster!  THINGS ARE VERY SERIOUS.  Please direct it all toward his liver!  With all of the infection he has been battling, sepsis has set in and his liver is fighting to survive.  Steven is fighting to survive.  PLEASE send lots of love his way.  The amazing power of healing energy and prayer has surprised us all on more than one occasion, and Steven once again needs your love RIGHT NOW! 

Yesterday Steven got another CT scan because his white blood cell & calcium levels keep rising, yet his albumin and hemoglobin keep dropping, so they knew something wasn’t right. The doctors have been working really hard to find the missing link. They wanted to revisit his abdomen area because his body keeps fighting an infection from something/somewhere and the Infectious Disease doc is exploring all possibilities. Steven has been on several antibiotics and was mostly lethargic yesterday. His body can’t recover from the Disseminated Intravascular Coagulation (DIC – inflammation in the body creating bleeding and coagulation issues, often caused by sepsis) which has been caused by the infection until they get rid of all the infections. Poor guy has been getting tired and discouraged. Knowing everyone is out there praying for him has helped.  We really need those prayers more than ever.  Please lift him up in light and love now. 

I have been dealing with deadlines and travels and have not been able to update this blog as frequently during the past few weeks, and Steven was making progress on a daily basis.  Some days were steps forward combined with steps back, but always moving forward in some capacity.  They never had to do exploratory surgery, as CT scans showed no tear or perforation in Steven’s bowels or intestines. Instead, they placed a drain tube in Steven’s tummy (just like a peritoneal dialysis tube) to drain the fluid and flush it with antibiotics.

There was a rind of fluid that extended from his pelvis to his chest. In theory, the surgeon thought that at some point (probably back in February) Steven had a perforation in his small intestines and the body healed itself, but leaked outside the intestine. They think the body, trying to protect itself, sealed off that area allowing that pocket of infection to grow. All the anitfungals in the world would not make it go away unless you treat it directly, which is why they needed the tube to treat & get rid of it so his body could heal and recover.

A MESSAGE FROM HIS MOM

Denise said this recently to all of you who have been following his journey on Facebook after they made the decision to place the drain tube:  “THANK YOU ♥ I just want to say how blessed we are as a family to have the support of thousands of people. Steven has received so many cards, gifts, and the money going into his fund…. it’s all so kind of you. Your prayers, positive thoughts & support are what have kept us going day after day, week after week, month …after month. I never thought when we entered the hospital on Feb 15th in St Louis that we would begin the journey that has become an emotional nightmare. Thank you … those words seem so inadequate, thank you from the bottom of our hearts to the tip of our prayers, it’s an awesome feeling to have so many people sending positive thoughts and prayers for our son. Good night Facebook family, may tomorrow bring a miracle in the form of a simple drain tube.”

If you would like further background on Steven’s journey the past few weeks, I have included updates from her during the past few weeks.  Meanwhile, THANK YOU for your continued love, thoughts and prayers.  Please continue to send them to Steven and the family.

Thursday, May 6

Steven came through his procedure just fine today, on this National Day of Prayer. He didn’t have to go on the vent and is breathing on his own. He already looks better than he did yesterday. Let the healing begin!

Steven had a good night however, he never gets quality uninterrupted sleep. I think it’s caught up with him because he’s been asleep now since 7:30ish. His lung X-ray looks better today so we pray that his lungs continue to recover. He’ll get dialysis this afternoon, his new drain tube is doing its job removing the infected fluid as they’ve had to empty the drain bag several times now. Hope to start Steven back on the NG feedings in a day or two and that he’ll get more and more healing slumber and not be in pain anymore. His heart rate is still really high and not sure of what’s causing that. He wanted to talk about his life yesterday and where do we go from here. He was relieved to know the doctors may have uncovered the mystery of his tummy fluid. He’s so precious… I’m so thankful to have him.

Sunday, May 9 – Mother’s Day

Last night Steven told me he wanted to have pancakes with me for Mother’s Day. So today, when his doctor came in, I asked if it would be okay if Steven had pancakes with me this morning, he said sure! So I trot down the hall, take a shower, go to the cafeteria and come back up with 2 breakfast trays of pancakes…and t…he nurse tells me she had to call the doctor to make sure Steven could have the pancakes and the doctor said no, he misunderstood me… he thought I just wanted Steven to watch me eat pancakes? (um, ok, I bet his wife has a really hard time dropping subtle hints.) Poor Steven, he had his heart set on taking a bite of pancake. 😦 Happy Mother’s Day to all you wonderful moms out there!

