All of 2003...
| Date: December 25, 2003 - 11:00 PM
Journal: Well the little cloud that follows us reared its ugly head again but we just put up umbrellas. Tales finished chemo on Tuesday. She had visits from Nana and Pop Pop Matthews, the Puhala girls and cousin Jenny. By 6:00 oclock she was home and resting. The nausea and vomiting were still a problem but every hour it got more manageable. But...just when you thought it was safe to go back in the water...Tales' cousin Sara came down with a flu bug which killed our traditional extended family Christmas Eve celebration. Taylor is about to go neutropenic and can't be near any germs. So, we made lemons from lemonade and we celebrated Christmas together in different places! That's what speakerphones are for. Aunt lynn sent half the food to our house and kept half there. The DelDuca, Cohane and Matthews families were in Scarsdale and the Ingrassia clan was in Rye but we were together in spirit. Tales was OK on the 24th but felt much better on Christmas day. As a matter of fact it was one of the best Christmas celebrations ever. Times like these tend to focus you on different priorities. We were together, and we had alot to be thankful for. That was the best present of all. Tales beamed. As for presents, all the kids did well but to make sure we didn't miss any opportunities for calamity Taylor got Air Kicks, (spring loaded boots) which let her leap tall buildings at a single bound. It's not the bounding I'm worried about, it's the landing. To all of the friends and family who make sure that Taylor and the Matthews family feel loved and cared for, you can't possibly know the good you do. We send our best for a warm and happy holiday season to you and your families. |
| Date: December 20, 2003 - 11:00 PM
Journal: Surprise, surprise! Tales got chemo as hoped. Credit Sue's tenacity as well as Taylor's. They don't like to do it off schedule. This is a five day regimen and the clinic is not open on the weekends so Tales was admitted friday afternoon. She feels really bad in the afternoon and evening but somewhat better the next morning until the chemo starts again. She's in 921a. She'll stay in the hospital unil Sunday evening and then come home and do the last two days in clinic Monday and Tuesday. On Christmas Eve she'll disconnect from the IV and have a real family Christmas with Christmas Eve at the Ingrassia Compound and Christmas day at home. Meanwhile, Tales has plans. She did a little Christmas shopping for herself...a snow board and boots!! She got pretty good after two lessons last year and intends to be on the slopes this winter, (I haven't recovered from last year yet). I'm not sure the doctors will like this but she isn't planning on asking for permission!! Ya just gotta smile at this kid's determination. |
| Date: December 16, 2003 - 10:00 PM
Journal: Well, this week started with more disappointment. Tales went in Monday for blood work to get chemo. Her white count had soared and so had her hemoglobin just like normal. But for some inexplicable reason, Taylor's platelets had dropped like a rock. They were too low to get a treatment epsecially since we were repeating the treatment. So Tales went home pretty depressed..partially because it puts Christmas at risk and partially because she takes great pride in the strength of her mind and body. It's called delayed toxicity. It happens sometimes when you've had as much chemo as Tales has had. Mom came up with a plan though. We're checking the numbers locally at White Plains and when she hits the magic number, we're hoping to drive straight to Sloan to get the treatment mid week so she recovers for Christmas. Mom is determined. That's where Taylor gets it. She failed with a count of 27,000 on Monday and went home to rest and eat. Today she spiked to 42,000. She needs 75,000 to qualify and we are targeting Thursday. Anyone want to bet against her? Meanwhile, we had another request from PCF. It seems people have been putting in lots of calls to Nancy Joselson for information on getting pages in the Annual Journal honoring Tales. Nancy is away on vacation and concerned about failing to return calls. Nancy advises that the best way is to go to the PCF website and pull down the info. The site is HTTP://www.pcfweb.org. They are posting a piece on Tales as well. |
| Date: December 10, 2003 - 10:00 PM
Journal: "The best laid plans of mice and men often go awry". Taylor missed her blood numbers for chemo for the first time ever. She was pretty upset Monday because she had psyched herself up and because getting the chemo this week would mean she was in good shape for Christmas. Her immunde system was just a little worn down. Unless she started by Tuesday, this chemo would make her neutropenic for Christmas. After a few tears she went straight to the accupuncturist. He gave her a treatment designed to raise the immune system. Tuesday she tried again. The white cells soared but the platelets just missed. Just when it seemed a little dark for Christmas, the doctors offered to swap this chemo for the next one and do it next week. She'll be pretty sick next week but should recover in time for Christmas. There always seems to be a way. Tales is making the most out of the week at home with Sue. She went to art class, (you can't believe what this kid is producing with only a few lessons), worked with her school tutors, got a surprise visit from my sister Lois from Philadelphia, and started viewing some old comedy videos that my parents sent. Laughter is the best medicine you know. She even got two personal snowmen made for her by Corey and Maria,(one of our babysitters) and put outside the window where she can see them form her favorite chair. But the biggest hit of all was a visit from Susan Romney and Zoe Cantor who came to give Tales an awesome beading/jewelry making lesson this morning. This was no arts and crafts project. This was a jewelry factory on wheels. They made great stuff and we have enough supplies leftover to fill Fortunoff. Check out the picture below and take a look at the pictures on the Taylor's Pictures" site. |
| Date: December 6, 2003 - 10:30 PM
Journal: Well, at least I know you are all reading this regularly. When I get behind in the updates, we get lots of calls and emails asking what's wrong. Sorry. Everything is fine and there is lots to report. First, the picture of Tales after the make over is now up as promised. It will grace the cover of the PCF journal. We put some others on the "Taylor's Pictures" site too. Click below. Second, I guess I under estimated the interest in the PCF Journal that will feature Tales. We got bombed with emails asking for details and Sue rode me for not including the address and phone number for PCF, (what's the matter, you never heard of directory assistance???). Anyway it is nice that so many people want to send her a message. Heres it is: "Pediatric Cancer Foundation Journal"...please call Nancy Joselson at 914-777-3127, or email her at Njoselson@aol.com. ..And thank you. Tales is really excited. Third, A new front has been opened in the "taybandz" campaign. Sue's sister, Lynn, who lives is Rye, has exploded for over $10,000 of sales of "taybandz" in just a few weeks!!! and it shows no signs of slowing down!! Either those Rye folks are really nice, caring people or Lynn just has amazing personal charisma...I'm betting it takes both to explain it. When we send our next bundle of collected money, "taybandz" will have raised over 70,000 jfor pediatric cancer research!!!! Staye tuned, "taybandz" has another new line on the way including new belts, key chains and a new holiday necklace with a pendant made at Edgemont High School by students and their art teacher, Jeanette Stockton.!! Tales has had a busy week. Last weekend we trudged up the mountain at Jones Tree Farm to cut down our Christmas tree. Tales made it all the way to the top! (God forbid we should find a tree a little closer to the car.) It was a typical Taylor effort. She struggled with the cold air and her tender lungs but she never said a word (except to criticize my selection). Then Monday she started a new tound of chemo that is supposed to last 5 days. By Wednesday, however, her toxicity had dropped so fast that they gave her the rest of the week off. She still feels sick but home is a better place to recover. And she used the time wisely. Thursday she picked out another Christmas tree of her own as well as some personally selected ornaments and put it in her room. She had a secret agenda. Tales knew that Mommy loves an all white tree but this year was a "colors" year, (tacky is how Mommy describes it) in deference to the kids. So Tales made the most elegant, all white, tree you could ever imagine just to make Mommy happy. Can you imagine? The picture is on the Taylor's pictures site. Click on the link below. You can also see a picure of Tales and our friends the Benza Girls,(plus dad), taken today when we went sledding. Same site. Yep, Tales went sledding in the blizzard and despite my doubts did her own walking back up the hill each time. Missing is the picture of our car half way down an embankment. I figured I better tell you before someone else did but I'll be damned if I'm going to show you. Monday starts another, harsher, chemo week. She'll be in the Sloan "Pediatric Day Hospital" all week. Stop by if you get a chance. She loves visitors. That leaves one week to be neutropenic and a strong week for Christmas. This will be good one!!! |
| Date: December 1, 2003 - 07:30 PM
Journal: The holiday couldn't have gone much better. Tales felt well, had fun and enjoyed the family time. In honor of Aunt Annnie's birthday, she got a manicure, pedicure and then a makeover at Neiman's. It was a good reminder of how well she will look and feel when the the treatments are over. We'll post some picures tonight. Today she is back "in the salt mines". She gets back to back weeks of chemo this week and next. Unless something goes wrong she will feel really sick but get the treatment outpatient and sleep at home each night. We also are thrilled that Pediatric Cancer Foundation, (the charity that "taybandz" has been supporting), has announced that Tales will be the FIRST EVER child honored in their annual journal. The journal highlights one person each year for outstanding contribution to the effort to cure childhood cancers. It also serves as a fund raiser since people can buy pages within it. Taylor's face will grace the cover, and pages within it will contain messages of support and congratulations. I took the picture after the makeover. Gorgeous! |
| Date: November 26, 2003 - 09:30 PM
Journal: The last two days found Taylor in the hospital again. Some of the treatments that Tales may need can be ablative, (burn up the bone marrow), and require that the patient have a stored reserve of stem cells to be reintroduced afterward. The stem cells hopefully generate new marrow. On Monday Taylor's numbers soared and she was scheduled for stem cell harvesting on Tuesday. She needed a general anasthetic so they could implant a catheter in her femeral vein. Afterwards Tales spent three hours providing blood which was stripped of its stem cells and returned to her body. But one day doesn't yield enough cells, so she stayed overnight at Sloan with the catheter in and went back for five more hours today. She's home now and ready for a family Thanksgiving. We hope she never needs the cells. Happy Thanksgiving to all of our firends and family. |
