Happy New Year!

Happy New Year, dear friends and family! We had a wonderful Christmas, filled with love and family. We got the finest tree K mart had to offer and the beautiful, Bapcia home-made, stockings were hung (and eventually stuffed) with care. Xavier and Tilly were thrilled; Santa left a ride on toy for Tilly and a Transformer for Xavier-and even more thrilling was the constant stream of aunts, uncles and cousins to play with.

We really, really, tried to take photos, but this is the best I got:

It was fantastic to have Christmas with both of the children aware of what the day was and what it meant. They both were so happy for Jesus' birthday and were so pleased when we brought out both nativities and set them up, the glass one out of their reach and the paper mache one where they could move the shepherds around and invite random action figures to partake in witnessing the Incarnation. The one drawback to this very active interaction was the toll it took on the paper mache. Even the ceramic tree got chipped.

But fear not! It looks like a re-enactment of the slaughter of the Innocents here but I both glued everyone's head back on AND purchased a more sturdy plastic nativity at the 50% off sale at Walgreens this week!

Finally, apologies to everyone who has tried to contact us in the last week. We have been hibernating again--the traditional mid-winter withdrawal. We've just been enjoying the quiet glow of the Christmas tree and nursing our way through a common and communal cold. I promise I'm back in communication now and the cold is on the mend!

We wish you the merriest of New Years. Many, many, thanks for all your kindnesses in the last year. You have our love and prayers for the year ahead.

First Dose of MDX-010

We drove into Connecticut on Wednesday evening and stayed at a hotel near Hartford. Chris, Betty's husband, is the general manager there and was extremely generous to put us up for the night (and the next.)

The next morning, Aimee's sister Kate drove to the hotel to watch the kids (including 2 of her own), and Aimee and I headed over to New Haven for a 9:10AM appointment. We're not sure why they insisted we get there so early, as the treatment wasn't administered until after 1:00pm. Aimee was infused with the medicine for 90 minutes, and they kept her there an extra hour just to make sure there were no serious side effects. We were back in Hartford by 4:30 and left for Boston this morning.

Interesting people there at Yale-- there's definitely a marked difference between them and our Boston medical group. Boston, or at least Beth Israel Medical Center, is overtly professional and rigidly thorough-- amicable, but only after the proper job has been performed. At Yale, everyone's laid-back, as if cancer is a gentle and slightly painful lifestyle that someone chooses. Treatment is delivered while the patients sit in lazyboys; there are six people in one 12' x 12' room, so they're all eavesdropping on everyone's cancer story (but all in a friendly manner...). Appropriately, it's set up like a medical opium den. There's no hurry to get your meds, and having your vital signs measured every half hour requires a gentle reminder.

For them, interleukin II is only a legend, one which they've heard many tales about, but never thought really existed. Aimee was like a mythical war hero. At the same time, there were other cancer veterans in there (whose stories we overheard as well). One woman was talking about the chemotherapy she had received ten years ago! We hope to be doing the same in 2017....

All in all, the MDX seems like a cake walk compared to the IL-II. I think Aimee, for the most part, would agree.

- Will

Hi All,

MDX 010, part one, went very well. Besides feeling a little bit squicky (that is mildly sick, squeamish and yucky, and yes, that is the medical term) and having a small back ache, I feel remarkably well. I know, it is true, I am the luckiest girl around! Must have been all your love and prayers that are carrying me through. Thank you!
One down, three to go. Not too shabby for one day's work.
With lots of love (and many lame excuses for not having purchased a single postage stamp for all the Christmas cards I planned to send to you all),
Aimee

Thursday

It looks like, somehow, the stars have aligned, the tests have been forcibly scheduled, and we will be starting the MDX 010 treatment in Conn on Thursday after all. After some super fancy footwork on everyone's part, I'll do a PET, bloodwork today, another MRI tomorrow morning, and MDX 0101 bright and early on Thursday morning. (Plus, we'll be saving on the electric bill by shutting off the lights and eating dinner by my warm radioactive glow!) We'll keep you posted on how the treatment goes. With love.

Snowed In!

Yikes! We're getting hit by snow this evening. But we're prepared. First, Xavier and I play some computer games. "Daddy, stop making your guy fall down. We have to beat the bad guy!"



