Tuesday, March 13, 2007

Katie will be a two-year cancer survivor on March 19th!!! We are so excited to be able to celebrate this milestone.

If you have the opportunity, pick up a copy of the March 27th issue WOMAN'S WORLD magazine (on newstands for one week beginning March 20th). There is a story about Katie's cancer journey and recovery, and how her cookbook is helping other kids with cancer. There are lots of photos in it, too. We hope you have a chance to read it. More info is on our web site http://www.katieswish.com

Please take a moment to leave Katie a message in her guestbook. She loves to read her mail! Thanks!!

Many blessings to all,
Patty

Happy Holidays 2006!

What a year we’ve had!! In March, Katie became a 1-year cancer survivor! We celebrated with the release of her cookbook, Katie’s Cooking!, and a spectacular party generously hosted by Savona Restaurant in Gulf Mills, PA. Savona opened their doors on a Sunday evening to toast Katie and her cookbook. Chef Andrew Masciangelo’s food was wonderful!! The guests enjoyed food stations on each floor, butlered hors d'oeuvres along with many different wines. There was an estimated 200 people that came out to celebrate with us. We are so grateful to Savona for their generosity! We are equally grateful for the generosity of everyone who donated their time, and for all those who donated space at the many craft fairs, events and stores to help us sell Katie’s cookbook! THANK YOU!

Since the release of her cookbook, Katie has autographed books at several restaurants and at The Book and the Cook Culinary Showcase. Her story was featured in several newspaper articles and on the evening news. She was a guest on a talk radio program, and did a cooking demo on the 10! Show. Katie even met a few more celebrity chefs who donated recipes for her book. She is very proud of what her book is doing to help other kids with cancer.

Katie is in 1st grade and loves going to school! Her after-school activities include Science Club, Brownie Girl Scouts and Jazz dance. Katie loves to read chapter books, ride her scooter with her friends, help with cooking or baking, and is always creating some sort of artwork that she shares with family and friends. She continues to go for her monthly blood draws, and her health has been good.

Kyle attends pre-school. He loves playing with trains, cars and trucks, and riding his tricycle with his big sister. He also enjoys books, painting, play dough, and taking things apart. He adores his big sister and wants to do everything she is doing. Kyle is fascinated with tools and likes to help John ‘build’ or ‘fix’ things whenever he can.

Every time we turn our Christmas lights on, Kyle yells: “Hooray! It’s Christmas again!” With Kyle’s curiosity and love for collecting things, we’re having trouble keeping ornaments on our tree. He’s also been quite helpful to Patty – by opening presents that have been wrapped as gifts for other family members or unraveling rolls of ribbon to decorate the furniture.

John has been VERY busy working on expanding/remodeling the kitchen and re-doing the deck to flow with the new kitchen. It’s a lot of work for one person to do, and is taking longer than he hoped. But, the plans are fabulous! It will be well worth the wait.

Patty is still a stay-at-home mom and has been busy selling Katie’s cookbooks at various craft fairs and events, volunteering at both kids’ schools, making fun soaps for kids (her hobby du-jour), and doing free-lance design work.

Life is pretty much back to normal again – and we’re loving every minute!!

Wishing everyone a happy and healthy New Year!!

August 15, 2006

Katie is now a 17-month cancer survivor!!!

Oncology visits
Katie had her July and August CBCs -- all of her counts were in normal range! Next month she goes for a full work-up and we'll discuss her issues with pain.

Catching up on childhood illnesses
This summer has not been too kind to Katie. Each time she recovered from one illness, another one emerged. After her bout with HFMD, she was fine for a week or so and then came down with strep. A few weeks later, she had another strange rash and low-grade fever. She's been bruising a lot, but it seems to be in areas that are not of concern with her doctor.

Vacation at the shore
We enjoyed a week at the Jersey shore -- fun in the sun, beautiful sunsets on the bay, rides, boardwalk, swimming, good food -- and best of all, very relaxing!

For the first time since before Katie was diagnosed with ALL, we are finally enjoying ourselves again!!!

June 20, 2006

Katie is now a 15-month cancer survivor!!!

Kindergarten graduation:
Katie graduated from Kindergarten on June 9th. The ceremony was really nice. Katie said that she was really nervous before she walked down the isle, leading her class to the front of the church. When she started to sing, she said wasn't nervous anymore. Katie poured her whole heart and soul into the songs and poetry.

