Merry Christmas! What a difference a year makes! 2004 has been a year of wrenching pain and heartbreaking treatments but with a difference...this time we seem to be winning at most every turn. We are all together and all feeling pretty well. Every family tradition was observed and everybody can participate. We’re going to spend some time- all together as a family- and do normal family things. This Christmas is one of the best on record but only by a little because last year was pretty special too.

You may remember last year and wonder what the heck I’m talking about. After all, a year ago Sue was fighting with Sloan to adjust the chemo schedule so Tales could be home. The treat was that she would only be vomiting a little when Christmas day arrived. She got out of the hospital on Christmas Eve but with no immune system, couldn’t go to the traditional family Christmas Eve dinner and had to turn in without decorating her tree...too tired and sick. Aunt Lynn sent half the food to our house and we celebrated together by speaker phone. Taylor was running out of tolerance for the chemo she was on and was starting to show signs of potentially serious side effects. The tumors weren’t really responding and though they weren’t really getting much worse they weren’t really getting any better either. I was speaking to doctors all over the country in search of creativity and a no holds barred approach to helping Tales. I kept hearing of new and different approaches but couldn’t get them from our doctors in NY.

Tales was thin, bald, tortured and being run in and out of the hospital weekly. Her spine was curving from the first surgery and it was starting to cause additional pain and pulmonary risk. She was way off schedule with treatments because that undefeatable little body was starting to cave in.

So why was last Christmas so good? Because last Christmas God guided us to the answer we needed. On a last minute basis, we got an appointment with another new doctor...this time at Columbia University. His name was Dr Garvin. He gave me an appointment on Christmas Eve at 1:30 PM. It would be amazing if it stopped there but when I got there with my scans under my arm and pages of history and personal research, I found that the clinic was empty except for him, a couple of nurses cleaning up the last details before the holiday and a few patients who were headed for admission. Everyone had gone home for the holiday. Instead of a cursory consultation, we had an in depth talk about Taylor’s history, my search for creative additions to our protocols, the research I had done and my concerns about what the scans said, and what to do next.

FOUR HOURS LATER, I called to tell Sue I would be late for Christmas Eve dinner. This guy had called in two other doctors to talk to me and read the scans and pathology. He then got the head of Pediatric Radiology to read the scans and give me his thoughts...all of them hours late leaving for their own families.

To my excitement, he was already using some fo the medicines I was looking for and was completely open to anything else within reason that could help turn the tide for Tales. He had some unique ideas and was willing to start form scratch and look for creative approaches. He was willing to take the case and would start researching immediately if we wanted him to help.

Sometimes you just know when things are going to go your way. I knew right then that we had a reason to celebrate Christmas in a way we never had before. I drove home like a maniac and told Sue and Tales I wanted to switch, ( you might guess that nothing happens unless Tales says so).

No one knew then that the new approach would work so well but we knew we had just raised our chances. The meeting resulted in a complete, outside the box, “stretch the envelope”approach that has made all the difference.

I know that many of you who keep up with us thought this page have challenges of your own and friends and relatives who are fighting the same fight that Taylor is. Please keep in mind that fighting cancer means asking questions and questioning the answers. No one can afford to give up the role of advocate. No one should under estimate the power of the love of family and friends... And no one can convince us that any of this was possible without the power of prayers said by and for us in numbers that still overwhelm us. Check out the Pics Site! There is all little of the Ghost of Christmas Past and an little of the Ghost of Christmas Present. You were all part of the treatment. Thank you!

Merry Christmas!!

Lots of good stuff this week!

For starters, AS OF THURSDAY OF LAST WEEK, TAYLOR HAS TAKEN HER LAST DOSE OF CHEMOTHERAPY!!!!! She endured 10 months of excruciating high dose chemo and now 9 months of low dose chemo that she has been drinking at home. Her nightmare of nausea, vomiting, blood transfusions, mouth sores, hair loss and related health problem are behind her. The treatments continue and we even added a new cutting edge drug to the cocktail she continues to take at home and in the clinic but those are a cake walk by comparison. For those of you who stood by us all these many months, Thank you. The effect of your prayers and the support were impossible to describe. We put some pictures up on the "Pics" site to show the end of the road including a cake that the Abrahams sent over. Take a look.

The Best and Co event was a huge success. We don’t know the final number but it set a record. Thank you to everyone who came out and shopped. Taylor’s poster and tay-bandz display are still in the store. Stop by!

The fund-raiser dinner and Best and Co event caused lots of media coverage for Taylor and tay-bandz. Most of you know that Tales is a little media shy and feels funny when she gets attention for what she sees as a “bad thing”. But you can always get her to participate if it helps her with tay-bandz! She got big articles complete with pictures in the Westchester Journal News, and the Greenwich Times as part of the Best and Co event, both of which featured tay-bandz. Today we had Susan Wolfert from the Scarsdale Inquirer stop by to write an article on Taylor and tay-bandz as well. Taylor is now officially in remission and has a burn to make a difference in pediatric cancer research. tay-bandz and fund-raising are her new focus...and ours too. For those of you who have been with us all along, you know some of the sad facts but if you don’t, here goes:

Taylor knows the agony of the current state of the art in pediatric treatments and she knows how little is being done to keep other kids from knowing her pain and fear. She had 8 surgeries that did serious and lasting damage to her little body, 14 rounds of high dose chemotherapy, dozens of blood transfusions, weeks and weeks of torturous hospital stays, and countless days hooked to machines in clinic. She knows that the chemo that helped to cure her is a toxic poison that often CAUSES secondary cancers. She knows that one of the chemo drugs has harmed her hearing, another damages the heart tissue and all have damaging effects on the kidneys and liver. Most of the drugs used on cases like Taylor’s are the same as were in use 20 years ago and cure rates have hardly changed at all in 10 years. Recurrence is all too common as well.