Tuesday, May 11

We found out this morning the infection is still in the tummy fluid. It took a few days longer than last time they cultured it to grow the yeast so that could mean they are making progress on it. They will do a CT scan tomorrow to see if the capsule of fluid is collapsing and healing or if they need to flush it with medicine. His lungs are so weak, it’s hard for him to cough all that junk out and when he finally stops coughing, he’s exhausted. His heart rate is still pretty high. He doesn’t feel that well, he’s felt nauseated a few times this morning. Please continue to pray for strength and for his lungs to get better. Thank you!

Wednesday, May 12

Steven has slept most of the day today. According to the doctor, his lungs are getting tinsy bit better each day. He got regular dialysis along with 3 units of blood this morning. We are waiting to go to CT scan to see if the drain tube is draining all the areas in his body. If it’s not, they’ll need to place a tube in… each pocket that’s not connected to this pocket of fluid. (I hope that explanation made sense.) He looks stronger to me…but I can still beat him in arm wrestling. 😉 As always, thank you all so much for your prayers, the cards, and all the wonderful Mother’s Day wishes!! Sometimes it takes me a couple of days for something to sink in….I never said thank you! Please know that my mind is in a constant state of ‘thank you’ even if I don’t post it.

Thursday, May 13

The CT was done this afternoon. We should get full results tomorrow. His potassium level was too high so he is getting dialysis right now along with 2 more units of blood. His heart rate is really high and his blood pressure is dropping. I don’t think they’ll be able to pull as much fluid off of him as they wanted to his blood pressure won’t tolerate it. His platelet count is really low and he’s losing a lot of blood in his stool today. After dialysis is over (around 7:30pm) he’ll get platelets to hopefully stop the bleeding. His white cell count is high so we know his body is fighting an infection of some sort. One of the docs started him on an antibiotic today that he hopes will take care of any bacteria infection he may have.  They really don’t know what’s wrong with him, but they won’t stop until they figure it out. He went without the bipap for about an hour this morning. His lungs are slowly getting stronger. His body is zapping the calcium out of his bones so he may be getting medication for that soon. It’s always 2 steps forward and 1 1/2 steps back. Pray on!

Friday, May 14

His bleeding stopped after receiving platelets last night…that was a huge relief! His underlying issue is the infection which they are doing everything they need to do to make it clear up so hopefully when the infection is gone, everything will return to normal. He’s not getting dialysis today, he’s been breathing fine without the bipap mask since about 10:45 this morning but he will have to put it back on at night. His lungs continue to slowly improve. The CT shows a dense area in the lower left quandrant, they think it could be irritated lymph nodes from the infection. Steven is ready for wheelchair rides again. I’m going to ask the doctor today if it’s ok. His spirits seemed to wane this morning, I know he’s getting tired of being in the hospital, please pray for continued strength, healing and uplifted spirits. Thank you!

Steven had a great afternoon and evening. His lungs have improved so much today they can hear air in the lower part of the lungs tonight! He’s still without his bipap and taking really good deep breaths. The nurse can even hear those much welcomed gurgling/rumbly sounds in his tummy areas which is usually quiet…but you didn’t need a stethoscope to hear it as I had already heard it earlier in the day as I was admiring his new bed. He got a clinitron rite-hite air fluidized bed. Google it. Seriously, the nurse might find me curled up by Steven’s feet like a dog. Today was a 2 steps forward day!

Saturday, May 15

Steven is chillaxin’ today watching Joe Dirt on his DVD player. Still breathing fine without the bipap. He asked for milk this morning….not just any milk, he asked me for ‘the natural white kind’ which means don’t give him 2% skim milk. 😉 He took a few sips and then wanted some water. His coughs have been very productive which will help keep his lungs clear. He’s getting regular dialysis today, he’s been urinating a lot lately so his kidney is still able to rid his body of fluid but it doesn’t clean his blood. That’s okay, we’ll take that! So far we’ve managed to hang on to those 2 steps forward from yesterday. I didn’t wake up until 8:45 this morning!! I grabbed my suitcase to head for the shower and as I passed the nurses desk I jokingly scolded them “I can’t believe you guys let me sleep this long”! They told me I was family now. 🙂 Yep, it’s another good day.

Sunday, May 16

Another great day in the corner suite. Lungs continue to improve and he’s been exercising his arms and legs on his own. He’s still off his bipap mask and has spent most of the day without his nasal canula. (He doesn’t like to wear it) If I could photoshop that tube out of his nose, you could tell how handsome he is. I told him he went into the hospital as a boy and will walk out a man. Here he is today.

Check out our young man sporting a little moustache and goatee!

Monday, May 17

Infectious Disease doc feels the candida infection is gone. It’s been over a week since we sent off the last tummy cultures and nothing has grown. YAY! Now the focus shifts to his body recovering from the infection. His body has been in Disseminated intravascular coagulation (DIC) (caused by the infection), for so long that we pray he is not too weak to recover from it. Please pray for strength and that his body overcomes DIC. His lungs are recovering and we need his strength to follow.

