Murphy’s Law applies to the little and to the big. On the “little” side, if you read the last entry, you know that when you type your updates at 4:00 AM, you type poorly, punctuate badly, and spell even worse! You also forget to spell check. Sorry about the quality of the last one. If you need a translation, let me know.

Unfortunately the Law applies to the big things too. Our optimism was poorly placed this time.

We had preliminary reads of the CT scan on Tuesday Dec. 4th that suggested a dark center to the lump that might be liquid and therefore a classic cyst profile. We should have known when the surgeon, (yes we are referring to the famous Dr LaQuaglia-Taylor’s favorite surgeon who she now insolently refers to as “The Quags”) stared so hard at the “cyst” and pointed at the area around it as suspicious as well, that we were in for a surprise. He offered to do a biopsy on Thursday in his clinic at Sloan. It was scheduled for 8:00 AM. Since we thought it would be routine, I went to work as usual.

”The Quags” had a pathologist standing by in his office so we wouldn’t have to wonder for long afterward. After a little Novocain and after kicking Sue out of the office so she wouldn’t drive Tales crazy by watching the looks on everyone’s faces, they tried to withdraw the fluid with a biopsy needle. Well after 4 or 5 tries, it was clear that there was no fluid in this thing and they pulled a solid sample for the pathologist. Moments later Sue was conferencing with the surgeon. The lump was a tumor. He asked what should be told to Taylor. Sue answered as we always do. Tell her the truth.

Tales had this unreal calm. She explained that she had been expecting it and that she was ready for surgery…just like that. "The Quags" looked at Sue and Tales and asked when they wanted to have it out. They both answered together…"tomorrow morning!" And the famous Dr LaQaglia said “OK”. Tales added that she was never really happy with the scar from the last surgery in the same place so she suggested it would be a good time to get the scar revised too! Vanity, thy name is woman!!

Now that might not sound like much, but you have to remember that many, many parents with pressing problems and long contemplated surgeries wait weeks for this man to do his magic. Putting her in at the crack of dawn the next morning is just the kind of thing that makes him special and a tiny example of the reason Tales feels so good in his care. Tales had one more pronouncement. She was scheduled to have a date with Jordan for dinner and the Radio City Christmas Show on Friday night. Whatever they wanted to do tom her was fine but SHE WOULD BE GOING ON HER DATE! There was nothing to do but smile and shake our heads. “The Quags” said “OK, bring your dress with you”

The next day, Tales was interviewed by an anesthesiologist for the 16th time. Yep 16 surgeries or surgical procedures. This time the only missing part after surgery would be the little tumor. They took out the lump in pretty short order and felt around the area in the suspicious spot. Whatever it was, it was not obvious, active tumor and considered unworthy of more serious dissection. Tales was back in the clinic recovery room by 2:00 PM. She was sore and cranky but she confirmed her date. At 5:00 we left Sloan to go to dinner near Radio City. Only one slight change of plans was made. She asked Sue and me along for dinner just to be safe, (Imagine- just what Jordan was hoping for…dinner with his girlfriend’s Dad!!...Yippee!!).

When the bread arrived, Tales stared us down, confirmed she felt fine, and that she was going to the show. When the salad arrived, she was drooping a little but made a fist and insisted on going. When the dessert was offered, she whispered her commitment. Then she fell dead asleep at the table. We put her gently in the car and took her home. There would be no Radio City that night but let me assure you that we all saw a show… Courage is an over used term in this country but this kid earns the descriptor every day.

Because we now needed some real detailed analysis of what was going on inside Tales, we had scheduled scans at MD Anderson for Monday with consults on Tuesday. The schedule meant that we would need to leave Sunday in the afternoon to be at MDA first thing Monday. Saturday Tales was a real bed potato. She had pain in her throat and chest when she breathed and was having trouble catching her breath. Sunday she seemed a little better in the morning but by lunch still couldn’t manage a full flight of stairs. We cancelled the trip and started trying to book a local set of scans that we could copy for all of the doctors. One more bump along the road.

We did, in fact, get an appointment at a local Radiology practice in the City for a Thursday set of scans and a Friday consultation. It’s considered a little odd but I like to sit with the Radiologist and go through the scan with them so I understand it thoroughly. To my surprise the, this practice was happy to oblige. So Friday we got the complete low down, (actually what they call a “preliminary” since there is a more detailed, formal and thorough read to follow for the oncologists). We also got the initial pathology back. It is the same cancer, Mesenchymal Chondrosarcoma, and it was removed with clean margins. Interestingly, it was about 25 % necrotic, or dead. That’s the highest number we have ever gotten from pathology. So even though the docs would be explaining that you can’t infer causal relationships, we think we are on to something with the new meds.

The good news from the scans is that the nasty little bugger that we radiated is dead as a door nail. It is also good news that most of the old disease is either unchanged or slightly better. This is a good thing since Tales has only had one dose, (a partial dose), of this new medicine in her body so she hasn’t had much in her system to fight with. We had to stop for radiation. The bad news is that some of the spots that were active before are a little more active and bigger since she had to be off treatment during her radiation. Time to pump our favorite lab experiment with more chemicals!

Like the rest of the story, this chapter has a twist. The scan shows a big hot area in her left lung that is not like tumor but instead looks like infection or pneumonia. So after we called Tales at school to tell her the news on the scans, we also had to tell her to rush down to Columbia for an exam and antibiotic. Tales will go into the Christmas season taking yet another pill! Murphy clearly has a mean streak!!

So just how many hospitals and doctors can you be treated by in only one day? If you guessed less than 3 major medical centers and 6 doctors you must have forgotten the earlier chapters of this story or be new to the site. Today we covered a lot of groun! But I’m getting ahead of myself.

Tales finished her last doses of radiation at Halloween and managed to get home for some fun and for her birthday on Nov. 1st. The fatigue and digestive track issues were pretty severe< 9the radiation spilled over a little to little esophagus). She really took the long absence from home pretty hard so a big party was just what the doctor ordered.

And she DID party. Her sweet 16 party was a huge success. Two school buses of friends traveled in to NYC to a hot club called Pacha. They found great food, fabulous music, great (non alcoholic) drinks and 8 professional security people who made sure no one left, no one got out of hand, no one got served and the bathrooms were for…well, going to the bathroom. Oh yeah and though we weren’t allowed no the buses, we had professional chaperones on the buses looking for bad behavior and any contraband. They may have found a way to sneak a little something in but it must have been small. No one was out of hand or out of control

The kids danced insanely all night and looked like a bunch of “20 somethings” when they were all dressed up. Actually we felt a little awkward watching. The way they dance puts “Dirty Dancing” to shame! They call it freak dancing or “grinding”. Let me be clear, they didn’t dance that way when we were kids. Frankly if anyone had ever danced like that with me, I think I would have wanted to light up a cigarette afterward!

There was also some real work to do. Tales was way behind in school and determined to catch up. She dug in and recruited a friend or two together up to speed and finished the term with fabulous grades. Oh yeah, and she took the SATs the morning of her party! She felt pretty good about the test.

New treatments have to be cooked up to follow on after the radiation since we still have some cancel to kill. She kept up with her normal treatments and we prepared for next steps. She had to wait until some time passed after the treatments for her body to rest and her blood counts to recover. That left time for some fun.

We have spent the last three Thanksgiving Holidays with the famous aunt Annie, Uncle Bill, Samantha and now Rose in London. The Brits don’t totally get it but they know there are enough US Ex Pats in London to make it worth stocking up on turkeys and cranberry. Tales had a ball. She likes nothing better than being totally engulfed in Sammie’s life and she has finally found her energy match. At the end of the day, it was tales who needed the nap and got cranky, not Sammie. We took off on the 11:40 PM flight on Wednesday and were in the “flat” by lunch. Sunday we got an early start and had time to settle in for the new work week. The whole weekend was a very happy blur but mostly I think Tales was “Thankful” mostly for her own bed!

Meanwhile, Taylor’s counts have been very slow to recover so it wasn’t until last Tuesday that she finally got her first dose of a new chemotherapy. This one is called Pemetrexed. It is a neat new way to get at the tumor using a different pathway than the early chemos we used that should have worked but didn’t. And of course we are still on a laundry list of “business as usual” stuff. She will be nauseous and she will be tired but we have bee here before and Tales knows how to make it work, (actually Mom and Tales know how to make it work). We are down to only one active nodule and a bunch of suspicious hot spots. We just need that one secret ingredient that this thing doesn’t like.

And the annual tay-bandz Holiday Boutique was just last week! This is our third year and it was the biggest! It starts with the tay-bandz journal which raised a record amount. For those of you who wrote, thank you!! It is incredibly touching for Tales and for us. Then there is the slice of gross sales which was an all time high!! And finally outright donations were excellent. The products were the best ever and the crowd was heavy and constant. A good time was had by all and a good cause was furthered. Tales loves it because not only does it raise her count towards her million dollar goal but it is sometimes the only opportunity she has to see some old friends.

And now the explanation to go with the intro. On Monday evening, Tales went to find Sue with a worried look on her face. She had found a lump in her neck next to the scar that she got from the lymph node removal earlier this year. It was about the size of a pea and it was hard. Frankly is was also right where the problem was that lead us to the change in diagnosis. Sue was a bit panicked. I started making calls for insights. Taylor’s nurses and doctors started looking at past scans for signs of this new problem. Taylor of course went back to her homework

A flurry of activity ran all through the night. We had conversations with doctors at MDA, and Columbia and even got one of our favorite doctors to stop by the house to examine Tales. We agreed to a CT scan in the morning at Columbia which would guide next steps. Of course as luck, (bad), would have it, Tales was scheduled to be at NY Presbyterian, (where she had her last big surgery), to see a pain management specialist. She has so much left over back and arm pain that she is even having trouble sleeping. Oh yeah, ad to top it off, Tales didn’t want to miss her AP Bio test at 10:00 so we had to wait for her to finish before we could head to the hospital. (She thinks she did well by the way). So she ran to Columbia, got examined and her blood drawn, went for a CT, got examined again and got the news that she needed see a surgeon to get a biopsy of the lump as soon as possible. Tales of course chose her favorite surgeon in the world at Sloane! So now he race was on. We ran to NY Presbyterian for pain help while calling the surgeon for a last minute consult at Sloane. By the time we were beginning our exam at NY Presbyterian, we were getting confirmation that the surgeon at Sloane would see us but only if we hurried over! Now we needed a divide and conquer strategy. I ran to Sloane with a copy of the CT to meet the surgeon. Sue and Tales finished the consult and got a special experimental laser treatment for pain. By the time the surgeon had finished reviewing the scans; Tales and Sue were dashing for Sloan to catch the surgeon before he left. That left everyone just enough time to agree on a biopsy date for Thursday and subsequent surgical plan. Yep. Three hospitals, six doctors in person, and one on the phone all in one day without missing AP Bio! You can’t make this stuff up!!

The short version is that this new lump doesn’t look like her old disease and doesn’t appear like her old disease on a scan. We feel pretty good abut the scan indications and are pretty positive about biopsy the biopsy results to come. This is not a business for pessimists. We are thinking positive thoughts!!