Almost every drug in use is merely a drug developed for adults that happened to have applicability in kids. Even when a drug directed at pediatric cancer is discovered, it may not be produced because there is no money in it for drug companies. Our society possesses the technology and financial resources to make these barbaric treatments a thing of the past but the world has not declared war on cancer and has largely forgotten the children. Childhood cancer is still relatively rare by cancer standards. A mere 12,500 US kids will look into the eyes of a pediatric oncologist this year and hear the words “you have cancer” The chances are you will know one or more. <

Our government will spend about $15 per US resident on cancer research this year...a tiny, tiny fraction of what they will spend on defense. Of that $15, children’s cancer research will receive less than 60 cents!!! 900 kids will be diagnosed with Osteosarcoma this year in the US and fewer than 40 people in the world are actively engaged in full time research to cure them. They may be as “lucky” as Tales. They may endure this torture to no avail. These kids are in desperate need of a hero. Private donations and philanthropy are all they have. Taylor knows this stroy first hand and she is determined to change it. Like with everything else she has set out to do, I’m betting on Tales.

I know what you’re thinking...another update less than a week apart?!! Yep I’m getting back in the swing. It helps if I am home once in a while.

This was a big week! We spent last weekend in Ft Lauderdale. I had to be there Monday for business and would have had to leave Sunday anyway so we all spent the weekend and they went home Sunday night while I stayed over until Monday. Check out the pictures on the Pics site. It was a needed break. Taylor had to bring her chemo with her but its easier to take it in the sunshine!

Then we had the Columbia Patient Of the year fund raiser sponsored by Best and Co in Greenwich. It was a big success. Thursday evening was a launch with a private cocktail party and shopping opportunity and today was the official shopping day. 15% of all the sales made at any of the participating stores will be contributed to Columbia’s Pediatric Oncology research efforts in Taylor’s name and count towards her $1,000,000 goal. They had a big picture of Taylor in the store and flyers all around town. The picture on the front was a painting of a little girl in a field that Taylor painted over the summer. It is beautiful and made the invitations and flyers special for us. The store and the campaign are run by Susie Hilfiger who commissioned a special taybandz headband that can only be found at Best &Co. It looked great and was a big hit. The store was filled with friends, family, family of friends, friends of family and lots of people we have never met but understand the importance of the campaign. THANK YOU!

It was also a big week on the school front. Most of you know that the school district made a big effort to keep Tales up to date during the dark days of her heavy duty treatments and surgeries. As September neared we scrambled to make sure she wasn’t too far behind. When school started, Taylor’s teachers made sure she got the attention she needed to stay up with the class and.....she got straight “As”including honors math!! She’s a smart kid but she had the advantage of terrific teachers.

Check out the new pictures. We caught Taylor’s new look with her natural hair and some shots from Florida and the fund raiser at Best & Co.

Wow. Another huge gap in entries with no one to blame but me!!! New jobs, travel schedules, school stuff and mostly pretty good stuff going on around here but we’re back in the saddle!!!

First things first! The Web site has hit over 100,000 hits!!!!!!! That’s unbelievable! You have all been great supporters of our family and loyal site readers even though we lost track of it sometimes. Knowing you are interested in keeping up with the story and Taylor’s struggle is enough to brighten our day. Keep checking back. We’re gonna get regular again!

Next…For those who haven’t seen it yet, the Taj Mahal is now complete and furnished. This was a labor of love for everyone involved. Tales and Mommy worked endlessly and Bob Benza’s secret weapon tree house specialist, Chris, were awesome and got it all done for her birthday. It sleeps six not including the hammock or the loft! I won’t even go into detail about the heat, telephone, cable and alarm. This has no relation to a tree house. It is closer to a second home! She had a blast doing a sleep over and hanging with her friends and the other girls have been loving it too.

The pool Tales really wanted before the tree house but thought she couldn’t have is done too. It opened in late September and closed last week but it was great while it lasted. Now we can put the back yard back together.

The really big news is that Tales had a big fundraising dinner to celebrate her birthday and raised about $10,000 for tay-bandz which will go towards Taylor’s goal of raising $1,000,000 to fund a pediatric solid tumor lab at Columbia. The evening was really a hit. Julia Bender, an Edgemont neighbor, friend and one of Taylor’s Oncologists spoke, Taylor presented a check to Columbia for $50,000 from prior efforts and we did a slide show shoeing the high spots and low spots of Taylor’s odyssey since her diagnosis. Thanks to all who came and donated. tay-bandz is alive and well!

This week is a big one too! On Thursday we will attend a launch cocktail party at Best and Co to drum up support for a big sale we referenced in the last journal entry. To recap, Taylor was selected as Columbia Patient of The Year and will be honored through a big sale at Best and Co., (Susie Hilfiger’s store), and at lots of other exciting stores in Greenwich Ct. The actual sale is Sunday the 21st all day. 15% of everything purchase at participating stores will go to Columbia as part of Taylor’s goal of $1,000,000. Stop by on Sunday and shop a little. You’ll look good and feel good too.

I’ll update the site again on Friday with some recent pictures. Tales has changed her look!

OK so let's get caught up. First of all everyone needs to know that Taylor's tree house is nearing completion. It has taken approximately the length of time that the Taj Mahal did...but the tree house is slightly bigger. Check out the "Pics" site for photos in the building stage. We are in the finishing stage now so it is more advanced. By the way this is no ordinary tree house...this is a Taylor tree house. It sleeps six not including the loft and the hammock. It has base board heating and electric plus an alarm so Mom feels everyone is safe. It does NOT rest in a tree but looks that way. No tree could support this tree house anyway but FYI the tree we targeted fell down anyway. London has the London Eye. We have the Edgemont Eyesore. If you are a neighbor, don't worry, the landscape magicians are on the way to screen it out.! It was originally a "Make A Wish" project but Make a Wish let us down so we did it ourselves. The good news is that we got to know a neighbor really well who happens to work with "Make A Wish" and he is the best commercial they have going...Thank you Jamie B.

Next up? Sue was determined to resume a Matthews family tradition and Taylor favorite. 10 days ago we had our annual wine party. You might assume this is about drinking wine in the fall...and that is what we want you to think. The unsuspecting,(which means we need fresh victims every year), are shocked to find that we invite them to pick grapes off of vines by the crate and then stomp on the grapes to start the wine MAKING party.