| Date: November 23, 2003 - 06:30 PM
Journal: Last week Tales was stuck at home with no immune system determined to get cleared to go to her camp reunion on Saturday. Once again, with Sloan warning not to get her hopes up, she delivered. Friday morning her numbers soared and she cleared for the weekend. If we had any doubt that the mind can drive the body in strange and wonderful ways, those doubts are squashed each tome Tales sets a deadline. She had a sleepover Friday and went to her reunion Saturday morning. Then to top things off, the last two days she has been getting back on her unicycle!!! She's tired but smiling. So many people have done so many things for Tales and for our family that it is hard to remember to say thank you to everyone. For those we have missed, we did notice, we're truly touched, and we can't thank you enough!! Tomorrow, is a another really special example. At lunch on Monday, the 200 Park Ave office of Smith Barney, lead by Anne Marie, is hosting a lunch time "tay-bandz" sale so that the brokers and staff of their office can support Taylor's project. Why is that so special? I've never met Anne Marie! As a matter of fact, I've never spoken to her. She just took up the cause merely because she was touched by the story, because she has a big heart, and because we are colleagues. I intend to meet her now!! People are really amazing. Jill Abraham and Susan Berman are doing the sale with Anne Marie and they told us to bring lots of inventory. One last event we have to mention. Recently, the Manhattan chapter of PCF had a big fund raiser in NYC. They wanted us to recount Taylor's story and struggle as the keynote address. We just couldn't go given Taylor's condition at the time. So...our friend Donna Vitale volunteered to make the speech on our behalf! In front of 200 revelers packed into a club in Manhattan, Donna held them spellbound as she told them about our Taylor. We were told that you could hear a pin drop until they roared with applause at the end. No one has ever been better represented. Thank You Donna!! You can see a pictue of Tales celebrating Donna's birthday below. |
| Date: November 18, 2003 - 09:30 PM
Journal: What a difference a few days make. Tales tried to eat all weekend but didn't hold much down. Today she was hungry and the nausea is mostly gone. Timing is everything. Just when she was getting hungry, Caryn Balamacci stopped by with a beautiful Rack of Lamb dinner. She loved it. One minute she's eating saltines, the next she's eating Rack of Lamb! We also found a new hobby for Tales,(and Mommy and Corey too). Nancy Zelenetz came by this weekend and showed everyone how to knit. Taylor was hooked! She was back today with special needles and rainbow yarn. It made the day! Meanwhile, "tay-bandz" is now a nonprofit corporation. Sales and production went so well that we had to go "legit". The logo will soon be trade marked and we'll have a checking account to deposit all the cash and checks. You now have raised over $60,000 and still climbing!! Susan Berman, Jill Abraham and a bunch of other enthusiastic supporters have almost blown through all the inventory. We've re-ordered some items and Tales is designing a new line. AND in case you haven't seen them yet we now have "tay-bands" hats!!! There are bucket hats, and baseball hats with the logo. Finally, something for me to wear! I have trouble carrying off the striped elastic headband look. |
| Date: November 15, 2003 - 11:45 PM
Journal: Well Taylor made it home on Thursday with home nursing care for her IV fluids. She's still pretty sick and nauseous but it's better to be sick at home She keeps trying to eat and she does get hungry but she probably won't be eating easily until Monday or so. Meanwhile, that little cloud over our heads that I've been telling you about just caused antoher thunderstorm. Recently we were contacted by the "Make A Wish Foundation" to offer Taylor a wish. She wished for a tree house in the back yard with a hole in the roof for a telescope so she could see the star that the Onorato family registered in her name. We even picked a group of bigger, older trees to build it in. Well, late Thursday night in the big wind storm, we lost the biggest of the trees. It fell, crushing our trampoline, the neighbors fence, and some of our plans. We are working on plan B now. You can't make this stuff up. Tales should feel better by Monday but then she goes neutropenic again so her activities will be limited. We'd be happy to be healthy "shut ins" right about now. |
| Date: November 12, 2003 - 11:00 PM
Journal: Another round of chemo is behind us. Watching Taylor is heartbreaking but from here she should start to feel a little better each day. I think she'll be able to finish her chemo recovery at home starting tomorrow. We can't wait. Now some good new and some bad news. The good news is that people keep finding new ways to do acts of kindness for our family. The bad news is that sometimes people don't think everything through. Students at Seely and Greenville schools brought home a flier today announcing that the Pediatric Cancer Foundation will be dedicating their annual journal to Tales. It goes on to suggest that a contest is being run for a child in Edgemont to draw the picture for the back of the journal. We are shocked that any such flier went out. WE WERE NOT CONSULTED ON THE IDEA AND WOULD NOT HAVE AGREED TO THE COMMUNICATION IF WE HAD BEEN CONSULTED. We apologize for any negative message it created. We are, in fact, big fans of PCF and Tales will,in fact, be honored in this year's journal. We are very proud. The flier, however, has been perceived by many of our friends as a veiled solicitation. Further we fear the contest could be a potential source of conflict for the kids, creating bad feelings from very good intentions. WE STILL HAVE TROUBLE COMPREHENDING WHAT THE EDGEMONT COMMUNITY HAS DONE FOR OUR FAMILY. UNDER NO CORCUMSTANCES WOULD WE USE TAYLOR'S STORY TO SOLICIT OUR NEIGHBORS NOR WOULD WE EVER WANT ANY HURT FEELINGS AMONG THE KIDS. The flier will be retracted. Please accept our apologies. |
| Date: November 11, 2003 - 11:00 PM
Journal: I know, I know, I'm way behind on the entries. Tales had a good weekend of visits, school work, (last week she saw her teachers for tudoring), a sleep over and family time. Believe it or not, her teachers have kept her up to date with her class even though she can only do work about every third week. She also found that she is not just good at arts and crafts but at "art" too. She's been taking oil painting lessons which is good for her bad arm/hand and just plain fun. The kid has talent. On saturday she got more accupuncture and really felt better. She had color in her face and the muscles in her shoulders and back finally loosened up. Now I want it. Monday arrived too soon however and Tales started chemo again. This cocktail just brings you to your knees. The concept is that the drugs attack the fastest growing cells in the body, which for Tales are cancer cells. To get the poison to the cancer cells, you have to poison the rest of the body too. She's in pretty bad shape. Too sick to sleep and too tired to get comfortable. The nausea is overwhelming. She just desparately wants to come home and feel normal. We hope she can get home on Thursday and enjoy the next weekend. Every morning that she gets up and puts on her game face is a study in courage. My daughter is my hero. |
| Date: November 5, 2003 - 09:30 PM
Journal: OK, I can't hide from this entry any longer. There's been big doings here...not all good. Monday Tales did a pretty good job of working her lungs and getting fresh air but she was still having real pain. When I got home and Tales needed pain medicine, I asked Sue what she was due for and gave the pills. She was supposed to get 3 pills of pain drug "A" at 5mg each but I got the instructions wrong and gave her 3 mg of drug "B" at 20mg. After a call to Sloan we took her in to spend the night. It seems I ODd my daughter and she needed to be monitored. She did fine,(acutally got a GREAT night's sleep!!!) and I'll live it down. But probably not 'til I retire. Last night our sitter, Biatta, arranged for her accupunturist to visit Taylor to see if he could help with pain management, circulation, healing and maybe even nausea. I know most people don't buy the accupuncture thing but he really helped! And before you bring up my spotted past on delivering care, the Sloan Docs are convinced too. She loved it. She got all the muscles of her back to relax, some pain relief and her color went from washed out to Rosy. We signed up for regular visits! Heck I could have jabbed her with needles if I'd only known. Assuming she gets the green light from the surgeon on Thursday, she gets back on the chemo trail again Monday. This is the really ugly one,(nausea, vomiting, mouthsores) so we'll probably stay inpatient at least through Wednesday. The kid deserves a medal. |
| Date: November 2, 2003 - 02:00 PM
Journal: Wow what a weekend. Taylor made it out on Friday after some last minute resistance by the doctors. She got home around 2:00 with portable oxygen and was just relieved to be in her own house. She had already "trick or treated" thoughout the hospital in her outfit and dropped off all the home made baked goods she made for the kid's play area, so she was kind of spent. But come 7:00, as adverised, Tales went to Allie's house and went "trick or treating" at home in Edgemont. She got dressed as a bag of "Jelly Belly" jelly beans with a clear plastic bag filled with baloons and a giant label she made on the computer. And oh yes, she did it by riding her Segway from house to house with the portable oxygen in a bag on the front. Afterwards, she did some candy swapping and just hung out at Allie's until after ten PM!!! Saturday we had our own family traditional birthday morning. Then all hell broke lose when the Ingrassia side of the family plus Aunts, Uncles, and Grandparents came to the house to do their own production of The Wizard Of OZ, (complete with costumes, scripts and music), right in our vestibule. And of course Taylor was the the main event as Dorothy. Today is a quiet family day and a chance for Tales to do some excersize and relaxation...all part of healing. She has bad pain when the medicine wears off but she is on the mend. Thanks you to all who remembered her birthday. She was floored by the calls, cards, and gifts. Check out the picture of Taylor and Mommy below and all the new pictures on the Taylor's picutes site by clicking on the link. Now we get ready for the next round of chemo. |
| Date: October 30, 2003 - 11:45 PM
Journal: Today started off on a good note. They took out the chest tube. It hurt coming out but not as much as it hurt staying in. Tales had a few visitors from some of Sue's friends and therefore got even more gifts and food, (you can't can't enough of those now can you?). Ryan came in tonight to help Tales decorate her room and the whole unit for Halloween. eIt loooks cool! She'll see it for a few hours tomorrow but more importantly, unless something goes wrong, SHE'S COMING HOME FOR HALLOWEEN! Some medical people may have doubted she could do it but Tales was sure she was busting out all along. Worst case is she has to go home with oxygen, but we'll take it. This Halloween is going to be special for this family. |
