Aimee

I know it’s been over 2 weeks now, but to me it seems like no time has passed. Time seems to have stopped.

With advanced cancer, there is usually a certainty of death, but you are also given the chance to prepare for it, in whatever way you can. But we didn’t get that option. Everything came so suddenly that I’m still reeling from it. Aimee and I always figured that there would be some point of no return, some news of cancer spreading to other organs, and then the doctors would give her a time frame. Then we could grieve together, discuss things, say goodbye.

But we had just received good news, the first good news we had gotten in all of her treatments. 10 percent reduction! It seemed something was finally working, and there seemed to be real hope. And then …

The way the doctor explained it, it was difficult to understand. While the cancer hadn’t spread to other organs, it had thoroughly ruined her lymphatic system. According to Dr. Atkins, she had something called a chylous effusion which was causing the build-up in her belly. When they removed that fluid from her, they discovered that it contained what he called “a week’s worth of calories.” Apparently, Aimee’s tumors had shrunk, but they had also hardened, cutting off the supply of nutrients to the rest of her body and dumping them in the abdomen. Ultimately, where the tumors were and how they had affected her made them and the damage they were causing inoperable. And giving her I.V. nutrients wouldn’t help either, because they would end up in the same place.

Still, the doctor had no definite time frame. A couple of weeks, days …. It seemed as soon as he said this, though, Aimee was on her way out. And at this point, she wasn’t really conscious. But I stayed up with her all night, and it wasn’t until early the next morning that the nurse said she could go at any moment. I had no idea it was going to be so soon, so quick, so sudden. Like a thief in the night. I held her in my arms until the last moment.


The amount of people who came to the wake and the funeral was amazing. There was a traffic jam at the wake, and the police had to come to direct traffic outside the funeral home. And I know there were even more who wanted to be there but were unable to. The outpouring of love and support was unbelievable. Thank you, each and every one, who prayed for Aimee, supported Aimee, loved Aimee.

****** ********* ****** ******* ******* ******* ********* ********* ********

Aimee was the embodiment of the transcendentals: truth, beauty, and goodness. These aren't just the words of this poor philosophy student, who clumsily sticks to familiar jargon. Each one of the qualities was absolutely essential to the way that Aimee was. And she had the ability to draw people to her and bring out these qualities in them.

It was Aimee's mind that I fell in love with first. She had a real wisdom and insight, to see not only the whole and what was important, but the particulars that formed the whole. Not just her eye for details-- but her eye for which details mattered. I always told her she had such a sound mind. I know that sounds wrong, but I meant it in a stronger sense: the ability to set aside emotions and see what is truly good and act in accordance with it out of love for it. She was passionate, but her reasoning was never overtaken by or based upon her emotions. And her wisdom was most evident in her taste: she knew a good poem, a good novel, a good movie on a quick read. When we were engaged and I was in Texas, we'd spend hours reading poetry over the phone together, and like a sponge, I would absorb everything she'd have to say about Heaney, Frost, Yeats and all the others I could throw at her. She knew it, delighted in it, and was so happy to share what she could see.

Aimee always said she was never meant for a body-- usually after she did something clumsy. :) Although she had been graced with such a beautiful one. I loved to just look at her. And when she smiled, she had such a glowing presence that would cause anyone to fall in love with her. I loved her hair, and she jokingly would ask me if I would still love her if she lost it. And when she did finally lose her hair, she in fact was more beautiful. Perhaps because it was clearer that her beauty was rooted in something much more permanent.

Aimee was absolutely selfless. She got upset-- really upset-- when she had complained during Xavier's birth, which took more than 48 hours. Which she took no pain medication for, no epidurals-- nothing. She was afraid that any drugs would in some way harm the baby. And Xavier was born in what is known as the posterior position, which causes an intense amount of back pain throughout. But she was upset because she saw her suffering as her offering to God-- and she felt she failed in that offering (!) because she complained during his birth. Incidentally, Xavier's birth lasted from Easter Sunday night until early Tuesday Morning, while her last labor, the labor of dying, went from Sunday evening to early Wednesday morning. She did not complain about pain during her last days.