Yep we make wine and not bad either. We pick it, stomp it, ferment it in the basement, then put it in Oak. We bottle it, label it with our own label, cork it and put a cap on it. It is called Les Filles De Matthews. See the pictures on the web site. Notice any similarities to an I Love Lucy episode? The kids give the wine out at Christmas to their teachers and we give it to family and friends. If you don’t have a bottle....let us know. We’ll sign you up for next year’s party!!!

We even have news on the fund raising scene. Best and Co., (a high end retailer of elegant children's clothing which is owned by Susie Hilfiger), in partnership with Columbia Hospital honors one patient each year as Patient Of The Year. This year they picked Taylor!!! In her honor they will run a sale involving most of the high end retailers on Greenwich Ave in Greenwich Ct. During the sale, 15% of every item sold will be donated to Columbia Pediatric Cancer Research to eventually fund the Pediatric Solid Tumor Lab at Columbia. There is a long list of retailers on Greenwich Ave that are participating. Pick any participating retailer including Susie Hilfigers' Best and Co. and 15% goes to fight Pediatric Cancer. Sue gave theorganizers a list of 1500 people to invite and Aunt Lynn generated 900 of them!!! But don't wait ofr an invitation. Come on over. The sale is all day on November 21st. Mark you calendars. We'll see you there.

Lastly, we've been avoiding an update for a few days because we were facing a new set of scans and that puts us all back in anxiety mode..everybody but tales that is. She remarked to her Mom the other day that she should relax. Either the tumors would still appear to be dead and we would continue as usual or there would be something there and the doctors would change the treatment to take care of it. No big deal either way.

Still learning about life from our daughter. Still thanking G-d for the toughness and determination.

Most importantly...The scans were clear again. Everything that is left in the scan is dead and even the liver is returning to normal. No high fives. Just looking at it like Taylor... "no big deal either way"....

BUT WE"RE JUMPING AROUND LIKE LUNATICS!!!!! GO TAYLOR!!!

OK, OK the time got away from me. Let's get caught up.

Tales got straightened out with yet another drug and her platelets and clotting factor seem to have returned to normal...so of course Tales did. She went back to school, back to field hockey and back to whatever passes for normal around here.

With a little delay to let her body recover, Taylor went back to her drug regimen. That may not sound like good news to you but getting drugs on time around here is a cause for celebration. I don’t talk about it on this site much but Tales still gets four or five drugs in combination including low dose chemo plus five drugs recommended by her alternative medicine physician. They range form oral meds to IV drugs and inhaled drugs to chemo she drinks, including IV meds she goes to clinic to get. It’s just part of the routine and believe it our not, sticking to the routine makes us all feel better. We know it’s how we got to a place where things are at least a little normal.

Meanwhile Tales had her birthday party Saturday night. She did it jointly with her friend Carrie. If you are thinking, “I thought her birthday is Novenber 1st?” then you are right. But she wanted to capture the last few warm days of the season to have a pool party and I will be traveling a bunch for the next few weeks so it was now or never. She had an absolute blast and it seems everyone else did too. The place was overrun with about 25 or so boys and girls from her school. Check out the pictures by clicking on the Pics link at the top.

Never a dull moment!!

Last Saturday, Tales was having dinner with the family like any other normal kid and went upstairs for a shower. Moments later she came back down horrified to see a baseball sized swelling on her back at the top of the scar that marks the spinal surgery she had and it had grown there in only about an hour. We were all pretty spooked and off went Sue and Taylor and I to the Columbia emergency room

It’s called a hematoma.. Basically it’s a swelling from a blood vessel that breaks and creates a bump where the fluid builds up. It’s a little scary for Tales ‘cause her platelets are chronically low and she is on so many meds that hurt platelet counts and clotting factors are not normal.

She spent the night in the emergency room of course, getting poked and prodded and filled with IV stuff...the swelling went down. The Docs haveo little idea what caused it but it happens sometimes. (Basically Tales is convinced that if it happens occasionally and it is bad, it happens to her). In the AM we came home and went to sleep. Sunday she felt fine.

Monday I returned home late from work to find Sue and Tales getting packed to go back to the ER. It seems the whole problem was back in spades. As the lump grew before our eyes, we raced back to the hospital to get treatment and options. By early Tuesday, Tales was returning home again and we were determined to get some answers. None have been forthcoming but an assurance that it is not about a new tumor helped. Now we need some healing time to put her back to normal.

Tonight she went back to the High School to get her books and assignments….She didn’t want to fall behind in her studies!! Good kid, our Tales.

Meanwhile she did have some good news. Tales was able to present PCF with over $7,000 in checks from people at my old branch at 666 5th Ave. We raise most funds for taybandz these days but it was nice to see the familiar faces at PCF. You can’t imagine how supportive my branch friends have been over the last year or so. Good people. Good friends. Thank you Fifth Ave!!!!!

The next day almost 400 people came out to the High School track to participate in a new event invented by Cindy Moeller, our new favorite Edgemont teacher, called "Relay for Tay". Each walker paid $5, (or sometimes more just to make a donation) and walked for one hour before being relieved by the next "shift". That raised another $2800! and the whole thing was pulled off by Cindy almost single handedly.

But that's not all!! While we were there, we sold another $1600 of taybandz. (just when our neighbors thought is was safe to go out we got them again! Thanks guys)

Then...the finale. Sue, Jill A., Ryan's friend Juliana and the rest of the Matthews clan staffed a booth at the 3rd Ave Street fair for 9 hours and picked on strangers. We sold another $2300 of taybandz. That's a record weekend of almost $9,000!!

Most of you probably know that taybandz is now a certified 501C3 corporation not just non profit. As such, taybandz can receive tax deductible contributions of cash, marketable securities...almost anything. So we now raise the dollars in the name of taybandz and Taylor allocates it to Pediatric Cancer Research.

Taylor has a goal...and you know how that goes!!! She has decided to raise $1,000,000 to help launch the solid tumor research lab at Columbia's Children's Hospital Of NY. We've learned not to doubt Taylor's goals but we choked a little when we heard it. That's a lot of key chains and head bands!!! We're looking for more street fairs!