More news soon and pictures will follow too so keep tuned in!!

Today is day 1600 of Taylor’s recovery!! OK time for an update. I told you we were back and we would keep you up to date. If we hadn’t wanted the update just to bring her friends and family up to date, we would have wanted it for the warm response. The website hits and emails have been truly amazing.

We still keep to a quarterly scan schedule and October 8th was our day for the next pictures. Tales insisted on using Columbus Day to avoid missing a school day. We flew out late Sunday and did our standard sprint though MD Anderson Monday. We did blood work, X-Ray, Pet-CT, CT, PFT and an IV treatment and still had time for a consult before we ran for a plane home. Tales does this all the time. It drives the hospital and the doctors crazy but it gets her in and out with as little time away from friends, (and Jordan), as possible.

To cut to the chase, the scans were not all that different. They were kind of unchanged or, ( yep you guessed it), stable. You may recall that Tales has two troublesome tumors in her left lung and here and there some spots that we keep any eye on. The tumors were unchanged or maybe even a little smaller in some cases but the largest and most dangerous one was clearly more active. We concluded that we needed to get some kind of local control over that one before it can grow or spread and because we can’t really do more surgery at this point. The answer is a high tech form of radiation that can cook the tumor very accurately in the middle of her chest with minimal damage to the surrounding tissue. It is all about physics and hard to explain but lots of beams of radiation are passed through her body from several angles. No single beam or even combination of several beams are strong enough to do much harm or good. But where you get all the beams to intersect, you get an intense spot of radiation that is the combination of all the beams at one spot. That spot is deadly to the tumor. We really think this will be the end of the worst of the remaining disease. One more threat bites the dust!!

Sooo, Tales flew home on Monday after the scans but had to fly back Thursday of the same week to Houston at the crack of dawn to spend two days being tested and measured and scoped for the radiation. I’m sure you know by now that Tales hates to be away from home so flying back was a big downer. That, however, is not the real downer.

The radiation dosage was calculated to require 15 days. That would be 3 “work” weeks of 5 days each separated by weekends. We got the “sentence” reduced to 14 days but we figured out that Tales would end up in Houston in radiation treatment on her birthday. So we went back to the negotiating table one more time. We got it down to 13 days, (meaning she would get home on Halloween in time for fun and wake up at home on her birthday), if she would do a “double day” on one of the days. That would mean going once in the morning early and then late the same day for another session. Today was that day. So now we are down to six more days; three this week and three next week, before she can return to school and her “normal life.” The treatments are painless. The actual time in the machine is very short. But the long days stuck in Houston trying to keep her hand in at school and in touch with her friends is very hard on our little champion. It doesn’t help that the radiation exhausts her and the pressurization of the planes recreates the post surgical pain for a couple of days each time she flies. Net net, she really gets down while she goes through periods like these. Being back to normal is everything to Tales. To those of you who send a text, or a card or make a call, you are making her feel better than any radiation treatment she can have. If you have lost touch a little or get a spare minute in a day, she loves knowing people are thinking of her. And if you haven’t written a message for her journal yet, email Sue as soon as you can. She reads them over and over. Meanwhile, Tales has toughed out harsher stuff. She can handle this too with a little help from her friends. And oh yeah, the radiation oncologist is supremely confident he is getting at this nasty bugger. It’s one step at a time on the way to remission again. Bet on the kid with the look in her eyes!!

September 24, 2007

Weeeeeeeeee’re Baaaaaaack!! We’re not sure if anyone is still out there but if you’ve followed Taylor’s story and been part of her life, we’d like to bring you up to speed. Actually Tales is anxious to bring you up to speed. And if you know someone who you think would like to loop back in, please spread the word.

Let’s start with why we went radio silent. It’s not that things got too boring or normalcy returned to our home. And it’s not that we didn’t realize that a lot of people wanted to stay in touch with Taylor’s progress. Actually, as you may have guessed, there was lots of news….mostly ugly…, and many things good and bad we would have loved to share. This time, however, Tales needed a little space and wanted to be very private. Frankly, she had just started feeling accepted as just a normal kid and really liked it.

So for as long as Tales could, she kept her new battles to herself. She did her hospital visits, treatments, even surgeries as quietly as possible and did her best to hang on to her life as a normal kid. We all honored that wish for as long as we could. Our apologies to anyone who felt slighted or left out but it didn’t seem too big a request to honor.

Then, little by little, it got pretty obvious that something was up. People close to us and not so close, speculated, guessed and flat out asked about Tales. It was nice to know that people really still cared so much. At some point, the stories actually started to be worse than the reality and so she began to get a little public this spring and summer. Now, as she approaches the start of another school year, Tales would like to catch everyone up so she asked us to update the site and keep it up to date. Actually the good news about her stealth treatment plan was a chance to feel normal. The bad news is, she didn’t get all the support and warmth she did the fist time around and she really missed that! So…Welcome back, and thanks for staying in touch!

OK so when we left our story in February of 2006, Tales had just finished a magical Holiday season making sure every tradition was observed in every detail. The tay-bandz fundraising effort was moving along with a kickathon run by Grand Master Kim which raised $10,000!! Taylor appeared in an interview in American Girl Magazine to raise awareness of Pediatric Cancer issues, and Lance Armstrong added Tales to his “survivor” site with a video and her story. You can see her on the Livestrong site!! And finally we rolled out the promotional video created by a talented young friend, Zach Kornfeld, to use as we take our plea to corporations and charitable foundations. The link is HTTP://69.28.71.25/taylor_matthews.wmv . Zach has a big time film career ahead of him.

However, you may also remember that our last entry mentioned another set of scans that seemed to be encouraging but that there was something on the film that caused a delay in getting results. You can imagine that a minute seems like a year when you are waiting for a result. And frankly it feels like it ages you another year. We got a green light at the end but that concern, in retrospect, was the beginning of a long stream of challenges to come. Things were not as they should be and we celebrated in ignorance of a coming storm.

But let’s not get a head of ourselves. All the good stuff in February and March were followed by a wonderful start to spring. We spent Easter at our favorite destination, The Cloister at Sea Island, Georgia. The whole family was together at one of the most beautiful and welcoming spots in the world. Tales even brought her friend Emma who ensured laughs and fun the whole time. In addition, tay-bandz had another successful fundraiser, this time with Rita Wilcox bags. And later in April, Bloomingdales worked with us to raise money based on sales in the store by friends and family.

May was full of plans for Taylor’s first real summer in three years and she selected a teen tour of the West coast . Her hair had grown out to the bottom of her neck and she was looking and feeling wonderful. Tales even spent some time working out and preparing for a return to competitive sports.

Then Tales and the rest of the family got rocked back on our heels. Once more we were holding our breath while waiting for our scan results. On May 23rd, 2006, for the first time in two years, at just about the 2 year anniversary in Taylor’s remission, we had a new finding that was almost certainly a recurrence of the cancer that Taylor had seemed to beat. There was a hot spot on the scan in the left adrenal gland. It was a site that seemed from her first diagnosis to be suspicious but had not shown any activity since our early success at Columbia. We did further tests hoping against hope that there was another explanation but the results were conclusive. Tales was about to start reliving the nightmare.

It’s hard to imagine how much of a blow this was for the family and for Tales. The fact is it probably hit us harder than the first time. When Tales was first diagnosed, we were scared and horrified but we knew very little about her disease, the ordeals to follow, the treatments she would endure and what surgery really means for a kid like Tales. Remember that by now we knew how rare her cancer was, how resistant to treatment it had been, how many places we had found it and how spread out it was. We also knew the pain and suffering of surgery. The prospect of doing battle again was truly shocking. What might not surprise anyone is that the first person to snap back in to battle mode and resign herself to round two of this title fight was Taylor. Within a day after her confirmed recurrence, she was scheduled for surgery, May 25th….one day later than she wanted it! She also decided there would be no communication outside the family. She treasured being a normal kid and she was determined to stay that way. Whatever we needed to do to her, she would accept but she would accept no special status or attention. The website would stop and she would just go quiet on her health. Tales determined to take the summer to beat the disease again and return to school as scheduled in September.

I guess it goes without saying that despite all the advances in cancer treatment of the last several decades, the most effective and conclusive treatment for most cancers is radical surgery that removes the tumor and any tissue surrounding it. The procedure Taylor had is known as an adrenalectomy…removal of the adrenal gland. Tales like most people these days, qualified for “minimally invasive surgery” or laparoscopic surgery, which accomplishes the surgery through tubes inserted at several spots in the abdomen. The surgeon actually disliked the term “minimally invasive”. The approach shortens the time to recovery and lowers the risk of complication and infection in most people. However, he cautioned that though the incision was minimal, the tissue trauma and damage to internal organs is the same and no minor event. Tales would have two small incisions in the abdomen and one in the navel. The good news is that God created us with back up plans. We have two of many organs when one would do just fine. One of those organ systems is the adrenal system. People can live perfectly normal lives with just one adrenal gland and Tales would still have the one on the right. For most people this would have been a pretty big deal and certainly we didn’t take it lightly but on the Taylor scale, this was about a five or six. She spent several days in the hospital after a successful removal of the tumor and the organ with no evidence of spread in the local area and began recovery at home.

June 2006 brought the much harder step…a return to chemo. It had been about three years since her diagnoses and two since her remission was declared. Now she was facing more and different chemotherapy treatments. Surgery is acute trauma with a very short duration and a fairly predictable recovery, (especially if you are Taylor), but Chemo is long and protracted. It is less a wound and more an extended voluntary torture…a systematic poisoning of the body in the hopes of hurting malignant cells more than normal cells. We did our normal rounds of well known doctors in the field at a handful of major institutions looking for the right agents. We got lots of opinions about how to attack the chemical and biologic pathways in Osteosarcoma but Osteo as you know from this site is not thought of as terribly chemo sensitive when the standard treatments don’t work. These were all informed guesses and we took the best thoughts to a conference with our chief advocate at Columbia, Dr. Jim Garvin. We picked a well known treatment for breast cancer, (Gemcitabine and Docataxel), that was showing promise in pediatric solid tumors. One more plug to help tay-bandz and any pediatric cancer research…EVERY TREATMENT TAYLOR HAD RECEIVED TO THAT POINT AND EVERY TREATMENT SHE HAS HAD SINCE IS A “HAND ME DOWN” FROM ADULT CANCER TREATMENT. PLEASE HELP US PUT AN END TO THE PERSISTENT LACK OF FUNDING FOR PEDIATRIC CURES!

There was one more odd result of the surgery that, in retrospect, was a bit of foreshadowing much like the suspicious scans of February. We waited to receive pathology for several days longer than ever before. They asked us for the slides from Taylor’s original pathology and brought in several other doctors from around the hospital before coming to conclusion. The appearance of the cells seemed to be very different from the classic appearance of Osteosarcoma. The cells seemed to resemble chondrosarcoma, (a cousin of Osteo that arises form cartilage) and be mesynchemal in type, (a primitive type of cell origin stemming from connective tissue). Given that many aggressive tumors of this type often have more than one type of mutated cell and that there were some cells of this type in the original sample, the consensus was that this was a recurrence of the original cancer but never labeled as to type.

