Monthly Archives: April 2010

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!

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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.

Steven Needs You NOW – Condition Critical – Please Send LOVE!

I had to add one more post today to the one I just did below, because they just got out of a meeting with the doctors.  I can’t say it any better than Steven’s mom, so please read – your good thoughts and prayers are needed now more than ever:

“The doctors can’t do anything more for Steven in his present state.  They can continue to support him with dialysis, but his breathing and blood pressure continue to decline.  As far as procedures go, they can’t even tap the fluid in his belly.  I’m not sure how long he will continue his fight.  He hasn’t been fully conscious since last night.  I feel so sick. His situation has decined so dramatically in the past 24 hours.  I don’t know how I will go on without him.  We are terrified.  Please pray.”

Steven Needs Higher Blood Pressure, Tummy Drained – Please Send Good Vibes

After a scary night on Saturday with low blood pressure and bleeding, on Sunday he received a unit of blood and two units of platelets which stopped the bleeding, and he got a large volume of albumin to raise his blood pressure.  Steven had a much better day afterward with normal blood pressure and no more blood loss, sleeping most of the day.  His stomach pain continued, and they planned dialysis for Monday with an ultrasound of his abdomen to see if they can get answers to the cause of blood loss. 

Cultures were drawn from 4 ports Saturday morning to see if the Candida infection was gone. One of the cultures grew a staph infection, but they thought later it might have been a false reading since none of the others grew it, so they re-cultured that spot.  They planned to tap his abdomen fluid Monday to culture if for the Candida, saying if it stays negative (5-7 days) they will put in a tunneled dialysis catheter.  Steven is really looking forward to getting the port moved out of his groin so he can sit upright in a chair and get out of bed when he wants. We have all been hoping the infection is gone.

Steven again had a better day on Monday.  His mom said he was running them ragged with his hunger desires, sending his dad or stepdad out for whatever he might be craving at the time, because he thought he must have whatever it was right away. Unfortunately, despite the food cravings Steven said nothing tasted right, taking only small bites of this and that, so nothing substantial.  I’m sure his taste buds have been affected by both the chemo and the fact he’s had a lot of tubes down his nose, since the sense of smell has such an impact on how the taste buds work.  His certainly must be askew from so much other stuff going on in there.

The ultrasound from Monday didn’t show any problems, so they thought his bleeding issue had been due to low platelets.  It was a relief to know there weren’t any new issues.  He was going to try to go 24 hours with his NG tube turned off, with hopes that if he does all right they can take it out.  They rolled his bed outside again and he got to take in a little sunshine and fresh air on Tuesday.

Steven gets another day to go outside and work on his tan.

On Wednesday Steven had an uneventful day, which in our book is good. He still complained of nausea and stomach pain, which could have been from an antibiotics dosing change last week, so the doctor was planning to check into that.  Nothing had grown on the re-cultured site or on the other Saturday morning cultures, so things were looking up for a tunneled catheter by the end of the week.  They didn’t culture any more fluid from his tummy, with possible thoughts on going ahead with the tunneled dialysis catheter if blood is clear of infection.

Yesterday was quite a worry because Steven’s tummy really needed to be drained again, but the PICU doctors are concerned that sedation would affect his breathing.  His mom said they can’t really move forward in his strengthening until he’s able to get out of bed and move around … but they can’t do that until they get the dialysis catheter out of his groin … and they can’t get the catheter out until his tummy is drained so his breathing can improve enough to be sedated.  Whew!  She said it’s all like a reverse domino effect, but that Steven wants to live!  The doctors are trying to minimize risk, and Denise said she was having difficulty making the doctors understand that her son is different.  She and his dad believe the risk to take these baby steps forward will pay off because he has consistently beaten the odds to make it this far.

Steven’s blood pressure remained low throughout the night and into today, which is part of the concern as well.  They tried lots of albumin, a unit of blood, and a unit of platelets this morning, but nothing was working.  They did start some frozen plasma, and his blood pressure appeared to be rising a little. They had to put the Bipap mask back on him last night around 11:00 p.m., and he’s been fast asleep ever since.  

Dialysis is scheduled today, so we’re hoping that will help clean out his system and bring him back around.  His phosphorus levels are dangerously high for his condition.  There are plans to talk to the Nephrologists and Oncology to go over risks and options for draining his tummy fluid yet again, and whether or not he’s strong enough to handle more. 