Thanks you once again to all of you who have supported Taylor's efforts and taybandz. We hope to realize Taylor's biggest goal of all...her slogan, "Someday no child will ever have to face cancer"

Last year at this time we had just started to recover form a massive surgery, and crippling chemotherapy.

Last year at this time, two of our daughters went back to school wondering how their lives could have turned so dark. Tales cried softly in her bed.

Last year at this time, Taylor rested in bed pumped full of narcotics to help with the pain, mouth sores and vomiting. She was fighting infections and was being re admitted to the hospital every few days. She would miss all of 7th grade and there was very little sunshine.

Last year at this time, the only thing that kept us all going was the support of our friends, our family, and prayer.

THIS YEAR WE CAN HARDLY CONTAIN OURSELVES. Ryan and Corey are pumped. Taylor is frenetic with excitement, and Mom and Dad want to cry with joy. Taylor is a normal kid... a superhuman, impossibly tough, deeply caring, and indomitable "normal kid" GOD BLESS TAYLOR MATTHEWS

This is not the finish line for Tales. The race has hardly begun. In fact she still faces years of unpleasant treatments and hospital visits and scans. But we’re back on the race course and we know which way to run. You can’t imagine how happy we are to be in the race!

To get a sense of the "before and after" picture, look at the "pictures" site to see the before and after pics. The first was taken February of this year!!! The second is of Tales with her friends Jenny and Carrie only a few days ago. Have we mentioned how grateful we are that we found Columbia and the dedicated Pediatric Oncology team there? They changed FIVE lives.

Yep. While most kids are getting their back to school hair cuts, Taylor is getting hers grown! Through the magic of hair extensions Tales now has shoulder length beautiful brown hair real hair. She looks gorgeous and feels really good about it. Look on the pictures site tomorrow to see the new "do".

We're back!!!!! Tales is home and back on track for meds. We need to create a cylcle for all of the drugs that allows her to get all of the drugs in the proper order on the right days. Mommy can do that easy, Mommy can do anything.

Now it is time to try for some normalcy. Taylor has been trying all year to keep up with her class in school. In between treatments and recoveries, she has done pretty well. Now she has to go back to school. And she isn't happy!! Would you be? I'd like to hang with mommy all day and and visit with her friends too but enough is enough. Back to the grind! Stay tuned for new Taybandz and an upgrade in the site. The new line is near!

Tales left for Sea Island a week late because of the biopsy but we still managed to schedule for two weeks. I went to Chicago for a couple of days on business, and as soon as I got back, Tales went to NY for a couple of days for treatments but all in all it was another great vacation at Sea Island.

The way we worked it out, Tales would go to a nearby clinic for blood checks and emergency treatments if necessary and fly back for two days for treatments in NY if the blood work suggested it was worth it. The local clinic was a dream and all was fine at first but as soon as I got to Chicago, I got word that Tales was transported to the clinic by ambulance because she needed emergency platelets. Nothing that couldn’t be handled, but Tales spent the night in the emergency room.

The numbers seemed OK so on Monday of the second week she flew home for treatments and flew back Tuesday. Unfortunately, her platelets were too low to get the treatments so she wasted the trip! The good news is she got to see her tree house going up and the pool being dug. Yes the famous tree house is going up courtesy of the Benza connection. It is another example of understatement- like the Taj Mahal!!!

And yes you read right. There is a pool going in too. It seems that the real wish Tales had for her Make A Wish was a pool but she didn’t ask for it because she knew I didn’t want a pool and she thought it was too extravagant so she didn’t dare ask. Upon hearing this and having the full force of ”rotten father” guilt hit me, I started the pool too. The good news is we don’t need to mow the lawn. There isn’t any!!

While Sue and Tales were in NY we got the much awaited final pathology on her liver biopsy. It made us forget all the stresses!! As hoped, the sample was negative for tumor!!!!! We’re still not sure exactly what it is but it appears to be an inflammatory response which is most likely liver regeneration…a response to liver damage from the chemo. It’s kind of rare but sometimes after chemo damages the liver in kids, it begins to re-grow. That’s our Tales, rare at every turn.

The rest of the trip was all good stuff from there on. No worries about test results. No need for clinic visits... just fun and family relaxation. It’s been a while and we made the most of it. Tales rode bikes, played golf, body surfed, swam and even wake boarded!! Just another kid on vacation.

It’s hard to explain, but every once in a while we would just get choked up for no reason at all. Tales was just another kid playing and having fun. She has enough hair that people think it is a fashion statement. Her back is straight as an arrow and strong as steel…actually titanium. She dives off the diving board, jumps off the dunes and complains about re applying sun screen. She’s not a cancer kid playing and having fun. She’s just another kid…with hair and stamina and giggles and a smile to break your heart. She’s just another kid on vacation. What a vacation?! PS check out the pictures section tomorrow to get a look at Tales being normal…at least Tales normal!!!

Camp pick up was a rowsing success. Tales and the girls had big fun and everyone was thrilled to see a straight and tall Taylor. She even put on a little show by waterskiing on day 14 after massive spinal surgery!!!Supergirl was in a groove.

We were all flying high after the scan news on Wednesday. It's hard not to get ahead of yourself when you get some good news. After Taylor had such good scans, we didn't really focus on the liver issue. We just wanted to take a "win" and move on.

The follow up CT scan of the abdomen was really supposed to just give us a sense of comfort that all was well. Unfortunately, late Friday evening we got news that the CT scan was "inconclusive". There is certaily something there, but the scan can't tell us what it is. Our previous logic holds that it is likely to be a result of current or past treatments but it is not logic that lets you sleep at night. We may have an MRI but are likely to need a liver biopsy to check the tissue. One more test. One more invasion of that little body. One more recovery. We just want her to be free to be a kid again.

Tales and Mom and the rest of the girls were scheduled to be away this week. The trip is postponed while we get the answers. Maybe they can start a week late. Maybe not. We need another break. Say a little prayer for Supergirl. Too much Kryptonite around here.