Then, we did pizza night. The kids got to make their own. Oddly enough, we found some strange combinations that weren't so bad. Xavier's specialty was peanut, raisin, pineapple and cranberry. Tilly wasn't so hot on the cranberry, and Aimee thought it needed a little Feta. Here they are, each, with their own handcrafted masterpiece.

Merry December

With all our scheduling and scanning, we have been neglecting our posts of late. We were blessed to have most of Will's family up for Thanksgiving. We had a fantastic time, and can't wait to do it again! Here is a photo of the kids with their Bapcia and Papa B.

Xavier and Tilly are thrilled with all the holiday happenings. Xavier is helping out extra with household chores to make sure he gets in a last minute good word with Santa. Here, he helps do Tilly's "do" for the day.
He is a BIG help!

Also, my parents sent home to Somerville the kitchen set that my Dad made for my fourth Christmas. This is producing, as always, hours and hours of washing and baking fun for everyone. Thanks, Dad!We are all doing well, and are getting ready and excited for Christmas. I finished up my classes for the semester and am just working on my grading. On the medical front, I did my brain MRI on Monday, have a PET scan and another round of minor tests on the 18th, a liver MRI sometime between now and the 19th, and, hopefully, start treatments in New Haven on the 20th.

I continue to be amazed and humbled by the outpouring of love and support that you all keep sending our way. We are blessed in our friends and family. Thank you so much!
With all our love,
Aimee

New Haven, CT

Yesterday was a long, cold day. We got the kids up at the crack of dawn and drove over to New Haven for a 9:30am appointment. Aimee wasn't done until 1pm. And then everyone got carsick on the way home.

The doctors found 2 more tumors on Aimee- one on her neck and one under her arm. Good thing she starts treatment next week.

On the bright side, it's not yesterday anymore!

Another shot at MDX-010

The doctors said that there is something available that will allow Aimee to take the MDX-010 outside of the clinical trial. (They call it the Compassionate Use Protocol) She'll have to go down to New Haven, CT every 3 weeks-- and there's no possibility of placebo this time. I think they should compassionately use their protocols all the time :)

Should start soon. We'll let you know.

Plus, a few from the zoo...

Our latest outing.

The Before Thanksgiving Update

A few weeks ago we celebrated my sister Betty, aka Gail, aka Mrs. O'Donnell's wedding to Chris. She was gorgeous. And we had an absolutely fantastic time. Here are a few pictures from that evening. Of especial note are the one of Xavier doing a John Travolta stroll on the dance floor (also, note his cousin getting a time out in the corner!) and the one of Tilly after we got home, looking hung-over, trying on my shoes. The last photo is of all the Alcarez cousins--our two are the ones who insisted on wearing their halloween costumes in the picture.

Rotten Luck!

Well, turns out that Aimee is not eligible for the MDX-010 trial. While she did pass the initial blood screen, there was a second blood screen that she didn't pass. And Gee Whiz-- there was only a 5% chance that she wouldn't pass it. (She had the compound A-02 in her blood, but not A-02-01 ....) Rotten luck.

So. So, we meet next week to discuss other options. The top of the list seems to be the trip to NCI in Washington DC. We'll be looking at other clinical trial options in the meantime.

On the bright side, at least she won't have the possibility of getting sugar water infusions for the next 9 weeks. :)

It's a minor setback, but maybe God wanted to save us some time by avoiding another ineffective treatment. :)

-Will

Clinical trials

Well, it looks like Aimee will be entering the MDX-010 clinical trial. She passed the initial blood screen, she signed the consent form, and treatment will probably begin in 3 weeks.

Here's a quick rundown: Everything will be done here in Boston. Aimee will go in a total of 5 times over a 9 week period to receive an infusion of MDX-010 and an injection of a peptide vaccine. (There is a 20% chance that all she'll receive is a placebo.) She'll be scanned throughout to measure her progress. Keep your fingers crossed-- hopefully this will be the drug that does it.

Halloween 2007

We had a very successful night last night--these kids are finally starting to pull their own weight in contributing to the family candy supply.

You know what they say...