This is a critical time for Steven.  Please send good thoughts and healing prayers for strengthening so his doctors can see that his strength of body matches his strength of heart!  His blood pressure needs to be much higher so he can be ready for the next steps.  He needs LOTS of love, good intention and prayers coming at him right now, so THANK YOU for your support of our sweet boy … our WARRIOR!

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!!! 🙂

Happy Birthday, Steven! Steven’s 18th BELIEVEday!!!

Today is the day we celebrate:  Steven’s 18th Birthday!!!  Our miracle boy has defied every odd and greets his birthday with hope, courage and his undeniably strong will to live.  For those of you following Steven’s journey closely, I know you join us in gratitude.  Here’s a quick recap of his weekend for you.

Steven didn’t sleep a wink Thursday night, despite needing some good sleep to slow his metabolic system down.  The doctor planned to start him on a low dose of steroids to assist with the other drugs to fight his infection.  Steven had a lot of questions for the doctor Friday morning since he was present during the conference on Thursday where they discussed the muscle weakness around his lungs.   That night afterward he was asking his dad if he was going to die from the infection, and he wondered if there was any kind of surgery they could do to save him.  His parents were incredibly strong, fighting back tears as you can imagine, explaining to him that the doctor didn’t say he was going to die, but that she had to be honest in giving her medical opinion.   They further explained that it is ultimately up to God, as He is the true Physician.  Steven felt better after asking the doctor more questions Friday morning, but his mom said it’s so hard to see the fear of dying in your child’s face.

Steven actually had a great day on Friday after all of that. During Physical Therapy they even stood him up, and he was able to stand and hold himself up straight!!!  This is the first time this has happened since he’s been in Tulsa, so it is amazing.  His mom said he is so aware and is talking very clearly (at times he has been quiet or hard to understand).  He was asking several questions and had some long talks with his dad.  His mom even fed him some strawberry Jell-O (he hasn’t had any type of solid food since being back, either – only IV nutrition – wow!).

Birthday cards kept showing up in droves this weekend!  Thank you everyone for sending them!!  Since we Aries like to celebrate for at least an entire month, if you’re late in sending, go ahead and pick up a card and feel free to send it along to him to continue to cheer him on during this battle.  Send it to him at:

Steven Wilson

c/o Denise Sargent

10111 S. Sandusky Ave.

Tulsa, OK  74137

Sleep continued to elude Steven every night.  He was so cold during dialysis on Saturday that Denise told Steve he should get in bed with him and hold him, since human heat is better than blanket heat.  She thought it would relax Steven enough to actually go to sleep and it worked for both of them for a spell.  She wanted to take a picture, but was afraid the flash would disturb them and was so happy he was finally sleeping.  It wasn’t nearly long enough though, and Steven wasn’t able to sleep much during the weekend, which was a worry.

They continued to try sleep aids, which didn’t work.  Denise said she thought she got more sleep taking care of newborn twins than she does hanging out with Steven at night.  But yesterday, they discovered he needed some medicine for high blood pressure, so about 20 minutes after getting it he was out like a light.  Finally!!!  They found something that worked.  They did an X-Ray of his lungs yesterday morning and said his left lung was mostly all white.  There was a small pocket of black at the top of it, which meant he was only getting a small bit of air flow. He is back on the Bipap mask again to open up that lung.  Hopefully this will do the trick.

The nephrologist is excited to see Steven’s blood pressure back up because it’s a sign he’s getting better and back to normal, hopefully beginning to overcome the infection.  She made sure he knew that, saying, “Hey kid, you’re getting better, so you need to start acting like it!”  This was the message Steven needed to hear, and I’m sure her words helped as much or more than the medicine.  Needless to say, Denise really liked her.   Turns out this doctor has also survived cancer twice, so she knows exactly what Steven is going through. 

Right person, right time, right solution.  Funny how that works.  😉

And here we are today … Steven’s 18th Birthday!!!  I celebrated my 40th birthday this weekend, and I was so touched at the number of friends who said how much Steven’s journey had touched them, continuing to ask after him or give donations.  My darling friend Jaime gave me a necklace that said “Believe” and we all made a birthday wish together for our sweet boy – when I shared this with Denise, we deemed the days to be BELIEVEdays instead of birthdays.