To keep things in perspective, just because the machine doesn't see them at the standard resolution, (it was a differnent resolution than last time), doesn't mean they aren't there. They could just be too small to see. But even if they are still there, they are shrinking markedly and in retreat!

We are by no means out of the woods...maybe can't even see the clearing. Years of treatment lay ahead. But we've clearly found a beaten path with a sign that says, "THIS WAY OUT".

Of course there is always one party pooper. It seems they saw a couple of positive areas in her liver when they scanned the abdomen. So she has to have a higher resolution CT scan on Friday to check it out, Her doctor thinks it is merely a common reaction to one of the new meds she is on. It would seem highly unlike that it is spreading in one area and disappearing in all of the others. So he is pretty confident. One more scan day. One more sleepless night, but we're too excited to sleep anyway.

The doctors at Columbia have used incredible creativity and insight to help Tales fight this thing. Their inventive, and aggressive approach have turned the tides for us. No thanks are enough.

But even they are flabbergasted at the response. It is truly remarkable, and miraculous. For those of you who are praying with us...it's working!

To make things worse, today was scan day so she got shot full of chemicals and stuffed in machines all day...all on an empty, weak stomach. Now we just wait. Say a prayer for Taylor. She is due for some good news.

She’s home!!!!

The last 24 hours made a big difference. Tales started to get the upper hand over the pain and stiffness. She was fighting pain and fever but she had really good moments too.

The 4th floor had a really good physical therapist. He asked Taylor to get out of bed to walk and try some specific skills for getting around the house. First she walked about half of the floor and then he suggested trying the stairs. He took her to the fire stairs and demonstrated how to climb the stairs by using good posture,(Imagine telling her to stay straight. She is as straight as a Marine in Parade uniform.), and stepping up with one foot and bringing the other up to meet it like you did as a kid. Taylor got one look and smiled. She did the stairs like anyone else would, skipping one at a time and leaving her instructor behind. She got to the top of the flight and did another!! He just laughed and suggested they move on the advanced movements. By the end of the session she was very pleased, very tired, and sore.... but the legend continues.

She came home today and is doing really well. The pain drives all decisions and she can’t use all of the pain meds we would like but she is looking like a tall and straight version of Tales. By the way, it appears she gained 1.5 inches in the surgery so officially she is 5'2" now and will continue to grow. Mommy is about to be passed again!

Friday and Saturday were a blur. In the ICU, the days kind of meld together since we never leave the floor and you don't really sleep. Friday was probably the worst. No matter what we did, we couldn't get control of the pain. She went in and out of consciousness while they pumped her with narcotics, anti anxiety, nausea, and antibiotic medicines. She had wonderful moments with visits from lots of friends but they didn't last long and she won't remember much. It's wrenching for a parent to watch.

The good news is she walked Friday morning, amazing the staff, and got in and out of bed several times. By Late Friday they finally found the balance and combination of pain meds. She got the first peaceful rest since the operation and actually slept for several hours.

Saturday morning, she began to get relief and the energy to move around. She spent the day moving in and out of bed and was really walking well. On another note, we clearly set a record for most visitors over the limit in the history of the hospital's ICU. Tales wasn't really all that responsive but she loves the distraction

We left the ICU late Saturday afternoon to the 4th floor regular surgical unit. Believe it or not she was wandering around her floor and even visiting friends on the oncology floor. What a difference a day makes!

She really stands a chance of going home Sunday after all. Four days to a shower and counting!

not only did she do fine with no ill effects, we got a very pleasant surprise on the spinal correction. We proceeded under the promise that they wouldn't try if they couldn't get 50% correction and that they were targeting 60% or better. There is no firm number yet and we won't know for sure until 6 weeks from now but...he's guessing we got 80%!!. Ive seen the post op xrays and they look even better than that.

She's in for a world of hurt when she wakes up but she was prepared for that and anxious to get it done. Score another round for the good guys.

Tomorrow is surgery and Tales is ready. She's equal parts nerves and excitement. She knows this is going to be very painful but she knows it will make her more normal. 12 year old girls are pretty conscious about their appearance and she is pretty crooked. I don't think anyone on the medical team would choose this moment in time to stop treatment for this surgery but we all know we have to give her some slack to make choices so we can keep her head in the game. The finish line is a long way off.

She goes in at around 11:00 AM and should be in surgery about 8 hours. When she comes out she will go to the Pediatric ICU for a few days and then to a regular room. She'll be be in a lot of pain but pain is temporary, straight is forever!!! She has handled worse. We will

Big days are ahead for Taylor and we are scrambling to prepare for them. She has been getting her "cocktail' pretty regularly and we are monitoring her platelets. Today she missed and, sure enough, she had donated platelets in her name just waiting for her. Thank you for keeping up the supply.

Now it gets a little tricky. Taylor leaves for camp on Sunday for 10 days. Yep, her normal, regular kid, sleep away camp. I'm not sure who is more excited, Taylor or the family. It's only nine days of a 24 day camp experience but it is nine more than she got last year. It is a little complicated to cover the medicine and check ups and she is due to get new counts on Monday. If she needs a transfusion, the camp has offered to get her to the local hospital, and bring her back. Then we're hoping she'll make it through 'til we pick her up on July 6th if her body is making her own platelets. If not, she'll get one more transfusion before leaving. As long as her platelets are reasonable on July 6th, she'll be eligible for surgery.

Then we switch concerns. Her surgery date is July 7th and she needs a red blood supply. Currently she has no red blood units in her name. So we're hoping a few friends will sign up in the next week or so to build her supply. Red blood lasts 60 to 90 days instead of the 5 to 7 days for platelets. She is type 0+.

THEN... as she starts to recover from surgery, they will start the cocktail as soon as possible and we go back to needing platelets again. Thank goodness Sue is organized.

Assuming she recovers well, the other kids will join her at the end of camp and Sue will take them all away for a vacation. We're concentrating on the good parts not on the complications and the hospital and Camp Southwoods are bending over backwards to make it work. Summer is here!