When the going gets tough, the tough make cookies.
Will's Mom sent us some Halloween cookie cutters that we put to good use yesterday. Here are the kids at work--and don't worry we only made Aunty Izzy eat the results! (Thanks Lizzy!) Overall, things are going well here. The cookies looked great and tasted good too-as good as sugar cookies get, at least. We are in good spirits. I am feeling well and am excited for my MRI this afternoon. After this I will have rounded out my experiences of the main electronic imaging possibilities; now I can work more on chapter four, "Overcoming Cancer Through Claustrophobia: One Girl's Time on The Inside." That is just the working title; if you have any good suggestions, let me know. ; )

Thank you, so much, for your continued outpouring of love, prayers, and support. I must be the luckiest girl alive to have such amazing family and friends.

More Cancer

The PET scan showed that the cancer has spread once again. 4 new lymph nodes have been affected. So, in short, the interleukin-2 didn't work.

Dr. Atkins wants Aimee to get on a clinical trial for something called MDX-010, which deals with CTLA-4. From the information the doctor gave us:

MDX-010 is an antibody against CTLA-4 .... CTLA-4 is a molecule that controls a part of your immune system by shutting it down. Researchers believe that one way cancers can escape the immune system could be through this shutdown system. An antibody against CTLA-4 can stop it from turning off the immune system and allow an immune reaction to continue.

It hasn't been as effective as Interleukin-2, but shows a response rate near 15% (which apparently is on the high end for Metastatic Melanoma). She has to have the right blood type for it though. So they took her blood today and will let us know in 2 weeks if she is approved.

The treatment itself will be less intense than the Interleukin-2: outpatient rather than inpatient, and milder side effects.

There are other options other than MDX-010, but they seem to be more severe treatments. One would involve Aimee heading down to the National Cancer Institute (NCI) in Washington, DC for 2 or 3 six week periods and combining chemotherapy with immunotherapy. It seems promising from what Dr. Atkins said about it, so we want to make sure this option is still open to Aimee if she opts for the MDX-010 treatment.


The good news, however, is that Aimee is still otherwise healthy and ready to continue fighting. She says she hopes to write her own cancer booklet after all this, like a sort of Frommer's guide to Melanoma. "The medicine was served lukewarm, the ambiance was drab at best, but the service was excellent." :)

PET

I have no right to complain--my doctors have been amazing, the nurses fantastic, I have been quickly and kindly helped throughout all of this summer. But...mint peanut oil? Why is the prep for the pet scan mint peanut oil with a chaser of berry Barrium? Might I respectfully suggest strawberries followed by hot fudge sundays? I'm no scientist but I think that would be a better preparation for an hour in a tube. Just a thought.

Anyway, the pet scan was this afternoon. Results on Tuesday...

A Series of Unfortunate Events--and a pet scan delay!

My CT scan for today has been switched for a PET scan on Friday. Hopefully, this will get us around the problems of reading the contrast-less CT and will give us a more accurate idea of how everything is going. My meeting with the doctors to get the results will still be a week from tomorrow. We'll let you know what we hear.

Otherwise, things here have been a Lemony Snickety tangle of busy happenings. It got cold in the last few days...We ordered oil, put in the storm windows, took out the ac, put up our Halloween pumpkins. Our water heater broke on Friday night and leaked all over the basement, we have no hot water, or even vaguely warm water; our landlady is in Greece (so we were on clean-up, catch up, and follow up). Her daughter changed her cell phone number-- it took me all weekend to hunt her down in order to get the plumber in--the plumber visited yesterday evening and promised to return today with a brand new water heater. Our pediatrician left our insurance so we had to find a new one and do all the accompanying paperwork to transfer files, doctors, claim numbers, etc. The secretary chided me that I should have done this sooner (switched or forced out our doctor, it wasn't clear which) and now I will have to wait until they get the paperwork before I can make Tilly's belated check-up appointment. And then I got a note in the mail that one of our claims was denied and we owe $900 for the dermatologist visit in May. (That was an expensive band-aid!) And when I called today to ask about it (the bill, not the band-aid), they said; No, actually, there are three denied claims from that same day and we owe a few thousand dollars because they never got a referral, or more likely, did, but lost it--and now it is too late to send a referral as more than 3 months have passed. (I know I requested it--I remember calling them to do it). (Plus, why didn't they ask for it sooner if it was missing??!??) BUT I talked to my doctor, to the insurance customer service department, the claims department, and the appeals department and verbally appealed the denial--and I think, I hope, I straightened it out. Phew!! NOW, I'm happy.