So today, we celebrate Steven’s 18th BELIEVEday!!!!  Because we believe in him, and in his recovery.  The fact that he is here for this day is truly a miracle, and we are all so grateful.  Today Steven is wearing his breathing mask to open his left lung, which makes it difficult for him to communicate.   Yesterday he had motioned for pen & paper yesterday, writing, “When can I have a Dr Pepper?”  His parents were elated!  They didn’t know if he was still able to write or not.

His mom ran to Walgreens and bought him a dry erase board so he could communicate while wearing the mask.  These are the notes they exchanged this morning.  He only mispelled the word mask.  This boy continues to astound and amaze.  He has the strongest will to survive I’ve ever seen, and today we celebrate Steven. 

These are the white board messages exchanged the morning of his birthday, used so he could "talk" while wearing his breathing mask.

HAPPY 18TH BELIEVEDAY, STEVEN!!!!!  We all love you very much!

Steven’s Muscles around Lungs are Weak – Difficulty Supporting Breathing – Thoughts & Prayers Needed

Backtracking through our week from Monday … Steven finally had a restful night of sleep with Ambien on Sunday night and no fevers Monday. He continued with dialysis and received blood.  They planned to do another culture of his stomach fluids to check the status of the abdominal infection. His stomach didn’t appear to be filling up with fluids like it has been, so we were hoping the medicine and all the good vibes being sent were working. The plan was to keep treating him for infection, and once it’s clear place a tunneled catheter for dialysis and then restart chemo.

Steven with his mom, Denise, on Easter morning.

Denise went home Monday night around 8 p.m. to spend some time with Jeff and her 7 yr old twins, and she was awakened by a phone call at 6 a.m.  Steven’s dad, Steve, called to say Steven had breathing issues around 5 a.m.  He could barely get any breath.  They took a chest X-ray and checked him with a stethoscope.  The nurse couldn’t hear any air going into the left lung.  They put him on a ventilator, which helped tremendously, although he felt nauseous.

The X-ray showed the lungs were pushed up from fluid in his abdomen, which was odd since his tummy didn’t look that bloated. The Ambien stopped working Tuesday night, and Steven’s nights of restless sleep returned.  As a result, this means his parents aren’t sleeping well, either.   He continued to get dialysis and they planned to have his tummy drained of the fluid to do a culture to check progress with the infection.  A CT was scheduled to see what’s causing the fluid buildup and check the lungs.

Wednesday was fairly calm, with Steven wearing his bipap mask for comfort.  His mom said he didn’t really need it, but he felt better wearing it. They didn’t tap the fluid off his tummy Tuesday since they pulled off quite a bit of fluid during dialysis. He was doing better at coughing, which in turn helped his breathing. They kept encouraging him to cough and moved him around as much as possible to make him have that urge to cough. Denise said birthday cards started pouring in by Wednesday! Thanks to everyone who has been sending cards for his 18th birthday on Monday!  She reads them to him, so hears each and every message.  You guys are awesome!

Steven’s CT scan Thursday morning finally helped figure out completely what’s going on with his lungs.  It showed that the bottom of his left lung may be partially collapsed or might have an infection. They couldn’t tell the difference because there is quite a bit of fluid around his lungs that they planned to drain off and culture after dialysis.  His body is wasting muscle faster than they can give him nutrients. His metabolism is in overdrive, and his mom was wondering if they could slow it down somehow.

MAJOR DISCOVERY REGARDING LUNGS – THOUGHTS & PRAYERS NEEDED!

The CT scan results showed that his body has wasted the muscle around his lungs to a very thin state. The doctor was researching a drug that she may start him on Friday to see if it helps stop the process of the muscle wasting.  This is an extremely serious issue, as the muscles around his lungs are just too weak to support his breathing.   The CT showed some irritation around his intestine, which may be causing some of his problems, and it could be a result of the Candida infection in his body. The problems with his liver look as though they may be related to his Caroli’s Syndrome and not from the infection or the lymphoma. (I had to look that one up, as I wasn’t aware:  Caroli’s syndrome is a rare congenital disorder that involves intrahepatic bile duct ectasia and congenital hepatic fibrosis, frequently seen with concomitant autosomal recessive polycystic kidney disease – ARPKD.  Geez.)

