Day7

Sorry for my silence. Things have been interesting, to say the least, with some good days and some harder days. Overall I am pleased that my leg and back seem much better so the walking pains have seriously eased. Today we had chemo at 5:30am and have had a sleepy day--very sleepy as the chemo is really kicking in now, but good. Tomorrow is the big day though. I'll get my fighter cells transfused back into me and then the fight is really on. Thank you so much for checking up on us. Keep us in your prayers please-you remain always in ours. lots of love

Day 6

All's well. Aimee was allowed to leave the hospital today, as this is one of the last days before she becomes neutropenic. We took a little wheel-chair tour of the outdoors and played an intense game of scrabble back at the family lodge.

Tomorrow should be low-key too. I probably won't post anything again until Wednesday when the TIL is delivered and interleukin 2 begins.

Day 5

Still Good. We went to mass this morning at 11:00, came back for chemo at noon, and some platelet infusion at 2pm. Aimee's doing well and is eating well. We're taking it easy today. :)

Day 4

Still smooth sailing. Aimee's feeling good, no nausea, little pain. She's had a slight increase in her blood pressure, pulse and temperature, but it's a normal reaction to the chemo. The doctors are surprised she made it to this point so well, considering she already had pre-existing nausea. Must be all those prayers. :)

We tried the video-conference today. Both the sound and video were pretty choppy, but it was great to see the kids. And they were clearly happy to see us too.

Day 3

Nothing to report (No news = good news). A little talking in her sleep-- admonishing Xavier and reaching out to grab Tilly. The worst part of the chemo will be over tonight, and she'll switch to a less harsh chemical.

I have to say, we really like Aimee's doctor here-- Dr. Brock Lanier. He's very friendly, always checking up on her, and even though I am sure he is very busy, he makes it seem like Aimee is his only patient. He always comes in and sits down, asks how things are going, and explains each step of the treatment. Always a smile on his face. He's young, but quite knowledgable. You can also see that he's genuinely excited about what he's doing-- in all the aspects of his office. The nurses have been great too. In fact, we've been impressed with everyone here so far.


Other than that .... It's wet, windy, and chilly out here. How's it out there? :)

Day 2

Aimee received her first dose of Cytoxan at 9:20 last night. Infusion for about an hour. She is also on something called Mesna, which is supposed to prevent any complications with her bladder and kidneys that can be caused by the the cytoxin. So far, so good- she's been sleeping ever since. I guess this stuff really knocks you out. Well, they also pre-dosed her with a barrage of anti-pain and anti-nausea drugs, so that may be part of it too. Another dose tonight @ ~9pm. I'll let you know if anything else develops. These first 2 days are supposed to the worst part of the chemotherapy.

Day 1

Nothing yet. Aimee's still waiting on an MRI, which will happen late this evening. Afterwards, the chemo infusions will begin. She's doing well, apart from back and leg pain. They've had her on a saline drip all day, so she's pretty well hydrated. And that always makes a big difference for her.

I've posted a tentative schedule on the right. It's technical, I know, but it's mostly for my sake so I can keep track of what's ahead. I say it's tentative because the doctors will be following it somewhat loosely after the TIL cells have been given to her. They'll only give her as much IL-2 as she can reasonably tolerate, erring on the side of safety. And since her immune system will be knocked down, there will be around a week of recovery time. Could be less, could be more. (Apparently, her immune system won't be back to normal for about 6 months after treatment.)


Also:

- The priest, the other one, the non-dog one, just dropped by to offer communion. A little communio-therapy with her immuno-therapy.

- Once all the tests and scans and all the running around this hospital is done, we're going to try to video-conference with the kids back in Franklin. Might be fun, could also be disastrous. I don't think the kids miss us quite enough to sit still and talk with us for any extended period of time. But even a few seconds will be worth it, just to reassure them that we still exist as something more than just disembodied voices on the telephone.

NCI

Yesterday, Aimee arrived, got admitted, and was scanned. Today, she had a port put in her, and she's due for 2 or 3 more MRIs later today. The fun, however, doesn't really start until tomorrow, sometime in the afternoon, when she gets her first dose of chemotherapy. Dr. Lanier explained to us that the chemo will be at its worst in the beginning, for 2 or 3 days, and then gets better. (Although Aimee's held on to her red curls throughout this, he said she'll most probably lose them this time around.) The schedule for the treatment will be slightly different than what I posted before, but the content will remain the same.