Tuesday, May 18

Thank you for the cards he continues to receive. He’s also received an autographed CD and an autographed set of drumsticks from a couple of extremely talented musicians (and you know who you are) and we thank you! He started back on medicine to raise his blood pressure and it worked immediately. He’s been running fevers again so they started him on different antibiotics. He’s also started a medicine to lower his calcium levels which are running too high. He hasn’t been very alert today, this could be closely related to his high calcium levels. Once we get calcium under control he should become more responsive. His platelets were very low so they are giving him a couple of units today. I feel so thankful for his team of doctors over here. They are truly amazing and I can relax knowing they are working on Steven’s case and seeking answers. Please continue to keep Steven in your prayers/thoughts and know that we are very thankful for all of you helping us carry the torch to recovery. ♥

Steven Progresses – His Dad Loses Job After FMLA Expiration

This will be a lengthy update, as Steven and family have had quite the week since his scare over the weekend.  Unfortunately I was traveling and did not have a chance to update all of you until now.  Let me start by saying that despite the fact that things looked very dire on Sunday, the move to the adult side of the hospital was exactly what was needed.  Steven has continued to make daily progress since then, and things are looking up once again.  It has been another roller coaster week for sure.

STEVE LOST HIS JOB AFTER FMLA EXPIRED

After such a trying weekend, we were stunned to learn on Monday that Steven’s dad, Steve, lost his job with JW Measurement in Bristow, OK after being with the company for 24 years.  He had spoken to the HR department a few weeks ago and advised them of his desire to use his personal time off after FMLA expired. You can imagine the surprise when he received a certified letter dated April 23 in the mail on Monday stating his FMLA ran out April 21 and his position was no longer available since he didn’t return to work on April 22, even though he still had PTO available to use. 

Confidential sources are saying Steve’s former boss (Will Rotert) is advising employees of the company to not talk about this to anyone and to say that Steve quit.  Steve, of course, wouldn’t have done that because after donating his kidney to Steven when he was a little boy it is important for him to maintain his health insurance.  He also knew he still had 3 weeks of PTO time and thought he had planned properly.  When Steve donated his kidney to Steven in 1998, the company was still Parkline, and they were great to the family at that time, but things have apparently changed …

Bristow, OK is a small town outside of Tulsa, and people there are definitely up in arms about this.  The outrage extends far beyond Bristow, and many of our Team Steven members have already been sending emails and making calls to the company to express their displeasure at these actions.  I have seen so many companies do the right thing in situations such as these, standing by their loyal employees, extending compassion and support when needed.  To think that a 24-year employee doesn’t deserve some consideration in the face of such a horrible time is just awful. 

The newspaper in Bristow said the corporate office hasn’t responded and that their employees in Bristow can’t give out any information.  Many of you have wanted to get in contact with the company upon hearing this news.  For those of you who would like to email the company to share your thoughts, here is the email address to JW’s owner relation department:  ownerrelations@jwoperating.com.  The company phone number is 918-367-5523.

YOU CAN HELP – MAKE A DONATION

Obviously the family has huge medical expenses associated with Steven’s time in the multiple hospitals during recent months.  This is now complicated further by Steve’s recent employment situation.  You can help by making a donation to the benefit account set up for Steven and his family.  Donation checks can be mailed to:

Steven Wilson Benefit Account
c/o Sharon VanOrsdol
Community Bank
P.O. Box 1020
Bristow, OK 74010

Or donations can be made online via the “Donate” button here on the top left side of our blog.  Thank you to those of you who plan to donate or who have already given money – your generosity is very much appreciated.  

STEVEN MAKES PROGRESS

Steven had an uneventful night Monday night and was resting comfortably on Tuesday as they waited for an X-ray of his GI tract.  His parents were encouraged to see that the team of doctors on the adult side of the hospital was ready to tackle all of his issues.  His blood pressure and breathing were better Monday, and he was down to 40% oxygen with hopes to eventually wean him from the ventilator.  Though disheartened about the impact of losing Steve’s insurance at the end of the month (Denise and Jeff still carry insurance for Steven), the primary focus remained on Steven, as the branch of hope was extended again.

The visitation is very strict on the adult side of the hospital, so Denise and Steve requested notification if anyone plans to visit.  Only two people are allowed in the room at a time, and either Steve or Denise need to be present at all times in case nurses or doctors appear with news or questions.  So there is no way to visit him in ICU unless prearranged.  Denise said her dad tried his charm to try to allow more than two in the room and it didn’t work, so if HE couldn’t do it, anyone else is certainly out of luck!  Given the risk of infection, it is probably for the best at this stage of the fight.