So that’s the news for now.  In the words of Steven’s mom:  “We truly need a miracle.  Plain and simple.  We’ve got to beat this infection and stop Steven’s muscle wasting. Please pray!”

STEVEN’S 18TH BIRTHDAY MONDAY

Again, a reminder that Steven’s 18th Birthday is Monday, April 12.  We would love it if you could send a birthday card to him to cheer him.  He’s been such a fighter through all of this.  He wasn’t even supposed to even see his 18th birthday a month ago, and the support and love of so many people has helped Steven to keep being a warrior and bolstered his family during a difficult time.  Please keep up the love!  Send cards to:

Steven Wilson

c/o Denise Sargent

10111 S. Sandusky Ave.

Tulsa, OK  74137

Thanks to you all for your love, support, thoughts, prayers, good wishes and healing intentions.  KEEP THEM ALL HEADED TO HIM NOW!!!!  Thank you!

For those of you who are unaware of Steven’s history of his kidney transplant when he was a little boy, his Aunt Dena found the newspaper article featuring the beginning of his health issues that eventually led to where he is today.  Look at that remarkable little boy … a fighter then … a fighter now.  He’s quite remarkable, that special guy.  Sending love, strength and healing wishes for muscle regeneration and lessening of infection to you, sweet young man.  Sleep well tonight.  xo

My Visit – SEND CARDS for Steven’s 18th Birthday! – Infection Fight

I just returned from a trip to Tulsa – a gift from Mike Hall, the husband of Shelley, my best friend there.  He flew me home for the weekend as a gift to her to surprise her for her 40th birthday, which was incredible in itself.  But it was also a gift to me, as I was able to visit with my family while home and to go see Steven in the hospital.  (Thank you so much, Mike.)

Let me tell you this … it is one thing to KNOW that a child has basically been living in a bed since the beginning of February.  It is quite another to be IN the situation; to see how finely attuned his parents are to any nurses’ visits or discussions of medication; to see evidence of the fact that this room is also a home to those same dedicated parents, with groceries and items nearby because they are constantly at their son’s side; to see the tubes and machines and to hear the noises that accompany that sort of hospital time, knowing how difficult it is for anyone to rest in an environment like that; to watch my brother rush out to go pick up the girls and keep the home fires burning while Denise is at the hospital; to see that sweet boy and how challenging his life has become as he continues to bravely fight a battle against infection and illness that a child should never endure.  The gravity of the situation begins to sink in even deeper when you are there and surrounded by it. 

I say child … Steven and I took our early birthday picture together.  His 18th birthday falls a few days after my 40th – it is next Monday, April 12, 2010.  If there is anything wonderful about an Aries, it is that strong will and spirit to endure … even in pain, even when times are tough. My heart swelled as a smile slid across his face as we talked quietly. It was so good to see him. Here is our birthday photo:

Valerie and Steven after talking about their milestone birthdays this month. Look at Steven's beautiful smile!

For months I have been asking many of you to send cards of encouragement or motivation to Steven to help cheer him on during his fight.  Now Steven is going to have his 18th birthday in the hospital as he continues to try to fight this infection with hopes of then receiving further chemo to then stop that stupid cancer in its tracks. 

IT’S TIME TO SEND BIRTHDAY CARDS!!! 

Team Steven, I hope you will take a moment this week to join me in celebrating Steven by sending him a birthday card as he nears his 18th birthday on Monday, April 12!  You can mail your card to:

Steven Wilson

c/o Denise Sargent

10111 S. Sandusky Ave.

Tulsa, OK  74137

When I went today for a second visit before leaving to return to Cali, Jeff’s kids (Courtney and Parker, visiting for the weekend) went to the hospital with me, hoping to see Steven and wish him a Happy Easter.  Steven was getting a breathing treatment when we arrived and was pretty tired, but he did finally realize we were there and we were able to tell him Happy Easter.  I even got another half smile out of him before I left as I told him I wanted him to get well so he could come to California to walk along the sand with me near the ocean.