| Date: October 29, 2003 - 11:00 AM
Journal: Taylor is doing her part, but we are working against a head wind. The pain management has been challenging. Tales got an epidural during the operation to make pain mangement easier and get her on her feet faster. Unfortunately, it doesn't radiate high enough to get the top of her chest and back where some of the worst pain is. In addition it doesn't hit the where the chest tube enters or finsishes in the top of the chest. So Taylor has been toughing it out with only partial relief and waiting for the chest tube to be removed. On top of it, the chest tube has a leak so removing it may be delayed. Mostly the nights are the worst so she makes up some sleep during the day. This morning they are taking out the epidural and switching her to IV pain medicine. It doesn't slow her down though. After last night's entry she walked again, (10:30PM), even LONGER just for good measure. This is a good kid. She's even starting to ask for visitors. Still hopoing to be out by the weekend. Stay tuned. |
| Date: October 28, 2003 - 08:30 PM
Journal: Well, by now you know the drill. Taylor woke before 7:00 and pushed the nurses to get out of bed...exactly 11 hours after she left surgery. She walked a few steps to the chair and sat for a while. She found that she couldn't walk far because she was tethered to the wall by tubes so she walked back and forth the three steps between the bed and the wall. By mid day she followed with a walk to the nurses station. But the topper was at dinner when she awoke from a long nap and announced that it was time to walk again. She took off with Mom and the nurse and traveled the whole floor before collapsing back into bed...less than 24 hours after surgery. She also talked her way out of the catheter, the arterial line, and the oxygen mask. She's targeted the chest tube for tonmorrow. I'm betting that goes too. |
| Date: October 27, 2003 - 10:00 PM
Journal: She's out!! The surgeon came to see us at about 8:15PM. Tales did great. They killed and removed alot of cancer from her left lung today and when they were done cutting, her lung reinflated beautifully. She is in the POU, (pediatric observation unit), and getting constant care. The breathing tube is out and the chest tube should be next...maybe even by late tomorrow but probably on Wednesday. Tales has announced that she will walk tomorrow. God help the doctors if they try to stop her. |
| Date: October 27, 2003 - 04:45 PM
Journal: Tales was calm and mostly patient all morning. She had Amy from Child Life Services keeping her occupied,(God has a special place for people like Amy), and Mary, her favorite clinic nurse, to smooth the time. She went down late and entered the OR at 3:45PM. It could take 45 minutes to an hour just to get past anasthesia and prep so we're here for a while. Our next update from the circulating nurse will be around 6:30. Tales will probably be in surgery 'til at least 8:00 or 9:00. More later. |
| Date: October 26, 2003 - 09:00 PM
Journal: The last few days couldn't have been much better. Tales stayed up until midnight after the party opening presents and recounting the "mystery". She slept late and spent the day with Aunt Annie and Sue enjoying the time before surgery. We got word during the day that "Taylor blood donors" took over the Sloan Donor Center highlighted by Sue's Sleepy Hollow Tennis teamates. A couple of pints of that stuff and Tales will give up golf and develop a killer backhand. THANKS GUYS! By the way, Taylor has a friend from Sloan with the same disease who could use some directed blood too. Taylor asked that when you give blood or platelets in her name that you give a back up name of Christina Tozzi. Whatever Tales can't use will go next to Christina before the general population. That's our Tales! Always looking to make a difference Friday night we gave Tales her big surprise B-day present. It took some real work to get it done too. Our friend Jim Goodyear volunteered to get up at the crack of dawn to drive to East Hampton and back to get the gift and get trained to use it(and to train us). There is only one place on the East Coast to get one. We gave her a "Segway". You've probably seen them on TV, or at Epcot in Disney or maybe even in NYC where the Police are testing them. They are like little electric scooters or platforms that you move by shifting body weight. They transport you silently up to three times a normal walking pace and start, stop and turn on a dime. It can travel 12 miles on a charge and as fast as 12 MPH. The call this thing the future of transportation. We just call it coool!. She and her friends, (and Daddy too), love it. Look at the last picute on the boottom of the Taylor's Pictures page. Just click the link below. Finally, we got a huge and thrilling surprise on Saturday. Our neighbors, the Weintraubs, arranged for a special charitable organization called "Songs of Love Foundation" to write a song about Taylor and record it professionally on a CD. Everybody and erveything in Taylor's life made it into the song and it is GREAT. The music and lyrics are all original and it could be a hit on any station in the US. We just can't stop listening to it. You have to hear it. What a way to go into our second surgery! We can't thank the Weintraubs or "Songs of Love" enough. I'm too technologically challenged to get it on the site for download but I'm sure someone can show me how. In the meantime I made some copies if you want one. Hurry. I only made about three hundred! Tomorrow's surgery starts with an 11:00 AM check in for a 1:00 OR time slot. I'll update the site during the day. GOD BLESS TAYLOR! |
| Date: October 24, 2003 - 09:30 PM
Journal: The last four days were a blur. Wednesday was higlighted by VIP front row seats at a Brittney Spears TV taping of songs from her new album. Rich Divenuto did it again. We were inches from the stage and she is as gorgeous she looks on camera. We had a blast. We were supposed to hang with her privately but it got a little screwed up. I'm not sure little girls should see that kind of dancing in those kinds of outfits...actually I'm not sure Daddys should either! Next came Thursday. We split the family responsibilities. Tales and Mommy made last minute preparations for the party and got "duded up". I went to the pre-surgery conference. I need to talk to my agent! Not much good stuff happens in a pre-surgery conference. Looking at ugly scans, listening to details of proceedures, discussing worst case scenarios, and signing release forms doesn't start the day on a high note. But we have great faith in the surgeon and great faith in prayer. Thursday night was Taylor's birthday party. It was a murder mystery a la Agatha Christie. 70 kids at Sleepy Hollow CC solving a murder in a big old scary house. 20 kids were "suspects" with roles to play, costumes and clues. It was run by a group called "Mystery and Mayhem". Taylor was "Jessica Fletcher" and led the investigation. It was an absolute blast!! We even got Taylor to wear her (very expensive and never used) wig under a knit hat. It was nice to see her looking normal. SEE THE PICTURE BELOW and check out the new pics on the Taylor's Pictures site. Just click on the link Monday is surgery day. She is having a thoracotomy of the left chest to remove nodules from the left lung. We are scheduled for 2:00PM but they always seem to start late. She'll be in there a while again but it should be nothing like last time. I'll be bringing the laptop to give updates during the surgery and afterward. If you get a moment, say a little prayer. |
| Date: October 20, 2003 - 09:00 PM
Journal: What a nice day for Tay! Aunt Annie got here on Sunday for a weeklong visit, (hanging with Aunt Annie is close to Shangi La), so the day was one long party. Manicures, pedicures, shopping, plus some practice rounds of Clue to get ready for her pary. She even enjoyed some tutoring. But the big hit was a visit from MS MACHOVER and Ms MANZI, teachers extraordinaire from Taylor's old school), bearing surprise after surprise. First there were Happy Birthday posters from every class in K through 2nd. Then there was a gigantic Birthday card signed by every single kid in every single class from 3rd through sixth. But then came the topper!!...a pile of very generous and really wild Birthday gifts! Take a look below at the picture!!! SHE SMILED ALL DAY!!!!We also posted a new one on the Taylor's Pictures site. Check it out. |
| Date: October 18, 2003 - 09:30 PM
Journal: Friday was scan and test day. Tales spent the day with us getting prodded, poked and imaged. We'll see what the results are next week and discuss when the next surgery happens, (we have a near term date in case). While we were there, they did a routine check of her blood levels and found her hemoglobin down again so we added a transfusion on as well. It explains why she was so tired this week and didn't do well on my training routine and obstacle course. But she just took it in stride...well almost. She DEMANDED a custom dinner order... Salad Pizza, Janet K's leftover chicken, and Pop Pop's meatballs. The family went to the Sacred Heart Fair with the Benzas and then Tales went to Lauren P.'s birthday party and had a great time seeing her friends. It made her even more excited about her own party this Thursday. I think we're more excited than she is. |
| Date: October 14, 2003 - 08:30 PM
Journal: Today was about Birthday and Halloween preparations. She'll probably be inpatient for both but we're going to make both count. I want her to be a lady in the shower. She's thinking ladybug. That's her good luck charm. I'm thinking ladybug works for me too. She went to clinic yesterday and her blood levels were just above minimum so she is cleared for anything she wants until she gets her scans on Friday. We'll make them count. |
| Date: October 12, 2003 - 10:30 PM
Journal: This was a good weekend for Tales. She was obviously getting her white count and hemoglobin up. We can mostly tell now just by looking at her. She wan't supposed to have visitors 'til they confirm she's OK at clinic on Monday but for her grandparents we made an exception. My Mom and Dad came from Phila. to spend some time and she was thrilled. She loves to know people think of her and that she is special. They brought another art project which brightened her right up. Oh god! I don't think I can help with another art project. I'm good with art like I'm good with basketball...lots of effort and flourish--not much to talk about. Taylor made another stop at PCF to drop off the latest receipts from "taybandz". Another $9,000 towards a day when no child ever will ever face this disease. We're now well over $30,000 and a new line is being prepared, (plus new this fall, taybandz hats). For those reading this that have bought a "taybandz" item, you can't possibly know the good you are doing...for Taylor and for the fight to cure this thing before it takes another child. Work has started on a last minute birthday party for Tales to be squeezed in before her tentative surgery date. This may take the concept of over the top kids birthday parties to new heights. (Remember soda and chips in the basement with "Twister" and "spin the bottle"?) However, if we're going to go a little overboard on a birthday party, I think this year is the one. |