Besides all this, we had a wonderful weekend. Donny and Michael and Jessica came over on Saturday afternoon and we went to the farm for a haunted hay ride, ate hot apple donuts, and brought home the two best little pumpkins in the patch, er...bin. On Sunday, we went to Dorothy's house for a reunion of former Marshall Street Spinsters (or at least some of the very local old Medford roommates --Sadie, Becky, Tara and the Annex girls sadly weren't there). Once, it was just us girls studying in cold garrets (or warm friend-filled kitchens, depending on the version you hear). Now there are spouses , fiances, and babies everywhere. We had-as usual-a very lovely time. Pictures to follow.

I hope you are very well and that reading this doesn't cause you to chew on a table (per the Lemony Snickets baby).
With lots of love
A

Happy, Happy, Joy, Joy

My sister Kate had her baby yesterday-a girl, 8 and a half pounds. Mom and baby are doing great. We hear that she will be named Lily Gabriel and that she is gorgeous and looks a lot like her big sister. We couldn't be happier; as Browning put it, "God is in His heaven and all is right with the world."

Stone Zoo Murl!

When I was pregnant with Xavier, we used to drive past the zoo on the way to my doctor's appointments and point it out to the baby, yelling "Stone Zoo, Murl!!!" (Murl is what we called him then--before he was so clearly a Xavier). Well, after only a slight several year delay, we finally made it INTO the zoo--and had a great time.

Far too soon...

Xavier was telling me last night about his ideal woman: "I don't like girls with too many eyes, Mom...I only like ones with two ones."

No news. Good news?

Will and I went over to meet with my doctors at Beth Israel this afternoon. The ct scan is not as accurate without the contrast material, but as far as they could tell, it showed no new spreading of the cancer, which is good news (this is the first ct scan that hasn't shown quick growth). However, again with the limitations of my contrastless ct, there was also no obvious evidence of shrinkage either. This isn't too uncommon at this stage in the game--apparently the interleukin is still at work within me and the next few weeks will tell how effective it has been.

So, now, again, we are waiting. Three weeks from today, I will have another scan and depending on its results we decide what to do from there. If there is new growth we start looking into our other options; if there is some sort of stasis, they will want us to wait and watch to see what happens next; and finally, and hopefully, if there is shrinkage we will do another round of IL2.

On the other hand, they were quite pleased that I was off all of my medications and feeling very well. I didn't tell them about all my secret cures of mega vitamins, wheat germ and hefty doses of miraculous medals (though not in the ingested form) that are really doing the trick--I'll save those details for next visit. I hope you all are well. Thank you so much for your continued thoughts and prayers. With love.

Ct sans contrast

I had my ct this morning-without the contrast material that made me so sick last time. It seemed to go well (no odd clanking, banging noises, people bursting in yelling, or techs saying "Uh oh") though we won't get the results until I meet with my doctor next Tuesday. We'll let you know as soon as we hear.

Tilly Reading The Bravest Knight, and Ambivalence towards Lemons

It may seem that we're cruel, but she screamed every time we took the lemon away. :)

Probably too much information...

But I am pretty excited...my taste buds have just about grown back! Food has taste again! Life is good!

Also--and more importantly--if less tastefully--I just wanted to take some time and respond to your comments: Bill, my beloved student, GET OFF THIS BLOG, AND THE INTERNET, AND GO DO YOUR HOMEWORK! (Greg, you can stay.) Otherwise, thank you everyone for spending the time to check up on us and for leaving comments when you do. Will and I are constantly touched, amused and thrilled to know you've been here.

Overall, we are doing very well. I am feeling good. I've emerged from a full body peel like a shiny new snake. Will's back is finally feeling better. And Xavier and Tilly have discovered the joy of marching constantly and loudly around and around the circle of our apartment. I'm pretty sure the neighbors love that. I should have lots more to say about that but instead I am going to get those kids off to bed and go employ my new taste buds. If you need me now I'll be in the kitchen.