Little heartbreaks can sometimes be harder to take than the big ones. The chemo combination Tales was taking was supposed to be relatively mild for most people and to leave fewer noticeable side effects. That, however, was not to be. Every treatment made her violently ill and shortly after beginning treatment, her blood counts plummeted and her hair began to thin. The summer teen tour was off and so was any plan she had made to prepare for a return to fall sports. Summer for our little champion would be bleak again. Four summers had come and gone in her young life since diagnosis and four would be ruined by disease, surgery and treatment.

Leave it to Mom and Tales to find the lemonade in every lemon. They scheduled a trip to the Caribbean between treatments in July with her friend Jenny and set a date in August to go back to Sea Island with the family and the famous Aunt Annie. It is hard to say which is more healing, Sea Island or Aunt Annie and her adorable daughters, but the combination created a chance to forget the medical challenges and focus on the challenges of sandcastles and body surfing. Tales had one more round of chemo to go but she returned home ready to finish it off and get back to school.

I’ve described before the little cloud that seems to hang over Taylor every once in a while especially when she is getting back to normal. As August ’06 was winding down, the cloud reappeared in a somewhat innocuous way and from a truly unexpected source. One of the side effects of some of the drugs that Taylor is on is a dramatic slow down in the healing process. One evening Taylor described pain in her belly that was getting worse. Nothing seemed to be wrong as we pressed around the belly but it was very sensitive and turning red in a growing oval shape around her belly button where the scab was still evident. The bright red oval grew rapidly and was growing in pain and becoming hot to the touch. By evening she could barely walk from the pain and clearly was worsening. Another emergency trip to the hospital revealed that Tales had cellulites, an acute and worrisome infection of resistant bacteria that can enter through breaks in the skin and is a common result of surgery. Tales was admitted for an intensive 1 week in-patient treatment using powerful antibiotics. The drugs eventually worked but not before an odd alternative treatment applied by Christine Grimaldi, (part PHD, part coach, part child psychologist and part friend to dozens of kids at Columbia each year), our favorite alternative medicine lady who used a combination of hot and cold towels and herbs applied to Taylor’s belly. The redness immediately began to recede. Summer was ending on another down note. She was discharged with home antibiotics just in time to begin school as a 10th grader.

Back to school was a big highlight for the whole family in September ’06. Ryan was starting her senior year already accepted to Wake Forest through early admission and she was thrilled to be going to her first choice while leaving the stress of the college process behind. Corey was starting her first year at the high school as a 7th grader and joining both of her sisters at the same school for the first time. And Tales was getting her wish to be a normal kid just preparing her “back to school” clothes and joining her friends for classes, lunch, and boy talk. Of course Tales needed to do a little bit more preparation than most kids. A summer of high dose chemo had left her hair thin and needing a little eye brow and eye lash help. She put in hair extensions at Adam and Eve, added a touch or two to the make up routine with Mom and of course packed a pill box containing her on-going treatments. She looked absolutely beautiful as her sophomore year began.

September 2006 was only 3 weeks old when Taylor’s good time got interrupted. She was reporting pain high in her femur, (thigh), which not only was the site of one of her original tumors but is a classic location for osteosarcoma. Immediately, we got an X-ray. Nothing showed in the exact location of the pain but the radiology report suggested a suspicious thickening and growth in the top of the femur at the hip joint. There were a lot of long faces in the clinic and we were prepared for potential bad news. An MRI was immediately requested to get a clear picture of what was going on. Unfortunately, the results came back Friday afternoon. The Radiology department was offering a Monday time slot. That may sound reasonable to the average person with joint pain or potential fracture but you can imagine that 3 days seemed an eternity to us. We were able to push the date to Sunday night but no closer…not at Columbia and not at any hospital we had any relationship with. As I stared at the tears in Sue’s eyes and the fear in Taylor’s, I remembered a client of our firm who owns a string of imaging clinics. I quickly called a good friend and colleague from work who made the connection, (thanks Mary!!) and by Saturday at 9:00 we were in the waiting room on Long Island for an emergency MRI. They even called in the Radiologist so we would get an immediate reading as soon as she got out of the machine, (thanks Lena).

By the way, the appointment meant we were going to miss the wedding of my work pal, and the world’s greatest administrative assistant, the famous Diana. We had been waiting for two years to be there with her on her big day and we felt terrible. By late morning, after poring over the scans, the radiologist gave the word. As best he could tell, the thickening was likely chemo related and he read the scan as negative! After a quick celebration at McDonald’s and a trip home to change, we made the wedding and Taylor made it to her social plans as scheduled. But wait…we still had to go to Columbia Sunday night for the official MRI on 9/24. That reading came back suggesting that there was an “infarct” in the hip, (a growth or inflammation of the bone that can come from any number of sources including chemo and stress). So despite the all clear for cancer, Tales finished September on crutches to allow her bone to heal!!!

It seems that for much of the last few years, Taylor has been preparing for scans, been sitting in the machines or has been waiting nervously for results, (actually, she waits-we get the nerves). Only two weeks after the emergency MRI, Tales was preparing for her normal 90 day scans. At this point we had been building some confidence that, even though we had relapsed in the adrenal gland, the most dangerous left over “dead” tumors, those in the lungs, were under control. On October 9th, 2006, our worst nightmares turned very real again. The radiologist reported that one of the larger calcified and scarred nodules in Taylor’s lungs had grown. It was alive, viable and evidence that some of Taylor’s tumors may have been only dormant not dead. Additionally I was now reading the scans every time they were run and I was pushing for someone to explain a spot in Taylor’s abdomen as well. All I got, however, was confirmation that the radiologist noted nothing strange there. She had relapsed for a second time in 4 months only six weeks after chemo ended and this time is was no easy task to treat.

We have always relied on our own research and doctors all around the country to keep our approach creative, aggressive and founded on the best thinking anywhere in the world. Now we redoubled our efforts to find new answers. We spoke and emailed with doctors all over the country and Europe. As we read articles over the weekend, we came across several pieces by a leading name in the field of pediatric cancer whose work at the Mayo Clinic had helped shape our decisions bank in 2003. He was now at MD Anderson in Houston, (one of the most famous cancer hospitals in the world and a leading research facility), and using techniques in combination that we had never heard of before. On Saturday afternoon October 14th, I emailed him my questions. An hour later he emailed me back. Over several hours we exchanged information and questions until it was obvious we needed to speak. An hour into that conversation, I agreed to copy all the scans onto disk and Fed Ex them to Houston. On October 16th, we paid our first visit to Dr Peter Anderson at MD Anderson.

MD Anderson is like no other hospital we have ever visited. It is run with the efficiency of a Swiss Bank. For starters, it has a hotel physically located in the hospital complex. It is run by Marriott and feels like one. Like any reasonable hotel, the desk clerk checks you in, tells you when and where the restaurants open and where the business office is if you need a fax or copy. THEN they present you with your itinerary at the hospital for the coming days showing every test and appointment scheduled, the location of the event, and the telephone number to call if you have any issue. More impressive still, they actually stick to the schedule and run on time!!! Startling actually in this day and age of the US medical system.

The two days with Pete Anderson were remarkable and sobering. After running through a litany of tests that checked and rechecked everything we had looked at in NY and more, he sat down to review the tests with us…reviewing and explaining the actual scans by showing us the films and walking through the films. While we were waiting, a medical resident, who was shadowing Dr. Anderson, did a cursory exam on Tales. He stopped shortly into the exam and asked Dr. Anderson to feel the left side of Taylor’s neck in the area of the lymph nodes. There was a palpable hard lump under the surface of the skin which we all felt. You don’t need to be an oncologist to know that this is a very bad sign.

When we looked at the scans, it was obvious that there was a hot spot of cancer activity in Taylor’s lymph node. We were horrified that this had not been referenced in the scans only one week earlier at Columbia!! And why had they not noticed this in clinic at Columbia during their normal exams before each treatment?!! Then the news got even worse. Anderson pointed out that the growing node in Taylor’s lung was not only larger but was very hot on the PET scan. Further, it was NOT the only spot in Taylor’s lungs that was hot!!! In fact, there were several hot spots in both lungs! He even worried that there were some other suspicious spots elsewhere in her body. We were almost speechless. We asked the questions anyone would ask? How could it be that these spots were not noticed at Columbia? Why didn’t they mention the high metabolic activity of the one spot they mentioned notwithstanding the handful they didn’t mention? How could we believe in any scan or evaluation coming from Columbia radiology? And why didn’t the Columbia clinic doctors tell us any of this?

Some answers were provided, (none very good), and some questions have never been answered. One thing was certain, we had been led to believe we were in better shape than we were and we had lost some time in reestablishing control over Taylor’s disease. In short order, we decided we needed to get all future scans at MD Anderson and that we needed to visit with the original surgeon from Sloan Kettering who performed the two big lung surgeries on Tales back in 2003. We also found Dr. Anderson’s thinking to be creative, aggressive and refreshing. He spoke the plain unvarnished truth but had great enthusiasm for next steps to help Tales. He had more ideas than we could actually execute at one time! We asked him to consult on the case permanently. Part of the blunt assessment we received from him was a comment and a question. He was troubled by the behavior of the tumors and asked us repeatedly whether we were sure that Taylor had Osteosarcoma and not Ewing’s Sarcoma or some other variation. No one had ever given us doubt about the diagnosis, (except of course the significant delay and debate over pathology after the adrenal surgery) and the samples had been under the microscope several times at Sloan and Columbia. Upon hearing that Sloan had done the diagnosis, he dropped the discussion with a comment that they certainly should know Osteo when they see it.

Interestingly, at this point, opinions diverged on what to do next. We clearly needed to add and change treatments and we needed to plan to eliminate the newly reactivated tumors. Anderson wanted to charge ahead with treatment, as we surely knew what we were dealing with, and begin to discuss surgical solutions. Dr. Garvin at Columbia was anxious to get a biopsy of the tumors in Taylor’s chest but less interested in surgery. Dr. LaQuaglia at Sloan was interested in a sample, either through biopsy or actual surgery. He was willing to do surgery and do it immediately. We chose to do things in steps. LaQuaglia arranged for a biopsy and we did another search for a new chemo regimen. This time we used Irrinotecan, (a close cousin of the agent that we think worked when Tales first went to Columbia) among other drugs. We reached agreement that if the lymph node could be accessed and be accepted as representative of what was growing elsewhere, perhaps we could save Taylor the pain and risk of getting the sample from the lung. On Oct 30th, we did the biopsy at Sloan and the preliminary report came back once again as Osteosarcoma. The news was as expected and Tales plowed back into the horrible world of chemo. She spent 11/01, her birthday, for the first time, with a needle in her arm being poisoned.

Through it all, however, Tales and Sue kept up the tay-bandz fund raising effort and in late October they ran a fundraiser with Bloomingdales in White Plains where we received a percentage of every dollar spent. Tales also kept plugging with her school work. Obviously she missed a lot of days due to Dr appointments and treatment recovery, but consistent with everything else Tales works at; the grades and the work were still at top levels. As the news and the obstacles got worse, she found a way to stay current and perform with her peers.