| Date: October 8, 2003 - 10:30 PM
Journal: Yesterday Tales went to clinic for blood tests and it was a good thing. Her white count was zero and her Hemoglobin was 7.3. That would keep you or me confined to our bed lacking the strength to get up. She was pretty wiped out. At this point we can pretty much tell when she needs transfusions. She got two units yesterday and we're sure she'll need more tomorrow. Meanwhile she did her PT, four hours of homework, and some art projects. Talk about whipped! She'll sleep tonight. Incidentally, for all of you who found that you were eligible and were kind enough to donate, Tales is almost out of donor directed blood and platelets. She used alot up and some went past the time frame when they save it for her exclusively. If you can bear the thought of doing it again, we'd love to know that all the blood comes from our friends and family. Use the link to Taylor's Blood Drive below to see how you can help. By the way, we know that yesterday she got whole blood from Laura B.,(the Mom of one of Taylor's friends), and from Maryanne, (an old friend from my Shearson days who now lives in Rhode Island). Thanks. She is making good use of the gift. |
| Date: October 6, 2003 - 10:30 PM
Journal: The weekend turned out pretty nicely. Tales did some art, some PT, some cooking and some studying. The art work is all geared towards giving everyone home made gifts for Christmas. This is really cool stuff. I consult. We even found a new physical therapy idea...bread from scratch. It takes both hands working hard to kneed the dough. She even eats the product which helps her bulk back up... not a problem she got from Dad! Sometimes Tales gets pretty low but certain people just pick her up. She had a real nice visit with her cousins Sarah, Claire and Jenny Ingrassia. That's right, Sue's sister Lynn has 3 girls that match up almost exactly. We ended on a real high note with her first post surgery sleepover with her friend Laura. She stayed the whole next day too! It was an awesome visit. But bigger still, the Onorato family came up with a true Tales pleaser. They registered a star in Taylor's name complete with a celestial map and how to find it. She was thrilled. We always knew she was heavenly. Now she can prove it. |
| Date: October 3, 2003 - 10:30 PM
Journal: Another week of chemo is behind her. By tomorrow she will start to feel better so we hope to put a little fun in her weekend. Sometime this week Tales will become neutropenic and then we worry about fevers and having to go inpatient but until then we party...or do homework. The samples of the new "taybandz" line just arrived. Very Cool!!!! Taylor is a fashion genius. Jill Abraham, and Susan Berman did it again. |
| Date: October 1, 2003 - 08:00 PM
Journal: Another tough day of chemo. On this drug, Taylor just starts to feel OK by the morning and then after an hour or so of treatment she craters. Sue and Taylor get by on visits and calls...and food combinations that even a pregnant woman couldn't dream up! Last night it was ice cream and salami. Can you say heartburn? Speaking of food, Taylor is making a financial donation to the new kitchen being installed in the new pediatric facility. The kitchen will offer a combination of entertainment, physical therapy and real nutrition, (God forbid). She is also accumulating recipes for the kitchen that fit the facility. They'll all go in a recipe book she is creating. Send your kid friendly recipe suggestions to Tales. She may put you in her kitchen! |
| Date: September 29, 2003 - 11:00 PM
Journal: The week ended very nicely. Tales felt well enough for some physical therapy, visits with Jenny and Laura, and a trip to the mall. Even the art projects got revisited. This morning she started another round of chemo. This one is given every day through Friday with hydration at night in a backpack. She gets really sick by day's end but then she will rally in the morning for some breakfast before they do it again. We have at least one more round of chemo after this one and then surgery towards the end of October. Funny how the whole family is looking forward to the surgery but we just want it out. |
| Date: September 26, 2003 - 11:00 PM
Journal: This week ended very nicely. Tales did some errands with Sue, visited her grandmother in the hospital to cheer her up, and had a great visit with Mrs R., her gym teacher at Seely. Only Mrs R has more energy and enthusiasm than Taylor! She brought sunshine, goofy gifts and excercise tools for her recovering arm and hand. She said she would do anything necessary to get Tales back to normal even if it meant coming over every day to shake Taylor's hand 400 times. It made her day. She also got to take some of the "taybandz" money to Marcia Walker at Pediatric Children's Foundation,(PCF). Marcia let her know how important her efforts are.It made her feel good about making a difference. Check out the picture below with Mrs R. and the PCF picture on the pictures page. |
| Date: September 24, 2003 - 10:15 PM
Journal: Tales has been doing her "Tales" thing. They bomb her with high dose chemo and she flushes and metabolizes it so fast they don't believe the numbers. This chemo is given on Monday and flushed through Friday. If you get lucky, your toxicity drops fast enough to skip friday. Tales came within a couple of points of getting out on Wed!! She feels like doo doo but she bounces like silly putty. She'll go home early on Thursday. The highlight of the day is when the mail has some letters for her. Some of you must be writing full time! Some days she reads them over and over. Some days she feels too weak and just wants to know who sent them while we read them to her. Thank you! |
| Date: September 21, 2003 - 11:15 PM
Journal: Boston was a bit of a bust. We did see another wonderful physician and he did tell us we were dong all the right things but it was based on a summary of Taylor's treatment provided by Sloan and an examination in his office. The films and scans were never sent to Dana Farber for review. We'll have to wait for them to be shipped to get a real review. Tales got dragged up there for no real purpose. Tomorrow we start chemo again. She'll be in clinic all day through Thursday or Friday and home each night. These aren't good weeks. She's been trying to boost her weight because she has been getting a little thin. Can you say "butter pecan"? |
| Date: September 18, 2003 - 10:30 PM
Journal: Tales has had several good days in a row...almost too good. She goes flat out all day and ends up exhausted. She's been doing physical therapy, walking, shopping, homework, tudoring, crafts and then dropping like a rock at the end of the day. Today had a particularly good ending. Our friends the Baritz family sent home a gift that left Tales beaming. While Stu was on a business trip to Japan, he picked up a stunning, authentic, silk Kimono. And believe me, when Tales is happy we are all happy. Look at the picture below! Tomorrow we drive to Boston, (it's tough to fly in a hurricane), to get a "once over" from the pediatric oncology department at Dana Farber. I think Tales will love Boston. |
| Date: September 16, 2003 - 10:15 PM
Journal: Tales took her new found strength to town today. Well , actually, to the mall. When the going gets tough, the tough go shopping. The big acquisitions were in the pajama category. Tales goes to clinic early in the AM in her PJs. Not just any PJs...David and Goliath PJs. These are designer pajamas with themes written all over them. She has several hot models including the "It's all about me" version. Today's new item is the "Boys are stupid! Throw rocks at them!" version. Those are my favorite. She is back to turning out homework and catching up on reading. She doesn't want to lose any ground to her class. That's my girl. |
| Date: September 15, 2003 - 09:30 PM
Journal: She did it again. When we checked in to Sloan they prepared us for a stay through Wednesday. Taylor's white counts were almost zero. The key number, ANC, was still only .4 on Sunday. It takes .5 to go home. Today she woke up feeling much better and her ANC was 6.o!! She was home around mid day! Meanwhile, all of us have been coming home to gourmet meals each night courtesy of the culinary talents of friends and family. Great friends...better cooks. Not that eating my "all in one skillet" specials isn't really popular but something about distinguishing the meat from the vegetable and potato has an appeal. On the update front, our new Nanny, Verily, arrives Wednesday. Our summer sitter Kristin is going to help her get acclamated. And "taybandz" have raised over $18,000!!! We're just getting new inventory out now. We're not sure where to stop this thing but it has been great to see so many people help out. Jill never sleeps and Susan Berman has practically shut down her own business to help ours. Thanks guys. Edgemont really is a wonderful community. |
| Date: September 13, 2003 - 09:30 AM
Journal: This has been an up and down week for Taylor. Currently she is in a down phase. She's back in Sloan. We've had her home since last Saturday evening. Wednesday Tales went to clinic for a blood check feeling pretty low and pretty exhausted. Turns out she was neutropenic and her hemoglobin was 7.6 , (trust me on the number, you and I wouldn't be physically able to get out of bed), so she got transfusions and spent the day. Thank you to someone out there. The blood was "donor directed" again!!! Friday we were supposed to be at Dana Farber in Boston for our second opinion but Tales couldn't go because of the white count on Wednesday. Instead we went to clinic where Tales squeeked by on the counts. She had the option of getting transfusions or toughing it out. She skipped the transfusions. Last night she spiked a fever and we had to check in at Hotel Sloan. She's in for a few days of IV antibiotics and observation. She's also going to need more blood and platelets. On the news front, we got tales a physical therapist who comes to the house for her arm/shoulder, and we think we found a Nanny. She's a young lady from Utah who has worked for a Briarcliff family before and loves the area. With a little luck she starts Wednesday. The nursing and admin staff at Sloan have been wonderful to Tales. She's found some new friends and big sisters. Check out the "Taylor's Pictures" site. Below is a mural Tales did for the Child Life Services room at Sloan in honor of Pediatric Cancer Month. Not bad considering her right hand and arm don't work right yet! |
| Date: September 7, 2003 - 05:30 PM
Journal: We got Tales home Saturday afternoon with an IV backpack!! She is exhausted from the chemo, antibiotics and fluids, (she has to get up every hour from the IV fluids), but she is thrilled to be home. We did some daddy directed physical therapy and took a couple of walks. We need her to get her arm and lung back to normal. By next week she will be neutropenic but as long as she is not feverish she stays in her own home. She gets a two week break before her next treatment and we hope to get her back to studying so she keeps up with her class. "taybandz" did well at the football game. Lots of motivated 7th graders plus a PTSA team headed by Holly Osmond made a a big splash. Jill added an item to the lineup which sold out, "taybandz" sweatbands. The custom embroidery and packaging were donated by our neighbor, Monica Sganga. Thank you Monica! We're still desparate to find a good Nanny. If you know someone, let us know. |