Hi ho!

I started back to teaching this week. I'll be covering two sections of English 01, twice a week. I am happy to be back in the classroom. And no worries; I am feeling really well. And beyond a little fall cold, Will and the kids are doing well too. Lots of love to you. Aimee

Hibernating

The last few days have been good. Mostly we have been hibernating and enjoying being together, savoring these last August days. I am feeling remarkably well so far. My leg is better, appetite has returned, and soreness is greatly improved. On the blog front, Petrus has requested cute photos of the kids poolside. Will and I have worked tirelessly to fulfill her desire--with little, or no, success. Here are some vaguely water related photos and more proof of why we are so infrequent in posting photos...

Home Again!

We made it through week two and now are all home again, safe and sound. It is wonderful to be here: the kids grew bigger, learned new words, even walk better. Even the mustard yellow of our house's exterior looks better.
There are many details to follow, but for now I am headed off to sleep. I just wanted to let you know that we are home and well. Many thanks for all your love that continues to guide us along the way.

Day 6

Dearest Ones,
It is Sunday already and as Will said, that most likely means the end of my IL2 doses for now. I took in about 22 altogether, so that is not too bad (at least 18 is what the hospital shoots for). For the moment, I am still attached to two different IVs and the chest line, but most likely those will be removed this afternoon or tomorrow. And if my blood-work comes back fine we will get to go "home again, home again," on Monday, with twenty plus extra pounds to prove that I enjoyed the bon bon and truffles portions of this spa treatment the best.
Lots o love.
A

Day 5

Sorry about the silence, but it's been a rough couple of days. As they say, the second round is always worse than the first. I think she's probably done for doses now. She had a dose this morning after laying off of two yesterday, but her blood pressure dropped significantly this afternoon. All she needed, though, was 10 doses, and she got there.

Thanks for your thoughts and prayers.

2.2--four doses down!

Round two, day two is going well so far. We were pleased
to see our lovely nurses and to get our own old corner room back. The kids happily went off to Beth's house, and Will's back seems a bit better. As for me, I am doing well, already tired and sick to my stomach, but nothing major to complain about. My stent is acting up in that it has oozed through five dressings--but I do think this last one should do the trick. Meanwhile, despite the best intentioned books we have piled around us, Will and I are watching the Discovery channel and learning such important things as how to make brooms and zippers; if you need help in any of those areas please let us know, we'd be happy to oblige! Please keep us in your prayers. You continue to be ours. Lots of love,
-Aimee

Round 2

Checked in, and first dose is underway. All is well.

Reprieve

The hospital called late this afternoon and said that due to some summer nursing shortage emergency, I get to stay home for an extra day. I didn't really question the logistics of it all (I guess I'm high maintenance!) but gladly accepted the extra catch-up day. So my next set of treatments won't start until Tuesday morning. Until then, if you need me, look by the kiddie pool on the back porch. The kids and I will be swaddled up in the shade enjoying these quiet August days while they last...

Resting at Home

I think your prayers have helped a ton. Aimee feels good right now. Most of her symptoms are gone-- swelling is down, nausea is gone. Itching is starting up, but for the most part, things are going well. Here's Aimee--

Will

Thank you everyone for your continued care and support--your love has been a source of great strength for me. As Will said, I am feeling so much better--very tired and itchy--but good. The Interleukin process, so far, has gone well. The first week, at least, was "doable" and I am almost geared up mentally for the next round. I should be ready by Monday I hope.

Meanwhile, we have been joking about how we missed a real marketing opportunity in not calling Slimfast; I gained 17 pounds in the hospital but now have lost 20 in the last few days. No worries, this is a normal side effect to the IL and I am eating lots of chocolate to make up the difference.

So for the moment, all is quiet on the homefront. Xavier and Tilly are well and tucked in their own beds, or will be shortly. I hope all is well with you. With lots of love and thanks,
Aimee

Home

Aimee came back home yesterday afternoon and the kids were especially happy to see her. She's still bothered by nausea, still swollen, and still tired, but she's gradually getting better. I think she's mostly disappointed that she didn't lose her hair-- she really wanted an excuse to try the bald look. :)

Day #6

Aimee ended up skipping 2 doses yesterday, but she got 12 out of 14-- which the doctor said is really good (Most people can only get to 10 or so).