As November began, Tales was due for yet another shock and set back. Final pathology came back from Sloan. We read it over and over again before we could believe it. The report stated that the biopsy sample taken from the Taylor’s neck was NOT Osteosarcoma but an even rarer disease called Mesynchemal Chondrosarcoma!!!! Further, upon comparing the sample to the original taken from Tales in two operations in 2003, it was determined that the correct diagnosis was ALWAYS Mesynchemal Chondrosarcoma. She had been misdiagnosed from the beginning!! Nothing had demoralized the family to quite the extent this did. The whole first nine months of intense chemo at Sloan had been misguided, probably wasted, and possibly unnecessarily harmful. Every treatment since then had been predicated on the same bad information. Anything that worked was something of an accident or good fortune. And worse, MC is even harder to treat than Osteosarcoma. Now certain comments and issues came rushing back to us. Why had the chemo at Sloan created no necrosis, (cell death)? Why did Columbia have so much difficulty confirming the Sloan diagnosis and finally resolve to merely call it a recurrence which had an appearance of chondrosarcoma and a mesynchymal origin? Why did Peter Anderson find it so hard to believe that we were dealing with Osteosarcoma and not Ewing’s, or something else?, (Ewing’s is similar enough that most doctors use the treatment for Ewing’s to start treatment of MC)? How could the most famous cancer hospital in the world misdiagnose Taylor’s disease three times?!!

After we took the time to vent and to regroup, we started once again to research our options and to formulate a plan with the string of doctors we now had on the team. There was some good news if you looked at it correctly. When we had started at Columbia, the “out of the box” solution that Jim Garvin suggested had come as a result of noticing that Taylor’s Osteo was not only resistant to Osteo drugs but didn’t look like other Osteo. In fact it looked a lot like a soft tissue sarcoma. Consequently we had adopted a regimen usually used for soft tissue sarcomas and by “happenstance” used drugs that had some effectiveness in MC. THAT explains why the first success we ever had was with the chemo plan we started at Columbia. Also, the other dozen or so drugs that Tales was using were probably as applicable to any given sarcoma as to any other. Importantly, we HAD found agents and pathways that worked on Tales even if accidental. Now we needed to find more. Meanwhile we came to understand that MC is notorious for coming back if you don’t remove it completely. We stayed with the chemo and biologic agents and began a search for a surgical solution. It seems that the tumors that had begun to grow were in places that by some surgical estimations were either inoperable or, in the opinion of one noted surgeon, would cost Tales the whole lung. We had the appetite for more surgery but most of the surgeons did not.

What, you might ask was Taylor doing this whole time? Well, she determined within 5 minutes of hearing the whole story that she wanted surgery, she wanted it ASAP and she wanted every spot, dead or alive, taken out at the same time. She was NOT willing to go through this again. She also decided that she was going back to doing the best she could at being normal. We were scheduled to visit Aunt Annie, and more importantly, little Samantha, in London for Thanksgiving, and come hell or high water, Tales had decided she was going. When the going gets tough, the tough go to Europe!! Now this is a bit more complicated than it sounds. Taylor was smack dab in the middle of a chemo cycle which needed to be administered in a clinical setting by experts. She also needed another CT scan at Anderson to assess the progression of the tumor. And we had no idea how to transport the medicines to London even if we could administer them. Mission Impossible? Oh come now, you know better than that by now! It just took a little creativity from Mom and a little of the arm twisting she has become famous for. We knew we could get the chemo in NY. We also knew we could get Columbia to ask MD Anderson to give same chemo the next day in Houston. The hard part was figuring out how to get it n London. So Sue used leads from Columbia and some information on the best pediatric cancer hospitals in London to find a lovely and incredibly helpful pediatric oncologist at Great Ormond Street Hospital in London. She agreed that if we brought the nausea medicine, (the treatment was still considered experimental in Great Britain), she would arrange to give all the drugs to us. We quickly got our hands on a supply and loaded up on the other meds. So here’s how it went: Monday we got chemo in NY and flew to Houston. Tuesday we got a CT scan and chemo in Houston. Tuesday night we flew to NY and Wednesday morning we had chemo at Columbia again. We then boarded a flight for London, landing on Thanksgiving, and gave Tales a day off. Friday we went to Great Ormond St and got chemo in their clinic. That’s right, chemo in three hospitals in three cities on two continents in one week. Eat your heart out Lance Armstrong. We also got it there every day the following week. In the meantime she played with Samantha, went to the theater and shopped with a vengeance. Maybe the best Thanksgiving ever!

And the tay-bandz thing was still rolling. The holiday boutique fundraiser was another big success with excellent crowds and terrific sales. Tales flitted around with her friends and we saw friends and neighbors we hadn’t seen in a year. The total “raise” was terrific and started the holidays down the right track. Part of what may be a new tradition got started too. The house was under construction and in no shape to host a holiday event, (I won’t get started on the construction thing but we were 4 month into a master bath renovation that, as of the date of this writing is still being finished. That’s right, 13 months and counting. The project kind of grew a bit while I wasn’t looking), and we were looking for a warm and comfortable place to celebrate. You guessed it. We went to back to Sea Island again for Christmas. And we took some friends with us too for distraction and entertainment. Taylor’s friend Jenny and Corey’s friend Julie came along. What good is a family holiday if you have to be stuck with just your own family!! Sometimes you just want to bottle a feeling or freeze the time so a good moment can last forever. We were all together and everyone felt well…especially Tales. Yes she still took mounds of pills to compliment her clinic treatments and yes, the medicines had periodic awful side effects but Taylor looked good and could enjoy the things she loved best. We were even getting the sense that she was hiding a blossoming romance with a boy at school which of course she denied vehemently. That only confirmed it of course! It was truly a Merry Christmas.

Of course nothing stays the same and Tales hasn’t had too many good moments that lasted in the past few years. January 2007 was not a kind month. It began with normal scheduled scans at Columbia on January 3rd. As usual we got a fairly prompt initial read from radiology. By now, however, I had taught myself to read them pretty well myself so I asked for a copy on CD to review while I waited. The preliminary report came back as “stable” and Columbia suggested we just stay the course. I didn’t see it as terribly different but I did ask about a slightly brighter spot in the right abdomen. I was assured that the radiologist reported nothing in the area. They wanted to stay the course.

Stable is an interesting word in the oncology world. It means different things depending on when it is used and it has different emotional baggage depending on who you are. First, it is defined to include anything from “no material change” to a 20% increase in the size of the tumors for an aggressive cancer. Way back in 2003 when we first came to Columbia, part of the reason was Sloan’s acceptance of “stable” as a reasonable outcome of the treatment. That was when we first discovered what “stable” meant. Dr. Garvin pointed out in the radiology report from Sloan back then that the tumors were showing growth not stability but that the growth was less than 20%. It made us angry that anyone would accept a slowly deteriorating situation.

And it is important to know that most oncologists with difficult cases are quite pleased, even celebratory with a result of “stable” if it is a tough case. Over time they lose so many battles and become so wrapped up in statistical outcomes that they lower their expectations or at least manage those expectations for themselves and their patients. It means you are not losing or at least not losing very fast. The medical establishment knows this. We know this. And most importantly, Taylor knows this…and we were hearing that we should accept it and stay with the current treatment. To be fair, sometimes it takes a long time for medicines to work, but we were sensing a shortage of ideas more than a belief that we were on the absolute best combinations of drugs. Taylor was not satisfied and neither were we. We had scheduled a set of identical scans at Anderson for one week later when we booked the scans at Columbia. We wanted to know what they saw and we wanted some fresh ideas.

While we were waiting to go to Houston, two new lives began on January 4th 2007. One was the birth of Aunt Annie’s new little girl Sofia. It should be noted that this immediately jump started Taylor’s mood and also immediately pushed Aunt Annie from a close second to a distant third in the popularity contest. Samantha had clearly taken the 1st spot and now Sofia pushed her further down the list, (sorry Annie, it is after all a pretty high powered list). Then we got the news we had suspected…Taylor announced that she had a boyfriend named Jordan, and thereby a new love story was born. Nothing has been the same since. Mom was happy. Taylor was happy. Ryan and Corey were happy. Dad would need to warm up to this. Nothing a decade or so couldn’t cure! Tales wasn’t sure how much Jordan knew about her past battle with cancer or if he knew anything about this one. She was sure he needed to know before he got himself in too deep but she decided to wait until after scans in Houston to cover the topic. The Jordan tale has many twists and turns but I have to admit that he has accepted and participated in Taylor’s pain, Taylor’s treatment and Taylor’s life in a way that is truly commendable and heartwarming, but more on that later. (No Jordan, that doesn’t mean I’m ready for this yet)

I have to admit that our guard was down when we arrived in Houston. After all, we had just had a scan a week before that was “stable” and I had seen the scan myself. How much bad news could there be? As it turns out, plenty. The scan technology and software at MD Anderson are like nothing we have ever seen. The images are so clear and so anatomically presented that when we show them to surgeons and oncologists at other hospitals they are clearly envious. In fact they are so sensitive that they are hard to compare to scans from other hospitals. As we sat to review the results, Dr. Anderson pointed out a bright spot just where I had seen one on the Columbia scan. Taylor had a tumor growing in the exact spot of an old site on her right Adrenal that had clearly grown right through all the treatment Tales was on. Columbia had failed to note it or even double check when I suggested I could see something myself. We didn’t know whether to cry or scream. Then he continued. There was also a large bright spot at the top of the spine on the right side. It was odd in that is was both large and in an odd spot for MC and a spot where there had been no prior disease. On the other hand, if you remember the story, Taylor’s first and primary tumor was in the spine a little lower down. Anderson suggested that the Adrenal tumor needed surgery and that we needed to show the scan to our orthopedic surgeon, Dr. David Roye, who had done Taylor’s Scoliosis surgery. He was not sure it was cancer but he was sure whatever it was couldn’t be good.

Roye who is one of the true stars of this story is both a gifted and aggressive advocate as a surgeon and is also an incredibly caring and attentive person. He was very concerned and insisted that we see him right away regardless of his surgical schedule. We dropped the scans in his mailbox while he was away for the weekend and he read them Sunday night. Roye was not convinced it was cancer but couldn’t be sure without opening Taylor’s back up again. He was hoping that the finding was a bursa, (a pocket of intense inflammation and fluid build up caused in this case by the friction of Taylor’s scoliosis equipment against the tissue that had been stretched over it after the operation) and that it could be cleaned out and sewed back up. He wanted to do surgery as soon as possible. If it was a bursa, we needed to get it addressed. If it was a new site of disease, we needed to get it our before it could invade the spine.