| Date: September 6, 2003 - 12:30 PM
Journal: This has been a tough week for Taylor. She didn't get even a full 24 hours at home before being re admitted. The specific antibiotic for her infection is given over 7 days and is very toxic. But they didn't want to miss any chemo time so they gave her a chemo cocktail AND the antibiotic at the same time. When you add that to a fair amount of post surgery pain, it gets a little tough. Tales takes anti nausea meds, narcotics, neuropathic pain meds, muscle relaxers, antibiotics and several over the counter drugs. And she's still pretty uncomfortable. The good news is she comes home late Saturday! She will become neutropenic sometime this week so she is at risk for infection. We need to keep her fever free so she doesn't go back in. Meanwhile the launch of "taybandz" has gone very well. The team of parents and students sold almost $9,000 of "taybandz" in the first few days! Tales can't wait to send the money to PCF. Personally I like the key chains. I've never looked good in ribbons. |
| Date: August 31, 2003 - 10:45 PM
Journal: Another long day in Sloan made better by friends. Tales looks like she is beating whatever got into her blood and while she waited she got visits from our frends, Donna , Caroline, the Nisi family and the Abrahams. Yesterday my brother's family dropped in from Pennsylvania for a great surprise. She also got a lift from something else. She got the final samples of a project she has been working on almost since diagnosis....taybandz taybandz is a line of hair accessories, (and keychains for the guys), that Taylor has designed for sale in the community as a way to raise money for a local Scarsdale based charity called Pediatric Cancer Foundation. PCF funds cancer research at several major cancer centers including Sloan Kettering. She picked the fabrics, the style and even invented her own logo. It is Taylor's way of trying make some good come out of her struggle. The whole thing is the brainchild of our friends and neighbors, Susan Berman and Jill Abraham.Susan used her professional experience in retail accessories to help design, source the materials, manufacture and plan the pieces. These things are awesome...so is Susan. All of the materials and manufacturing costs were donated so every dollar goes to PCF. We also had many hours of planning, organization, and printing help from our friend Jill Abraham. She organized the processing, distribution, and sales effort. She also helped with the logo and arranged the printing and formating of the tag that bears a picture of Taylor with a message about the campaign. Every good idea needs marketing and sales savvy. Thanks Jill! The whole collection will go on sale beginning on Wednesday, September third at Seely and Greenville Schools They go on sale Friday the fifth at the High School during lunch , after school, and at the evening Panther football game. Actually, several other schools and some retailers throughout the area have asked to sell the collection. We hope you like them and we hope you will consider wearing one. To hear more or help out, e-mail Jill Abraham at Jill.sa2@verizon.net. |
| Date: August 30, 2003 - 03:15 PM
Journal: Well the pary was great and Taylor was very pleased. (See the picture below). And it's a good thing we got it in. Today turned a little South. Early this morning the hospital called to say that one of Taylor's cultures was positive. It explains the fevers she keeps spiking. A small skin infection has gotten into her blood. we took her in to re-culture her blood but she had to be admitted again to get IV antibiotics. Since we don't know what the infection is yet, we don't know how long we'll be inpatient...but it will be between 3 and 14 days. Hopefully we can do chemo on schedule. To add to the problem, we need to look for a new caregiver/babysitter. Now we're in a panic to find a new person. We need someone full time who can fill in for Sue, drives, can prepare meals, run errands and cater to the kids. We're thinking "live in" but we would do "live out" if they could be flexible at the end of the day when we are inpatient or even sleep over sometimes when we get caught short of time. If you know someone, please let us know. School starts next week and we will be at Sloan alot as we fight the infection and try to start chemo. |
| Date: August 29, 2003 - 02:25 PM
Journal: She's going home! The doctors can't figure out the occasional fevers she spikes but they think it is from a little infection from the broviak port, (tubes in her chest for chemo), and are giving her antibiotics to take home so she can be home for the weekend. Tuesday she starts chemo again, but for now we party! |
| Date: August 27, 2003 - 11:45 PM
Journal: You have to take the good with the bad. When the pain management works she makes great strides. When it doesn't, she stuggles with even little things. Tonight I'm sleeping in the hospital with her and she is really comfortable with the pain... So we busted out of the joint!! She owed the nurses one last walk so we walked to the elevator, went down to the lobby, walked out the front door onto York Ave and went for a walk. We were quite a sight on 1st Ave in pajamas and pushing an IV pole! She covered about 4 blocks total. When this is all over she wants to run a marathon for cancer research with Mommy, Daddy and the surgeon. I hope they enjoy it. |
| Date: August 26, 2003 - 06:45 PM
Journal: Monday was a big day. She had visits from Mommy's friend Donna, her sisters, grandparents and our new babbysittter, Barbara. She got her second tube out and took two laps around the ward. She still struggles with pain, and sometimes it gets her down but she toughs it out as best she can. Taylor has a new challenge which she is trying to deal with. She has some numbness, pain, and loss of strength in her right arm and hand. We were told it could happen because they had to strip the tumor off a major nerve. The doctors feel physical therapy and time will take care of it but it gives her one more hurdle to jump. We moved back to Sloan late last night and back to the POU, (pediatric observation unit), so she has her own room...512. Today Tales walked all around the floor several times and went to the playroom for a while. I'm personally excited about the homemade GAK she made. Our friend Janet Kloppenberg arrived just in time to get drafted as an assistant. If you don't know GAK, ask your kids and stop paying retail. We can supply it. She's up for visitors again and would love to see her friends. Give Sue a call, cell 914-772-6146. |
| Date: August 24, 2003 - 03:30 PM
Journal: What a difference a day makes. Overnight the doctors got the pain medicine right. She was both relieved and alert enough to watch a little TV. This morning she wanted food again. We started off with more salami and then some Coco Puffs. Today she asked who was coming to visit her. She's ready to see people again! More importantly , She went for another walk. I challenged her to walk two doors down the hall and she responded by walking to the end of the ward and back! I should have challenged her to go around the block. Maybe she would have walked home! They took out one of her two chest tubes today and we're pressing to lose the other. She invited the surgeon to stop back later and ckeck again on the second tube. They tell us that will cut her pain in half. We'll take it. |
| Date: August 23, 2003 - 04:30 PM
Journal: Tales is trying to "will" herself better. She tries to eat a little and drink a little and pushes to try physical things but it is a balancing act between making physical progress and pain management. The more they drug her to get through the pain, the less she breathes, exercises her lungs and moves. But without pain medicine she can't tolerate the challenges. She is trying to tough it out but it is truly heartbreaking. She did qualify to lose the arterial line in her left hand which was painful and kept her left hand taped to a board. We also took a little walk down the hall which was nothing but guts and determination. Nothing new for Tales. |
| Date: August 22, 2003 - 07:45 PM
Journal: A little better each day. The breathing tube is gone and she feels good about it. She insisted on losing the catheter as well so that went today. Tales also pushed the doctor to let her get out of bed so she got up twice to sit in a chair. She added eating and drinking to the list this afternoon. They suggested jello. She demanded and got (from the unofficial nutritionist) bread, salami, and potato chips. She wants pizza for dinner. Who knows? We're probably here at NY Hosp through the weekend. |
| Date: August 21, 2003 - 09:15 AM
Journal: She had a pretty good night. Like any post-op patient in ICU, she has issues. The good news is these people can handle anything. The Chief of critical care just saw Taylor and is very pleased with her progress. He ordered the removal of the breathing tube for this morning. The good news is she will lose the discomfort, and anxiety of the tube. The bad news is that she will be more awake and they will want her to cough and move so she will be in some significant pain. Tales heard the whole presentatiion from the doctor and wants to get it out and move on. Same old Tales. |
| Date: August 20, 2003 - 04:45 PM
Journal: Today was mostly quiet. Tales is heavily sedated, is on a respirator, has two chest tubes, a load of IVs, and is very swollen. When she lightens up a bit she can respond to simple questions but mostly she sleeps. We've seen the the surgeon and the anasthesiologist and both are pleased. The breathing tube won't come out until at least tomorrow. By the way, the anasthesiologist was discussing the substantial blood loss during the surgery and the multiple calls she had to make for more blood, platelets and plasma. She couldn't believe that every time she called the blood bank, she was told that Taylor had substantial reserves of "donor directed" product. She couldn't help asking how much donor directed blood Taylor had. It turns out they have NEVER seen a flood of donations in their history that match what you have all done for Taylor and a multitude of other lucky patients. They thank you and Taylor thanks you! |
| Date: August 20, 2003 - 02:00 AM
Journal: It's over!! Tales came out of the OR a little after 11:00pm. She was in surgery for 11 hours. The surgeon was very pleased with his success at removing the main tumor and the nodules in the right lung. She was able to stand the trauma and that allowed the operation to meet its intention including the ribs, the veins, the spine and the lungs. We are in the pediatric ICU at NY Hospital for the next few days. Tales will be sedated and intubated for the next couple of days. Then we go back to Sloan for the rest of the hospital recovery period. She needed ALOT of blood, platelets, and plasma but she had enormous supply thanks to friends, colleagues and family, and Michelle Gordon. We hope she is feeling better in a few days. |