On Tuesday the Infectious Disease doctor finally gave the green light for a tunneled dialysis catheter.  His new GI doctor really wanted to find out what’s causing Steven’s stomach & liver issues, so the family was excited they were planning to look further into that.  Steven had a CT done of his abdomen region.   That night he looked a little unsettled, so Denise and Steve talked to him and explained what happened to him Sunday morning and where they were going from there.  He seemed to relax a little more but didn’t sleep much that night.  His mom was sure he was worried about upcoming procedures the following day. 

On Wednesday, Steven came through all of his procedures like a champ and was resting comfortably.  He got a GI scope, followed by the placement of the tunneled dialysis port, and then they tapped the fluid in his tummy and drained a little over 2 liters of fluid from his abdomen.   The GI scope didn’t show anything wrong in the stomach or esophagus, which was good news.  His tunneled catheter for dialysis is located in his chest, a much better location than the temporary one in his groin area.  As soon as he feels up to it, he will be able to get out of bed with this new location.  So Wednesday was a great day for progress and a giant step forward for our warrior.

That day his mom opened a letter from the Selective Service System addressed to Steven to let him know he’s officially registered for the draft.  She marveled at what a milestone he had reached, guessing that it must be an automatic process now since they didn’t do it for him.  She said, “He’s a man now.  :dabbingeyes:”  So cute.

Today was another great day for Steven.   They plan to start him on feedings through the NG tube, which should help a lot with the healing process and taking him off the TPN (nutrition via vein).  His blood pressures are the best they’ve been in weeks!  They tested the fluid in his lungs and it does NOT contain any infection so that is wonderful news.  He was scheduled to get dialysis today.

His mom said he’s communicating very well with nodding or shaking his head ‘no’ and using hand motions.  She can no longer see the outline of every bone in his knees, legs and arms, and thinks he has actually gained a few pounds.  The next step will be taking him off the ventilator, which he hates, so she’s sure he’s ready for that and knows it will be great to hear him talk again.  Denise said, “His last words to me on Saturday were ‘I … don’t … want … to … be … a … burden … to … you … all.’  There is no way those are going to be his last words to me. NOPE NOPE NOPE NOPE!”  Bless his heart.  Nope, indeed!  Not our warrior. 

SEND CARDS OF ENCOURAGEMENT

Once again I would like to urge you to send Steven a note or card of encouragement, motivation, good cheer, love, healing thoughts or prayer for recovery.  Those cards mean so much to him, and it helps him to know that SO MANY PEOPLE are on his side!!!  You can mail cards to:

Steven Wilson
c/o Denise Sargent
10111 S. Sandusky Ave.
Tulsa, OK  74137

Thank you for your continued good wishes for our boy.  Last weekend we didn’t know how things would turn out, but this week things are looking up yet again.  It truly is a miracle.  I am awed by his fighting spirit every day, and am grateful to have his sweet inspiration in my life.  Sending lots of love to Tulsa!

Steven Revived – Moved to Adult ICU – New Docs Working Plan

(This update was sent out to Team Steven members on Facebook late afternoon on Sunday.)  Hello all of you awesome Team Steven Members!!! I know several of you have been checking his page and may be aware of what’s going on, but in case you haven’t, we need LOTS of great thoughts and prayers for our warrior, so keep ’em coming! 

This morning Steven had to be revived around 7:45 a.m. He was moved this afternoon from the Children’s Hospial side to the Main Adult Hospital side ICU to begin to work the new treatment plan. He was put on a respirator to get rid of the carbon monoxide, and may be able to come off of the respirator within 24 hours. It will breathe for him and will keep the toxins from building up in his lungs and blood.

They have started him on the new dialysis – SLED dialysis, which is similar to the way the kidney functions normally because it is slow. The doctors think this will slowly pull the toxins off his tummy and allow his body to possibly have normal breathing functions return.

The next 2 days will be difficult and critical, but the doctors on the main hospital side have a Can Do attitude, and they don’t think what they’re dealing with now is terminal. They think it is chronic, and if we can get Steven through the next 2 days they think it can be overcome. There is definitely more hope, and we all know how Steven has already defied to many odds … please keep sending that good mojo his way, and continue with those wonderful thoughts, prayers and healing energy!!!

They think he might come out of the drug-induced sleep this afternoon and become concious again. As far as the cancer goes, the levels are not a concern and are the least of their worries. Right now the liver, kidney, lung and fluid issues are the chief concern, and this team of doctors is used to dealing with every issue he has. Let’s give up some gratitude for all of the amazing caregivers Steven has had along his journey. May these new doctors continue to lead Steven down the pathway toward recovery.

As always, thank you for all of the love, good wishes and prayers you have been sending to Steven and the family.