And she was the bravest person I ever knew. Never showed her fear and always faced her fears. All the medical procedures, all the needles and surgeries, she didn't blink once. She was tougher than nails. It truly was something you had to witness, the calm she showed in the face of everything that was frightening.

And she was the most grateful person I've ever known. I really don't think an hour went by in her life where she didn't say thank you-- and she always meant it. I used to tease her and call her the "thank you" bully. :)

And she was a great mother. It has been great to go back over the blog from the beginning until now. It reminds me of how much Aimee loved our kids, how much joy she took in playing with them, in mothering them, in simply being with them.

Virtue, it seems to me, is something that must be tested and will be tested. It must be put through a trial, must prove itself. Those who are truly wise, beautiful, good, brave, and loving will have those virtues tested, refined, and strengthened. That's how I try to make sense of her cancer and the suffering she endured. This battle was, in the classical sense, her aristeia. And she truly shined throughout.

wednesday

After a long and heroic battle with melanoma, Aimee passed away peacefully this morning.

Funeral
-------
A Funeral Mass will be celebrated for Aimee Saturday, November 22nd at 10am in St. Mary's Roman Catholic Church, 17 Waterville St. in North Grafton. She will then be laid to rest in St. Phillips Cemetery on Millbury St. in Grafton. All are invited to calling hours in the The Roney Funeral Home North Chapel, 152 Worcester St. in North Grafton, Friday November 21st from 4 to 8pm. Memorial donations may be made to:

The Cowan Children's Education Fund
c/o The Alcarez family
5 Hilltop St.
N. Grafton, MA 01536.

update

Aimee's still in critical condition. It's difficult to pinpoint what the particular complication is. her heart rate is very high and she's very bloated too. still extremely fatigued and having difficulty staying alert. they have a lot of theories and are treating things as they can.

she was extremely dehrydated because her lymph had been leaking into her abdomen. the liver isn't working great at this point either.

they are currently draining all the fluid that has accumulated in her belly. hopefully this will bring her relief as she is in a good amount of pain.

emergency room

yesterday, aimee's health took a bad turn. she was extremely lethargic and confused. her blood pressure had dropped very low as well.

the doctors are unsure of the cause of the problem at this point. her kidney and liver are failing and they're not sure why. she also has an infection.

right now she's considered to be in critical condition. please pray for her.

Visit to Beth Israel Hospital

We went to Beth Israel on Tuesday, as Aimee was feeling extremely tired and bloated. They had a look at her and have scheduled a scan for later this week. They thought maybe her blood counts were low and were ready to give her a transfusion, but her counts ended up fine. Also it seems, at least from the blood analysis, that her kidneys are working well. We'll probably go back into Boston tomorrow and have an appointment set for Monday as well.

In the meantime, we're working on getting Aimee's weight back up. NIH gave us some additives called Benecalorie, which should add 300 calories to anything she eats. Hopefully this will help as putting weight back on has really been an uphill battle.

Back Home

I'm sorry for our silence. I've had a hard time trying to connect to blogger.

The week at NIH was a tough one. Although the surgery went well, there were other issues that developed with Aimee's bladder and her blood pressure. We ended up staying until Saturday.

We're home now, but there's still lingering problems. Aimee's been retaining a lot of fluid recently which makes things extremely uncomfortable for her. We'll probably check in at the hospital some time this week just to see if there's anything they can do to help.

Thanks for your prayers.

(still working on uploading pictures.)

surgery today

Aimee goes in this morning to get a stent put in her kidney. Scans showed that it was enlarged and not really working. Hopefully, this will fix her up. The doctors say that there is some chance that the kidney won't recover-- since they have no idea how long it hasn't been working-- so say some prayers for her.

11:15am-- The procedure went fine, and Aimee is back in her room doing well.

Off Again

NIH called and wants us back soon. Tomorrow soon. So we fly out again in the afternoon and hope to get Aimee's surgery at the beginning of the week. (Did I mention I really _hate_ flying? Oh well-- Aimee's fine with it and she keeps me calm.) I'll keep you updated. We also have some Halloween pictures, including one of Aimee as Avatar the Last Airbender-- I'll get those up soon too.