| Date: August 19, 2003 - 06:20 PM
Journal: We just had a visit with the Neurosurgeon who is done with his part. He reported that his job was more difficult than anticipated and that he had to do more cutting than he thought but that the tumor came out clean. In general he reported that the operation has been going BETTER than anticipated. The main surgeon is going after the big veins involved and then the lung, where we know he will have to do some significant cutting. The last step is the ribs before closing. In a change of plans, Taylor will be taken across the street to NY Hosp pediatric ICU and probably be there for several days. The surgery is just to big and the need for absolute safety and attention is too great. We don't expect Taylor to be out before 9:00PM or so. |
| Date: August 19, 2003 - 01:10 PM
Journal: Taylor was delayed yet again this morning. There was an emergency proceedure that took the first spot. She didn't get into the OR until almost noon. Taylor was Taylor. She was nervous but demanding to get it over with. She even joked with the surgeon. She'll be in for most of the rest of the day. More later. |
| Date: August 18, 2003 - 03:20 PM
Journal: Sunday was good fun. She went to lunch at Pop Pop's club and played a few holes...Best Yet!! I have to sign her to a long term contract. She did more crafts and watched The Addams Family Movie. I love the high brow stuff. Later today we check we in to a hotel again. Tomorrow we start at 6:15AM. I'll try to keep the web site up to date during the day and start a call chain after she is out. God bless Taylor. |
| Date: August 17, 2003 - 09:40 AM
Journal: We didn't let any grass grow. After breakfast Friday and some re-planning, Tales asked to go to a big craft store called A.I. Friedman where she got several new projects and dove in as only Taylor can. Several projects got started at once and she is burning through all of them. She also asked to rent a movie to watch on the big screen. She wanted something "old" that I thought was funny, (she loved Forest Gump), so I rented my personal high brow favorite...Caddyshack. She "kinda" liked it. On Saturday she resumed the craft effort,(Christmas is coming and she wants to go "home made"). Then we played some golf...she was awesome and even played a few holes on the "upper course". I think we'll be staying on the lower course though. It seems that when I wasn't looking Mom drove the cart over the first green! Oh well, there are other clubs if we get thrown out of this one, (I hope). For dinner we went to vist our friends the Goodyears for a cookout, (Julia Child never made such a cookout!), and Tales and Mommy went hot tubbing. Peel me a grape won't you? |
| Date: August 15, 2003 - 10:40 AM
Journal: It's kinda hard to cut straight in the dark. The power outage put us back to Tuesday. We managed to check in to the hotel just before power went out. I was taking the car to the lot and turned around. We ended up keeping the room and staying since it left us close to Sloan for options in the AM. We talked and read from Taylor's book by flashlight. We talked to Taylor's Oncologist last night who told us that if we didn't get a message, we were a "go"...just go over in the morning. By 4:00 AM we had power and so we got up at 5:30, got the car and headed for Sloan. Turns out that only the West side had power. Sloan was dark. Eventually they told us that all surgery was cancelled. We talked to the surgeon who told us the best we could do was Tuesday. We left a little dejected. Tales was ready and anxious to get it over with. We left for home...THEN IT GOT WORSE! Just past 138th street on the Bruckner, we got a flat rear tire. The Mercedes emergency number wasn't responsive. We called 911 and Sue got out to waive off traffic since there is no shoulder. I got out the jack and changed the tire. By the time I finished, the NYPD showed up to block traffic. We loaded up but then the car wouldn't move... the new wheel was locked. By now the Officers were anxious to move us and a tow truck came who wanted to pull us out. I eventually figured out that the spare uses different lug nuts. I had to re-do the job. So I got them home, took Tales to her favorite diner, and tried to find the bright spot... a couple of more days to play and swim. You know the little cartoon character with a cloud over his head that seems to follow him around? We seem to be related. |
| Date: August 13, 2003 - 10:20 PM
Journal: Monday and Tuesday went by in a blur. Tales played golf, took a piano lesson, studied Social Studies, had play dates, went to her favorite craft store, "Come Out And Clay", ate like a champ and creamed all comers in "UNO Attack". We crammed it all in before the big surgical conference today. As for today, there isn't much good stuff that can happen in a pre-surgery conference. We spoke with our Oncologist, our lead surgeon, (a real super hero), our neurosurgeon, (a true brain surgeon), our Anesthisiologist, and several others. This is a massive surgery. To remove the tumor they will have to do some serious cutting on the spine, the superior vena cava, (big vein draining the top of the body), the wind pipe, and every part of the lung that has nodules. At least three surgical disciplines will be involved and possibly four. She will be in the OR most of the day on Friday. For those of you who were able to give blood, we thank you. She is going to use a bunch. By the way, it turns out we have the same blood type so I'll be giving the first pint! She'll need alot of blood and platelets over the coming weeks and months. The good news is that most hospitals and most pediatric surgical teams wouldn't even attempt this proceedure. For these guys this is perfectly manageable even if it is dangerous. Thuursday we will spend the day doing anything she wants and then we will check into a hotel in NYC. Surgery starts with check-in at 6:15AM Friday. I will try to update this site frequently during Friday and over the weekend. If you get a few minutes, we'd appreciate a little prayer. Go Tales! |
| Date: August 10, 2003 - 10:20 PM
Journal: Good weekend! Saturday we celebrated Ryan's birthday early since she was leaving for a week with Aunt Annie and Uncle Bill in North Carolina. Tales helped make a special dinner and then we all went to see "42nd Street". Sunday we saw the other kids off, played "UNO Attack", (UNO will never be the same), added to the doll house she is building for her cousin and played some golf. Tales only needed three shots to get to a 320 yard par 4. She hit the drive over 140 yards!! She's a natural. Her friend Jenny came over for a dinner date, more UNO Attack and, yes of course, more snow cones. See the new picture. |
| Date: August 8, 2003 - 08:20 PM
Journal: Today was largely taken up with more tests but they promise she is done until Wednesday's pre surgery prep and conference. She was a champ again. Meanwhile our friends and family continue to astound. Over 150 appointments have been made for blood and platelet donations! Every time we tell Taylor the new numbers she gets a big smile thinking about the all the people that care. You guys are awesome. And every day something arrives or is dropped off at work. Neil at work found a bowl for Lucky with his name on it. He's so small he sleeps in it! Alan sent a tiny little MP3 player that goes to clinic every day. Cards, books, games, candy, even lottery tickets show up all the time. You can't know how much she enjoys hearing that people are thinking about her. We haven't been good about "thank you" cards, calls or even comments but we love you all for your warmth and care. And now let the weekend begin! |
| Date: August 7, 2003 - 08:20 PM
Journal: Wednesday was a big day for Taylor. They took all new films to prepare for surgery. She had a CAT Scan, Bone Scan, MRI and spent alot of time lying still...not easy for Tales! The films generated a request from the surgeon for two more tests on Friday. We won't have official results from the radiologists and opinions from the all the surgical disciplines involved until our family surgical conference scheduled for Wednesday, BUT the chief surgeon did give us a date for surgery of Aug 15th. We must arrive by 6:15 AM and we'll probably spend the day in the waiting room. Our surgeon is notoriously slow. Meanwhile, Tales made the most of the day today. She saw Freaky Friday, had breakfast at the diner and made another questionable investment in lottery tickets. If I keep winning at this rate I'll go broke!! Tonight she is having a visit from her friend Laura who is just back from vacation. We're making snow cones and playing UNO, (see below). Yes, we DID buy a snow cone maker. She is very persuasive. |
| Date: August 4, 2003 - 06:20 PM
Journal: Well Taylor got an extra week off. Over the weekend she developed reddish brown patches under her arms, behind the knees and in the crux of her elbows. We weren't sure what to make of it or what to do about it but it was sore to the touch. When she got to clinic today, they explained to us that sometimes, (for reasons they don't understand) the chemo collects in spots. Where it collects, it causes chemical burns from the inside out. We couldn't risk making it worse and causing an infection so she rests until we see the new films they will take on Wednesday. They will either skip this treatment if the films are good enough and go right to surgery or give her one more chemo next week. She couldn't be happier to skip the treatment. Perversely, we would like to get another one in on schedule. Maybe we will both get our wish. |
| Date: August 3, 2003 - 08:50 PM
Journal: Well Taylor packed alot into her long weekend. She ate at all her favorite places and bulked up, went to "Build A Bear" to do a special bear for her and Sue, went to Nana and Pop Pop's house for piano lessons, got Math tutoring, had a massage, (that's right a formal massage in our living room with Angie), went to "Come Out And Clay" to do pottery, watched a movie, and even played golf! She was so good we got her her own clubs! Tomorrow she goes back to clinic but she is ready. This is the last dose before surgery. |
| Date: July 31, 2003 - 08:22 PM
Journal: Tales got out early today! She was done and home by about 2:30 and doesn't have to go back until Monday. She is already thinking of something fun to do this weekend. It's supposed to rain but we don't care!!!! The surgery is now tentatively anticipated for between 8/15 and 8/22. We want "it" over and "it" out. |
| Date: July 30, 2003 - 01:45 PM
Journal: She is a little better each day. Her toxicity dropped right from the start this time so we hope she feels better by Thursday night and can take Fri, Sat and Sun off. She mostly sleeps and tries to relax. If you don't hear from her, it is just because she is out of sorts. Meanwhile, the blood drive is off to a great start. Several of you have already given and many have appts. Thank you!!!While you're there, stop by and visit Taylor and Sue. They are in the pediatric clinic on the third floor just inside the 67th St. entrance. They are there Mon through Thurs this week and next. |
| Date: July 28, 2003 - 11:30 PM