Steven Holding Steady – Continues to Fight – New Doc on Horizon

Thank you to all of you for your amazing support, thoughts and prayers.  Steven regained consciousness yesterday afternoon after dialysis, and continues to be our miracle boy.  Since many of you have been wondering how he is doing today, I wanted to give you the update from his mom:

“Never count him out.  His blood pressure has remained good since yesterday afternoon.  His breathing is still the same but he is much more alert today.  He doesn’t have the strength to actually say his words but he tries really hard.  I explained to him what the doctors told us yesterday.  I asked him if he wanted to give up yet and he said no.

We have received valuable information from someone who I strongly believe needs to be the captain of his medical ship.  After speaking with this person at length, we are going to ask to be moved to the adult side of the hospital so that Steven can receive the type of care he needs.  Hopefully that will go smoothly and not cause any doctor ego issues.  I see improvement today.   Please keep praying.  Your prayers are working!”

So again, thanks to all of you for your support.  Steven is amazing.  If you would like to help the family, you can make a donation to Steven’s benefit account.  There is the online donation button here on the left, or you can send a check to the benefit account at the address below the donation button.  Neither parent is working right now in order to care for Steven, so if it is in your heart to help, it is greatly appreciated. 

Keep all that love flowing to Steven – he can feel it for sure!  So can his family, and it means so much.

What a Week – Steven Takes Steps, Makes a Video & Goes Outside!

Denise sends a huge thank you out to the many, many, MANY people on Team Steven who sent birthday cards to Steven.  She said, “What a blessing you are to my son.”  Your cards and well wishes are such a great motivating factor for him – THANK YOU to all of you!!!

On the afternoon of his birthday, Steven actually took a few steps during physical therapy!!!  WOW!  We were all so impressed!  His mom said he received lots of cards over the weekend and again on Monday. She’d been reading all they’d received aloud to him on Saturday night. She said her voice was giving out, but he made her keep going until she’d read them all.  Check out this BIG smile on his birthday!  He was so happy to turn 18!!! 

So happy on his 18th Birthday - our sweet Steven!

They relaxed the concern for infection on his birthday, and TONS of family and some friends came by the hospital to wish Steven a Happy 18th Birthday on Monday – it was definitely something to celebrate … such an amazing milestone for our young warrior.  As you can imagine, the hospital isn’t the most festive environment for a celebration, but you wouldn’t know it from all of the festivity surrounding Steven.

Steven's Birthday Cake at the hospital.

All the excitement must have been good for him, as he had a wonderful night of sleep Monday night and finally got some good rest. He woke up Tuesday morning wanting a drink. He chose some Shasta Twist, which is a free drink in the ward. He took several sips of it and went back to sleep.

On Wednesday Steven had another day of rest and got dialysis … it is such a relief that he is sleeping better.  They found out that his last perotineal culture from April 8th did grow the Candida infection again, but this time it took longer for the Candida to grow in the culture, and he hasn’t run any fevers since April 9th. These are all good signs that he is battling hard against his infection. They’ll do another culture of his abdomen next week to see if it’s any better. So far, his blood cultures show no signs of the infection!  His mom thought he looks great even though he weighed only 80 pounds a few days beforehand. She thought he was packing some weight back on since they increased the calories in his daily IV food bag over the weekend. She said she hates seeing him so skinny!  He was starting to ask for food, and she gave him bites of a Reese’s peanut butter cup and anything else he requested.

This week’s update is emotional for all of us.  On Thursday, Steven wanted to thank everyone for their prayers, so he did a video for everyone!  My heart swelled as soon as I saw it.  I’m so proud of him.  He is so amazing, and your thoughts and prayers really do mean SOOOO much!  They’re working!  THANK YOU for all the love you send Steven’s way.  Because the video was posted to Facebook and isn’t on something like YouTube, I can’t embed it here, but I will include the link for you here to check it out:  http://www.facebook.com/group.php?gid=10150104869275494&v=app_2392950137#!/video/video.php?v=1294213710713&oid=10150104869275494 – you must be a Facebook member for the link to work directly to the video.  But if you’re not, try our link to his Facebook page on the left side of our blog here, and it will take you to his page.  Hit the Videos tab, and it will be the 4th one over.  Trust me, it’s worth the extra effort.  He is so sweet.

His Physical Therapist helped him into a bed that they took OUTSIDE!!!  (There’s a video of him taking steps to the rolling bed – 3rd one over on Videos tab.  Pretty unbelievable.)  Steven hadn’t been outside since checking into the hospital in St. Louis on February 15.  Warning … if you are able to view this video you may get teary eyed when you see him take the tube out of his nose to breathe the fresh air.  What a wonderful moment:  http://www.facebook.com/group.php?gid=10150104869275494&v=app_2392950137#!/video/video.php?v=1294225150999&oid=10150104869275494 – again, this direct link works for Facebook members; if you are looking at the Videos tab, this one of him arriving outside is the 2nd one on the Videos tab on his Team Steven Facebook page.