As the three of us walked back down the hall quietly afterward, I looked down at Parker, age 11, struggling to fight back his tears as they fell down his cheeks.  I put my arm around his shoulder and said, “I know, buddy.  It’s okay.  It’s hard to see him like that … I know.  It’s okay.  I did the same thing when I left yesterday.  It’s hard.” 

Courtney (age 17, like Steven) remained silent and stoic, nodding in agreement.  Having recently seen a family friend battle cancer, I could see she was internalizing her emotions while trying to stay strong for her brother.  It was a poignant moment for the three of us near the elevator, as the last time we had all seen Steven together he was much stronger and healthier.  Gravity.  It’s pretty heavy sometimes.

While on his pain meds, Steven had once again exercised his dangerous Houdini escape habit of pulling out tubes early Friday morning (despite restraints – he’s too thin for them).  He pulled out the PICC line that had just been put in – pretty major since it was threaded through a vein in his right arm up to his chest area, so that was scary.  While he was sedated on Friday, they placed another PICC line and drained another 3 liters of fluid from his tummy.  He had a temporary dialysis catheter put in his groin area, and continued to get dialysis through the weekend.  Sleep has been hard to come by this past weekend for him and he’s been very restless.  Right now the infections are what we are most concerned with, and they hope for an update about his peritoneum infection on Monday.  It is extremely hard to cure, so focus is needed right now on healing that infection before moving forward.

I wrote part of this on the plane after a layover on the way back to California.  As I was writing this section (jotting my thoughts on a notepad – no, I was not improperly using my electronic devices), I looked out the plane window and saw individual rays of sunlight shooting through gaps in the Dallas clouds as we prepared to depart.  I looked to those rays of light as an Easter sign of strength, glory, beauty and healing, as it was directly visible in the area outside my window and nowhere else. 

The more I focused on the area, the brighter the rays breaking through the clouds became.  I was reminded of the miracles that have unexpectedly and continually shrouded this child.  And I began to cry … right there on the plane as we prepared for takeoff, relieved I had chosen a window seat.  I wiped my tears as we left the ground and sailed into those same clouds that had just sent me yet another sign of hope. 

I was sad to leave my family.  I wanted to still be there to hold my sister-in-law’s hand and hug my brother once more.  I wanted to stay longer at the hospital, to be with Steven longer and get to know Steve better.  I wanted to hug my mom again.  I was angry with cancer.  I was worried about Steven not getting enough sleep.  I was awed by the strength of his parents and my brother’s ability to juggle so much.  More than anything, I was heartbroken that this beautiful boy – nay, this young man … he IS almost 18, after all – has had to endure this terrible illness.  It’s just not fair. 

As I rose above the clouds in that manmade contraption that manages to get me across the country in only a few hours (Hello!  Miracle!), I looked at the sun now bouncing off the soft, white billows below.  The one word that kept echoing in my head was BELIEVE.  So that is what I intend to do.  I will BELIEVE that Steven will fight this horrible abdominal infection and win.  I told him to envision himself as strong and healthy, and I will, too.  I will BELIEVE he will be able to get the chemo and kick that cancer to the curb.  I will BELIEVE that he will find his way back to health.  I WILL BELIEVE.  Won’t you join me in that?  JOIN ME in continuing to send Steven love and healing thoughts against these crazy infections.

This post tonight is a bit more personal than medical in nature, but I wanted all of you to be able to get a different glimpse of what this family lives every day, to feel what it’s like to walk into that hospital room, to understand even more the bravery of this courageous young man who keeps fighting, despite any odds laid against him. 

I will tell you this:  A smile from that sweet boy is like seeing the smile of an angel, and is the greatest gift imaginable.  I keep it in my heart upon my return to California.  As I told him, I will still be thinking of him every minute of every day.  I just love him.  I know you have all come to love him, too.  Thank you.  Keep sending love, good thoughts and prayers to heal those infections!!  And … 

PLEASE SEND THOSE BIRTHDAY CARDS!!!  🙂

Let’s see how many he will get!  Stop by the store today and get yours for him!  It will mean so much to watch the love pouring in for his birthday.

More Fluid, Yeast Infection in Peritoneal Cavity, Chemo Monday?