Meantime back at the ranch, Taylor is getting ready to go to camp. Yep, drugs and all. All three girls go to Southwoods in the Adirondacks. It's a four week camp and a little slice of heaven for a kid. It runs like a fine Swiss watch. Taylor will have a very well regarded doctor at the camp and he has privileges at the local hospital. Just another camper with needs at Southwoods!! She will go for about 10 days and them home for surgery to straighten out her back. By the time the others get home, she'll be ready for action. Actually it probably won't take that long!!

Taylor's doctors agreed to give her the medicine along with platelet infusions which really made us happy. Now, however, we need directed platelet donations again. It is possible she will need them every day for a couple of weeks. If any of you have any tolerance left for another needle and another couple of hours out of your day for Tales, it would really be appreciated. The details on how to give through The NY Blood Center for Taylor's benefit are on the Blood Drive tab at the top of the page. The phone number is 516-478-5129. You will need her file number,(32689), and her patient number,(70542) in order to give. Thank you!!! We appreciate the help.

The concept was that Taylor would rest and relax and get back to full strength for more medicine. But tales doesn't relax like the rest of us. She barely stood still! We did water skiing, snorkeling, wind surfing, jet skis, tubing, and deep sea fishing in just four days. Take a look at the pictures by clicking on the pictures tab. That's a real barricuda she reeled in by herself. Not bad for a kid with five surgeries under her belt in 12 months. She had a great time!!! And she returned ready to throw herself into treatment. Take a look at the pictures. Great subject. Poor photographer.

And we got orders as soon as the story aired! The first one was from a woman in Idaho!! It seems her husband is stationed in New Jersey with the military so she watches NY stations and caught the taybandz piece. Within minutes we had the order. We also got a flurry of orders form Smith Barney. The people at SB have really been terrific to us and to Taylor every step of the way. Thanks guys.

In the meantime, the homepage now has a link to the taybandz website so people can see most of the current line and order. OK it's a little crude but our friend Mike Mione did it in only hours when we found out about the interview. I know it is hard to see the pieces and there are no prices but stay tuned,. When you order you just need to tell us which piece you want and where to send it. Our Exec Dir, Maggie Landau will email you with the cost and arrange for shipping. Hey did you catch the part about the Exec Dir? Maggie is awesome and keeps it all functioning. And you thought this was a rinky dink small time operation. President Taylor hires only the best!

Tales used the time wisely. She's been catching up fast on school work and working on taybandz. taybandz is rockin'. We are putting out new jewelry, beach bags, flip flops etc., all designed by Tales and her bevy of consultants, (Mommy, Corey, Ryan, Jill and Susan). And sales are booming. The highlight was a sale at Sleepy Hollow Country Club that our friend Phyllis ran which raised a whopping $6,500. THANK YOU SLEEPY and PHYLISS.

SPEAKING OF TAYBANDZ!! CHANNEL 2 NEWS FOUND OUT ABOUT TAYBANDZ AND TAYLOR'S FIGHT AND ARRANGED TO INTERVIEW TAYLOR, (AND MOMMY), FOR THE 5:00 NEWS ON THURSDAY EVENING. They interviewed her in clinic today and at home and they are highlighting taybandz!!! Spread the word and tune in!!! JUST IN TIME WE ARE LAUNCHING A TAYBANDZ WEBSITE SO PEOPLE SO PEOPLE CAN ORDER OVER THE WEB. We hope viewers will look us up after the segment. The site is HTTP://www.taybandz.org. Take a look tomorrow. Tales wants to build taybandz BIGGER. Have you noticed she tends to get what she wants?

Meanwhile we heard from the surgical team that will do her scoliosis surgery. It looks like they will get her done in the early to mid July range. That helps with other family surgery issues in late June and of course Tales sees it as a shot at sleep away camp at Southwoods. Everybody loves their camp but she thinks Southwoods is just shy of magic. We do too.

For now she is getting in some missed fun and missed school work. She's been out to the golf course, designing new taybandz and working hard to catch her class in math, science, social studies etc. When she is feeling well, she's a dynamo. I get tired just writing about it.

Tomorrow she starts another new drug in the cocktail...Avastin. It's only on the market a few weeks and not really approved for kids officially but that's little of the creativity, and aggressive pursuit of answers that we like so much about Columbia. This one is IV do she'll be doing some hospital time.

For Tales this was not a big one. It had some tricky parts for the surgeon but she was out of surgery and in recovery in about an hour and a half. Unfortunately we all under estimated the post op pain and it got pretty ugly before the pain service got it under control. It was probably only about an hour but it felt like a month. They had to give her A LOT of morphine and put her "under" again to get her comfortable. If you've been following this story, you know Tales has a pretty high threshold for pain. When she is screaming for help and pain meds, something is amiss. The doctors were total professionals, however, and got the job done.

She now has a "port", (about the size of those rectangular pencil erasers from school), under her skin below the belt that can feed medicines directly into the heart and they took the tubes out of the hole in her chest and closed it.

Tales is home in her own bed and even eating a little. She's dreaming of a long weekend in the Carribean where she can swim and play normally, and we are going to give it to her. After that we count down to back surgery. And yes, she is still looking forward to it.

Next she got clearance to have the scoliosis surgery!!! The surgeon at Columbia even predicted he could get really good results given the fact that the curve is very high and only at the top and that we are catching it early. He’s a top player in the field and helps us feel confident with the decision. This doctor is in high demand and this is the “season” for scoliosis with school letting out. The first date we got was July 26. We were a little disappointed. We want to get the procedure done before the curve gets any worse and time is our enemy. Tales just figures it will allow for camp in July but ruin her vacation in August! After some negotiating, we got June 30th. A huge advantage in timing and more time for Taylor to recover before school. We were very upbeat. Tales just sees it as ruining camp but allowing for an August vacation. NOW we find out that there is a conflict with another family surgery so we have asked sheepishly for a date towards the end of the next week. The surgeon is willing to try to help with no promises. So we really just don’t know the date yet. Sometime between June 30th and July 15th, she will get the corrective surgery and begin recovery so she can get back on the drug regimen. Tales just sees it as getting a little bit of both. Are you noticing a pattern here? The kid has a tunnel vision focus. She gets the organizational skills and relentless focus from her Mom. Imagine, I live with both of them!