It was a very special night for John and I. A couple of years ago, we weren't sure if Katie would even be here. Watching her signing and enjoying herself was such an incredible feeling!! We are so blessed!!!!

georges':
The cocktail party and fundraising dinner on June 14th at georges' in Wayne was a really fun night. Katie artistically signed several books that were sold that night. There was a nice turn-out for dinner. We all had a fun night. We will post the money donated by georges' in events as soon as we get a total. Many thanks to everyone who came out to support us!!!

Oncology visit:
Katie had her #15 OT oncology visit today. She had her monthly CBC and physical. Her counts were all in normal range and she continues to do very well!!! Katie is still experiencing pain in her legs, hips and back. We are now keeping a detailed log that we will review with her oncologist at next month's visit.

Rashes:
Katie had a rash on her arms and face that I thought was a heat rash. After returning from lunch after her oncology visit, Kate complained that her feet hurt. She had a rash all over her feet, hands and buttocks. I took her to the pediatrician who said she has hand, foot and mouth disease (HFMD). Fortunately she didn't have the mouth sores that often accompany the rash. Her pediatrician feels she probably caught it from someone at the pool. HFMD is contagious so we are to keep Katie away from other kids for a few days. The rash on her face and arms are probably a heat rash.


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June 22, 2006 --

HFMD update:
Katie ended up with a fever and blister-like sores all over her feet and hands within 24 hours of seeing the pediatrician. She experienced a great deal of pain in her knees, lower back and hips that prevented her from wanting to play. She laid on the couch wanting to be cuddled most of the day on Wednesday and seems to have improved a bit today.

May 30, 2006

Katie is now a 14-month cancer survivor!!!

Katie had her #14 OT onco visit on Tuesday, May 16th. She had her monthly CBC and her counts were all in normal range!!!

Katie has been selected as a level-one (store-level) winner in the Kohl's Kids Who Care® youth volunteer recognition and scholarship program with the work she has done with her cookbook!! The program recognizes and rewards young volunteers (ages 6-18 years old) who transform their communities for the better. Her nomination is now in consideration for regional and national scholarship awards!! We are so proud of Katie and all her hard work helping other children living with cancer.

KATIE'S COOKING! is number one on the cookbooksforsale.com web site! We are very excited to be top on the list. Being on the top 5 list gives our cookbook great exposure on the web with cookbook enthusiasts!!

April 19, 2006

Katie is now a 13-month cancer survivor!!!

Katie had her #13 OT onco visit on Monday, April 17th. Her CBC came back with an elevated white cell count and ANC. Her platelets and red blood cell count were in normal range. We are hoping that she is just fighting a bug. We will keep a close watch on her for any other signs that something could be wrong.

Katie’s Cooking!
Katie and her cookbook have been in the news several times over the past week. To link to the newspaper, radio and TV articles and stories, please visit: IN THE NEWS on www.katieswish.com

At the 10! Show, Katie and I were waiting to get into "make-up" and we saw Katie's swim instructor, Justin, getting into the Camden River Sharks mascot costume. He was going on before us. Katie got a kick out of seeing someone she knew who was going to be on the show the same day.

All the attention this past week has not phased Katie a bit. She was a little nervous and shy during all the interviews, but has been enjoying the experience.

The exposure has been great for sales. We are happy to announce that the first printing of the cookbook has sold out! The second printing is expected in mid-May. We are not sure at this point if it will be in time for Mother's Day. Please check back to our web site in early-May for more information.

Please remember all children diagnosed with cancer in your prayers. It is a long and difficult battle for the children and their families, and every prayer helps. Many thanks for your continued prayers for Katie.

Friday, March 31, 2006

Katie became 1-year-survivor on March 19, 2006!!!!

Katie finally hit one of the big milestones after treatment ends —1-year of EFS (event-free survivorship)! She had a full work-up at her last oncology appointment getting a CBC with differential, liver function test, EKG, echocardiogram, 24-hour holter, urinalysis, physical, etc. All is as expected. Thanks to the orthotics and her swimming classes, there is a noticed improvement in her strength and balance since her last physical in December.

John and I are also very proud of Katie’s academic progress. She got her progress report from school last week and it said that she is above grade level in Math and Reading! With all the chemo she had, there is a possibility of it affecting her cognitive abilities. We are so happy that there are no signs of that yet. We’ll keep praying that this continues.

Katie’s 1-year party and cookbook kick-off....
Chef Andrew Masciangelo, Executive chef of Savona Restaurant, was honored when asked to participate in Katie's cookbook. Savona opened their doors on Sunday, March 19th to toast 1-year of survivorship for Katie and her cookbook. The restaurant normally closes at 2pm on Sundays. The entire restaurant was opened for this celebration.