Taylor has had 15 or so surgeries and surgical procedures. Each one caused us great agony as we decided to put her under yet another knife. Each one meant new risks, new pain, more recoveries, more “parts” removed and more scars on that beautiful little body. But this decision was more agonizing than the others put together. For starters, there was no unanimity among the doctors that we should do surgery at all. Some thought it was cruel to put her through more pain without a certainty that we had the perfect post operative treatment to follow up with since we would almost certainly leave some cancer sites behind. Others pointed out the potential to do so much damage that future steps would be precluded. We had dueling surgical priorities. Did we do the lung first? And which one should we start with, right or left? After all, the most dangerous type of tumor is in the lungs. More concerning still was the question of whether we could find a surgeon who would attempt the surgery and not cost Tales a lobe or an entire lung. A string of surgeons said they couldn’t or wouldn’t attempt to do it. Should we do the adrenal gland first? Address it at all? Did the adrenal matter if we couldn’t address the lung? And what about the spine issue? Could we afford to ignore it for now? And how many surgeries can one kid take? We call her Supergirl but she isn’t made of steel and anyway, every surgery requires that we take her off treatment for some time during surgery and recovery. What if we took her off so long that while we were removing one tumor, she was growing another?

Over the next several weeks we began to reduce the decisions to just one or two. We spoke to well known surgeons in hospitals across the US and even in Europe looking for someone who believed they could get the tumors both live and dead and do it without costing Taylor a lobe or her lung. At this point we got some terrific support from a good friend of mine named Len Girardi who is a world class heart surgeon at NY Presbyterian Weill Cornell. He suggested two things. As much as we saw Tales as a kid, she had an adult body so he pushed us to use an adult thoracic surgeon. Second, we needed more than a gifted tumor surgeon. We needed a world class and experienced thoracic surgical team. He set us up to see his partners at Weill Cornell who were as accomplished as any in the world and he offered to personally look out for Tales in the process. Our Primary surgeon was a talented and aggressive surgeon named Dr. Jeffrey Port who consulted on our case with the head of the Division, Dr. Nasser Altorki. He eventually performed the surgery together with Altorki. It took some time but in the end they agreed that they could get the live tumors out even given their horrible location without costing tales a lobe or a full lung and they would clean out the rest of the old tumor sites while they were at it.

But that wasn’t all we needed. We asked if they could remove the tumor on Taylor’s right adrenal gland in the same surgery and do it without removing the whole gland. With no adrenal tissue at all, Tales would be doomed to a lifetime of supplements and balancing acts to replace the adrenal function. Even a portion of one adrenal gland can make a difference. Again they came back and agreed to the surgery. They would go down through the chest cavity and past the diaphragm to get at the tumor without a second incision. They were convinced that they could save some of the adrenal gland. At this point we asked Roye if he thought he could piggyback on the same surgery and do the spine surgery while Taylor was under anesthetic. Much to our surprise, Roye actually preferred to do it all in one operation. He felt that it was the best patient care he could provide. Only one problem persisted. We needed to get the whole surgical team scheduled on one day at the same time and get surgical privileges for David Roye at Weill Cornell, (Roye works at Columbia and we were having surgery at NY Presbyterian. They may advertise that they are one hospital but don’t kid yourself). Even that seemed to come together pretty fast.

Now we needed to answer one more question. Was Taylor, (and were we), willing to risk this surgery and all its implications and dangers. It all came down to a risk/reward equation. If we did surgery and lost too much lung function, we might not qualify for the future treatments we might need. If we delayed the surgery while we looked for a new magic bullet treatment, the tumors could grow too big to be operated on. Not the kind of decision I would wish on anyone. In the end we went with the surgery and in large part because Tales wanted to get it all out of her body once and for all. She wanted to do the right lung and return to do the left one as soon as she could.

On January 25th, we checked in to NY Presbyterian. Taylor hadn’t been there since she was in the intensive care unit following her Sloan surgery in 2003. It was a little weird. Tales remembered almost nothing due to the huge amounts of narcotics they gave her at the time for pain. WE remembered everything and mostly the pain. The plan was that Port and Altorki would work through the thoracotomy removing the hot lung tumors and anything else they could find starting with the most dangerous and difficult node that had scared off the other surgeons. After that, they would go down through the diaphragm to try to take the tumor off the adrenal and leave enough behind to let Tales live normally. Roye would stand by and when they were done, flip her over to fix her back. A plastic surgeon would stand by to close the wounds.

It always helps to have a famous cardio-thoracic surgeon as a golf buddy so someone can hang around in the operating room looking out for your daughter and bring news to the waiting room. Len was there when we checked in. He was there when they took out the worst of the lung tumors. And he was there when they started on the easy part, (the adrenal). All of which he reported to us while we waited in one of those horrible rooms full of worried relatives. Everything had gone exceptionally well. Len wished us well and headed off to cure his own patients. By the way he was there at the end of the day to check on Tales and he was there every morning and every evening of every day for the duration or the stay. Thanks Len! You da man!!

Too bad the string of good luck ended with that report. Not long after Len left, we had a visit from David Roye. He looked too fresh and he was back way too soon for a debrief of the back portion. He also looked worried. Tales had been closed up and the back operation had been aborted. It seems that when they went to flip Tales they noticed she was developing a rash, her breathing had become short and she was swelling. They immediately recognized anaphylactic shock….about as scary a development as you could imagine for a kid with compromised lungs and one lung that had just been a bit shredded in an operation. Tales was having a huge and dangerous allergic reaction to something and they wanted her on her back, connected to breathing tubes and in the ICU as fast as possible. Roye assured us that they had her stabilized and that she would be OK but we would have to re schedule her back surgery for another day. Port gave us the good news that he had gotten everything that was possible to find and remove. He was upbeat but cautioned that she had experienced significant trauma to her lung suggesting it looked a little like hamburger helper. We were happy to hear the lung had been cleared but we were worried, frustrated and deflated that Tales would go through the whole surgical process again in a separate operation and that she would have to find a way to get back to Columbia to get back on Roye’s schedule. We were also totally spooked by the allergic reaction. Those feelings lasted only as long as it took the anesthesiologists to visit with us. It turns out they had given Tales two large IV doses of an antibiotic she is allergic to…a medicine we had described pre surgery and a medicine noted as prohibited in her chart from her prior admission in 2003!!!! A simple failure to check had cost Tales a dangerous complication, a delay in her surgery and a doubling of the time to get back on treatment. It sent us over the edge and it took us a while to vent enough to feel better. We asked to be transferred to Columbia as soon as possible to distance ourselves and to get back on track with Roye.

We had to fight to get back on Roye’s schedule, (he couldn’t have been more accommodating but he is booked solid for months in advance), and fight to do it soon. We even had to fight to keep from getting cancelled on the day of the rescheduled operation, (if you can believe, another anesthesiologist goofed and misread her vital signs which caused them to scratch us after a day of waiting in pre op). Remember of course that Tales still had chest tubes stuck in her lungs, was on oxygen and was being bombed with pain meds and we were about to do it again!!. Not surprisingly though, Tales wanted the operation more than anyone wanted it for her. Roye took her in and several hours later he reported that he had successfully cleaned out the bursa, confirmed it was not cancerous and supervised the closing of the wound by plastic surgery. Taylor was now officially in surgery recovery mode. Each piece of the plan had ended well and now she needed to fight her way back to robust health. The recovery was heart wrenching though. She had intense pain from multiple surgical sights, tubes in her chest wall, incisions up and down her back, IVs in both arms and multiple monitors attached to her body. When the pain meds were reduced, she had intense searing pain. When the meds were turned up she was miserable at the feeling that she was foggy and losing control over her body.

We often get asked how Taylor is doing. Sometimes the question is specific to her cancer treatment. More often than not, though, the question is about her spirits and her attitude. When people read or hear about all the intentional treatment related pain she has endured, all the missteps she has experienced, all the set backs she has accepted and rebounded from, they can’t believe she can even drag herself out of bed. Then they hear about the terrific grades, the physical strides, the fundraising, the interviews and the determination and they start to believe the “Supergirl” reputation. We probably don’t help it much when we describe what she has absorbed while forging ahead. The truth is Tales has good days and really, really dark, bad days..days when she can’t figure how she will ever live a normal life or ever get a decent break. She can’t believe she hasn’t had a normal kid’s summer in 4 years and is often a little out of step with the social scene at school because she is frequently absent. She aches for the ability to wear clothes without worrying that people will stare at all her scars or go swimming without being horribly self conscious. She wonders if she is ever going to stop feeling nauseous or exhausted or wake up without pain or stop getting poked and prodded and stuck and scanned for new disease. Some days she just cries quietly while we hold her. This is when we are most proud of her. Because when she is at these lows with nothing to look forward to…when she could be forgiven for giving up and feeling sorry for herself, she shows the greatest strength of all. It is then that we remember that she has never asked “why me”? Not once has she whined about her lot in life. Not once has she ever complained that her sisters or friends or relatives have it so much better. It is then that we get the most touching picture of what courage and character look like. We watch while the darkness passes and watch while she picks herself up and we watch while she pulls herself together for another day where she will take what like gives her and go looking for a bit of fun. On second thought, maybe she is “Supergirl”.

The recovery did have some help however. She had plenty of people in her corner cheering her on during visits. Becka, Allie, Jenny, Laura, Anastasia, (her posse), Jordan, (the boyfriend), Jill, Donna, Barbara, Sandy, the Nesi clan, the Klopps, Ryan, Corey, (the sisters), the Ingrassia clan, Sandy and many more that I am forgetting dropped in on her. “Surely”, you might ask, “they visited sequentially over many days?” Well, despite hospital policy, she had so many in her room that we had to leave to make space. One evening five friends, two sisters and Tales watched movies in the room….with 3 ½ of them in the hospital bed!!! Within a week, she had lost the chest tubes, improved her oxygen and was home. She could start to think about resuming some modest activity levels and of course get back to treatment. The incisions were still healing and the scars still very fresh but we needed to find a new way to kill the tumors.

At this point, we were still looking for something with a dramatic effect on the disease. We discussed going back to the original chemo that seemed to work when we first went to Columbia. There is a good reason we didn’t try it right away. We had bombed the cancer into remission in 2004. If the cancer was bouncing back in certain spots, it meant that the cells we were dealing with had likely been resistant to the chemo that seemed to work. We were trying that same chemo now hoping that the real reason was that the cells had been so deep in the tumor that they were not touched by the original chemo. The theory made some sense. Chemo is never counted on to penetrate to the center of large tumors and all the tumors that were springing back to life were the larger ones. We were going back to Topotecan with high hopes that we could repeat the magic of January 2004. What we hadn’t counted on was that the Topotecan even in low dose would make Taylor violently sick and drive her blood counts down hard. It was sad to be watching Tales go through this again even if it was working.

It had been a long time since Tales had been away for just fun so Sue timed the cycle of chemo, blood count rebounds and post surgical doctor check ups. We picked a spot and took off for a few days in Great Exuma, The Bahamas. Even though Tales was doing well and her incisions were clean and healthy, the doctors weren’t thrilled about the Caribbean even though we were only an hour away from Miami.

Among the side effects of chemo is a dramatic slow down in the speed of healing. Worse, the biologic agents that Tales was taking exaggerate the effect. But Tales can be a pretty effective salesman especially with Mom’s back up. We left for the Islands, on February 15th. We had a beautiful room, beautiful weather and the best of Caribbean blue water and sun and…. one more fly in the ointment for a kid who really deserves a break.