On a lighter note, Tales and Sue took on another project this week. They spend hours together in clinic and often find the games and activities a little lacking. The toys and games have been used so much that the parts are often missing. Many of the games are not appropriate for her age. They are such big fans of the clinic and the staff that they wanted to give something back. So they went to ToysRUs, bought tons of new games and toys, and delivered them to clinic today. It was a great use of "tay-bandz" money. For those of you who have purchased a "tay-bandz" item, you have done something really nice for some very special kids.

She won round one. Tales will be returned to a mediport on May 12th. A mediport acts in a similar way to the Broviak but is implanted under the skin which makes swimming, sports and bathing much easier. We also got a yes from a top notch spinal surgeon who is convinced he can get really good correction if we act quickly. And YES, I DO realize that my child is begging for major spinal surgery. What can I say?

That's step one. Now she has to convince the Oncologist that it is safe, that she can recover quickly and that she won't be off treatment too long. I don't know about you but I'm betting on the kid!

Tales started a whole new phase of treatment this week. It's kind of a maintenance mode. Our doctors at Columbia are really very creative and focused. We are creating a cocktail of lower dose oral chemos and a combo of cutting edge drugs that in most cases are new to kids and in some cases only newly released. Because some of these haven't been given to kids and most have not been given in combination before, we started one on Monday to test it out, added a second on Friday and should get another on Tuesday. If they are all tolerated we will go for the final piece within a few days. That's all in addition to the drugs she was already on. My advice is to buy pharmaceutical stocks. Between the prices of the drugs and the volume we are using, the sky is the limit!

Tales had a good week. She feels really well and has begun to take an interest in catching up in school, making lunch dates with mommy and her friends, building a 3000 piece Lego Statue Of Liberty, and working on plans for her tree house. She has even started riding the unicycle and bike again. No grass grows here.

The Walkathon numbers are not yet final but you guys raised a lot of money, (and a lot of eyebrows) with the army that showed up! Almost 600 people showed up for Tales. An interesting side note, one of Taylor's friends and former soccer teammates, Lindsay, had a conflict with a big soccer game the day of the walkat day so she took Taybandz sweat bands to her game and the whole team wore them for Tales. I don't know who won, but I know who I think the winners were!!! See the picture on the "pictures" site

New pictures of the walkathon are going up each day as we get them. If you have some good ones we'd love to see them. If you can email them, it's better. I'm tech challenged.

The web site took a big jump forward last week. Our web genius, Mike Mione, posted a link from the home page which plays Taylor's song when you click it. THANKS MIKE. It's on the left side in the blue box. In case you missed the entry back in October, our neighbor Margie Weintraub arranged for a song to be professionally written and recorded just for and about Taylor by "Songs Of Love". They are a non profit foundation that creates individual, original lyrics and music for sick kids. The song is awesome and could easily be a hit on the radio. Give it a try!

You did some good for the world too. PCF raised over $200,000 for the fight against childhood cancer. And it is a fight that desparately needs our help. Federal tax dollars dedicated to Pediatric Cancer are almost non existent. The Government spends less than $11 per person to find the cure for all cancers. Kids get only pennies of that.. 8700 kids in the US will get diagnosed with cancer this year. They will be treated in much the same way they were 10 or even 20 years ago. They don’t vote, or march or write checks. Without private funds, the tragedy will continue. Dozens of people helped make the day come together from tshirt deliveries and registration, to taybandz sales and bus chaperones and .....all the rest. You guys were awesome!

Add to that the excitement of the Walkathon on Sunday. The weather is going to be warm, and sunny after weeks of rainy weather. People are rallying to the cause of Tay's Team too. As of this evenening, we have given out 480 tay's Team shirts so the team will clearly go over 500 walkers for Pediatric Cancer Foundation. THANK YOU!!!!And Tales feels really well right now so she should be able to do the whole walk herself. She even went to Rockefeller Center this morning at the crack of dawn with the Abrahams and the Bermans to get caught on TV on the Today show holding signs for the walk!! Look on the pictures site tomorrow for a picture! Sunday morning at 8:08 on ABC, Tales will be interviewed to drive last minute walk up registrations. It feels like the clouds have lifted a little. We may be just a little bit louder crowd than we originally thought!

Speaking of the Walkathon, it starts with registration and check in at 10:30 on Sunday. We'll all be meeting at 79th St. in Riverside Park. If you haven't registered yet, you can do it when you get there. If you have, you just need to check in, get your ID bracelet and goodies. If you are taking the bus, (at least 3 or 4 of them!), they will arrive at EHS at 9:00 and leave the city to return at 1:30. If you haven't already emailed Sue, please check on availability by emailing Sue ASAP at suematt624@aol.com.

We appreciate all the support and warm wishes. Tales feels really lucky to be so cared for. A positive attitude is her secret weapon. You have given her that attitude. See you Sunday!

Tales is trying to focus on the Walkathon. We're creeping up on 400 walkers for Tay's Team!!! We think we will be the biggest team there. I'm guessing we'll be the loudest! We sent a blast email to everyone we had an email address for in the Edgement area about the bus schedule for getting to and from the Walk. Basically we board the busses at Edgemont High at 8:45. and the buses will depart the Walk for the return at between 1:30 and 1:45. WE MUST HAVE AN EMAIL FROM EVERYONE WHO WANTS TO GO BY BUS WITH THE NUMBER OF SEATS NEEDED ASAP. We don't want to leave anyone stranded. Email Sue at suematt624@aol.com. If you want to help us out and decorate the buses, get there a little early.

Taylor is really excited that we'll be able to show off the new Spring line of "tay-bandz" This stuff is really awesome. We've got a line of Sterling Silver Jewelry, killer belts right out of the fashion mags, new keyshains, ID lanyards and all our newest headbands. Flip Flops and beach bags are on the way!! We'll be the only organization allowed to market there. If you want to help at the "tay-bandz" table, contact Jill Abraham at jill.sa2@verizon.net

Tomorrow is a scan day. These are kind of tense but not as tense as the days waiting for results. Taylor will be getting photographed inside out, upside down and backwards. Say a little prayer and think small.