The food was spectacular!! The guests enjoyed food stations on each floor, butlered hors d' ovures along with many different wines donated by the Wine Merchant in Ardmore/King of Prussia. There was an estimated 200 people that came out to celebrate, and purchase cookbooks that were signed by Katie. The event was covered by NBC (channel 17 at 10pm and channel 10 at 11pm).

What a wonderful way to start a new year for Katie. We can’t thank everyone at Savona enough for hosting such an incredible event! And, thank you to everyone who came out to celebrate with us!

Katie’s Cooking!.......
CN8 (the Comcast network) let us use their booth at The Book and the Cook Culinary Festival on March 25th. Nani watched Kyle all day so we could do our thing at the tradeshow. Katie was signing books, her cousin Samantha, Aunt Annie, and Mom-Mom and Pop-Pop helped hand out flyers and sell the books. My dear friends Terri and Bob helped draw people to our booth. It was a really fun day! Many thanks to CN8 for letting us use their booth, and for everyone’s help!!!

We received 500 of Katie’s cookbooks on March 9th, and began packaging and shipping the pre-paid books the next day. Over the past 3 weeks, as people picked-up their books or received them in the mail, more and more orders have been flying in. We are almost sold-out!!! We’ve already put our re-order in and are expecting the books to arrive the first week in May.

Here’s what’s coming…
April 1, 2006 - 5:00 to 6:00pm -- Live on the air with Celebrated Chef Michael Gilletto, MCFE, FMP. We will be talking about Katie's Cooking! with Chef Michael Giletto during his culinary radio talk show on WNJC 1360AM - Philadelphia's Renaissance Radio Station.

April 14, 2006 - 10:00 to 11:00am -- 10! Show on NBC10. Katie will be on the 10! Show on Friday, April 14th whipping up her favorite recipes from Katie's Cooking!

There are several other things in the works. As soon as they are scheduled, we will let everyone know. You can always check our web site for the latest info on events and happenings. http://www.katieswish.com

Changes to our web site....
We have had a few emails sent to us recently that were a bit unsettling. Just to protect our privacy, we have restricted access to the journal entries and photos on our web site. The Katie’s Wish web site will be strictly for our organization with information about childhood cancer, fundraising events, and the cookbook. http://www.katieswish.com

It’s unfortunate that this had to happen. When we have photos to share, we will email a link to our family and friends so you can see them. We will continue to share our journal entries, some photos and the guest book on Katie’s Caringbridge site.

Many thanks for your continued prayers for Katie. Happy Spring!

Hugs,
Patty

Tuesday, February 21, 2006

Dietician appointment....
Katie went to see a dietician a few weeks ago. We were given some tips on helping her eat less calories — not necessarily healthier. I don’t feel that giving a child who had cancer —or any child for that matter--“diet” food filled with artificial sweeteners and all kids of crazy chemicals, is a good idea. I had explained that many kids treated for ALL (acute lymphoblastic leukemia) end up having a weight problem. The dietician hadn’t dealt with any kids treated for cancer. She didn’t seem to think there was much of a concern with the extra few pounds Katie has. We were told to just weigh her every month and see how things go. If Katie’s weight continues to grow faster than her height, we will look for a dietician that has experience with kids who have been treated for ALL.

Katie in school and extracurricular activities.....
When we received Katie’s report card several weeks ago, she was doing outstanding in school!!! She joined the reading club at school and finished the all books for the year in early January!! The one area that she did not do well in (if you compare her to the other kids) was in PE. At first, she was very upset that her PE scores were below average. John and I explained to her that her muscles are still recovering from all the chemo she had. She knew that she has been improving a great deal and that she can do many more things than she used to be able to do. I told her that every three months when she goes for her full check-up, Dr. Julie will tell you how great she is doing. She asked me why her PE teacher didn’t know that she was improving. I told her that I had never told her PE teacher that she had cancer, so he didn’t know all the things she had been through. I guess I never thought about her being graded in PE or how she would react to it. I need to speak with her PE teacher and find out how they base their grades. She will probably never be as fast the other kids. And, comparing her to the other kids in this area could shy her away from wanting to try harder.

Katie is now taking 2 swimming classes a week and is doing very well. She wants to try tennis and cheernastics (cheerleading, gymnastics, and dance combined). She is also very interested in learning to play the piano and guitar. John and I are supportive of any activity she wants to try. We’re going to let her do a few tryouts before we sign her up for anything else. She is so excited about everything — school, swimming, reading, music. I just love her enthusiasm and attitude about life!!