Steven told his Grandpa that he wanted to go home with him so he could teach him how to milk a cow!

Steven had another great day on Friday.  He had dialysis earlier in the day and received 2 units of blood. Great news:  His NG tube didn’t produce any bile, so we’re hoping that maybe things are starting to move the way they’re supposed to!! He’s also urinating again. We are wondering if maybe infection had all his organs messed up and now that the infection is going away things are starting to work again … wouldn’t that be awesome?!!  We are hoping!!  He has tried many different foods and drinks.  Nothing has tasted ‘right’ to him. They’ve taken him off ‘NPO’ (the IV) so he can order from the menu if he wants anything to eat.

He hadn’t been able to breathe without the assistance of oxygen for several days because it wears him out. But when he took that hi-flo tube out of his nose on Thursday to breathe that wonderful fresh air, he left it out and hasn’t had it back in since!!!  WHOA!!!!  His parents were amazed, as were the rest of us.  Every positive little move forward is something to be grateful for, and we continue to focus on those steps in the right direction.

On Saturday he had a minor setback with low blood pressures and bloody stools.  The day went a little downhill after he got dialysis in the morning.  He has had stomach pain for several days now, but this Saturday was the first day they’ve noticed blood in his stool in over a month. I was thinking that since he hasn’t really had any foods or anything until this past week, then perhaps that could have something to do with the stomach pain? I think maybe his body is going to have to re-train itself to deal with real nutrition again as opposed to IV … it hasn’t had to function like that in quite some time. Hopefully it will all improve as his body adjusts to more normal functions again.  He was supposed to get another unit of blood last night.  Today we’re just asking for more good intention that his bleeding will stop and the stomach pain goes away.

Oh, and speaking of blood in a REALLY good way, they had the blood drive in Steven’s honor at the Bristow Christian Center Gym yesterday in Bristow, OK.  We had 45 blood credits made toward Steven’s account!  Yea!  For those unable to attend, feel free to give at your regular donation location and inquire if you can have your donation credited to Steven Wilson at St. Francis Children’s Hospital in Tulsa, OK. Many blood banks will transfer the credits, and I know a few of you have already donated in his name, so THANK YOU to all of you from yesterday and beyond!!!!  Give blood. Give life.

And of course it’s never too late to send a birthday card or an uplifting, supportive card in general – Steven LOVES to hear from you all! Feel free to send any cards to him at:

Steven Wilson
c/o Denise Sargent
10111 S. Sandusky Ave.
Tulsa, OK 74137

Even J.R. Richards from the band Dishwalla told me he sent off an autographed CD for him Friday morning.  Yep, even the rock stars are showing up for our boy!  For those of you who haven’t heard J.R.’s solo CD yet, check it out:  http://www.jrrichardsmusic.com/ – support those who support Steven!  He has a beautiful voice, and such a good heart.  Thanks to J.R.!

So despite those setbacks yesterday, overall I think Steven has had an AMAZING week!!!  So many positives – starting with his birthday, being able to start eating foods again, taking steps in Physical Therapy and then getting out into the fresh air, which led to breathing without his oxygen tube.  Wow – what a week! 

Keep those fabulous thoughts, prayers and the good mojo coming!  Steven definitely feels your love, and it shows!

Steven surrounded by his dad and St. Francis staff as he at last gets to go outside!!! 🙂

Introducing Our Blog – Fluid Drained from Abdomen – Chemo Hold

Okay, we are now official with updates in a blog format.  I know several of you had asked about this possibility – Denise and I had spoken about it at the onset of Steven’s journey, and she reserved this URL then.   But a blog is time consuming to set up, and she was getting lots of support on the Facebook Team Steven page and her time was simply dedicated to just being by Steven’s side.  I decided to take the info and run with it this weekend and post all my prior updates because we really needed a site to host the online donation button.  Technically it’s a joint venture, as I get all my info from her anyway, so here we are!

Steven was having pain in his upper abdomen last week for the first time since being back in Tulsa.  He had surgery Thursday afternoon to place a temporary hemo-dialysis port in his neck, do a bone marrow biopsy and pull some fluid from his abdomen to determine what was going on there.  His blood culture from the 22nd showed the infection is still in his blood, which could take 4 – 6 weeks to clear. 

Good news:  Bone marrow and fluid pulled from stomach both tested negative for cancer cells!  Wonderful!  They decided not to pull his chemo port during Thursday’s surgery and will instead test his blood every day for infection.  He had a lot of pain from his pancreatitis along with fevers through the weekend, and pain meds weren’ t helping.  They postponed starting chemo today since it knocks his immune system down so much.  I was happy to hear he’ll have another week to gather more strength beforehand.  Instead they made a plan to drain the fluid from his abdomen.

