Introducing Our Blog – Fluid Drained from Abdomen – Chemo Hold

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

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

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

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

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

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

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

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

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

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

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

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Comments

  • Valerie  On March 29, 2010 at 8:09 pm

    Feel free to make comments! Just testing to see how we look. 🙂

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