#11 OT appointment.....
Katie had her #11 OT appointment with the oncologist on Tuesday, February 21. Her CBC was normal! She returns in a month for a CBC with differential, liver function test, urine analysis and physical. After March 19, 2006 she will be a 1 year survivor! Go Katie go!!

It’s hard to believe that it has been a whole year since Katie had her last chemotherapy, and that in less than a month she will be considered a “1 year survivor”. We are so proud of her!! This is a huge milestone for anyone who has been through cancer treatment. We hope that everyone who reads this update will share in our joy and take a moment to sign Katie’s guest book.

Please continue to keep Katie in your prayers.

January 17, 2006

Katie is now 11 months OT and a 10 month survivor!!!

Katie had her #10 OT appointment with the oncologist on Tuesday, January 17 which included a CBC. Her counts came back normal! She returns in February for another CBC.

Katie started swim lessons at a new place last week. She LOVES it! In just two lessons, I’ve noticed a huge improvement in her confidence, form and strength. In a few weeks we will add a second swim class for her so she will be going twice a week.

Cookbook Update
We haven’t received a delivery date from the printer yet. As soon as we have a date, we will let everyone know.

In the next week or two, we will have the online ordering set up so we can accept orders with credit cards. Please check our web site www.katieswish.com for more information.

Once again we would like to thank you for your continued prayers and support!

Hugs,
Patty

January 3, 2006

Happy New Year!!!

The days following Katie's last oncology appointment were probably some of the more stressful days we've had since Katie's diagnosis. Although Dr. Leahy told me not to worry about her while blood cell (WBC) count in her last CBC, they are haunting me. As many of you know, Katie was diagnosed on Christmas eve three years ago. And here we were, a few days before Christmas, and her WBC count is elevated -- which is one thing that could indicate leukemia being present.

Since Katie's diagnosis, John and I tend to overdo it with Christmas for the kids. Starting with the day after Thanksgiving (which is around when Katie started showing signs of serious illness in 2002), the decorations come out and the holiday music starts playing. We try to make each day the week leading up to Christmas an event at our house, with the Christmas movies and music playing, cookies baking, and the kids making ornaments for our tree. The inside of our house turns into the Griswold's at Christmas! The kids love it, and the house is filled with the joy of Christmas.

This Christmas was different. The cookbook didn't to go to print until almost mid-December which held up my Christmas shopping and decorating. A week later, I pinched a nerve in my neck which made it difficult to finish decorating, and wrap gifts. Then Katie got sick with a VERY high fever complete with hallucinations, a nasty cough, and then an ear infection in both ears. They Kyle and I caught whatever she had and we were all on antibiotics. Katie missed a week of school and wasn't up to making the decorations for the tree or helping me bake. She just laid on the couch watching movies and sleeping. The whole thing put John and I in a 'weird worrying funk' with flashbacks of Christmas 2002.

Katie looks and feels MUCH better, as do Kyle and I. Although we didn't get to do most the things we wanted to do over the past couple of weeks, we all enjoyed Christmas.

Being on treatment is very stressful and being OT has it's own kind of stress that's just as tough at times. It does get better and easier as each month passes, until something like the abnormal CBC with a high white blood cell count happens. It's hard to explain the feelings and thoughts that immerge, but I know those who have been where we are know what I'm talking about.

Here's to a new year filled with joy, good health, good CBC's and no stress!!!

December 21, 2005

Katie had her #9 OT appointment on Tuesday, December 20th which included a CBC and physical with Dr. Ann Leahy and Pattianne (the NP). Katie wasn’t feeling well — fever of 102, cough and chills — which was reflected in her CBC. Her blood counts were: WBC = 14.3 (normal range is 4.0 – 12.0), PLTs normal, Hgb normal, and her ANC was 10,868 (normal range is 1,500 – 8,000). Dr. Leahy said that since Katie is not reached the 1 year survivor mark, she will continue to feel illnesses longer and harder than kids who haven’t gone through treatment. So a typical cold that would last a couple of days for a “normal” kid will last for a week to 10 days for Katie, her fevers will be higher, cough will be more severe, and her aches and pains more intense.

After looking her over, both Pattianne and Dr. Leahy said that whatever she has is going to get worse before it gets better, and that I should consult with her pediatrician if I suspect her ears and lungs are being effected. Boy were they right! By the afternoon, Katie had spiked a fever of 103.5, was vomiting, and was complaining of a backache and severe headache. I called Katie’s pediatrician to see what I could do for her. They were really not much help. After waiting 4 hours for them to call back, I spoke with the nurse because the doctors were not available. She went through the basic “to do’s” for fever and vomiting, and suggested ibuprofen (which Katie is not allowed to have). I explained that we are “in transition” with Katie being OT but not a year OT. She had never dealt with a child who had cancer and didn’t know how to answer my questions. Calling the oncologist on-call at CHOP wasn’t an option because again, she is OT and no longer has port. John and I spent the night, waking every couple of hours to tend to Katie. She’s still running a high fever and isn’t able to eat. If this continues, I’ll take her to the pediatrician tomorrow.