On Friday morning Steven had awakened and wanted to stand up!  His parents Steve and Denise helped him sit up for a while, and then he wanted to lay at the foot of his bed.  He had his dad go out and get his suitcase because he wanted to see his own clothes and shoes.  Awwww!  🙂  His mom said he’s so ready to get out of that hospital!  She said Friday morning was the strongest she’s seen him since March 4th before they did his last chemo.  Yea!!!

They got to move briefly out of ICU to the 3rd floor, but had to head back to ICU yesterday when they planned to drain the fluid – it’s much easier to monitor blood pressure closely since losing so much fluid at one time can be dangerous.  This is a step forward in relieving his pain and helping him get better.  He also received dialysis yesterday.  At the end, he pulled out his NG tube AGAIN!  His dad asked why he did it and he said he had a dream that he didn’t need it and would be healed if he pulled it out.  🙂  Awwww.  I just love this boy.  Yeah, he’s on a lot of pain meds right now to make him comfortable  … LOL.  But still … his mom thought maybe he knows something they don’t.  The tube was put down the other nostril this time.  Now the fluid being extracted is more yellowish rather than green, which is good!!!  So perhaps he was right?!  Onto healing!

Last night was kind of a scary one. His pain patch released too much medication after he started running a high fever through the night.  His BPMs shot up over 170, his breathing was rapid, oxgen levels dropped.  His mom said it was pretty frightening getting him back to normal.  No dialysis today.  They drained 5.5 LITERS from his abdomen this afternoon, which took about 90 minutes to complete.  Last I heard, he was resting as they monitored to see how his body would react to the fluid being gone.  Tomorrow they will do a dialysis treatment and then pull his temporary dialysis port. On Wednesday they will put in a permanent port, which will be good to have in place before they start chemo next Monday.

Denise’s sister, Michelle Smith, helped organize an amazing benefit concert they had in Bristow, OK on Saturday night.  My brother Jeff (Denise’s hubby/Steven’s stepdad) said the concert was awesome and that Michelle knew the right guy/people to bring.  He said it was the best show he’s seen in his life, because it was all about Team Steven.  There was apparently such reverance and love in the room.  It was a beautiful, peaceful time for people to come together to lift Steven up for healing.  Thanks to Michelle and to everyone who helped!!! 

For those who were unable to attend who still wanted to give a donation, check out the left side of the page!  We now have an online donation capability!  Yea!!!  Convenience!  PayPal does extract somewhat hefty fees (for credit card processing – but if it’s linked to your bank account the fees are minor), so sending a check is still probably best if you want them to have the entire amount if you don’t have a PayPal account, but we want something that works for everyone – TA DA!!! 

🙂  (Yes, I’m happy to have mastered the donate button widget!)

As always, thank you for your continued good thoughts and prayers for Steven.  I hope you like the new blog format and that it will be easy for you to access or send to your friends who are keeping Steven in their hearts.  I added an email subscription area on the sidebar, so you can sign up for updates to be emailed anytime I create a new post!  I am thinking of eliminating my email lists to that end, so that those of you who really want to follow closely can subscribe and do it via that avenue.  What do you think?  Or do you still want me to send an email out with a link every time I post an update?  Let me know what you like.

Sending Steven lots of good thoughts in hope that he’s feeling better after having that fluid drained!

Continued Progress, New Port & Life Decision

I’m going to give you a full update, but want to let you know at the outset that yesterday was a challenging day with difficult scenarios presented for decision. I think you’ll find that Steven’s fighting spirit continues to inspire. I’m asking in advance for each of you to PLEASE continue all of those good thoughts and prayers, as he’s getting ready to enter an extremely tough part of this fight.

That being said, his white blood count went into overdrive earlier this week, reaching 11.2 (higher than normal so he wouldn’t need WBC booster shots every day), and his platelets kept rising on their own. He had a CT scan earlier in the week to show what’s going on with his digestive system, liver, etc., because he had some jaundice which was evident in his skin color and whites of his eyes. He wanted a wheelchair ride in the middle of the night (difficult for one parent to do while the other sleeps on the couch), but he did eventually get some time out of that bed. See the beautiful attached photo of Steven with his mom and dad during a stint in the wheelchair to go see the snowfall. This picture brought tears to my eyes. It’s so nice that parents who are divorced can come together for their child in need.

He was fighting high fevers this week, over 104, which is the highest they’ve been. They eventually broke … may have been caused fighting against a yeast infection contracted through his dialysis port. The dialysis tech was having a hard time getting his dialysis port to work, and it finally stopped working Tuesday. They removed it from his groin with a plan to replace it with one in his chest in 48 hours (today) as long as his blood cultures didn’t grow anything new. With everything on target, they said he could get dialysis again in 2 days. His mom said he was constantly asking when they’re going home, saying that he’s so much stronger in his mind than he is in body. He still hasn’t been able to eat anything in the past two weeks, and all nutrition has been received via I.V.