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.

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. :)

All Moved In.

So we moved out of our apartment this past week and into Aimee's sister Beth's house in Franklin, MA. Beth and her husband Al have been so kind and helpful to us, and the kids love staying here. Plus, with Beth's help, Aimee can rest while I can pursue work.

But for now, we're set to go to Bethesda early Monday morning where Aimee will undergo a series of tests. We won't know the results of those screening tests until the following Monday, but we'll keep you posted.

Thanks for all your prayers.

NCI

Heard from NCI yesterday and they would like me to come for a consultation visit to screen if they will accept me for the study they are doing. If we can get tickets arranged and everything else (scan copies etc) all set, it looks like we will head to Maryland in a week and a half or so. Meanwhile we are moving out of our apartment-hopefully this Monday. Good times here :)
Hope you all are well. with love
A


NCI called this morning (Friday) and said the earliest they could see Aimee was 9/2. So we've got our tickets to fly out Monday 9/1 to BWI and return on Wednesday 9/3.

W

Still no news

Still no news. We are still waiting to hear from NCI. We'll let you know when we hear. lots of love,
A

No News Yet.

Still waiting to hear from NCI. They should be contacting us soon though. In the meantime, I thought I'd entertain you with a picture of Tilly. Notice anything strange about this picture (other than its poor quality)?


Ok, so it was a trick question. It's not really a picture of Tilly; it's of Aimee when she was two years old. We found it while we were cleaning up the study and were amazed at the resemblance.

Change of Plans

Aimee won't be taking the Taxol treatment tomorrow. Her doctor called and said he was in contact with the National Cancer institute in Bethesda, MD. They said they would like to see Aimee soon, and they had a couple of options for treatment. That's about all we know right now. More details to follow in the next couple of days.

Yet another treatment

It turns out that Dacarbazine, the chemotherapy that Aimee was on, had no effect. She was supposed to go in today and get one more dose, but her MRI and CT scans showed increased growth. (But the tumors, luckily, are still restricted to the lymph nodes-- no other organs are affected.) So Dr. Atkins said we should stop the Dacarbazine now and try something else.

He suggested that Aimee try another Chemotherapy (Taxol) next week. Taxol has a history of positive responses from other types of cancer, and it has recently shown some promise in slowing the growth of melanoma. Aimee will go in once a week for the next 3 weeks. Meanwhile, Dr. Atkins will be looking into the possibility of going to NCI in Maryland, where Dr. Rosenberg is working on special T-cell therapy.

New Niece!

My sister Betty and her husband Chris welcomed a lovely baby girl yesterday. Her name is Madeline Ava, she is 7 lbs 10 oz, and we can't wait to meet her. We hear she is perfect, dark haired and eyed, and we couldn't be happier for her mom and dad.

Xavier Keeping Busy

The force is strong with this one...

(Thanks for the cool picture, Uncle Bill!!!)

Quick Update

Aimee's back home and kids are better. CT scan tomorrow and MRI on Monday. Then last round of Chemo on 8/5.

Flu

After a wonderful, restful weekend in Conn with my sister Kate and her family, the kids have, spitefully I think, come down with the flu. I may have to retreat to my folks' house to avoid getting it. Please keep us in your prayers that the little ones get well soon and that I don't come down with it.
with love
A

Chemo Round Two

With lots of help from friend Sadie and sister Lizzy, Will was still able to teach his Thomas More summer program class yesterday while I had my second dose of chemo. It went remarkably well--well...with the usual amount of fantasticness on the teaching part but extra-remarkable on the chemo part. I am feeling well, better than I have in a long while, and feel like I am finally turning a corner with this stomach issue. Hope that makes sense :) Thank you for all your good suggestions and prayers. love
A

Summertime

I have been feeling much better the last few days, so we thought we'd seize the day and get away while the getting was good. Will quickly searched around and found a cute little B and B on the beach in Cape Ann. There were afternoon swims, evening walks and morning swims. And plenty of sandcastles and snoozing on the blanket. Then we hit Plum Island for the morning of the fourth of July before rounding it all off with lunch and the boardwalk in Newburyport, Ma. We had a lovely, lovely time.