During Katie’s onco appointment, Pattianne checked her balance and strength. Pattianne noted a great improvement since her last physical 3 months ago! Dr. Leahy recommends that Katie continue to swim and take ballet, gymnastics or Karate classes to help boost her balance and strength even more. We discussed seeing a dietician as many kids end up with weight problems and eating issues after going OT. Katie’s appointment with the dietician is at the end of January.

I mentioned my concern about Katie’s back and hip pain. I am to keep a log as to when it occurs and the activities Katie is doing before or during when the pain starts (after this illness passes). Many kids who are cancer survivors experience chronic pain. I will call Katie’s Orthopedist (Dr. Dormans) to find out his thoughts on the pain Katie is experiencing and possible connection to her osteopenia from the leukemia and steroids, and the compression fractures she had at diagnosis. Hopefully he can shed some light on her pain and how to deal with or treat it.

We can't thank you enough for keeping Katie close to your hearts and in your prayers. Please continue to pray for her and for all children who battle cancer. Wishing you all happy holidays and a healthy 2006!

Happy Holidays 2005

Dear family and friends,

This past year has been full of joy and thanksgiving for us. Christmas eve will be the 3rd anniversary of Katie’s diagnosis of acute lymphoblastic leukemia (ALL). Katie has remained in remission since New Years day 2003!! She went off treatment (OT) in February -- she no longer has to take any medicines or chemotherapy drugs!

Katie has monthly visits to her oncologist for complete blood counts (CBC) and other tests. Katie is still experiencing effects from some of the chemotherapy drugs she had while on treatment. She has fatigue in her legs and weakness in her ankles. Katie went to physical therapy for a few months. She has an exercise routine that we do at home, and wears orthotics. They help relieve the fatigue so she can walk and run without tiring easily. Katie is also experiencing chronic back and hip pain which we will address again with her oncologist.

We celebrated the huge milestone of Katie going OT with a party given by the Kisses for Kyle Foundation which offers financial help to families who have a child being treated for cancer. Our immediate family and some of Katie’s friends were treated to a feast by Cater To You, pottery painting, music, games and balloon animals. Katie said it was the best party ever!

We also celebrated with a trip to Disney World given to Katie by the Make-A-Wish Foundation which grants wishes to children with life-threatening illnesses. We were guests at Give Kids the World Village, which is a special place for kids whose wish is to go to Disney World. The Village is run completely from corporate and private donations, and isn't associated with any of the parks in Orlando. There are around 90 staff members and over 900 volunteers!!! Every one of the 92 wish families that they house, had their own villa and rental car. Katie was given a special pass that got us into the rides and attractions at the Disney World parks without waiting in line! It also allowed her to have private photo/autograph sessions with the characters!

While we were in the Village, we went horse back riding, went to a birthday party for Mayor Clayton (the big rabbit who runs the place), celebrated Christmas with Santa, played in the arcade, raced motorized boats, went swimming, played in the water park, went on the Carousel, and even went on a train ride and an evening carriage ride around the Village. There was a huge interactive model train set-up and Ole Elmer (the giant snoring tree) that Kyle really loved. We ate many of our breakfasts and dinners at the Gingerbread house, which is filled with hundreds of vintage toys. Everyone’s favorite place was the ice cream parlor where we could get all the ice cream we wanted, when we wanted!! The whole trip was truly magical!!

Having a child with cancer had a profound effect on our lives. In April of this year, John and I started a non-profit organization called KATIE'S WISH. Through our web site -- www.katieswish.com -- we provide families with valuable resources and links to general information about childhood ALL, survivorship issues and related topics. We also share information about local and national events that help children living with cancer and their families. Since the launch of the KATIE'S WISH web site 8 months ago, we’ve had over 22,100 hits to our web site!!

Our fundraising efforts assist charitable organizations that help families who have a child living with cancer. In the Spring, Katie held her first lemonade stand to benefit Alex’s Lemonade Stand Foundation for pediatric cancer research. She hopes to do one again next year. In October, over 65 people joined our team for the Leukemia and Lymphoma Society’s nationwide Light the Night Walk, where I gave a speech at the opening ceremony. Our team raised $3,189.00 to help fund blood cancer research. Throughout 2005, our online childhood cancer awareness shops have been raising money for Gilda’s Club Delaware Valley, which helps families effected by cancer.