She's feeling much better today. They took the stent out and let her take a shower :) If she's feeling up to it, she might add something to the blog later today.

Day #5

The effects of the treatment accumulate over the the course of the week, and so this is definitely the worst day so far. Low blood pressure, coughing, nausea, restlessness, itching, aching, swelling, etc. Aimee had to skip a dose today because it was just too much.

The good news, though, is that it's the last day of treatments! So we'll stay here another 36 hours after the last dose and head back home on Sunday.

Day 4

Dear Family and Friends,
Here we are on day four already. For the most part I have avoided the chills, fevers, and nausea.
My lungs are clear and, while my blood pressure is increasingly low, it is not yet dangerously so. Overall, I am even more puffy, red, and tired than yesterday, and am a little bleary eyed but feel that I am doing really well. No problem, very doable, I recommend this spa. (I had no idea when I checked in why they all thought I needed this kind of beauty regiment , but now I am really starting to see that a ten pound weight loss in my face wouldn't be such a bad idea :) )
Thank you for all your love and prayers; please keep them up as they are really helping!
Ten doses down, only four to go!!!!
lots of love
Aimee

Day 3

Half way through! I am puffy, red, and tired, but overall, happy to report, doing better than expected. Please do keep up your prayers as they seem to be working great. Lots of love. Aimee

Day #2

No problems thus far. Some flu-like symptoms, lots of drugs, and lots of sleeping.

Checked in

Aimee's allergic rash finally cleared up this last weekend, and so the doctors cleared her for treatment today. We checked in this morning, and they placed a stent in her chest to deliver the dosages.

Dosage #1 was administered at 3pm. So far so good. There will probably be 14 doses given to her over the course of the next 5-6 days.

Pushed Back a Week.

We went in this morning to begin treatment. But Aimee had developed a rash this past weekend, most probably an allergic reaction to the "contrast" liquid used in the PET scan last Wednesday. The doctors had a look and thought it would be best to wait a week before she starts treatment, to give the rash time to clear up. (One of the side effects of Interleukin-II is a pretty nasty rash of its own-- so they didn't want to compound the problem.)

No worries here. Gives us another week to enjoy the summer. :)

Life goes on

Last night Xavier requested a bedtime story about baby Jesus and I obliged. I told him about the annunciation, the engagement and marriage of Mary and Joseph, the census, the trip by donkey from Nazareth to Bethlehem, how there was no room at the inn, how Mary's tummy was getting bigger and bigger and the baby was ready to come. I thought I'd done a lovely job of explaining about how Joseph made a soft bed for Mary in the hay and how the animals kept them company and the stars shone down on the stable and was just about to get to the birth itself when Xavier popped up and asked excitedly, "And then Mary saw the robots?"
Ah, well.

Testing...

It's been a busy few days. Yesterday we went over to Mass General to talk to the oncology doctors there. And, as we'd expected, they agreed that Interleukin was a good bet for our next step. Today, I arrived at Beth Israel at 7:30 AM (at which time, I discovered, the parking garage is much more amenable) for a slew of pre-interleukin tests. I had a CAT scan (with accompanying 900 ml of barrium consumption) an EKG, a breathing test, and a good old fashioned blood test. Nothing too challenging; and I think they all went well. So, we are just waiting for the final green light for Monday. Until then I'm preparing for my week of spa treatments by cutting cucumber wedges for my eyes and picking out my best slippers.
Lots of love.

This Week and Next

It looks like I will start my treatments with Interleukin II on this next Monday. However, we are still waiting for a last confirmation from my health insurance before that is set in stone. This week I have various doctor's appointments and tests I need to pass in order to be up to the challenge of the Interleukin.

I'll keep you all posted on how they go.
With love
A

Latest Update.