About day two of the trip we noticed that one spot the spine scar that had been so beautifully closed over the bursa had developed into a soft circle of white tissue that looked like a cut or scrape after you have been in a pool. By day three as Taylor was dressing for dinner, she came to us swearing that she could hear air coming from her back when she moved. As horrible as is sounds, the soft circle of tissue on the incision had developed a tiny little hole at the center. When Tales moved her arms in a motion like rowing, the air moved in and out of the hole like a bellows. We tried to make jokes and kid around but we were really worried about what was wrong in Taylor’s back, about infection and about the fact that we were on an island with no real medical options. All we could do was ask Tales not to sleep on her back. It’s no surprise that SHE slept fine but we were up all night and we could see the sheets were getting damp from some sort of fluid coming from the hole.

The word we got from clinic was oddly calm. The air and the hole were not concerning by themselves, they explained, and the fluid was natural as was the air. They explained that the air was merely from the chest cavity, not the lungs. The reason for the hole was concerning of course but there was little to be done until we could see the surgical team. Believe it or not they told us to keep the hole clean and cover it with gauze until we could get home. They didn’t even ask us to come home early!!! Part of that was out of a concern for ruining the trip, part was because by itself it wasn’t an imminent threat, (actually she was better off from an infection stand point with the air getting in and out), and part was the fact, unbeknownst to us, that this needed a much bigger fix than we had any conception of. So we finished a lovely few days and headed home to find out what new turn we’d be taking.

By the time we got back home, the hole was significantly bigger and there was a second hole lower down on the scar, as well as another soft spot. As soon as we could get back to Clinic and get a few minutes with the plastic surgeon we booked a time. The surgeon, in short order began to paint a bit of an ugly picture. It seems that when she was closing Taylor’s spinal incision, it was obvious to her that we had lost a lot of soft tissue, both from this most recent back surgery and because this area was part of the area of the original operation to remove the main tumor.. She had believed she could just stitch the para spinal muscles and surface tissues over the space and it would hold. Picture stretching Saran Wrap over a tea cup. There was nothing left in the space and we were just trying to close the incision. Obviously there was not enough strong tissue and Taylor’s legendary healing speed was now a lot slower. The result was that the scar was reopening and leaving holes that were open to the empty space where the normal structures would be. Worse, there was no option to just go back in and close it. First, she explained, it wouldn’t hold the second time either. Second, she explained was the almost certain infection that would result if we artificially closed the space in and left the bacteria inside that had entered the body. We had two options: let it close naturally with some VERY intense care of the holes, or schedule another full surgery that would require moving around all the muscle and tissue in the back to fill in the area. The most prudent thing, she said, would be to try to encourage it to close by itself.

So let’s understand what this little development would mean. Every day, at least twice a day we would need to “pack” the holes with sterile gauze dipped in sterile saline solution. “Packing” sounds so innocuous doesn’t it? Well, the process is to cut long strips of gauze and dip it in saline. Then, with the stick end of a very long hospital Q-tip, we would tuck, poke and stuff the long strip, (this could be up to a foot), of gauze into each hole until the space on the inside was stuffed with gauze. This, we hoped, would absorb the fluid and help prevent infection. If we succeeded, the body would fight the bacteria and over time the holes would naturally scar over. If not, Tales was looking at more surgery. At first we thought it was working but to our disappointment, the holes didn’t get any smaller and we felt as though they might even be getting bigger. For now the plastics doctor told us to just keep trying. We did, but at this point we were trying to get her back surgery to heal, her chemo treatments in and a combination of new and exciting biologic drugs. We were working on good ideas but they were somewhat at crossed purposes.

While dealing with that issue, we found another. Late one night we realized that Taylor had a fever. Fevers are a big deal for any parent. Fevers for parents with a chemo kid are pretty scary as often they have compromised immune systems. Fevers for parents of chemo kids with open wounds require immediate trips to the emergency room. They took cultures of her blood to try to identify the source of the infection and started her on IV antibiotics. While she was there, they also took X-rays of her chest. The infection would turn out to resolve fairly quickly. However, the Xray showed substantial build up of fluid in the chest cavity of Taylor’s right lung. Not only is fluid a very possible site for infection but any space occupied by fluid cuts the efficiency of the lung and reduces the capacity of the lung. Tales still hadn’t returned to normal breathing since the lung operation. She certainly didn’t need additional restrictions. We spoke with the thoracic surgeon about draining the fluid with a tube inserted into the chest wall. With the caveat that the fluid might return, he was supportive. We spoke to Garvin about draining it and he was supportive and agreed to speak to interventional radiology about the procedure. They asked to think about it and then went radio silent. We wouldn’t hear back for many days.

By this point, it was time for another trip to MD Anderson for scans and consultation. By the time we got there, Tales was in tough shape mentally and physically. The holes were clearly growing and the packing was endless…twice a day, and after every shower or any time she soaked through the bandages. In addition, the drugs she was on in combination caused a common but brutal reaction. Taylor was getting horrible burns on the underside of her hands and fingers. She was also getting them on the underside of her feet. They resembled chemical burns and they were so severe that she couldn’t hold a cup properly and she had to move through the hospital in Houston in a wheel chair. She had experienced these before from certain chemo but never anything this bad. She was tired, exasperated, and suffering….a pretty sad sight. The scans were about what you would expect. They showed significant trauma from all of the surgery and a very compromised right lung but they also showed that we had gotten all of the live and dormant tumors out of the right lung and from the adrenal. Everything else seemed stable, (there was that word again), but since Tales had been off almost all of her treatment for a couple of weeks before and after all her surgeries, we weren’t expecting much progress. We also saw the fluid pockets that were much more evident on the CT scans than they were on the X-ray. Pete Anderson enthusiastically urged draining the fluid for both infection prevention purposes and lung capacity purposes. He actually suggested doing it sooner versus later as he was concerned the fluid could start to thicken and coagulate making removal exceptionally hard. He was also concerned the fluid could be cancer related.

However, it was actually the consult that followed the scan review that spooked us. MD Anderson has a strong philosophy of multidisciplinary medicine. They like you to be treated right from the start by a team from every discipline that works on all of the issues and creates a collaborative plan. Pete Anderson asked us to see the plastic surgery group immediately after seeing Taylor’s back. He was very concerned about the appearance and implications. They were nice enough to see Tales right away and we figured another opinion is always good so we agreed. What we heard from them jolted us.

We were seen by two partners in the pediatric plastic surgery group. They reviewed the scans and carefully examined Tales including removing the packing and looking down into the holes. With a small flashlight, they were able to see the rods from Taylor’s scoliosis operation and even scarier, they could see her spine!! They were emphatic that the time had long passed for waiting for the holes to close. They believed that the chance for serious infection including a life threatening bone infection were very high and that the incision needed to be re opened along the entire length of the hole, (about 3 ½ to 4 inches), immediately. From that point, they explained, we could try a new technique involving a portable vacuum device that would try to pull the wound together over several weeks or months or we could do a big surgery called a “muscle flap” that would attempt to use muscle and tissue from another part of the back to cover and close the wound. He was pushing hard for the vacuum because the felt the muscle flap might be a sort of final option that, in the event of failure to create a lasting closure, could leave us with very few options. When Taylor tried to object to the idea, the senior surgeon looked her right in the eye and told her she was risking her life. Now, we don’t go for brow beating Tales and we certainly don’t ever scare her into treatment options so we were not amused, but we looked at him and we could tell he was absolutely sincere. He offered to do the surgery but preferred that we return to NY and have it done by the original surgeon. He even offered to call her…and then did, right in front of us. He was every bit as firm with her as he had been with us. We returned to NY with an appointment for the very next day. By the time we got there, our plastic surgeon had adopted the same sense of urgency we saw in Houston, She desperately wanted to open the wound all the way and wanted to apply the vacuum immediately post surgery to attempt to get it to close “naturally”. She was equally concerned about the consequences of failing to get closure a second time and was pushing hard on the vacuum idea. We asked when she wanted to do the surgery and she surprised us by asking us to get admitted and do it immediately!!! After a short family caucus we agreed and by the end of the day, Taylor was headed for yet another surgery.

In terms of what Tales has endured in the past, this was fairly modest. The procedure would open the wound the entire length of the big cavity in her back…kind of “connect the dots” by this point as she had several holes along the scar. They would then clean out the cavity, removing any dead or unhealthy tissue and rinse it thoroughly with antibiotic saline. This would leave a wound that was about 4 inches long, 2 inches wide an inch or so deep…kind of a “V” shaped wound that at the bottom showed her vertebrae and her scoliosis rods. Next they would cut a special thick sponge to fit the space but slightly larger than the wound and pack it into place inside the wound. They would then cover the wound in plastic leaving a hole. The hole would be covered by a suction pad that was attached by a tube to a generator/suction device. When turned on it would create a vacuum that would pull the wound closer together and, if it worked, dramatically accelerate the healing while lowering the chance for infection. The technique has been working miracles for surgeons and has gained lots of supporters in the last few years. The funny thing is they don’t know why it works. They have some theories of course, but mostly they do it because it often works. Oh yeah, one more thing. For this process to be viable, the procedure of removing the bandages and sponge and replacing it just as the surgeons had done would need to be re-done one to two times per day at home by Sue and by me. That’s right…daily removals of the bandage exposing a large deep open wound down to the spine, cleaning of the wound, and prep/application of the sponge and vacuum seal. If you want to know why this Dad is warming to this boyfriend, (or any boyfriend for that matter) consider that Jordan would frequently come over and hold Taylor’s hand while we did the change and even volunteered to help. It was a little horrifying for a parent to look at let alone a 17 year old boy. Once again, Tales accepted the news but knew it would cut her off from a normal social life and cause stares if she went out in public.

This period was particularly hard for Tales. She walked around with this thing on her back and the tube running out of her shirt to an odd looking back pack that sounded like a compressor and made beeping noises as it lost and regained pressure. It was painfully obvious and caused stares everywhere she went. She desperately wanted to be out with her friends but not only had this contraption to worry about, she also fatigued quickly so she couldn’t keep up when they walked around with them.. Her friends didn’t mind her contraption and couldn’t understand why she wouldn’t go out with them but Tales was mortified and just wanted them to visit with her. She was alone a lot and Tales is NEVER alone. While she seemed to be stand offish, she was terribly lonely.