To commemorate her going off treatment, Katie wanted to create a cookbook to help other kids living with cancer. The response was overwhelming!! KATIE'S COOKING! a cookbook celebrating life after childhood cancer has over 780 recipes from more than 80 celebrity chefs and TV personalties, restaurants from around the country, national magazines, food companies, culinary schools, family and friends who have graciously donated their favorite recipes. The cookbook, which will be available in early 2006, will benefit The Children’s Hospital of Philadelphia Division of Oncology, Kisses for Kyle Foundation, and Gilda’s Club Delaware Valley. We extend our gratitude to everyone who donated their recipes, time, and money to help make this project possible.

Sandra Lee, host of the popular Food Network show Semi-Homemade with Sandra Lee, and NY Times Best-selling author, was touched by Katie’s story. Sandra wrote the introduction in the cookbook and helped us get recipes from Rachael Ray, Emeril Lagasse and some others! In September, Sandra invited Katie to NY City to meet her. We spent some time chatting in her hotel lounge and then Sandra took us to the Central Park Zoo. It was a really fun day!

Katie will celebrate her 6th birthday this coming January. She enjoys swimming, ballet, reading and cooking, and loves going to Kindergarten. Kyle is a typical 2-year-old boy who is always on the go. He loves playing trains and making messes every chance he gets. They both give John and I so much joy!

On behalf of John, Katie and Kyle, we thank you all from the bottom of our hearts for the ever present support you have shown for Katie, our family and KATIE’S WISH. Please continue your prayers for Katie, that each day brings her closer to being cured. We wish you all the happiest of holidays and a healthy 2006!

Much love,
Patty

Wednesday, November 16, 2005

Katie is 9 months OT and an 8 month survivor!!!

Oncology appointment:
Katie had her #8 OT appointment for a CBC on Tuesday, November 15th. All of her blood counts were in normal ranges -- always a relief when I get this news. I’ve been a bit concerned with Katie’s increased fatigue, but it’s probably from being at school for 7 hours a day, 5 days a week. She’s also been taking swimming and ballet classes after school, which I’m sure are adding to the fatigue as well.

Katie is still complaining of pain in her back, hips and legs. The pain comes and goes at various times of the day and night. I haven’t been able to connect the pain with any particular activity yet. There was an article in the recent Candlelighter’s Childhood Cancer Foundation’s newsletter about chronic pain in childhood cancer survivors. I’ll have to re-read the article and consult with Katie’s oncologist at her December visit, when she will have a CBC, urinalysis, and a physical.

Physical Therapy:
Katie has been going to PT once a week over the past month. She has new permanent orthodics that she wears in her shoes. Per Katie’s request, the ordodics we made with pretty pink and purple flowers and a pink strap (very girly girl!!). The orthodics help relieve the fatigue in Katie’s legs caused by the vincristine (chemo) that weakened her muscles while she was on treatment. She loves to wear them! I’ve noticed an improvement in her gait — no more feet slapping at the end of the day. Katie was given exercises to strengthen her ankle muscles and legs. She does these exersizes at home several days a week. She will continue to wear her orthodics until she out grows them in about 8 months or so. Katie goes for her last PT appointment on December 2nd.

We remain thankful for each and every day, and for the ever present support you have all shown for Katie, our family and KATIE’S WISH. Please continue your prayers for Katie and all children who battle cancer.

Many hugs,
Patty


For the complete journal entry and more information about the items listed here, please visit our web site at www.katieswish.com

Holiday Gift Giving to Benefit Kids with Cancer:

• KATIE’S COOKING! a cookbook celebrating life after childhood cancer
Save $$ and pre-pay for your order ($18 plus shipping). Will ship in January and the selling price will be $24.

• 2006 COURAGEOUS KIDS CALENDAR
The calendar is full color and contains photos, quotes beautiful artwork created by children with cancer during their visits for treatment at Children’s Hospital.

Tuesday, October 18, 2005

Katie is 8 months OT and a 7 month survivor!!!

Katie had an evaluation with a physical therapist on Friday, October 14th. She was fitted with temporary orthodics to help strengthen the muscles on her outer leg muscles and on her ankles. This will help with the flopping feet that are a result of the vincrisitne. The flopping is most noticeable when she is tired and towards the end of the day when she gets home from school. The orthodics, which run from mid-foot to mid-calf, will help force her to use the muscles that are weaker. Katie returns next Friday for a follow-up.

