Last day of treatment #8

Hello all! Just a quick check-in to let you know we are on the last day of treatment #8. Scott is SO ready to go home - it seems like the last day drags the most. It's been a pretty uneventful week, other than the rather annoying fact that he was admitted to Jackson instead of UMH. Scott's normal doctor is on leave this week, so he was admitted under another doctor and this doctor only admits to Jackson. It took 3 hours just to get admitted! The nurses and doctors here are nice enough, it's just old as dirt and not as comfortable. In the end, is care is good and that's what matters the most, but it does make it easier to be at UMH with his normal peeps. (They all know him and love him there). He's going to post in a few days and say hi. (Plus, I always let him be the one to change is "chemo counters")

Hope everyone has a great weekend!

~Amy

Scott gets an A+

An A+ transfusion, that is! He's okay - but he was delayed in going home yesterday because his hemoglobin was low enough to need a transfusion. He wasn't VERY low, but low enough. They kept him until about 6:30pm to give him two bags of blood (thank you to all of you that regularly donate blood) and monitored him for awhile to make sure there were no reactions. We now know his blood type is A+, which he didn't know before. So if (God forbid) we ever need to make a serious call for donations and platelets, all you A+ people be on standby, ok? :)

He's doing good today. He's home and resting because he's exhausted, but he plans to be back at work tomorrow. Thanks for all the love and concern!

~Amy

The update from Tuesday and fever strikes again

Hi guys! It's Amy doing this update. Sorry for the delay - it's been a typically busy week. Unfortunately, it got even more busy for us Thursday night when we had to go back to the hospital in Miami because Scott had been running a fever all day. We're still here, but he's okay. His fever broke shortly after getting here late Thursday night, but they are doing the same drill as last time - monitoring blood cultures to make sure there are no signs of infection and pumping him full of antibiotics. Fever is a real critical issue for chemotherapy patients and no one is taking any chances. Right now the plan is to go home tomorrow and Scott is counting down the hours. The silver lining is the room he's in - it looks like a hotel room! Seriously, it's huge, there's wood floors, a sleeper sofa, a new flat screen TV and beautiful granite countertops. It's just luck we got this room. We came to Sylvester to be admitted, and they started construction on the inpatient rooms on the 2nd floor (where Scott was on Monday night). They had us come up to the 4th floor, where they had just finished construction on rooms that are intended for bone marrow transplant patients. At least being in these nice rooms eases his frustration over being here just a little bit. (He's still not a happy camper!)

As for the update regarding surgery or radiation, it looks like radiation is what's going to happen. There's several reasons why they are recommending radiation. His tumor is located very close to the Sacrum (shown below) and very close to some critical nerves - in particular, ones that are important for bowel and bladder functions. If they surgically remove the tumor, they basically have to "graft" bone back in it's place and the location makes it harder for the surgereon to have something to graft to. Plus, when they remove it, they have to remove the tumor with enough "clean" (cancer-free) margins on either side. The location makes this harder. Another issue is his recovery - the surgical procedure for this will make recovery difficult. His doctor said surgery would be harder on him than radiation.

Here's a picture of the APPROXIMATE location of his tumor. Y'all know i'm not a doctor and we can't understand where it is very well from the images they show us, but this is about where it is.

As for the when, where and how about radiation, we don't know much yet. Dr. Adams will be meeting with other doctors next week to determine the plan. (It's actually a weekly "conference" they have.) Since Scott is just so special and unique :) a panel of doctors are going to review his chart and assist in making some decisions about which of the many methods of radiation they will be giving him. Several factors are up in the air, like how often, whether they'll do it soon or after chemo, and very importantly, how they are going to protect his bladder and bowel (which will be in the way). We should hear more about that towards the end of next week and will probably get an appointment to meet with the radiologist directly. We'll keep you posted.

Also, it turns out that the tumor has actually shrunk very little, but Dr. Adams is still very encouraged because of the new bone growth. The significant decrease in his pain may be just due to a decrease in inflammation around the tumor, but it's still a good sign. The way Dr. Adams put it is that when we first saw her, the tumor and bone were fighting for space and the tumor was winning - now bone is winning. :) She hasn't seem him in several months and was very pleased about how good he looks and how well he is moving and getting around.

We hope everyone is having a great weekend and we send our love to all of you.

~Amy

Checking in from treatment #7

Hi all! Just checking in from treatment #7. This treatment is a bit different - it's supposed to be a one day outpatient, but it ended up being a one day INpatient. Scott gets labs (bloodwork) periodically between treatments. This is to keep an eye on his white blood counts, red blood counts and platelets (among other things). Last Wednesday's labs showed a low platelet count - not too low that he'd need a transfusion, but low enough to postpone chemotherapy until they get better. So, the plan from Liz was to do his "pre-chemo" labs in Deerfield, see how they look, and then determine if chemo is still on. So, Scott once again surprised everyone and his platelets bounced back and chemo was a go.

The difference is that he got admitted this time, but that's more out of comfort and convenience for him. We wouldn't end up leaving until 1 or 2 am and we have to be back down here in Miami at 10:45am for another Dr. Appt. By being admitted, he can just stay down here and rest. We're in a different place, too - we're in an inpatient room at Sylvester, rather than at the UM hospital. These aren't private rooms, but there's a very nice couple in the next bed and Scott and him have been chatting. We saw Liz this morning and everything else is looking good. Dr. Fernandez wasn't here today, but Liz is such a sweetheart so Scott doesn't mind. She showed us the MRI/CT images of his tumor and it was fascinating to see where the new bone was growing.

Tomorrow's appointment is one we've been anticipating for awhile. Tomorrow, we meet with his original Oncologist (who we learned is also a surgeon) to discuss whether or not Scott is going to do surgery, radiation, or a combination of both. We hope to come out of that appointment with a bunch of updates, so one of us will definitely do a blog post after that. Stay tuned!

Scott says "hi" to all and is laughing because it means two things right now - he says hi to all of you and he's feeling a bit "hi" because they just gave him a dose of Ativan! :) He's extra funny when he's all loopy! He always orders "Purée Melanga" (a Cuban favorite) and he says it like he has an accent and he cracks himself up when he does it. The "accent" isn't the funny part - watching him crack himself up is!

Love to all!
~Amy