Feeling Better

I just wanted to drop a quick line to let you all know that I am feeling a little better. I am still dozy and sore (and pretty well drugged up) but as Will said, chemo seems to be my cure for nausea. I finally feel like I just might want to eat something. So for now, its back to bed with me. But again, thank you for all your kind thoughts and prayers. With love,
A

First Dose of Chemo

The chemotherapy went well yesterday. We were at the hospital for 4 hours or so. No reactions, no problems. The doctor offered Aimee some oxycodone for the pain, as the over-the-counter pain relievers haven't been working. (So far so good-- keeps her pretty drowsy though.) They also offered something called Megace, which should boost her appetite. So far, her nausea has been less severe than before. (Who would have thought that Chemotherapy could be used as a cure for nausea?)

Her white blood cell count will drop, so we have to take extra care that she not catch a cold or the flu while she's being treated. Also, we got mixed messages whether she will lose her hair. The doctor said "thinning;" the nurse said "losing." Needless to say, we're hoping for the former.

Chemotherapy Today

It's been an uphill battle fighting Aimee's nausea. She still hasn't been able to put on any weight, but the doctors suggested we come in today anyway and start treatment. They figure at this point the cause of the nausea is most probably the cancer itself, so the best way to combat it is with the chemotherapy. And Aimee figures that if she's nauseated anyway, she might as well be getting the chemotherapy. We're gonna see if we can get some good drugs to help her through it.

Eastern Medicine

This last week we have ventured into eastern medicine with two visits to the acupuncturist. This has been an interesting experience. My first visit took over two hours, but my second (this morning) was a hour. In all that time, the acupuncturist only puts about 9-12 needles into me. At first she asks what is hurting, where and why. Then, I get up on the table; she puts 1-2 hair-thin needles in my hands, arms, legs, feet and in the skin between my eyebrows. She puts each one in until she feels a tug and I feel a twinge and then adjusts it till it is comfortable to me. Next--the strangest part to me--she leaves me there to sleep or meditate (or say the rosary) with the needles in for 30-45 minutes. The bodily sensation is both relaxing and a little frightening as I feel somewhat paralyzed and comatose with the needles in. Then she comes back, takes them out and I'm done. So far though, the results have been good. I have slept more in the last two nights than I had in a long time and the nausea seems improved. Food is still a challenge but it seems to be very slowly getting better. I have still been losing, rather than gaining, weight, so hopefully this will help some.

And we did hear about the latest melanoma treatment coming out of Seattle (Click here for the story). Reading up on it in the New England Journal of Medicine, we find it still is very much in its preliminary stages with only one documented success and now only open to those who have been given more than 6 weeks but less than 6 months to live. Only 12 people are expected to be accepted for the next trial. However, we emailed our doctor about it and are waiting to hear what he has to say (apparently, wisely forseeing the melanomic frenzy that would ensue, he is out of the office for the day). We will definitely keep a hopeful eye on what develops. And again, we'll let you know what we hear... :)

Lots of love and many thanks for thinking of us,
Aimee

Next Treatment.

We met with Dr. Atkins this afternoon. He suggested the next line of attack be chemotherapy (Dacarbazine) to slow down the growth of Aimee's tumors. It would be administered in 2 doses over 6 weeks. After she completes that, he suggested 2 possible clinical trials (Anti-PD1, Anti-cd137).

First things first, though. He said Aimee needs to recover fully from the last round, put on some more weight, and get her strength back before she undergoes chemotherapy. So that's our particular task the next week or 2.

Thank you!

Dear friends, sorry for our silence there for a few days. I seem to finally be emerging from some extremely unpleasant version of the stomach bug that has had me in its clutches for the last two weeks. I think (hope!) I am on the mend at last. Thank you so much for all your love and encouragement. Once again, I must insist we have the best family and friends in the world.

