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)
P.O. Box 1020
Bristow, OK 74010
Again, if you make a donation and want your red TEAM STEVEN bracelet, email me afterward at firstname.lastname@example.org 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:
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,
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!