Sunday, June 28, 2009

Update on the leg and chemo

Brent's pathology reports came back!! Drum roll please..... all the margins are clear. That means the doctors cut far enough from the edges of the cancer to get all of it without leaving any behind. AND... the cancer was 90% dead!!! Dr. Beinart was shooting for 99% but this is still a a great result. Since there was still 10% alive (even though technically it is really all gone since they took the leg), Brent is continuing with the chemo. He will have 4 in-patient treatments every 3 weeks lasting about 5 days that will consist of getting 7 doses of Ifex and then 4 rounds of out-patient treatments of a completely different chemo med. Our friend Britne who just finished her chemo says the out-patients are a piece of cake. We are hoping that all the chemo will be done around November!!

Britt finished chemo on June 12th!!!! Her END-OF-CHEMO party at Dr. B's office.

Brent's leg(residual limb) is healing very well. He had about half of the stitches taken out at the end of May and the rest 2 weeks later in June (about 20 stitches all together). There is a place located where the back of his knee would be that is having some problems. The skin has folded in and is pretty deep. It isn't painful and doesn't cause him any problems, but the doctors are worried about it from a hygeniene point. In July, Brent will go see a plastic surgeon for a consult to see what can be done about it. Most likely, they will wait until all the chemo is finished to fix it. The swelling has gone down very quickly. Brent was given a compression sock after the surgery that is very tight and worn on the limb to help reduce swelling. He recently had to get a smaller sock since the swelling had decreased so much. Mentally, he's been doing pretty well. He has his good and bad days, but who can blame him. He's slowly becoming more use to it. Also, the phantom sensations were pretty bad the first month. Nuerontin was prescribed for it, but didn't really help alot.

Brent's swimming!!!

Brent started his first round of post-op chemo on June 5th. He was in the hospital from Friday to Wednesday. Everything went as planned. The two biggest complaints were A. he got a dose of steroids at 9 p.m. so he was up all night. I was miserable and not to mention, very cranky. and B. everytime he stood up, he got the hiccups, which can also be an effect of the steroids. Brent felt pretty good the rest of the week, but on Sunday he got the dreaded fever. I was very resistant in calling the doctor. He had been feeling so well and had a good amount of energy so I assumed his counts had just dropped a little and thought we could ride it out. Well good thing Brent called on his own. The doctor on call sent us to the emergency room to be admitted immediately. The bloodwork results showed that he was nuetropenic to say the least. Brent was going to be staying at the hospital for a few days. After a few bags of blood and 2 units of platelets, his counts were high enough for us to go home. Also, Dr. Beinart prescribed Lyrica for the phantom sensations and it has helped alot!

The hair is falling out again. This time we decided to take a different approach.

Yes... that is duck tape.

In between the first post-op round and the next, Brent got casted for his prosthesis!!!! We are so excited for him to get a leg!!! Can't wait. Brent hates his crutches. At the first appointment, they fit him with a liner and took a few measurements. He will wear this liner inside his socket. The liner is made of silicone and has "ribs" on the outside. These ribs help create a vacuum/suction inside the socket to hold the prosthesis to the limb.
We call the liner, the Space Suit. The white area is the ribs.
Next, they did the casting. The mold was made out of plaster and the whole process was very interesting.

A few days later, we had a test run. Brent was fitted into the test socket, and more measurements were taken. They are going to make a few adjustments and then we will go back for another test run.
It's a bit hard to see the socket because it is clear. It's over the space suit. That's Scott Spring, Brent's prothetist, on the side. He is really good at what he does and seems to really care about his patients. We think he is awesome!

Once the socket is ready, Scott will make all the arrangements for the components of the leg to come in, and piece them together. Hopefully it will only take a few more weeks!!

Brent is finishing up round 2 of post-op chemo right now. He started Friday, June 26 and hasn't complained too much. Dr. Beinart lowered the dose because Brent's counts dropped so low last time, so we are in here for 1 less day!! He has been sleeping alot this round, and thankfully not keeping me up all night. Still getting the hiccups.
I'm getting pretty burnt out on the hospital stays lately. I have actually snuck away quite a bit this round! Went to Cafe Adobe with my mom and stepdad on Saturday.


  1. My words simply cannot express how amazing I find the two of you to be. To be so young and to have to endure this seems unfair but the strength you as a loving wife, and he as a strong and perservering husband, have shown all of us is unforgettable.

  2. Thanks for all the updates!! Ya'll are awesome. We really had fun hanging out with you guys a few weeks ago!

  3. You rock, Brent! I am so impressed by both of you. Thanks for keeping us updated.

  4. Hey, Brent and Kelly! Haven't seen any CarePage updates so I decided to check out your blog and THIS is where it's happenin':-) LOVE the hair/duct tape picture...LOL!! Aunt Sallie and I was up at Methodist yesterday visiting another of Dr. Beinart's patient's and we looked for you on the 8th floor. Bumped into Mrs. Tinsley and she said you were there last week, but it sounds like all is going well. Can't wait to see the new leg...are you guys going to be able to make the Sarcoma events? We'd love to see you both again. Hugs to you both!
    Aunt Pammy<><

  5. Hi Kelly and Brent, it's Kathleen from Methodist. :) Brent mentioned the other day that you have a blog and since I'm an avid blog reader/writer myself I thought I would look yours up. I hope you're not weirded out! Y'all are doing so great and I'm so happy that we won't have to see you back in the hospital anymore! Looking forward to keeping up with you here if it's okay with you!

  6. Hey Brent! You are amazing Scott and I are praying for you and your family! I hope you are not weirded out that I blog stalk you! ha ha! What an amazingly hard decision you had to make. I hope that things will continue to get better!

  7. Oh my gosh, you have a blog! Yaaaaay! I've been wondering how things were going and I think about you guys all the time and we pray for you! Brent looks really good bald! You guys are so amazing, I'm seriously tearing up reading this blog. I'm SO incredibly happy that things are going okay. I miss you guys!

  8. HEY WEAVERS! I was just thinking about y'all and thought I would write a message to see what is new! I sure do miss you Kelly. I hope that all is going well and I am looking forward to an update real soon! Miss you!

  9. Hi, I"m new to your blog and thought I'd stop in and say hey. I hope that you are enjoying life and living large!

  10. Brent/Kelly,
    Thank you for sharing your journey. I am sorry you had to go through so much..I just read through the whole blog. I am very happy I met the both of you at MDA Sugar Land this morning.

    I guess we both have quite a ways to go, but I am praying for the both of us...praying that God would heal us, but mostly praying that He would touch our spirits so that we can put our full faith and trust in Him despite it all. It's very tough to stay positive amidst all this, but with Him, it's possible.

    Here is a passage that I shared in my blog that gives me lots of comfort:

    2 Corinthians 12:7-10 says
    "To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me “My grace is sufficient for you, for my power is made perfect in weakness”. Therefore, I will boast all the more gladly of my weaknesses so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships in persecution in difficulties. For when I am weak, then I am strong.”

    I will see you around! God bless you both!

    Daniel Haddad

  11. Dude, Brent! I've followed some of this story through Ammon, but I don't know why I didn't think to blog-stalk you until now. So glad to be back in touch, electronically if nothing else.

    So we should pull something together for 11/11/11 in remembrance of the Vibe. Slurpies and a dance party for starters, but we'll have to figure out the rest.

    Anyway, we should talk sometime. Send me your e-mail address and I'll send you an invite to check out our blog. We'll keep you in our prayers.

  12. I recently came across your blog and have been reading along. I thought I would leave my first comment. I don't know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.


    Cancer Treatment Guide