Katie had her #7 OT appointment today, October 18, 2005. All of her blood counts were in normal range and her ANC was good!!! She also got her flu shot. After talking with the NP about her PT visit, Pattianne (the NP) felt that we should also focus on her hip muscles. Her theory is that with the steroids adding bulk to the kids in their mid-sections, it leaves their hips weakened, which results in not being able to run and keep up with the other kids. She suggested we work on her hips in PT as well as her legs. Katie returns in a month for another CBC.

The Light the Night Walk was Saturday, October 15. The weather was beautiful!! There were 1200 registered walkers, and many, many more who were not registered but participated in the walk. We had a great turnout for our team -- around 65 children and adults!! This year was extra special for Katie. She celebrated 7 months of survivorship, and she walked the entire 2 miles!! Thank you to everyone who walked with us and/or donated money to help fight blood cancer!! We appreciate your support.

I am often asked when we will stop worrying about the leukemia returning. It is always on our minds. The mornings of Katie’s CBCs are nerve racking and very stressful for me. The nurses and doctor won’t see a smile on my face until I see that Katie’s labs are normal and they say “Everything looks good!”. We celebrate each month of survivorship that goes by, and it does get a tiny bit easier as each month passes. Maybe someday we can get through a day without thinking about it. But, for now, we will worry — every time Katie feels tired, every time Katie gets a bruise, every time Katie looks pale, every time Katie gets a fever, we will worry. We worry about Kyle when he feels feverish, looks sick or has bruises, too! Maybe some day we will be able to rest easy — but not today.

We thank you from the bottom of our hearts for all the love and support you have shown our family. We hope you will continue to keep Katie in your prayers.

Many hugs,
Patty

July 19, 2005

Happy Summer!!!

Katie had her #4 OT appointment today, which included a CBC and a short visit with Dr. Julie to discuss some concerns we've had. Since John or I don't know what late effects (from the chemo) to expect, we always turn our questions to the oncologist before calling her pediatrician regarding any symptoms she has.

Katie has been doing VERY well. Her counts this month were all in normal range (WBC 7.9, Hgb 12.7, Plt 325, ANC 3476). Lately, though, she has been complaining of headaches and nausea. Several days/nights a week she has been asking for Zofran for her belly aches. I'll need to keep a log of what/when/where her headaches and nausea are happening so we can figure out why she's having them. Instead of Zofran, I give her Tums to help settle her stomach upset.

Katie lost her first tooth while we were vacationing at the Jersey shore a couple of weeks ago! She was excited about it coming out, but not thrilled about letting the tooth fairy have it. So, it is safely tucked away in her drawer so the tooth fairy can't find it. She's got her second loose tooth now, and she has already told me that the tooth fairy can't have that one either!!

Camp Sparkle at Gilda's Club is a huge hit with Katie. She's been going three days a week and is loving all the crafts and activities they offer. They've done tie-dyed shirts, paper maché and Mandalla art. Area restaurants are donating lunches for the kids which include pizza, sandwiches, and chicken nuggets!! Special guests come in each week to talk about various topics like sun safety, gardening, animals, making musical instruments, and scrap booking. Plus they have free time to play in the playground. It is such a fun time!

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COOKING FOR A CAUSE COOKBOOK

Many, many thanks again to all of our sponsors and contributors!! I know many of you are anxiously waiting to receive your cookbooks. We are still in the process of inputting the last stack of recipes and sponsor ads, plus editing and proofreading the cookbook, and finalizing our HUGE list of participants. As soon as the book goes to print, we will have a better idea of when the release date will be.

Due to the overwhelming response, Katie's cookbook is MUCH BIGGER, and BETTER than we had anticipated. We may be faced with the possibility of having to raise the price of the cookbook a few dollars at the time of it's release. We truly believe it will be well worth it!! We will continue to take pre-paid orders at $18.00 per book through Labor Day (September 5, 2005).

The pre-paid price of the cookbook is $18.00, plus $4.95 shipping for the first book, $2.00 for each additional book. If you are I the area, you can save on shipping and pick up your order. Download the order form on our web site at www.katieswish.com. Orders can be mailed to us at: KATIE'S WISH, PO Box 44, Montgomeryville, PA 18936-0044

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Thanks to everyone for your continued prayers for Katie and our family.

Wednesday, June 22, 2005

Happy Summer!!!

Katie recovered quickly after starting her antibiotics for her ear infection and pneumonia. She was able to get a few more days of camp in at her preschool before it ended. This past week, Katie finished ballet. She did very well at her end of session performance and will move up to the next level in the fall.

