Monthly Archives: May 2010

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. ♥

From Code Blue to “I Love You” – Upcoming Exploratory Surgery – Send Love!

On Friday, Steven was watching a funny movie on his portable DVD player – only comedies for that kid, to bring him some fun and laughter and make him feel good inside. He wasn’t ready to come off the vent at that point, but the doctor said they didn’t need to rush him. Physical therapy came by and worked with him for a little bit, and Steven started working out with 2 lb hand weights that his mom bought him Thursday; such progress from the Code Blue 5 days beforehand.

Our warrior on Friday, April 30, 2010 "Chillin' like a Villain ... watching movies"

Despite the news of Steve’s job loss after FMLA expiration, the focus continued to be on Steven and his progress … the most important thing in the eyes of his parents.  For those of you who wanted to see the newspaper article published in the Bristow newspaper about Steve’s job loss, I have it for you here:

Article that was published in the Bristow Newspaper.

On Saturday, Steven started the day strong, breathing on his own for over an hour. When they tested his blood gas, it was all normal.  He got dialysis and Day 2 of his NG feedings went well.  Later in the day, they were able to take Steven is off the vent and he was talking to his parents. When they pulled the tape back from his upper lip to remove his breathing tube, is mom said he had a mustache growing, so apparently the chemo effects are wearing off.  Such a man!

If you haven’t seen it, his mom shot the most WONDERFUL video of Steven on May 1, May Day.  From Code Blue to “I Love You” … I definitely cried tears of joy when hearing him speak after such a frightening weekend.  Here is a link to the video if you’d like to see our brave boy (again, if not on Facebook, you can access his Team Steven page from the Facebook link on our sidebar here; go to the Videos tab to see it there – first one right now):

http://www.facebook.com/group.php?gid=10150104869275494&v=app_2392950137#!/video/video.php?v=1307836571276&oid=10150104869275494

Steven was doing great again on Sunday. His doctor said the next step would be to wean him off the NG feedings & TPN and get him back on table food. His chest & neck were still sore from the tunneled catheter procedure a few days beforehand, and he was napping comfortably. It was good that he was resting to build his strength for more physical therapy on Monday.

I talked to Steven’s stepdad, my brother Jeff, on Sunday night.  I haven’t heard him sound that relaxed in months, and it was such a relief.  He believes Steven is exactly where he needs to be and is confident in the doctors working with him.  He said that Denise moving him to his side on Sunday morning and having him code were the catalysts in getting him to the right place to survive and recover.  I am a firm believer that there are no coincidences in life, and that the right people are put into our paths when needed … it was time for a move to the adult hospital.  Steven is surrounded by so much love on this journey, and things keep falling into place at the right time.  Miracles continue to abound.

It was comforting to hear Jeff say the cancer truly isn’t a concern at this point, and they really just need to get rid of these infections.  I think it’s fantastic that Steven keeps a pair of shoes by his bed so he can see them and focus on the day he can walk out of that hospital!  He is such an amazing, inspiring young man.  My heart is constantly full when I think of him, which is pretty much all the time, so it’s nice to have such a happy heart.  🙂

On Monday, the cultures from his tummy fluid still reflected the Candida, but there was good news that the bacteria infection is gone, so he will be able to stop some of the antibiotics. The GI doctor thought about having Steven swallow a ‘camera pill’ to diagnose a problem in his intestines, but planned to wait a couple of days before that, since his stomach is just starting to move things through a little better.

Steven’s lungs are still pretty weak, but he had some really good coughs yesterday. He was blowing bubbles through a bubble wand to increase the depths of his breath (thanks to their smart nurse for that great idea).  Denise said she thought she was at a Lawrence Welk show.  LOL.  Please continue thoughts and prayers for lung strengthening and for his infection to go away.

This morning Steven had some breathing issues from 3:30 to 5:30 a.m., and his heart rate was really high with his BPM around 40-50. The doctor said he didn’t feel Steven needed back on the vent and kept him on the bipap. They also took an X-ray of his lungs, which showed his lungs looked pretty good.  They ordered more cultures since the infection and the 103 fever he was running would be another reason his breathing and heart rate could be so labored. He’s now off the bipap, his oxygen is at 100% and his breathing has slowed down a lot, so he seems to be doing much better.  

UPCOMING SURGERY – KEEP THE GOOD MOJO COMING!

We now need lots of good vibes, healthy thoughts and focused prayerful energy for a successful surgery for Steven.  A surgeon is coming by today to assess and discuss possibilities for exploratory surgery to find out what’s causing Steven’s infection. In doing this, they would be able to fix any problems while in there rather than utilizing the ‘camera pill’ (where they would have to wait a few days for results and it might not be 100% conclusive).  His tummy fluid contains the candida, which they have pinpointed is coming from the intestines. Therefore, the only way to tackle this head-on is to do exploratory surgery.

His mom said we have a few strikes against us right out of the gate: He has multiple system issues, kidney, liver, weak lungs and infection along with peritonitis. But the doctor also said the biggest thing in Steven’s favor is his youth.  Being only 18 years old, he has proven time and time again that the young recover much better than the rest of us (we’re not old – deny, deny, deny!). I told her if we’re talking about strikes, sometimes you have to hit a few strikes before getting that home run!  So batter up!  Let’s figure out what’s up and knock this infection outta the park!  Go Team Steven!

Our brave warrior has come SO FAR!!!!  Please send lots of love his way for continued miracles, further healing and successful surgery.  Thank you for all of the warm thoughts, good energy and healing prayers you send to our sweet Steven.  HUGS!!!