Results

MRIs revealed that while Aimee has no cancer in her brain or other vital organs, it has once again spread. So RAF265 didn't work. We will discuss options next week.

MRI'ed

I had a head MRI yesterday and a regular one today--hopefully I will have results tomorrow afternoon or so.

With those out of the way, I am feeling better. I'll let you know what we hear, when we hear it. Got to run, Xavier is chewing on my arm...

And then, a not so Memorable Day...

Yesterday we went over the hospital to get me re-hydrated. Court and Beth, wonderful dear family that they are, took shifts minding the kids, and Will and I made a day of it all around. * The docs rearranged my prescriptions, added a head MRI to my scans for next week, and gave me a few days off my cancer meds. It was a long day, but I am feeling much better now. The kids, on the other hand, are feeling a bit under the weather. We've warned you; stay out of Somerville for a few days...
Love,
A

*There is nothing like a few hours in the ER to remind you of how lucky you really are. While I was anxious and cranky with the staff for the long wait, a man came in with his finger in a glass of water. He had cut it off with a table saw; but being from Florence, he didn't even know the words in English to explain how it had happened. He was amazingly patient and calm about the whole thing. We were in the next cubicle from him, and though he was in some terrible pain, he was constantly cheerful. Say a prayer for that one please--and mind your fingers around electric tools. Be well.

Memorial Day

We've had a few hard days here. The RAF medication works by constricting capillaries and so cutting off the food supply to tumors. In light of this, the fact that several of my tumor sites are sore seems hopeful. On the other hand we've had a tricky time regulating the extremes of my blood pressure and blood sugar levels with various medications. With the fatigue, nausea and achy muscles, I was beginning to feel like a real genuine cancer patient!
However, Will has been amazing wrangling and distracting the kids, so I've got in a lot of sleep. And my sister Kate, hearing that I was feeling poorly, packed up her kids and her car and drove up from Conn to spend a large portion of 24hrs scratching my back. And today I am feeling much much better, Will's back seems to really be on the mend and Kate claims that she still loves us--even though she spent two night on the couch with one nursing baby and one throwing up toddler...Plus the sun is out, it is a holiday and Will mentioned bringing out the kiddy pool. Life is good! We are going out to play.
Lots of love,
A

Rehab

Hi-- Will speaking here. So, after my cortisone shot, my doctor said I needed to get some exercise to help my back get back into shape. So today, Xavier, Tilly and I did our own unique exercise-- groovin' to Micheal Jackson's Thriller!
I'm not sure my back feels better, but at least the kids are up on their 80s pop culture. Add that to Xavier's knowledge of Voltron, Star Wars and He-man, and Tilly's birthday acquisition of My Little Ponys, I think they're in good shape to defeat their generation in a game of Trivial Pursuit.

In terms of Aimee's progress, both of the last 2 pet scans have revealed no significant change. So she's going to continue using RAF-265 until something changes (hopefully for the better!). She started cycle 2 last week, and she'll have another pet scan (and maybe biopsy) in three weeks.

The Non Report

Xavier told me today that I was getting N-O-N flowers for Mother's Day--He meant M-O-M...I hope. In any case, here is my non-report...Today I had a ridiculously long PET scan. I was in there for hours thinking about how nice the folks in radiology were, how I didn't really mind the PET scans too much anymore, how I was going to get a nice sandwich on the way out, how much fun Xavier and I were going to have making lasagna for dinner. Then the machine made odd crunching noises and when he pulled me out, the tech looked worried. They never look worried. He quickly explained that he somehow had missed one of my big toes in the scan and he would have to call the doctor to see if he could leave it at that. Of course he couldn't, of course I should have refused and left, of course I didn't think of that until when, an hour later, I was back in the tube again for an extra half hour. By the time I was done, it was 6:30; the sandwich shop was closed, it was too late for lasagna and I have seriously been reassessing my assessment of radiologists. Ah well, at least I got a good nap. Reports should be in fairly soon--big toe included.
As for my biopsy, my nurse told me in all seriousness, that the Beth Israel report had come back, and it looks like...I have melanoma. Boy, did I laugh. I guess that is as far as their pathology report goes and the rest is still going to take some time as it has gone back through the drug company. Sorry to keep you all in suspense.
I hope you all are well. With love.
A