But so far, things are good. Aimee's been sleeping and feeling ok.

For the duration of her treatment, they've put me up in the Safra Family Lodge , which is right next to the hospital. No back-breaking cots this time, and I can go back and forth between the buildings 24 hrs a day. I don't know if Aimee can receive mail directly here, but you can send it to me at the lodge, and I'll gladly deliver it to her. The address is

c/o The Safra Family Lodge at NIH
65 Center Dr.
Bethesda, MD 20892


Other miscellaneous events, observations, ramblings:

- Aimee and I tried to watch "Heroes" on NBC last night. But a number of things got in the way. First, the nurses had to take a blood sample, but since Aimee had to fast before her scans, her hydration was low, and it was difficult to get a good vein to poke. So they stuck her 7 times. But she was stoic throughout, until the last nurse finally succeeded. You see, they have a policy here at NIH where a nurse only has 2 chances to find a vein. If they are unsuccessful, then they call in another-- hopefully more experienced-- nurse to give it a try. So, 4 nurses had already tried, some only daring enough to try once. But each had their own unique approach, and each promising they'd get the vein. One claimed to have the steadiest hand on the floor, one professed the "old school" nursing techniques, but none of these worked. Finally, Nurse Ann Brady came in and dimmed the lights. "Don't be alarmed-- I don't work by sight, but by feel," she said. Amazingly it worked, and Aimee, who had been quiet the entire time, blurted out, "Ann Brady, I love you." Aimee wasn't in a lot of pain, though-- she was just frustrated that she couldn't get any rest throughout the ordeal. (With the chest-port put in, there will be no more needless needling-- thank goodness.)

By the time they were finished, most of the "Heroes" premier was over. And then it was just to difficult to get into. I guess we also remembered why we stopped watching it last year too. There's really not much more to that show than the mere novelty of the superpowers. The script is poorly written, and many of the characters are just too bland to watch.

- There's mass offered daily at 11am and there's a chapel of the Blessed Sacrament on the 7th floor. The chaplain is a little bizarre though. He stopped by yesterday, only to invite us to play with puppies. (Apparently, pets are supposed to help reduce stress. Pet therapy, they call it.) So no God today, just Dogs.

- They have an arts and crafts room somewhere on Aimee's ward. We have yet to see it, but we're certainly curious about what it has. Scissors, paste, felt, and googly-eyes? I guess we can start working on Christmas presents...

- Some good news: Aimee put on 5 pounds since her last visit here, mostly due to high calorie shakes and smoothies that the dietician prescribed. And they actually tasted pretty good too. (I mixed and tasted them for her.)

Update

I'm sorry for the lack of updates. Our internet connection is pretty spotty and when we do get it, it's slower than dial-up. But I'm on now, and here's where things are:

Dates are set. Aimee goes into Boston for a colonoscopy on Wednesday the 17th. (This is to ensure no damage occurred during earlier treatments that could worsen through NCIs treatment.) On Monday the 22nd, we fly out again to Maryland for the long haul. We'll be there until at least October 15th. Xavier and Tilly will have to stay with Beth and Al; it will be tough on them and us, but it's the only way we can do it.

So, for three weeks, Aimee will undergo a series of three treatments. The first week, she'll go through some very strong chemotherapy that is designed to destroy her immune system. During the second week, they will introduce the TIL (Tumor Infiltrating Lymphocytes) cells they have been growing from the tumor that was removed, building up her immune system from scratch. The final week, she'll go through IL-2 in an attempt to boost the effectiveness of the new cells. It's gonna be a rough ride.

I'll keep you posted.

Surgery went well.

Thanks for the prayers, everyone. Aimee's surgery was successful-- no complications, and one of her more bothersome tumors has been removed. She's pretty groggy right now and will probably stay at the hospital overnight.

The doctors have been great, and they'll start mixing up her magical elixir right away. It will be around 4 weeks, though, before we know if they are able to grow the cells needed for this treatment.

Surgery Tomorrow

It's been a long, tiring day-- about ten hours at NCI today. The good thing is that it looks like Aimee will be eligible for a clinical trial that involves T-cell therapy. But they want to fast track her and start as soon as possible. So that means that we will be staying here an extra day so that Aimee can have a tumor removed. (They will be able to extract the cells they need from this tumor). Surgery will be around 1pm tomorrow. It should be a relatively simple procedure, lasting about 30 minutes, but they still have to put her under general anesthesia. So please add a few extra prayers tomorrow. :)