The GI team thought his liver was causing a lot of the issues, but lab reports didn’t support that theory. All the teams (Oncology, GI, Nephrology, Infectious Disease, PICU floor Drs) scheduled a conference yesterday to come up with a plan where they’re all on the same page with a common goal. Potential obstacles were: Making sure the yeast infection is gone from his blood; determining why his stomach is bloated (possibly liver related); dealing with the pancreatitis; removing the dialysis port from groin to chest; and then beginning chemo again. Denise was extremely anxious before the meeting, because she recalled the last time they had a conference in St. Louis before they basically sent him home to die.

Steve, Denise and Jeff met with a team of 9 doctors yesterday, and the question posed was: Do we want to get a dialysis port placed tomorrow and continue on with dialysis and chemo with no guarantee the chemo will cure the cancer, or do we want to let him slip into a coma and die by Sunday? The reason for that question is because dying from kidney failure is painless; dying from cancer, however, is very painful. Denise said there was no question in her or Steve’s minds as to what the answer was, but the doctors insisted on asking Steven what he wanted to do and planned to go with his decision.

As if you couldn’t imagine, our brave, young warrior, Steven, chose LIFE!!!

It is going to be a challenging journey with no guarantees, but he had no guarantees of even surviving this long a few weeks ago and he’s surprised everyone! I admire my sister-in-law for her strength and her nurturing. She and Steve have been so steadfast through this all in support of their son, and I know my brother hates seeing Steven or Denise is pain and this has been extremely hard on him as well. My heart is constantly with all of them.

SO … NO ONE is giving up!!!!! Today Steven will have a new dialysis port placed in his chest so they can proceed with the new plan. Many of you on the TEAM STEVEN page on Facebook (over 2,250 members now!) know there is a Benefit Concert planned in Bristow, OK on Saturday night. Neither Denise nor Steve are working right now to be by his side constantly, so both parents are being impacted by loss of income combined with rising medical costs.

SUPPORT THE FAMILY WITH A $10 DONATION

People have been asking if they can still contribute even if not in the area. ABSOLUTELY!! As most of you know, we have set up a benefit account for Steven’s family, and you can mail a check or donation at any time. Think about this … with over 2,250 members now along with extended networks including this one, what if EACH member of our TEAM STEVEN gave just $10 to help??? It’s the cost of a few value meals at McDonald’s, or 3 Café Mochas at Starbuck’s. Wouldn’t that be worth knowing you helped Steven’s parents, who needed some support during a challenging time? Isn’t $10 worth the emotional roller coaster we’ve all been on these past few weeks with Steven and his family, and being able to behold the brave and strong warrior fighting the big, bad cancer? David takes on Goliath. Come on – you have to pay more than that to ride the roller coaster at Disneyland!!! 🙂

So, if it is in your heart, we would love to request your support in the form of a $10 donation if you cannot make the benefit (we know some of you have already sent donations or gifts – thank you so much for your generosity). We are still hoping to have an online donation option, but ran into some snafus. In the meanwhile, please feel free to send your donation check to:

Steven Wilson Benefit Account (make check out to)
c/o Sharon VanOrsdol (in note section)
Community Bank
P.O. Box 1020
Bristow, OK 74010

Again, if you make a donation and want your red TEAM STEVEN bracelet, email me afterward at valeriesargent@yahoo.com and we’ll make sure you get yours! I just picked up more greeting cards for Steven yesterday. If you also want to encourage him and continue to cheer him on, send your motivating cards to:

Steven Wilson
c/o Denise Sargent
10111 S. Sandusky Ave.
Tulsa, OK 74136

It’s amazing how much your show of support has meant to the family. All of the love coming from so many different faces and places helps make them all not feel so alone, and it gives them confidence to proceed in battle, knowing so many are on their side.

Thank you for opening your hearts to Steven and my family. The outpouring of concern from people who love and care has been so touching. I have seen from so many of your responses how much this strong young man has come to mean to you, and I thank you for your continued thoughts of healing, prayers for recovery and good vibes in general. Steven has inspired us all. Let’s keep focusing on that continued healing (smooth port placement, protection and maintenance of kidney, strength of body for chemo) so that HE can continue to inspire us for years to come.

Remember …. Steven doesn’t do odds … he DEFIES them!!! May he always continue in this stead.

With gratitude, hope and love,

Valerie

PS – Sorry for the length … trying not to clog your Inbox, so had to cram a lot of info (I know some of you want LOTS of detail!). I take comfort in the fact that I’m not nearly as long winded as Doc Jensen who does EW’s weekly recap of the TV show “Lost.” He makes me look like the Queen of Brevity. Bless him!

Steven with his dad, Steve, and mom, Denise, checking out the snowfall.