Not the news we had hoped for. We went to see Dr. Atkins today at 3:00pm. We were hoping that the surgery would have eliminated all evidence of cancer. Unfortunately, Dr. Atkins said that the PET scan revealed that the cancer had spread to lymph nodes above those that were removed in surgery. We thought maybe there would be microscopic remnants of cancer here and there, but there seems to be a little more than that.

Treatment, though, will be relatively the same. Aimee will undergo a high-dose treatment of Interleukin-II. This will involve 1 week of inpatient hospitalization, where they administer Interleukin-II 3 times a day for 5 days. Then, she'll come home for a week, then go back for one more week of treatment. We're not sure exactly when this will start-- soon, of course-- but they'll let us know all the details this Monday.

Although only 20% of patients respond to this treatment, we have a lot of hope, not to mention a lot of prayers backing us up. So keep at it! And besides, the doctor "assures" us that Aimee will be ready to teach in the fall. :)

We'll let you know when the treatment is set to go. Thank you, everyone, for listening to us and praying for us.

On a lighter note...

We have also been eating our quota of summer ice cream and
marching in or around all parades that have come our way. Here is the proof. :)

Today's Visit.

Aimee visited the surgeon today, and the last of her tubes were removed. He is impressed with how well she has healed thus far. So much so, that she might not have to have compression tights to reduce swelling from lymphadema.

Afterwards, we talked with the oncologist, Dr. Atkins. He told us that the pathology report on the lymph nodes removed from surgery showed extensive cancer. Some of the lymph nodes showed extracapsular cancer-- meaning that it had gone outside of the lymph node capsule into the surrounding fatty tissue. None of this was really news to us at this point. But he did think that the extent of the cancer may call for more intensive post operation treatment. Right now he thinks that radiation is out of the picture-- the infected area is too big for this type of treatment to be effective. He also thought that interferon might not be the right answer-- too weak. So he's leaning towards treating it solely with doses of interleukin II.

For now, though, he wants to wait, get another PET scan, and see what is left over after surgery and then proceed from there. So, another appointment will be set for 3 weeks from now with a PET scan somewhere in between.

But our kids should be happy-- Aimee is cleared for lifting and holding them now!

No News

I am up and about-feeling much better and much more mobile. I even made it to Will's sister Lizzy and her new husband Court's wedding this past weekend-which was lovely and exciting.
However, my doctor's visit for this week has been postponed until my, um, fluid production is down. Hopefully, I will get in to have the last of my tubes out and for a long awaited time-line for treatments on Monday or Wednesday. We'll let you know what happens. Thank you again, very much, for all your love, prayers, time, energy, thoughts and more. We have the most amazing friends and family. All our love to you.

Follow up visit

It's been a week and a half since the surgery, so Aimee visited the surgeon today. He took out her stitches and some of the tubing she had. Everything looks good right now in terms of healing-- he was impressed with how much sensation she has in her leg. Usually, most patients have some temporary or even permanent loss of sensation in parts of their leg after such a procedure.

Next appointment is one week from today, Wednesday the 20th. She'll meet with the oncologist then and we'll discuss different treatment options at that point.

Home.

The doctor's OK'd Aimee yesterday, so we came home last night. Walking is still difficult for her at this point, so she's still confined to bed-rest. But she was happy to see Xavier and Tilly, and they were so excited to see her.

So now-- sleep, more sleep, and then even more, until she meets with the doctor on Wednesday, June 13th for a follow-up.

What's in a name?

In case you tried to inquire about her status, Aimee's last name is listed in the hospital as "Alcarez-Cowan" (Our insurance company insists this is her name, despite our protests.)

I finally got to see her late last night, around midnight or so, in the recovery room. Luckily, they set her up with a private room, and I was able to stay with her through the night. She's currently in Room 906, Farr Building of Beth Israel Deaconess Medical Center.


By this morning, the post-anesthesia nausea has mostly worn off, but she's still pretty tired. The doctor recommends rest all day today, but she should be able to see visitors on Sunday. Visiting hours are 11:00am to 8:00pm.

Thanks for all your prayers.

Aimee is fine and recovering.

Just talked to the surgeon, and he said that the surgery went well. No problems or complications-- it seemed to go longer than the estimated 5 hours, but the surgeon told us ahead of time that 5 hours was probably a little too conservative an estimate. For a procedure such as this, 7-8 hours is the norm.