Friday did have a bright spot however. Tales started delivering the Tay's Team t-shirts to the local people who have signed up and mailing the others. She'll be doing some each day until we walk. The shirts have her original design on them and they are awesome. Truly a collector's item I think...at least for this collector. The number of walkers is now over 350 and rising!

On the walkathon front, things are going really well. We blew through the first order of t-shirts and have more on the way. It's a little hard to get the counts right because some people ordered the shirt but forgot to register for the walk and others registered but forgot the shirt. But...it looks like about three hundred so far!!!with a surging number of Smith Barney folks. Awesome! Thank you!

We have started the arrangements for buses to take Edgemont area people from the High School to the "walk" and back. Look for details on this site about how to sign up and the departure and return times. Tales is beaming.

Friday she was back in clinic to get a stem cell transplant...her own stem cells. Stem cells can morph into any kind of cells that are needed. The idea is to harvest lots of your own stem cells early in the chemo process before the chemo obliterates all of them so that when the chemo starts to wear your body down past where you can recover, the stem cells can rejuvenate your marrow. We're hoping this will help Tales rebuild her blood counts more quickly this time. That will leave us with more options when we get our next set of scans sometime in the next two weeks. After the scans we talk to the surgeon. She'll be neutropenic next week and pretty much confined to quarters but for now, she looks and feels pretty well so she can enjoy herself and relax.

The walkathon is really cooking now. We have over two hundred walkers and haven't opened all the emails yet. We just ordered more t-shirts and were looking into buses to get the whole crowd to Riverside park on the big day. Stay tuned for details. Tay's team is rising!

1. The Walkathon got a surge in the last few days. We're thinking of reordering t-shirts! Edgemont may dominate the whole walk! But we're getting some heartwarming response from my firm, Smith Barney, too. Thank you to everyone from Taylor and from PCF. There is no government funding of Pediatric Cancer Research. The kids are dependent entirely on private fund-raising. Don't forget to email Sue at “suematt624@aol.com” after you register at www.PCFweb.org . Give her your t-shirt size and your address so we can send you the Tay's Team "uniform". later this week we'll have a walkathon update box on the home page.

2. You should notice some more changes with the site, courtesy of Mike Mione. The home page shows just the last time the site was updated. When you click on the date and time, you come to the "last 30 days" page with the newest update on top. You can always click on "journal" to get all of the time frame choices.

3. Tales missed Chemo again on Friday but this time is was OK. It meant she could go to two parties...both for her friend Laura. The numbers were very close so she is a lock to get bombed on Monday. Four more days in Hotel Columbia and then she tries to make Jenny's Bat Mitzvah on Saturday. Hey, you never know with this kid.

4. More chemo means more transfusion. She gets lots of platelets and blood now because the chemo has beaten her body down. For those intrepid donors, (and all you folks with a needle fetish), we could use a hand for both blood and platelets. For details just click on the "blood-drive" tab above.

5. Speaking of tabs, the pictures site just got a facelift. I can now post pictures myself as I get them. Click on "pics" above and you will see three pages of pictures. The first grouping is pictures form the Soaring Words event. First there are the pictures of Sue and the kids delivering the pillows and quilts to some very deserving kids at Columbia, (I know I got the order wrong but I'm still new at this site), then there are the pictures from the actual quilting party. You can't know how much impact you had on some very sick kids. Then there are some past picture of Tales at her best. Make sure you go to the last page to see Tales with her favorite Nurse Practitioner at Columbia, Danielle. She pulled Tales through some very bad times last trip. So Tales rewarded her with a hair-do. No good deed goes unpunished!

Meanwhile the walkathon is off to a great start. The registration form has only been available for download beginning today so if you tried and had trouble, that's why. The address is www.pcfweb.org A whole bunch of people got started today. DON"T FORGET TO EMAIL SUE WHEN YOU ARE DONE TO GET YOUR TAY'S TEAM T-SHIRT. Her email is suematt624@aol.com. Tales is hoping to field a sea of blue! Choose "youth large", "adult small", "adult medium", "adult large" and "adult extra large".

On the medical front, Taylor had her conference on Monday with her Oncologist who was very pleased with the response to our new drug cocktail. So pleased that, unfortunately, he wants to do it again. So poor Taylor has to get bombed again, possibly as soon as Thursday if she is strong enough. It's really horrific but a little easier when you know it is working. After that will be her next surgery sometime in April. One step at a time.

More importantly, Tales is back to having some fun. She is excited to be going to another Bat Mitzvah for a school friend. Here we go again with the dresses and the hair/makeup. We should have had one boy! The pillow and quilt making party is tomorrow at Seely cafeteria. if you have a last minute interest, email Sue at suematt624@aol.com. And then look out!! The PCF walkathon is next and Taylor is hoping to field a big group of walkers wearing Tay's Team T-shirts. Save the morning of April 18th. It's going to be a blast.

By the way, we’ve had a very nice response to Taylor’s most recent attempt to help other kids…her pillow and quilt making party for Soaring Words. The event is run by Soaring Words, which supports seriously ill kids and their families. The pillows and quilts go to some very sick and very deserving kids on the Pediatric Ward where Taylor is treated. The party is THIS SUNDAY at the Seely cafeteria from 3:00PM to 6:00PM. We’ve still got room so email Sue at suematt624@aol.com. Details on the event can be found in the journal entry for 2/24. Just click on the “Journal” tab, then the “Last 30 days” tab and scroll down. See you there!!

Unfortunately, Taylor has been battling nausea, vomiting, fatigue and another excrutiating round of mouth sores. Think of the worst canker sore you ever had and then think of getting a handful all at once. Now imagine that they spread down your esophogus. She also has lower GI pain. We're using heavy pain drugs and nausea meds as she toughs it out.

Unfortunately today the pain got too bad and the fevers started,(she's neutropenic), so this morning we took her to the hospital again. She'll spend the day in clinic waiting for a bed in the inpatient facility and we'll probably be there 'til early next week. She'll be getting some of that blood and platelets you've all been donating so generously. THANKS! Stop by if you're in the neighborhood and...say a little prayer for Tales.