Journal: Taylor got back to business today on a rough note. It took a bunch of tries to get the IV needle properly inserted in her chest. Each stick is pretty painful. Her mediport is placed in a tough spot and hard to access. The nausea started by late morning and she has been toughing it out all evening. She got told to force fluids anyway because of the drugs and she got it done one sip at a time. She always answers the bell. Three more days this week and then a break. |
| Date: July 27, 2003 - 01:30 PM
Journal: Taylor is back to being Taylor. She laughs, has fun and eats! She had a terrific visit from her friend Jenny and also a wonderful visit from Sister Elaine who used to run the religious instruction school for our parish. Sister Elaine now works at a retirment/nursing home for Nuns in Nova Scotia. She couldn't wait to get a day off to visit Taylor. It made the day. See the picture below. Tomorrow we start a two week chemo program again. Taylor will be in clinic all day Monday through Thursday, (or Friday if it knocks her down too much)for those two weeks. She loves to get mail. If you get a chance, drop her a line. |
| Date: July 25, 2003 - 09:45 PM
Journal: Sooo much has happened since the last update. We've been in Shelter Island for the last few days and got home Friday evening. The good news is that we had a wonderful, quiet family time. The bad news is we got off to a rough start. Monday Taylor was scheduled for routine blood tests before leaving for the Hamptons. BUT she woke up Monday with a terrible head to toe itchy red rash that was torturing her. This was in addition to the stubborn horrible mouth sores. She was rushed to Sloan for tests and was diagnosed as having an extreme allergic reaction to the antibiotics she was on the week before. They gave us antihistamines to go with the Morphine. Both of them make her feel drugged so she tried to minimize them. The doctor told us to go to the Hamptons but expect the itching and rash to last two weeks. Monday Tuesday and Wednesday were pretty rough...too much pain to eat and too much itch to sleep but Tales enjoyed the peace and change of scene and tried to make the best of it. When she got up on Thursday, the rash was mysteriously gone...so were the mouth sores!!! Now we're feeding her like a truck driver to fatten her up and give her some nutrition. She even wants to see her tutors this weekend. This could be a good weekend! By the way, the Sloan blood donation center has been getting lots of calls! 65 in the first two days!!! They are floored at the response. They asked me to reiterate that all blood types can donate, anyone can give platelets and that you need an appt to give. The center is in the Schwartz Building on 1st Ave between 67th and 68th. Thank you for the wonderful support. |
| Date: July 20, 2003 - 09:40 PM
Journal: She's home!! Saturday Taylor rallied and her numbers just squeaked over the bogie. We got home around 7:30PM and around 9:30PM she informed us that she wanted to go to visiting/pick up day at Camp Southwoods. She made it four hours up and back plus a day trooping around camp. She's tired, still needs pain meds, and is working back up to eating but she is looking and feeling much better. See the picture below. |
| Date: July 19, 2003 - 01:00 PM
Journal: Things are looking up. Her white counts and platelets came up over night. SHE'S BOUNCING! The pain in the mouth is easing up and the throat should be next. We're pushing to bring her home. Her sisters come back from camp tomorrow. We could have a real family weekend. YOU CAN HELP TAYLOR. Today we are launching a drive to raise blood donations for Taylor and in Taylor's name at Sloan Kettering. Our friend and neighbor, Michelle Gordon, has offered to run the drive. Taylor will need a lot of blood and platelets over the next six months and Sloan has asked us to help Taylor and the Hospital. Michelle's home and cell phone number are listed below. Click on the link below to get to Taylor's Blood Drive for details. Michelle Gordon, email MDRTZG@aol.com |
| Date: July 18, 2003 - 11:00 AM
Journal: The last few days have been very rough. Tales has been experiencing terrible discomfort from the sores in her mouth and throat and still has periodic nausea. She has a constant morphine drip but still can't eat or drink because of the pain, and she gets fevers that come and go.She got a second transfusion of platelets yesterday and we are praying that her white cell count will bounce soon. That will fix the mouth sore and fever problem which fixes the eating problem which helps her get her strength back. By now you're not surprised to hear that each time her mouth feels a little better, she tries to see if she can help HERSELF by eating or drinking something. No success so far, but she tries. |
| Date: July 15, 2003 - 11:15 AM
Journal: Things were looking brighter on Saturday as Taylor recovered and tried to eat and drink. It was tough because she has sores throughout her mouth and throat. We even went to a friend's house for dinner. Sunday, however, she crashed. The sores were worse, she was getting terrible headaches and earaches, she couldn't eat or drink easily, and was becoming dehydrated. Even giving more and new medicines in rescue doses didn't help much. By Sunday midnight Taylor got a fever and we had to take her to Sloan and admit her for IV medication, fluids and morphine. Tales is now offically neutropenic,(zero white count), and has almost zero platelets so we have to be very cautious. She will get a blood and platelet transfusion today. She should be in the hospital for a week. |
| Date: July 12, 2003 - 11:00 PM
Journal: Each day Tales gets a little stronger but she still fights nausea and is develping terrible mouthsores. It is normal and expected but excrutiating. On Thursday we were surprised to get notification that we were being sent for a chest X-ray. Apparently every sarcoma patient gets one every month. Friday the doctor interpreted the results for us. He made clear that X-ray is a very crude tool and that he wasn't expecting to see anything. It is really a check for new pulmonary spread and to see the state of the lungs. It just happens that Taylor's tumor is in her chest and visible. He found that there are no new nodules which means we have arrested the cancer. He can't really see if the tumor has shrunk but he can see that it is denser. This is good news in that it means the tumor is being killed, (kind of imploding) and forming a hard shell on the outside. Any good news is welcome. Surgery is still scheduled for either the week of the 11th or the 18th. |
| Date: July 10, 2003 - 11:00 PM
Journal: She came home today with her IV!! She ate a little and drank a little. I think she did it just to get discharged. It's her first food in 3 days. If you don't eat and drink you have to stay. By tonight she felt like watching some TV and reading. You can tell she is feeling better when she wants "scratch off" lottery tickets. I buy $20 at a time... she wins 8$ and tells me we're winning. Then she spends the $8 dollars on more tickets. For those results I could put it in the market!! We're starting to look forward to the weekend. |
| Date: July 9, 2003 - 05:25 PM
Journal: There isn't much to say about the last two days of chemo except that if it does this much damage to Taylor, if must be reeking havoc with the tumor. We are praying. I don't know how she does it but she keeps plugging despite the torture. The port works again and she should start to feel a little better each day. |
| Date: July 8, 2003 - 03:25 PM
Journal: Monday was pretty tough. This is the most difficult cocktail that Taylor receives. She will experience nausea, vomiting, and extreme fatigue for the next few days. They give it to her tomorrow as well. Yesterday was unsually unpleasant because they discovered that the mediport in her chest was compromised and unuseable. It turns out that Taylor is allergic to the tape that secures the port and they need to let it heal. They were forced to do it by IV which means a very large catheter tube in two different places and a somewhat painful and manual administration. She slept from about 8:30PM 'til 7:15AM and then went back this morning for more. The rest of the week is recovery. |
| Date: July 6, 2003 - 10:40 PM
Journal: Sunday was a nice day but she has been fighting terrible mouth sores in her throat all weekend and we're hoping she can actually get her medicine on Monday. If the sores are too inflamed from last week she can't get more. Sometimes in the evening when she just can't take it any more, she just gets really angry. So do we. Mom had the answere this time...egg fight.!! A dozen and a half eggs were thrown, stomped, golfed and broken on mommy and daddy. One day at a time. |
| Date: July 5, 2003 - 08:20 PM
Journal: Friday was a big day! Taylor went shopping for Lucky and got EVERYTHING. Then she biked over to Nana's house and went swimming. Later we went to the Apawamis July 4th carnival and fireworks with the Ingrassia clan. What an extravaganza! On Saturday she's going tubing with her cousins and having a sleep over. Monday's chemo is around the corner and in typical Taylor fashion she is getting everything she can in now. |
| Date: July 3, 2003 - 07:45 PM
Journal: Tales did get home early after very good blood numbers. Her friend Carrie came over to see the puppy. |
| Date: July 3, 2003 - 09:15 AM
Journal: And the answere is... a Cavalier King Charles Spaniel! My assistant, Erica, recommended the breed and the breeder and Taylor jumped at it immediately. Tentatively named "Lucky", HE is a tricolor, (black, white and patches of gold around the face and eyes), and 11 weeks old. Puppy poop and crate training here we come. Taylor handled the chemo much better this week and was up for an all day clinic visit yesterday from her friend Laura. If her numbers are good this morning, she could go home by early afternoon. Lucky will be thrilled. |
| Date: July 1, 2003 - 10:00 PM
Journal: Today went much better. Tales felt less nauseous and was enjoying a visit at the clinic from some family friends. Her toxicity levels were better than target so she is heading home for the evening. By the way, yesterday she got a package from Britany!..a T-shirt and autographed poster. I asked Taylor for the poster. |
| Date: June 30, 2003 - 10:50 PM
Journal: Today we were back at the rock pile. Monday began the second week of our three week "back to back" treatment. She was terribly nauseaous and had trouble holding things down. They try to keep the toxicity up for the first day and then tomorrow they will start rescue with fluids and protective drugs to detox her. Our Taylor is no dummy. She used the occasion of this round of chemo to talk us into a cuddly,little, lap dog! We're hunting for just the right one. I hate squeeky ,little lap dogs! |
| Date: June 28, 2003 - 05:05 PM
Journal: Friday was a big relief. No clinic, and Taylor slept late. She had visits from friends, (Allie, Jenny and Lauren) and in the evening had her first sleep over since this whole thing started with Laura and Tammy. In the morning Taylor felt up to some fun so we set up the "slip and slide" water slide in the back yard. They had a blast! Take a look at the picture! |
| Date: June 26, 2003 - 10:00 PM