Overheard at the Cowan House

This afternoon, I overheard Tilly's first knock-knock joke.
While Xavier was busy in the little boy's room, Tilly stuck her head in at the door and said "knock-knock." Xavier, of course, responded, "Who's there?"
T: "Knicka Who."
X: "Knicka Who who?
T: "Knicka yous Head!!!" She screamed in delight.
I don't have a clue what it means, but they both burst out in uncontrollable laughter so obviously they did.

This evening, they were rewarded with some pudding for desert, which Tilly-as is her wont-promptly smeared all over herself and her sweater. Xavier then asked me if I would please wash her sweater tomorrow since I was in the "washing department."

And since I am telling tales...recently, Xavier wanted to know why Poppi had old hair, but no cracks in his face.

Tilly got upset because I called her honey. "I NOT honey," she fumed. "I sweetie! Daddy honey!"
She asked me to help her with her coat: "Zap my zeeper, Momma!"

In other words, all is well here. We are very busy and entertained. This week, Will got his cortizone shots for his bad back, and it seems like the pain is starting to ease up a bit. Hopefully, I'll hear some biopsy results tomorrow, as I am scheduled to start cycle two. My next set of PET scans has been pushed back to Wednesday but that should give us a better sense of if we should go on with this drug or switch to something else. As always, we'll let you know how it's going. Lots of love and thanks for all your love and prayers,
A

Tilly is Two!

Rounding out our April birthday trifecta, Tilly turned two on Sunday. She told us she didn't want any presents, but when we actually set them in front of her, followed by the cake with lit candles and singing, she literally shook with excitement...



Also, my pet scan results from last Tuesday showed no major changes from my end of March scans. (No news on the biopsy yet.) I have another round of scans next Tuesday, which hopefully will give us a clearer picture of results. I'll let you know when I hear.

Thank you for all your good wishes and love this month.
Aimee

Biopsy

I had the biopsy on my neck this afternoon. No problem...much worse in the anticipation than in the fact. It was a very big needle, but only three tiny holes. It didn't really hurt at all.

Update (as Requested by Meg)

We have been having a very good week--full of cake, sunshine (it got up to 80 here yesterday!!!) and flowers. Things continue well on the RAF front. I am feeling well. On Tuesday, I had another 8-5:30 day at the hospital with EKGs and blooddraws and so I was able to get copious amounts of grading done. My sister Maryagnes and her children came and walked the thrilled Xavier and Tilly all over Somerville--and when we came home that miracle-worker managed to have dinner and cake ready for us, despite having seven children underfoot in a small apartment. Yesterday, I had bloodwork done and a PET scan and today I will have two small tumors biopsied on my neck. This should not be a big deal; in fact, Dr. Frankenthaller, one of the top five head and necks in the country, thought it was so minor that he took the week off. Instead, Dr. Mullen will just be doing a punch biopsy, which will not involve the OR or major anesthetics. I should get results for all of these next Tuesday and we will let you know what those are. Meanwhile, I hope that you all are very well and enjoying the glorious spring weather. With lots of love,
A

Four Years Old

This last Sunday, Xavier turned four. He had a great day. We had a last minute change of plans; since cousin Vinny D's baptism had to be postponed, the cake got relocated to Somerville. Xavier requested Yoda, Luke Skywalker and Jessica Rock for guests...Jessica made it and the local Cowan contingent supplied the Star Wars action figurines that made him forget entirely that the actual Luke and Yoda never showed up. Everyone enjoyed balloon tosses, star wars and Transformer games, and enough play dough to go around. However, it was Tilly who really had the best time. We were busy organizing things in the living room when Tilly sidled up to me and announced, "Momma, I'm eatin' Bubba's cake!!" And she had the chocolate hands, face and dress to prove it. But the damage wasn't too bad to stop the rest of us from also enjoying the cake...