Aimee is in the recovery room right now-- and hopefully, I'll get to see her soon! :)

Thank you everyone for your prayers.

Surgery Time

Surgery is set for 12:00pm tomorrow and should last around 5 hours. It will be at Beth Israel Deaconess, West Campus Center.

PET scan results

Thank you so much, dear family and friends, for the wonderful outpouring of love, prayers, and support that Will and I have received in the last two weeks. I can't help but see how even now God is reminding us, in you, of how blessed and beloved we really are.

Today I went in for my PET scan at noon. The doctor called us this evening and said that the scan shows no signs of cancer outside of the lymph node system. At this point, this is definitely good news. :) I am now officially at stage IIIc. There were worries that it had spread elsewhere, but since it is locally contained at this point, the affected nodes can be surgically removed.

Nevertheless, things are moving quickly- surgery is set up for June 1st, a week from today. It will consist of 5 hours under the knife, 3 days or so in the hospital, followed by a week in bed. And post-op treatment will probably involve dosages of interferon. While there's a relatively high chance of the cancer returning after this, there is also a decent chance of it being completely eradicated. We are praying for the latter!

Thank you again for your prayers and your kind words.

-Aimee

PET scan scheduled

Aimee will have her PET scan on Friday, May 25th at 1:00pm.

Also, just to let you know, Aimee is feeling absolutely fine and isn't experiencing any symptoms, no pain or discomfort-- except a little soreness from the dermatological biopsies yesterday.

First Visit to Beth Israel Deaconess Hospital

Today, Aimee and I went over to the Beth Israel Deaconess Medical Center at 10:30am to meet with a number of doctors to discuss her situation.

11:30am- We met with Dr. Koon first, the oncologist. We spoke briefly with him, but he couldn't say much until they had given a full review of Aimee's CAT scans and xrays. The doctors held a conference during lunch to discuss Aimee's situation (apparently they do this everyday for new patients).

1:30pm-- We met the surgeon, Dr. Tawa. He told us that it is still difficult to determine the stage of the cancer and that Aimee would need to undergo a PET scan early next week so that they could find out the extent of the cancer. Best case scenario seems to be that the cancer is limited to 5 or 6 lymph nodes and hasn't spread anywhere else. If that's the case, then the course of action would be surgery to remove them, followed by a course of treatment such as local radiation and immunotherapy (interferon) to take care of microscopic remnants.

If, however, the cancer has gone beyond the lymph nodes and crossed into the blood stream or other tissue, then the surgeon thought that such a surgery would not be the best option. A more systemic treatment would have to be used that could treat her whole body. He mentioned Interleukin II as the possible medicine. He also mentioned the possibility of experimental treatments that they had as well, if it came to that.

So a lot will depend on what the PET scan reveals. The doctors are NOT worried specifically about the liver, though (The CAT scan had shown signs of something irregular in the liver). They think that it is probably safe. But they are worried that it has in one way or another metastasized beyond the lymph nodes. The PET scan should give them a much better picture than the CAT scan could provide.

After we talked with the surgeon, we met briefly with Dr. Atkins, who is the senior oncologist at Beth Israel and will probably be working closer with Aimee as the treatment progresses.

3:30pm-- We met with the Dermatologist to try to find the original source of the melanoma. She checked all of Aimee's moles, removed three of them for biopsy, but said that none of them showed any definite sign of melanoma. She'll run an analysis on them and get back to us as soon as possible.

4:30pm-- Aimee went in for some blood work-- just to run one more test that the oncologist wanted.

So-- Here's where things stand now. We're still in a wait and see period. Aimee will have the PET scan instead of the MRI next week, as the PET scan is more thorough. From there, the doctors will inform us what they think the best course of action is based on the results.

In the meantime, I will be trying to gather information and resources from the internet and posting them here in the sidebar. If you have any suggestions, comments, questions, or anything you want to say, please leave a comment below. I'm sure it will make Aimee happy to hear from all of you.

Please keep her in your prayers. We will keep you updated.

April is the Coolest Month

Here are some of our latest "doings." Xavier models his new ten-speed and Tilly her new baby.