Journal: Today finished very nicely. After a morning in clinic fighting the nausea, Taylor's toxicity numbers plummeted to almost normal and she began to feel better. She was home in time for dinner. When she checked her cell phone for voicemail, she had a message from Brittany Spears! A colleague from work, Rich DiVenuto, arranged for the call. Brittany then asked for the address to send something to Taylor. She still can't believe it was really THE Brittany. Then things really turned up. Rayna Shapiro, (our school psychologist), stopped by with an unbelievable gift. One of our neighbors, Jennifer Darger, arranged for all the kids in Taylor's class to draw pictures and write messages to Taylor on small squares of cloth. Jennifer then turned all of those wonderful squares and some beautiful fabrics into an exquisite home made patchwork quilt of get well wishes...so her friends could wrap her in love!! Take a look at the picture below! It's going to be a good weekend. |
| Date: June 25, 2003 - 09:45 PM
Journal: Today I stayed with Taylor while she was in clinic. Sue took the other kids to the camp bus. It was a big day because yesterday her toxicity level from Monday's chemo was very high and we were also low on hydration and purging of the chemicals. They took blood early, pushed IV and fluids and monitored her output. She fought the nausea all day but by the afternoon we got the numbers we were looking for. She dropped well below the target for today and if all goes well tomorrow she will get Friday and the weekend off. |
| Date: June 24, 2003 - 10:00 AM
Journal: Yesterday was rough. Taylor started in the clinic early in the morning and they kept her most of the day. This chemo cocktail is very toxic and is left in her system overnight so she can't drink for fear of diluting the chemicals. She had some nausea and vomiting and is totally dragged out, but this morning she was up and out the door by 6:45 and on the way to clinic again. Today and the rest of the week are "rescue" days when they try to wash the chemo drug out and help restore the good cells with various medicines and vitamins. One day at a time. |
| Date: June 23, 2003 - 08:20 AM
Journal: Well, last night Talylor made another tough decision. After showering she saw even more of her hair fall out, leaving a thin and patchy scalp. So in typical Taylor fashion, she told me to cut it all off. 45 minutes later, we had cut her hair short and shaved her head smooth. She looks cute and feels good about it. She's even pretty when she is bald! From now on she'll wear hats, and her new wig...or just go "au naturale" Today, more chemo. We're killing cancer cells! |
| Date: June 22, 2003 - 11:42 PM
Journal: Last night Corey had her birthday party at Go Vertical, an indoor rock climbing gym. The party was a big hit and Corey was a star climber. Guess who else climbed the toughest walls? You got it. Anything that looked scary, Taylor had to do. She also made it to her friend Tammy's party. Today we help Corey celebrate her real birthday and tomorrow Taylor starts another round of chemo. She's ready. |
| Date: June 21, 2003 - 12:40 PM
Journal: Taylor had a blast at the party! What a nice way to say so long to Seeley and hello to the High School. We posted a picture. Today she is going rock climbing at a climbing gym. Can you believe?! |
| Date: June 20, 2003 - 09:30 PM
Journal: The end of a good week. Ya gotta love this kid. Taylor started losing a little of her hair on Thursday and today she really started to notice a big difference. She was a little concerned about the 6th grade graduation party and looking funny so....she went to the mall for a new outfit, tried on her new wig and decided to go with a bandana over her real hair. It was alot easier because she has great friends,(and great parents of friends). Several Moms worked all afternoon on a way to make Taylor feel more comfortable. All HER GIRLFRIENDS WORE BANDANAS TOO! |
| Date: June 19, 2003 - 05:10 PM
Journal: Yesterday was proof Taylor is getting better if a little stranger! Taylor's math teacher, Mr. Cass, very generously came over to help Taylor catch up on missed school days. Not only did Taylor make it through an hour and a half of math tutoring but did over two hours of homework VOLUNTARILY! By the way, want another good reason to feel good about our schools?; how about teacher dedication?! We have a big weekend coming up with Corey's birthday party, games, and a friend's party as well...and Tales can do it all based on her strong recovery from the first Chemo! |
| Date: June 17, 2003 - 08:20 PM
Journal: Taylor feels better every day and is making the best of her "week off". Today she made snow cones and slushies in the kitchen...don't even ask. She also received a special gift from her friends Mariko, and Kaho...a thousand paper cranes!!! That's right, 20 strands of of 50 hand made oragami paper cranes strung together; a herculean effort which we will put on the pictures page tomorrow. In Japan there is a legend that if you fold a thousand paper cranes, your wishes will come true. Mariko's family and Kaho's family wished for Taylor to be well again. Case closed! |
| Date: June 16, 2003 - 03:03 PM
Journal: Today was a really good day. Taylor got to be part of the class picture. The kids even applauded when she came over. Those are nice kids you all have! Later she went to clinic and they told us that Taylor's numbers are really good. Her counts are all normal or approaching normal. She can even drop one of the daily shots for now. No more clinic visits until her next dose of chemo on Monday morning. |
| Date: June 15, 2003 - 10:30 PM
Journal: The Benza Racing Team, very special friends of the family, got her on a Nationally televised racing telecast,(NHRA)!!!. We updated the pictures. Click on TAYLOR's PICTURES below. |
| Date: June 15, 2003 - 08:05 PM
Journal: Taylor had a nice day as we all celebrated Father's Day by putting up a hammock which is purported to be for me. I'll let you know after I get a turn. Yesterday she won a game of PIG in a basketball shoot around in the driveway. Not bad for an invalid. Sorry for the false alarm yesterday. They never did announce that they were dedicating the game...but it is just as well since they LOST. Hey it was the first game we ever watched and I think Taylor is hooked. Tomorrow we're ging to try to sneak her into the class graduation picture before she goes to clinic. SHHHHHH! FYI check out the link to the pictures. |
| Date: June 14, 2003 - 12:05 PM
Journal: Friday was a big day for Taylor. She felt a little better and had a COOOOL visit. Our friends the Travins arranged for a visit from two stars of the New York Liberty women's professional basketball team. Taylor got an autographed team ball, T shirt and other goodies. We took several pictures that should show up on our web site soon and THEY TOOK PICTURES TO PUT ON THE LIBERTY SITE!! BETTER YET, the Liberty told Taylor they would dedicate today's televised game at 4:00 to Taylor before the game!!!!!! Tune in and watch. We will. On the health side she is feeling much better. We have to be very germ conscious because she is at a low point on white count, but she is up and around and beginning to return calls. Thanks for all the cards and calls. It helps. |
| Date: June 12, 2003 - 02:05 PM
Journal: Today was another clinic day and Taylor's numbers were pretty good. So if she doesn't show any symptoms of low counts, she doesn't have to go back until Monday. She's on orders to keep up her fluid and food intake but that seems manageable. |
| Date: June 11, 2003 - 10:50 AM
Journal: Little by little, Taylor is feeling like Taylor. Please don't be discouraged if you have called and she doesn't respond. She just feels terrible and sleeps alot. The secondary side effects have kicked in. She has intense pain when she swallows since the medicine makes sores form in her throat. Even water burns. As you would expect, however, she used milk and pain medicine to mute the burning and tried to keep her intake up. She needs to hydrate and eat to remain an outpatient. Today she feels a little better and is making some calls. We're getting there. |
| Date: June 9, 2003 - 11:00 AM
Journal: Today is Taylor's first day of clinic. Mostly blood tests and checking the incisions. She's still very tired and queezy but she had a little bit of breakfast before leaving for the city. Our new "Mother's Helper" started today. Her name is Kristen. She will be helping out with errands, the house, driving etc. Kristen will be finishing her final semester at Quinnipiac this fall. She will be on duty Mon-Fri, 7:00 to 7:00. The kids love her already. |
| Date: June 8, 2003 - 05:10 PM
Journal: She's Home!! Taylor is still battling nausea and fatigue but she is home and resting comfortably. The hospital inserted a very small tube in her arm so that her two shots per day don't have to involve being stuck by the needle. They just go into the tube. Monday Taylor goes back to the Sloane clinic for tests and the begining of outpatient treatment. She will be going there several days each week for the next six months or so but at least she will sleep at home most nights. Thank you for all of the warm thoughts, calls, gifts and food. Our house looks like a cross between FAO Schwarz, Candy Land and Grace's Market. |
| Date: June 7, 2003 - 11:35 PM
Journal: Saturday was another tough day. Taylor fought the nausea all day despite the heavy duty anti nausea drugs. As you would expect, however, she kept at it and managed to hold down clear liquids by this evening and even attacked a popsicle. We're still holding our breath for Sunday discharge. |
| Date: June 6, 2003 - 11:55 PM
Journal: Taylor had a rough day following her first dose of chemo. She was sick and sleepy most of today. It was a war between the worst nausea causing chemo and the most powerful anti nausea drugs. It was a seesaw battle fought to a draw...Then we gave her the second dose of the drugs! Tomorrow should be another tough day and then we look for enough recovery to bring her home. We're hoping for Sunday. She got fitted for her fist wig by her friends at "The Salon". The next round of chemo doesn't start for two weeks and then it is back to back weeks of 4 straight days. Say a little prayer. |
| Date: June 5, 2003 - 10:30 PM
Journal: Taylor got her bone scan today which was clean other than the main tumor. She got her first dose of chemo and did beautifully. She is tired but resting comfortably. We're happy to start to play some offense! She gets powerful anti-nausea drugs to help her deal with it. One more dose tomorrow and then she just has to recover enough to come home. As luck would have it, Taylor qualified for the trial of a new drug being tested nationwide and initated in the Sloane-Kettering labs. The research is only for kids with her situation and is a promising treatment that improves on the cancer killing results from chemo alone. If her sample proves eligible she will begin treatment with that drug as well in a couple of weeks. She now has a cell phone,(graduation present), and can receive and make calls from bed. |
| Date: June 5, 2003 - 07:00 AM
Journal: Wednesday brought a slight delay. Taylor's Mediport was in need of repositioning so she went back to the OR. She will now start her chemo today,(Thursday). She is sore and groggy but doing fine. Taylor has been in a step down unit for the last two days so if you called her she couldn't answere. If all goes well, she could be home before the weekend is over. Her chemo will be on an outpatient basis. |