And here we are, happy and asleep, at the end of a long day.

Steady and Holding

The first week went well. I made friends with all the nurses on the floor, can run the EKG machine myself, and even convinced the nurses to put tape on those overly long EKG straps to save time in the daily sorting--now if only they'll pay me as an time efficiency manager...Oh, and the treatments are going very well too! The daily trips to the hospital were fine; I am really getting to know the finer points of the parking garage. Yesterday, we had our long Tuesday, with all its tests and fastings, and today I got to take home my RAF265 in 14 little lovely brown bottles, packed in what, sadly, looks like a Mike's Pastry box (and so should contain North End cannolis instead of anything else). However, besides feeling, on occasion, very tired, I am doing very well. So far, this medicine has been uncommonly friendly. I don't know if it works, but I recommend it :)

I hope you all are enjoying the spring stirrings. (We even made it to the park today for a little bit!)
With love,
Aimee

An apple juice a day...

Will and I just got home from our big introduction to the world of RAF treatments. It was a long day, but a pleasantly unremarkable one. We arrived at 8 am to the hospital, whereupon I was assigned my own room and my own nurse. She started an IV, took blood, hooked me up to the EKG pads and took my heart readings once every six minutes for seven readings in a row. This whole time, there was some fierce debate about whether I actually could get the drug today as no one had told me I should have fasted from midnight and I had happily eaten english muffins at six in order to fortify myself for the long day ahead. But finally, I was given the go ahead, the lab order was sent, and the drug came up around ten. (There are these great thick blue chemo gloves and yellow gowns the nurses have to wear around patients once the drugs are present that make it nearly impossible for them to do any of the fine detail work that they need to do--it is a bit funny.) The drug itself was not too bad; they mix it up with apple juice and I drink it in one swallow. It tastes a little funny, but we've all had worse. Then there were hourly EKG readings and blood draws, but, after three hours more of fasting, there was also lunch. They sent us home around 6:30. After today, I'll go back for about an hour daily for the week, and then will just have the once weekly long day in the hospital and take the drug at home myself on the other days thereafter.

I feel amazingly well. I may have a harder time as the month progresses and the drug accumulates in my system, but...we'll see. I've been so lucky so far...

With love :)
A

Happy Easter! And an RAF update.

Alleluia! Happy Easter! We had a lovely, full day. The bunny was VERY good to us; the kids were completely thrilled with their baskets. We went to mass with Will's family, to my sister's house for the big egg hunt and dinner, and then to Will's sister's house for dessert. Needless to say, Xavier and Tilly slept well last night. Here are a few photos:





And to backlog a bit...here is the messy egg dying fun:



As for my treatments, they have been pushed back a bit. There were some problems in organizing all the scans that needed to be done. So, instead of starting in the morning tomorrow, I will have two days of scans and tests, and the treatments themselves will start, hopefully, a week from tomorrow.

Thank you, as always, for all your amazing love and support. We are so blessed to have such dear family and friends.

Xavier the Story Teller

Recently, there was a video circulating the internet of a three year old girl, recounting what happens on the movie Star Wars. Xavier adored her tale immensely, yet still felt that it was fundamentally flawed. You see, this other three year old left out the most essential parts, such as the decapitation of robots, and her synopsis was totally devoid of the other side of the Star Wars saga-- LEGO Star Wars (for those who aren't familiar with LEGO star wars, it's a video game on the playstation that lets you play out the entire six episodes with LEGO characters). The following is his attempt to set the record straight about what really happens on Star Wars:

Here are some of my favorite parts:

Xavier: Do you know how Luke cut off C3's [C3P0's] head?
Daddy: (very matter of fact) That never happened....
Xavier: Only when Obi-wan gave Luke his light-saver.... Luke cut off C3's own head.
Daddy: That doesn't happen in the movie...
Xavier: Hmph... But ... but I saw that in Lego Star Wars.
Daddy: Lego Star Wars is different from the actual movie.
Xavier: (Look of disbelief, rebellion, and frustration with the bureaucracy of parents... as if to say, "Where's your imagination, Dad?")

