Cautiously Optimistic

Yesterday, the doctors said they think there is a slight decrease in the size of Aimee's tumors-- possibly 10%. Wouldn't it be great if something were finally working? We'll go back in early December to check her progress again. Hopefully more shrinking!

But ... with the good comes the bad. The doctors also said that Aimee has something called hydronephrosis, which is a blocking and inflammation of her right kidney. They think it's probably caused by the surrounding tumors pushing up against it. She'll have to go in for surgery to have a stent put in so that the kidney can operate properly. It should be a simple procedure, and it may even relieve the back pain she has been feeling the past couple of months. We'll know more next week, but we'll probably head back to NIH in the middle of the week to have the procedure done.

In the meantime, we'll be halloweening. Hope to have some pictures posted this weekend.

Pumpkin Carving

We carved pumpkins last night with Beth, Al and Miriam. Xavier helped too, but I couldn't get a picture of him with his eyes open. I'll try to take a picture of the end product soon.





Thank you everyone for your prayers. We head back tomorrow to see if this treatment worked. We probably won't find out until late on the 30th, and I'll try to post something by the 31st.

Also, Father Chateau -- I wanted to let you know that we have been thinking of you and St. Clements. I'm sorry we weren't able to see you before we left. Thank you for your prayers and the mass being offered for Aimee. Xavier and Tilly miss you, and we hope that we can find a way back to Somerville to visit soon.

At Home

Hi Everyone. We're at home, happily enjoying time with the kids. Sleeping, resting, healing. Next trip to DC is planned for the 29th for a checkup. Hope everyone is well.

- Aimee

Day 16

Busy, busy day. There's so many last minute things that needed to be done. We were running around everywhere trying to tie up all the loose ends before they could discharge Aimee. And then her hair finally started falling out today too. So she went ahead and had it shaved. And I do say-- she looks rather hot bald! :) (But NIH also provided a voucher for a wig, so we also went hair shopping too.) But everything's all set now, and we're heading home first thing tomorrow morning.


Thank you, everyone, for tuning in everyday-- listening, caring, praying. It made things a lot easier on both of us to know that we had so much support throughout.

Let's just pray this is the one that finally works. We'll find out how effective it is when she returns around October 29th.

Day 15

Well, the drugs have been working. Aimee's appetite is returning, and the morphine is keeping the pain away. The doctors say her blood count looks so good that it's possible we could go home as soon as tomorrow! They want us to "practice" first, though. Aimee will stay with me at the family lodge tonight, and we'll see how that goes. And if all's well, we'll be back home for the weekend!

Day 14

Aimee's white blood cell count is almost back to normal, so she appears to be ahead of schedule on that front-- no longer neutropenic. But ... the nausea and back pain seem to be coming back. Before we came here, she had chronic nausea and back and leg pain that was strong enough that she couldn't walk. But, interestingly, as soon as treatment began, the pain went away along with the nausea.

Now it all seems to be returning. Not quite sure what the cause is-- but they're trying various things to help her. Unfortunately, she's allergic to the treatment they usually give cancer patients, Zofran. But she's on a number of other nausea medications-- Compazine, Phenergan, and Scopolamine. Can't tell if they really stop the nausea or they just put her to sleep. There's an arsenal of possibilities, so they're bound to hit upon one that's effective. Hopefully sooner rather than later.

Day 12

Nice and quiet today. Aimee is doing well. Breathing is almost back to normal. Her blood pressure and pulse are still a little bit high, but nothing to worry about. She's still neutropenic, so she can't go anywhere without a mask and still gets tired very easily. So she just rests.

Happy feast day of St. Faustina today, patron saint of mercy. Funny story-- When I was teaching at Assumption College, I would get a lot of jitters before class. During that year, I was borrowing an office from a professor who was on sabbatical, and all of his books, posters, and other odds and ends were still in the room. So I found myself pacing back and forth before my first class, looking for anything to take my mind off my anxiety. On one of the shelves, I spotted a little card that had a prayer to St. Faustina. I can't say I knew anything about her at the time, but I figured any prayer was better than none. So I got into the habit of saying this one before each class (so that God would have mercy on me and not let the kids rip me to shreds.):


O Jesus, who filled Saint Faustina with
profound veneration for Your boundless
Mercy, deign, if it be Your holy will, to grant
me, through her intercession, the grace for
which I fervently pray…

My sins render me unworthy of Your
Mercy, but be mindful of Saint Faustina's
spirit of sacrifice and self-denial, and reward
her virtue by granting the petition which,
with childlike trust, I present to You through
her intercession.

Our Father…, Hail Mary…, Glory Be…
Saint Faustina, pray for us.

I guess it worked too. I never suffered any physical harm from the students .... although I'm sure they seriously thought about it during my lectures on Kant's ethics.


Also:

-- I did a little research on some of the drugs Aimee is on. The effects of the Cytoxan (i.e., neutropenia) hit their nadir on days 10 - 14. But she should be mostly recovered by day 21.

Day 11

Hello everyone--thank you, as always for your amazing love, prayers, thoughts, good deeds--I can't imagine going through this without you. You keep making my day.

As for today, it has been pretty quiet here. I was just transfered back down from the ICU about a half an hour ago and am glad to get out (for the moment at least) of all the monitoring lines they had me attached to--though all the nurses and doctors were lovely to us there--and even then I had my own room. This whole place is lovely and bright--it may well be the interleukin spa after all.

So back at our old 3 Northwest, I have a new room. I should get some decent sleep tonight. The room is also very large and has a giant picture window to let in the sun. I am still on the oxygen for breathing but besides the usual chemo fatigue, I think I am feeling fairly well. And all that despite the fact that I actually have no white cell count-and so no immune system--what neat things are happening in our world, don't you think?

I'm off to eat some dinner. God bless.
Aimee
ps-for those of you who are betting folk, I still have my hair--updates to follow.

Day 10

After 2 doses of IL2, the doctors think she's had enough. Normally, she would be able to tolerate a lot more IL2, but on top of the chemo and TIL cells, a little is a little too much. She's still having trouble breathing, and her heart rate and blood pressure are up again. The doctors aren't worried, though-- they just want to be extra careful. They also say that this amount of IL2 is adequate. The real medicine is the cells; the IL2 is just to boost them a bit.

So, now it's time to convalesce. Aimee's still in the ICU, but once her breathing improves, she'll get to go back to her old room and get some rest. (It's difficult for her to sleep in here with 12 different wires and tubes attached to her and machines beeping every 5 minutes.)

Day 9

Things got a little rougher yesterday. After Aimee received her cells, she had difficulty breathing and her heart rate was speeding. Shortness of breath is a normal symptom for this type of treatment, as the white blood cells like to rendez-vous in the lungs first before they are deployed to the rest of the body. But the heart rate was a little abnormal- it could have been a result of the shortness of breath or something else. But because IL2 usually increases heart rate anyway, the doctors wanted to be extra careful before they started the 3rd leg of the treatment.

Her pulse dropped a little in the evening, and so she was able to get a dose of IL2. But then, of course, it jumped back up right after the dose. So, they figured the best way to care for her was to send her to ICU for close monitoring. Not a fun place to be.

This morning her pulse is down, breathing is back to normal, blood pressure is normal, and pulseox is almost back to normal. She got her second dose of IL-2 a couple hours ago, and so far so good. Everything is looking stable.

The doctors are playing it by ear, but they think she'll probably get just 1 or 2 more doses of IL-2 and stay here in the ICU for another day or so before going back to her other room.

Day 8

72.7 billion cells came home to Aimee after receiving their education. An education in tumor killing!
They'll start the IL-2 later this evening. We'll keep you updated.