Steven had a lot of relief earlier this week after they drained all the fluid from his abdomen, and he was resting much better afterward. A blood culture from 3/26 tested positive, indicating that he still has the blood infection. He no longer complained of pain after the procedure, although was still wearing a pain patch. By draining the fluid, he was at least no longer asking for additional doses of pain medication like before, so that was good. He has continued with dialysis this week, and they were trying to figure out when to pull dialysis and chemo ports due to trying to clear up the blood infection before starting the chemo again.

The culture that grew from the 26th was not a yeast infection in the blood, which was good news. There were a lot of changes in plans this week. He ended up getting a PICC line in his arm last night (I’m educating myself constantly … it means peripherally inserted central catheter – more info here if you’re curious: http://picclinenursing.com/picc_why.html – according to this site, PICCs are frequently used to obtain central venous access for patients in acute care, home care and skilled nursing care. Since complication risks are less with PICC lines, it is preferred over other forms of central venous catheters).

He had his chemo port removed so he’ll get chemo treatments through his picc line starting next week. They will NOT put in a tunneled catheter for dialysis. Instead, they will keep doing temporary catheters until the infection is gone from his blood. This is because his white blood cell count will be wiped out after next Monday when they start chemo again; if he were to get an infection in his dialysis catheter, it would be very difficult and risky to remove a tunneled catheter. They hoped to get a temporary port for dialysis today or Friday, depending on his lab reports.

His pancreatitis appears to be over, and now he’s left with just the peritonitis. Okay, I’m not a doctor, and had to look up the latter – I think Denise should get an honorary medical degree for all the knowledge she has acquired on this journey! According to the Science Dictionary, peritoneum is the membrane that lines the walls of the abdomen and the pelvis and encloses the abdominal and pelvic organs. The space between the two, the peritoneal cavity, fills with inflammatory cells and pus when the peritoneum becomes infected. In Steven, the fluid is building back up on his tummy, so they were hoping to find the right combination of antibiotics to fight that infection so the fluid will go away.

When Denise looked at Steven’s lab report today, she saw that his LDH level (which measures the lymphoma) is within normal range. She was looking forward to talking to the oncologist to inquire, hoping it meant the cancer is going away without additional chemo (he hasn’t had chemo since March 6th). The oncologist who came by was on call this week and not their regular doctor. She still wanted to proceed with chemo next Monday at half the amount of the dose he received in St Louis. Mama Bear was hoping the LDH counts would mean he could let his body heal from the infections a little longer before or in lieu of knocking that white blood cell count down again with chemo. He is supposed to get another temporary dialysis port tomorrow.

Here’s where we really need all of your amazing thoughts and prayers this week: Infectious Disease docs visited and said Steven’s tummy fluid shows that the yeast infection is in his peritoneal cavity (referenced above), which is not a good thing and it’s hard to cure. Let’s all send some REALLY good mojo Steven’s way in hopes that the meds they have him on will work. I’m thinking this: Cancer isn’t good and it’s hard to cure, too. But people like my friend, Tracey Callahan, show you that cancer and illness don’t have to win.

Tracey was diagnosed with Stage IV colon cancer in her early 30s and given only a few months to live – she has now been in remission for nearly 7 years!!! She hiked Machu Picchu at year 5, as a sign of triumph and release. Upon doing so, she said, “For five years, I have been writing a letter in my head to the doctor who told me I didn’t have a shot in hell of being here because my odds of surviving Stage IV colon cancer were ‘nil’. He offered this unsolicited insight in the presence of my three-year-old son and I have been ready to serve him a steaming hot dish of crow since 2003. I had the sheer pleasure of telling that doctor exactly what I thought of him and flipping him the bird on film, with Machu Picchu in the background. I really hope he sees it.” Tracey, YOU are an inspiration.

So yes, things are challenging and hard to cure, but it IS possible!!! Let’s focus on the healing and the wellness. Our Steven is a fighter. Picture him in perfect health and recovery. Let’s help him by sending all of the positivity we can imagine RIGHT NOW!!!!   🙂  They will do a CT scan in the morning to see if they can give him more time to heal before they restart chemo. We’ll keep you posted. THANK YOU for all your love and support for our young warrior!

This shot from earlier this week was too cute not to include. Steven and his dad, Steve, nap Forrest Gump style. Or it's like that shot in Sex & the City where Steve and his boy Brady are sleeping in the exact same position. Adorable.