Many minutes later...

Xavier: (just to spite Dad) And then Luke ...Pshhfff ... cut off C3's head ....

RAF 265

In case you wondered, we are going with what is behind door number two...RAF265. I'll start two weeks from today (we hope--I have to meet with the head and neck man about a biopsy tomorrow,* and work in the usual scans, checks, and balances). Mostly, besides a few long days in the hospital once a week, I'll be taking the drug in powdered form at home, once a day, and briefly checking in with the hospital for essentially daily blood etc tests. We'll do one round of 28 days, check my stats and decide if we go on from there. We met with my doctors today and signed the consent forms. The side effects don't look too bad and the work they've done so far looks hopeful.
We'll let you know how its going.
lots of love
A

* My nurse tells me the head and neck doctor is one of the top ten head and neck specialists in the country. I don't know why I need to know that; a biopsy seems like a pretty simple procedure, but at least we know that nobody biopsies like Dr. Frankenthaier!

Clinical Trial Options

Dr. Atkins gave Aimee 2 options at this point, both clinical trials. And we need to decide between the 2 within the next 2 weeks.

Option 1:
- a phase III trial (meaning that the medication is safe, and they are trying to determine its precise effectiveness.)
- It combines a RAF pathway inhibitor (Sorafenib) with chemotherapy (carboplatin and paclitaxel, developed in the 80's). The RAF pathway inhibitor ideally should prevent cancerous cells from multiplying.
- side-effects are typical of chemotherapy-- hair loss, nausea, etc., i.e., all that nastiness.
- It's not entirely clear what the response rates are for advanced melanoma.

From the Consent Form:

[Sorafenib] may slow the growth of your cancer by stopping cancer cells from multiplying and growth of vessels that support cancer cells. Carboplatin and Paclitaxel in combination with [sorafenib] may have additional effect on your cancer that has spread or cannot be treated with surgery.

Option 2:

- a phase I/II trial (meaning they don't know how safe this drug is. The trial is in part to determine the proper, safe, and effective dosage. It's also investigational-- meaning they don't know what kind of effects to expect. They've only tested it in a laboratory.)
- It involves an oral dosage of RAF265 (another cancer growth inhibitor) given over various periods of time.
- Side effects are generally unknown ("This is the first study of RAF265 in humans"). But at the same time, they can extrapolate probable and possible side effects. It is predicted to be moderate compared to option 1.
- From the consent form:

Labratory studies have shown that RAF265 slows or inhibits the growth of melanoma cells and melanoma tumors.

Dr. Atkins recommends the 2nd option for a couple of reasons. First, he thinks it has more potential to be effective. Second, if Aimee takes the first option, she can't take the second (this is the way a lot of clinical trials work-- once you've had some treatment, it precludes you from others.). But if she takes the second option, she still has the possibility of the first.

Both trials will take place here in Boston. We asked him whether there are other options in DC or Houston, and he said that Houston is doing the same thing, and DC is focusing on a treatment that Aimee is ineligible for (wrong blood type).



So-- after all that ... We're leaning towards the second option, mostly because Atkins thinks it's more promising and it won't cut off other possibilities.

Marching Forth

My nurse from Beth Israel called yesterday to save us our scheduled trip down to New Haven today. The latest scan results were not what we'd been hoping for; the MDX 010 isn't working. The cancer has grown and spread a bit further but, thankfully, still has not moved to my brain or other organs. Will and I went into Beth Israel this afternoon to discuss new options and ideas. Dr. Atkins had two basic suggestions, one a drug combo plus localized chemotherapy, the second an inhibitor drug. On the positive side, both would be outpatient treatments here in Boston. We are reading over the details and consent forms now and deciding where we go from here. We'll let you know where we're headed when we figure it out.
with love,
A

In this week's episode...

Xavier says, "I love shoveling. More snow, please!"

Then, Tilly helps out.

And when the work is done...




And later still...Tilly discovers the glory of the Drumstick. "Thanks Uncle Donny!"

(We had a lovely snow day here. Hope you all are well too!)