Part of any plan to build Taylor’s spirits starts with Sammy, Sofia, Aunt Annie and Billy Boy, (this of course is Aunt Annie’s husband who was saddled by Sue with this demeaning nom de guerre while they were still dating. It takes a big man to settle in to such a name…or at least one with a sense of humor), so we had planned a trip to London. Yes, we were going with the contraption and all the supplies!! That seemed fine until we figured out that the battery pack might not make it all the way to London between the flight and the luggage and the airport delays. It was explained to us that the machine could not be turned off for more than two hours before she was at serious risk for losing the benefit and, more importantly, of getting a serious infection. We addressed that by arranging to use an adaptor on the plane. More worrisome was the need to use an electric power adaptor for the unit while in London. If you’ve ever burned out a hair dryer or electric appliance while using a converter, you can imagine our concern. Tales was now too scared to go and REALLY in the dumps. (By the way, in case you haven’t guessed, when Tales is “up” every body is up but when Tales is down, the whole family tends to crater. You might recall that the song written for Taylor that you can play on the web site has a refrain, “Everything’s OK when I’m with Tay”). Sooo I looked up the web site for the company that makes the Vac. It turns out that this company has a monopoly on the market for these Vacs and that you cannot buy them. You can only rent them. However, they are a global company and they have a London location. The Brits were only too happy to rent us another unit built for the UK for just the few days we would be in London and deliver it right to Aunt Annie’s flat!!! The trip was back on, Tales was thrilled and I was a hero to my daughter for a full 90 minutes or so. (We are, after all, talking about a teenage girl.)

Unfortunately, the plans were short lived. Many of you know that Sue’s mother, Rita, had been struggling with emphysema for several years. By now she was sick enough to be largely home bound. As April was getting started, it was clear that she was fading quickly and Annie and Bill decided to visit us in NY instead of bringing us to London. The visit turned out to be several weeks which was a blessing for our household but a true time of sadness for the family. After slipping badly for a number of days, Rita died peacefully, surrounded by her husband, son and three daughters. Rita was a character her whole life. She was born on April Fool’s day. She died on Friday the 13th. And her wake was scheduled for the exact moment of the worst storm in the Northeast in 50 years. Sue of course was devastated. There was enough pain and suffering in our house to more than go around. This one took everyone over the edge. The body blows seemed to just keep coming. Tales seemed to take it pretty well at first but of course it was just Taylor’s way of trying to be stoic and brave. Tales wrote and spoke a beautiful eulogy about her Nana at the funeral mass. The loss haunted her and made her think about her own mortality. Even months later, Tales has trouble dealing with the loss and feels a little more alone.

Meanwhile Tales had her normal issues to deal with. The fluid was sill occupying valuable space in the lung cavity and restricting recovery. We kept pushing for Interventional Radiology to drain it but we weren’t getting a response. (In retrospect it is entirely possible that the IR guys were convinced that it was a painful waste of time to do more to Tales given what Taylor had been through and the recurrences she had had. If you just read the medical file and don’t meet Tales, you can easily make a poor assumption of her over all health and strength.). The surgeon who did the thoracotomy supported draining her to free up lung capacity and to lower the chance of infection. Still no answer. In addition we were continuing the “Vac” treatment and we could clearly see improvement but the wound was so big that it was obviously going to take much longer to close than expected. That was a very concerning fact. Ever since Taylor’s thoracotomy at Weill Cornell, we had been in touch with the plastic surgeon that had closed her thoracotomy, a very highly regarded surgeon named Spector. He was a fan of the Vac approach but had never believed it would be the solution for fully closing the wound. Actually, he had been saying all along that he thought we should close the wound with a “musle flap” procedure and he was totally unconcerned about the risk or difficulty of the surgery that seemed to worry the other plastic surgeons. He also thought that we were leaving the Vac on for way too long and that even with the Vac, infection was looming as at large as the weeks rolled on. He suggested we do the muscle flap and the lung drainage in the same operation and offered to coordinate all the surgeons. Tales liked his confidence and aggressive approach and pushed us to set her up for more surgery. We decided to proceed with him and went home to begin planning for a May 1st Surgery.

By April 26th, the decision seemed to be taken from our hands. That night, Tales developed another fever and we rushed her to the Columbia emergency room. This fever was even worse than the last. Remember that Tales now had a four inch wound that exposed her back all the way to the spine. An infection now could actually get in to the bone which is a very serious and hard to treat infection. We also knew that there was a reasonable chance the fluid in Taylor’s lungs could be the source of the infection. The Columbia emergency room is like that in most inner city hospitals…jammed full of true emergencies, oddball needs that can only be addressed in the ER in the after hours periods and often full of the underprivileged/uninsured who treat the ER as their primary care alternative. This night was as bad as any which meant waiting in a room of very sick people with a child who had a compromised immune system, a fever and an open wound. Not only could we not find a safe place to hide, we couldn’t seem to get any understanding of the unique circumstance. After some rather ugly conversations with the staff and an incredibly long wait we were able to finally get an x-ray to check the fluid and some blood draws to check for how far the infection had spread as well as what the organism was. The only good news we could find was that we figured they HAD to drain her lungs now….didn’t they? Well, you guessed it, the Interventional Radiologist was STILL refusing to drain Tales. Basically, we think, Tales scared them and they thought we were over treating a kid who was past helping since they had never met her and were working from her charts.

I got a call from Sue at Emergency. She was crying, Tales was crying and the staff was offering no solution, no answers and worst of all…no bed. They were full in pediatrics and were telling them to settle in to stay in the emergency room with the crowd of sick people. When Sue had demanded that we be given a room or she would take Taylor home to wait, they had threatened to call security and physically restrain them both.!! Impossible to believe right? Well actually, in NYS after you have admitted a child, you can be prevented from removing them if the hospital thinks you should stay.!! I was furious and horrified and I turned to a familiar source of counsel.

As far back as our first days at Sloan Kettering, Len Girardi had been offering help and advice. He kept telling us to call if we ever needed anything at all and of course we kept calling. The man is a glutton for punishment. I called Len at home and asked if he could help get Tales a bed at Weill Cornell. He didn’t hesitate for a second. Len suggested we check ourselves out and drive immediately to Weill Cornell while he worked on a bed. When we told him we were being prohibited from leaving, he attempted to work it out with the ER doctor. To our shock and his shock, The ER doc refused. Not to be denied, Len arranged for an ambulance transfer to Weill Cornell. Next up was finding a bed. He didn’t want us in ER at Cornell either and it was way to late to find an admitting doctor in pediatrics. Instead, Len arranged for us to be admitted to his unit in Cardiac Intensive Care. Yep in a matter of an hour or so we were being sent to the most attentive and high powered care we had ever seen and were under direct care of Len’s team. We had IV antibiotics, a private room and around the clock attention. Tales felt totally comfortable and frankly it put everyone at ease. By early the next morning, Len had us scheduled with Cornell Interventional Radiology who immediately drained Taylor’s lung and inserted a tube to allow it to continue draining for a few days. Spector visited us the same morning and urged us to recover in the Cardiac Unit for a day or so and then he would do the muscle flap surgery to close the wound so we didn’t have to come back. On May 1st, 2007 as scheduled, Tales went back in to the operating room yet again. This time they would pull back the surface tissue from the back, pull the muscle tissue from the left side of her back over to the right side and stitch the various layers of tissue on at a time over the old space and then knit the muscles together and finally stick and staple the skin back together…with a little luck for good this time.

Tales had to stay in the hospital for longer than we had hoped. The medical team was very concerned about the healing process and the infection Taylor had developed from the time she spent with an open wound. The tests had come back showing that not only did she have a very severe and difficult to treat infection but it had gone to the single worst spot of all. The infection was now in the bone which can result in life threatening conditions. She was put on a combination of very potent IV and oral antibiotics and set up for frequent testing of the infection level. Though Tales left Cornell on May 5th, she remains on high does antibiotics to fight the infection even as I write this in September of 2007.

This time we were taking no chances. Tales was heavily restricted from any kind of exertion and prohibited from sleeping on her back. She left the hospital with two open drains inserted in her back to remove any fluid that might accumulate under the skin in the reconstructed area. These are tubes that go under the skin and terminate deep in the tissue under the surgical spots. The tubes were connected to suction to ensure a dry wound. The first tube was removed one week later. The second was removed two weeks later. May 20th was the first day Tales was disconnected from surgical tubing since March. She could actually wear normal clothes and resume some social activity. Better yet, the procedure seemed to be a success.

Only one more step needed to be completed. The drain holes were not closing. Despite taking Tales off treatment, and despite what looked like good healing around the surgical site, Tales had holes in her skin that went down into her back. These weren’t as deep as the ones we developed before and they didn’t terminate in a big cavity like before, but they caused the surgeon real concern. If they got infected or couldn’t close on their own, we might be back to square one. When we heard the solution from Spector, we could only shake our heads. We were going to have to pack the holes again just as we had before and wait for the body to do its job. We had turned the pages on June of 2007 before the holes were closed and Tales could take a swim or shower like a normal kid. As we prepared to resume treatment and ease Tales back into some activity, she wrote off another summer of her youth. There would be no camps or tours or true summer vacations for Supergirl. We would have to make up some fun.

Despite what should have seemed as a doomed goal, we booked another London trip to see the Cohane clan, (Aunt Annie, Uncle Bill, Samantha and Sofia) for a week in the summer. We had no real plan for London. Ryan would be working at her first job. Corey would be at camp. And the three of us would have a British holiday. Tales also was contacted by the Make A Wish Foundation for Westchester. It seems they had all new management since the bungled efforts to build Tales a tree house way back in 2004. Now they wanted Tales to dream about something special that would make her feel like she was getting a prize. The answer shocked us but was typical Tales stuff. A few weeks before Taylor had been discussing how horrible it was that her boyfriend Jordan and dear friend Sandy had never been to Disney World. To her amazement, two other very good friends announced that they hadn’t been either. Now Taylor was going to right that wrong for her true friends and return to a scene that represented some of her best memories of childhood…Disney. And this would not be a small event with 2 or 3 friends. No, this would be Tales, six teenage friends, 2 teenage sisters and one very wary set of parents all trooping through Disney for six days in the heat of August. Taylor’s dream, or our nightmare???

June finished with a bang. Ryan had her Senior Prom. Corey’s birthday and Ryan’s High School graduation were on the same day. Sue celebrated her 29th birthday (for the 18th time) and Corey’s 13th birthday party included a luxury bus and a trip to Jeckle and Hyde for dinner in the city. Then off to Philadelphia for my parent’s anniversary and drop off day at camp for Corey. All went off without a hitch. But of course that would be too easy. On June 25th, (three days before our trip to London) an odd discovery was made in Taylor’s blood work. She surprisingly failed to qualify for chemo because she had almost no white blood count, (neutropenic), and her measure of the infection, (her CRP), was rising for the first time since surgery. Tales returned home without treatment and we began to assess whether we could prudently take her on a plane and how to explain the CRP. As we were debating the right move, the phone rang with another surprise. The blood work showed that not only did Tales have no immune system, but she had the added complication of MONONUCLEOSIS!!! Tales was going nowhere. London was off and we were having one more “can you believe this” moment. BUT not only was June not over yet, June 25th was not over yet. What more could go wrong you ask? Well it turns out that while we were in clinic with Tales; Ryan was at the doctor’s office as well since she wasn’t feeling well either. YEP! Ryan had Mono too!! You can’t make stuff like this up. If you didn’t laugh, you would cry. And we found out later that Sue got Mono too.

As July began, we had some unfinished business to attend to for Tales. After the last surgery, Taylor was being monitored for improvements in her lung capacity. There had been some real damage done to the right lung and a long period of inactivity. We needed to know what room we had left to deal with the remaining live tumors in the left lung. But as we watched her we noticed that she seemed to be having more trouble breathing, not less. She tired quickly and she lost her breath easily. Tales was used to bouncing back quickly and beating all expectations and this had her and had us spooked. To be fair, she had not exercised in a long time and she was on chemo which produces fatigue and low blood counts. But something seemed strange so we had an X-ray at Columbia to get a look at the lungs. You guessed it. The fluid was building again on the right side. We didn’t know how much is was hurting but we did know it wasn’t helping. It was time for a trip to MD Anderson again anyway and Pete Anderson was anxious about the fluid and the possible implications as well as anxious to get a new set of scans to assess the disease in the left lung. He was talking about draining the lung again and he had some ideas of how to make sure it didn’t come back.

We scheduled the scans, the potential hospital stay for drainage, and the chemo cycle to allow Tales to recover in time for her big August Make a Wish to Disney. Sure enough the scans showed fluid in the cavity of the right lung and the same persistent “hot” tumors in the left. There was a complication with the fluid this time however. It seemed to have thickened after sitting in there so long. That would make the process a little more involved. After a review of possible next steps for chemo, biological and radiation methods, we agreed to stay for a few days to have the lung drained in Houston.

Pete had two ideas to apply to the drainage procedure. We would have the IR guys put the tube in to drain whatever they could. Then, they would use the tube to inject a kind of solvent back up the tube into the cavity that breaks down proteins and would help to liquefy the fluid, (very little came out of the tube naturally as it had taken on the consistency of a thick oil), to try to allow more to drain. This worked pretty well and together with some manual suction provided by a large hypodermic needle over a day or so got most of the sludge out. It was no fun for Tales but she was anxious to get some breathing relief. The next step was really unfortunate for Tales. One of the possible explanations for the fluid was cancer cells in the lung cavity. Another was just inflammation of the tissue lining the cavity together with nature’s natural need to fill a void. To address both possibilities, Anderson injected a very harsh chemo back up the tube into the cavity to fill the space and left it there for some time before sucking it back out with the needle. If there were cancer cells in the area, it was hoped the chemo would kill them. If it was merely persistent inflammation of the cells, the chemo should scar the inside of the cavity preventing the creation of the fluid by the tissue of the chest lining. As it turned out their were no cancer cells present. This part was really unpleasant for two reasons. First the process of injecting it together with the physical manipulation of the suction was really unpleasant. Picture a full grown man apply the force of a bicycle pump only pushing and pulling the plunger over and over to send the fluid and air in and out of the chest cavity. Second, her body absorbed a fair amount of the chemo through the chest wall, (far more than we expected), which gave her the horror show of the original high dose chemo she was on in ’03 and ’04. It was heart breaking to watch her suffer through those side effects again for days. She believed she would never have to experience that again and we had led her to believe she never would even with this procedure. We were wrong and she was really pissed at everybody. Note to file, be very careful what you tell Tales. She has what seems like a limitless tolerance for suffering but almost none for being misled. We brought home a sick and dispirited kid but we were convinced we had a chance to get her lung to fill the now vacant space and give her back some real breathing capacity.

Now we turned all our attention to breathing exercises and plans for Disney. Hard as it was to believe, the summer was already winding down a bit. August was upon us and the fun hadn’t really started. Tales and her friends were looking forward to that first minute of the trip. We were looking forward to the last!! We arrived in Disney on August 4th and made it to the parks the same day. We made quite the picture. 7 teenage friends (including two boys), 2 teenage sisters, plus Tales with two overheated, stressed out parents repeatedly counting heads, coordinating meeting times, handing out water bottles, and issuing/collecting park passes while finding restaurants for parties of 12 left the hotel each day at the crack of noon. We were after all on teenage time. Oh yeah, and it was 98 degrees every day with 90% humidity!! If it hadn’t been for the special passes Tales was given so she could cut the lines, we might have left a trail of passed out adults along Main St USA!! Frankly, we had a blast just watching them. Over the course of 5 days they hit every theme park, pool and water park you can imagine. Every night was a giant sleep over. We had three kid’s rooms and one for the old fogies. There were two connecting rooms of girlfriends and one non connecting room containing Ryan, Corey and the two boys on the grounds that Ryan and Corey were OK mixing in. Every flavor of giggling, screaming and endless drama were observed and they managed to keep each other up to the wee hours every night. The trip was full of fun and memories for Tales, for us and for her friends but PLEASE don’t refer to it as vacation.

As soon as we had returned home from Disney, we immediately jumped right in to full fledge panic to get Ryan ready to leave for her freshman year at Wake Forest. Sue had been preparing for months but somehow, there were mountains of last minute stuff to buy, forms to fill out and decisions to make. Tales enjoyed the preparations and showed a sincere and touching sadness that we hadn’t expected to be losing daily contact with her sister. In week three of August, we all trooped to Winston Salem together to take Ryan to college and to get her settled. Despite a few tears, we all had a blast. Interestingly Tales showed real interest all of a sudden in discussing her college options for the first time. Just what we needed… Tales in intense decision making mode regarding schools when she is only a junior!! And finally, to have a piece of a real vacation, as we left Wake we headed once more for three days in the ultimate comfort spot for Matthews family vacations-Sea Island.

And that brings us back to the present. Corey and Ryan are trying to start the school year with a sense of normalcy. It is easy to forget that they share the burden, fears, stress and dislocation that come with the tragic turns that Taylor has endured. They haven’t had a normal school year or school experience or family life in over four years either. We’re proud of what they have coped with and overcome and we revel in every day that goes well with their academic lives as well as their social lives. All of them have proved that there is no such thing as too many clothes, too many shoes, too many I-Tunes, or enough text and cell minutes in our calling plan. Tales is in school full time for the first time in ages. She was accepted into the Alternative School at Edgemont High School which allows students to learn independently and develop independence in life and education. She loves it! Clinic visits, scan days, treatment programs, physical therapy, medication and needles still rob her of childhood days, school attendance and fun with her friends on a regular basis but Taylor is back in the game and playing it with the determination and focus that has always been her trademark.

So how is Taylor? That is a very complicated question. When we started this site, we did so to help our friends and family keep up with Tales and participate in her recovery even when they couldn’t visit or call or check in. We knew we couldn’t answer every call and email and we knew we couldn’t bear to tell the story over and over again. We were also writing about a little girl who sometimes read the postings and whose friends often read them as well. It was meant to be accurate and realistic but also optimistic and hopeful. We tried to find the positive in every new turn of events. Early on we thought we understood more than we did. It is possible we still think we know more than we do. But we could never have imagined that we would be writing 41/2 years later or that we would have so much heartache and suffering to relate. Taylor is not a little girl anymore. She is a beautiful, caring, bright and blossoming young woman. She understands far more about her illness and her ongoing recovery today and so do her friends. She reads the research and statistics and the medical reports along with us. She also can read her scans. She knows her disease can be a killer and that some along the way have counted her out. She knows that there is almost no primary research directed at curing her disease and that the only chance for a cure is grass roots fund raising like tay-bandz. She is painfully aware of what she has lost, the price she has paid and what she has left to do if she is to declare victory again. And she is painfully aware that many of her fellow warriors from clinic have fallen before they could experience freedom from disease and pain. And so this is how Taylor is…

Taylor has cancer. She has had it for a very long time. It is likely she will have the remnants of it for the rest of her life. Only a few of the tumors are active and threatening but she must kill them and remove them to regain control. There are a bunch of other tumors that are scarred and calcified and are either dormant or dead. They must be kept from re-growing. She may be in some sort of treatment for many years to come. She remains under treatment using a combination of 7 different agents and 20 pills per day, many of which were never intended for her disease or extensively tested in kids as a single agent let alone in combination. Two of the agents are chemotherapy drugs of which one is infused into her every few weeks causing nauseas, fatigue, and low blood counts. She still makes lots of trips each month to the Columbia’s clinic and widely dispersed other hospitals like MD Anderson to be treated, tested, and evaluated and she is scanned every few months for evidence of progress or deterioration. Her treatments change as often as we feel they are losing effectiveness or we find a new novel idea. She started a brand new one in August and we feel very good about it. She also struggles mightily to be normal and yet is keenly aware that she is not. She is an incredibly resilient child but she is a little worn down and often gets pretty low. She feels like one of the gang at times but rarely feels the connection she craves. There are days she wants to stay in bed all day with the shades drawn. She sleeps poorly and has pain on a constant basis. Her body is covered in scars from the small and easily hidden punctures of the chest tubes to the long, thick and hideous scars from the thoracotomies and back reconstruction. She is missing a lot of body parts. There are more scars on her psyche than there are on her body.

And yet Taylor is not a cancer kid. She is a kid who has cancer. She has never stopped living, exploring, learning, laughing or making all of us laugh. She looks fabulous in clothes and is more beautiful today than she was in May of 2003. When she is with her sisters, people often have to ask which one is sick. She has a boyfriend who dotes on her and puts up with too much abuse,(yes, Jordan, I said something nice but don’t get used to it). She has developed an incredible natural talent for painting. She is getting excellent grades in school and acing her Regents exams. Next month she will drive legally, (Mom has been a little permissive so if you see her behind a wheel before Nov 1st, get out of the way!), and she has her eye on a car to tool around in. In addition to all of the school work, doctor visits and physical therapy, she is studying hard for the SATs and has picked out an initial list of colleges to apply to. I’ve tried to manage her expectations but frankly I stopped betting against her a long time ago. She still has a competitive streak with others and with herself right down to tracking her breathing performance against old results. She still follows the fundraising for tay-bandz like a hawk and speaks about reaching her pledge to Columbia early and helping other hospitals too. She is still doing interviews and raising awareness of pediatric cancer needs. Through it all, she has NEVER ONCE backed away from the challenges or the surgeries or the treatments or the experiments or the pain or the embarrassment or the loneliness. She has her down days but she has far more good ones and nothing is more fun than seeing her all wound up and laughing. Everything really IS OK when you’re with Tay. Every day she moves one more day closer to complete recovery. Today is day 1570 of Taylor’s recovery

Oh, and one other thing. Whatever your political affiliation, you will recall that Hillary Clinton wrote a book called, “It takes a village”. Well Taylor didn’t get to this point on her own. She got here on the shoulders of a support network that still amazes us…friends, family, teachers, Superintendents, coaches, doctors, nurses, therapists and sometimes total strangers. It was that network that carried Tales through the tough times. It was that network that she missed so horribly while she was trying to keep her relapse a secret. It is that network that we hope will spring back to life now that she is opening up about it again. Every note, every text, every gesture that recognizes her strength of character and determination and demonstrates that people still care is enough fuel to run on for another week. She needs her friends more than anything any doctor can give and she needs a little help getting back in swing. For those of you who have stuck by us, stayed in touch even though we weren’t always responsive, and checked this site for 19 months looking for an update, we are indebted to you in a way you can’t possibly understand. As many of you know, Sue rarely answers the phone and no one answers the house phone but thank you for understanding and for keeping on calling. For however many people are left reading this site, Thank you and welcome back to our story. Please tell anyone that you feel would like to know to pop onto the site and get an update. I promise to keep it up!