Katie had her #3 OT appointment today, which included a CBC and physical. She did great!! All her blood counts were in normal ranges. She has shown improvement in her balance and strength. Our goal over the next few months is to get her to eat healthier foods and move away from the "white" foods she craved while on treatment. I will contact a nutritionist in July if things don't improve over the next couple of weeks.

The big news that Katie wants to share is that she has her first loose tooth!!! Plus, she has two big kid teeth coming in on the bottom! She's is very excited about the tooth fairy coming when her tooth falls out. The funny thing is that she thinks she's going to get $10-20 per tooth!!! Yikes!

ALEX'S LEMONADE STAND
Alex's Lemonade Stand Days were June 10-12. Katie held her Alex's Lemonade Stand at our house on Saturday, June 11. She worked the stand all by herself and she raised $48.52!! Great Job Katie!! Congratulations to all the kids (and grownups) who worked so hard to raise money for pediatric cancer research.

If you weren't able to make it to an Alex's Lemonade Stand, you can still donate online at: www.alexslemonade.com

COOKBOOK
Many thanks to all of you who have contributed to Katie's cookbook project!!

The response for the cookbook has been phenomenal. We are still in the process of inputting, proofreading and organizing the recipes. We will continue to accept recipes and sponsorships up to July 10th, and then that's it. All monies for sponsorships will also need to be to us by July 10th.

The recipes and sponsorships can be emailed to katieswish@comcast.net or mailed to us at: KATIE'S WISH, PO Box 44, Montgomeryville, PA 18936-0044

It has been so exciting seeing the enthusiasm over this project. There are a lot of events being planned for the Fall 2005 and Spring 2006 revolving around the cookbook. We will keep everyone posted!!

For more information about Katie's Cooking for a Cause cookbook, please go to www.katieswish.com

We wish everyone a happy and safe summer! We continue to be thankful for each and every day, and for the ever present support you have all shown for Katie and our family.

Saturday, June 4, 2005

Katie's been running fevers of 102.1 to 104.9 for the past several days. The first day with the fever (Tuesday, May 31st), she had no symptoms other than back and leg pain. I called her oncologist and she told us that since Katie is off-treatment and no longer has a port, we can contact her pediatrician.

I was able to take Katie to the pediatrician right away. He said that sometimes other symptoms don't present themselves until 12 hours after the onset of the fever. We were to go home and call if she had any other symptoms with a fever. If the fevers continued without any other symptoms, they would do a CBC to rule out relapse.

John and I were relieved when she started coughing and sneezing on Wednesday. The fevers continued but were slowly going down. She still had back and leg pain, and now headaches. I called the pediatrician on Wednesday and he said to continue giving her Tylenol to reduce the fevers and ease her discomfort. We were to wait and see how she does as the days go on.

This morning (Saturday, June 4) she was complaining of an ear ache. John took her to the pediatrician who found that she has a left ear infection and pneumonia in her right lung. She's on antibiotics and has a follow-up appointment next week. Hopefully, she'll be bouncing back to good health very soon.

Katie is being treated like a normal child now, not an oncology patient. It feels VERY strange to be going to a pediatrician again. Fortunately, this group is a CHOP group and they will consult with the oncologists as needed.

Katie graduated from preschool on May 27th and started a 9-day camp at her preschool on May 31st. She got to go to camp the first day and hasn't been able to return since she's been sick. Katie is pretty upset because all of her friends are there, and she's worried she won't get to see them again. Hopefully her pediatrician will say it's OK for her to go for the last couple of days of camp this week. We'll have to plan lots of play dates with her friends this summer.

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COOKBOOK

We are still accepting sponsorships and recipes, but the deadline is drawing very near. Please send your recipes and sponsorship monies to us by June 15 to be included in the book. Thank you!!

For more information, please visit our web site at http://www.katieswish.com

We continue to be thankful for each and every day, and for the ever present support you have all shown for Katie and our family.

Thursday, May 19, 2005

KATIE IS 3 MONTHS OT!!

Katie had her OT visit #2 appointment on Tuesday, May 17. Her blood counts came back NORMAL!!! Her ANC was 3796, WBC 7.3, Hgb 12.0 and Plt 314. WAHOO!! We are thrilled! It is still very stressful for us as we anticipate each monthly CBC. I guess we're always waiting for the other shoe to drop. There is a HUGE sigh of relief when her blood counts look good! This is the first time we've seen "NORMAL" counts for her!!!

Katie still shows signs of neuropathy (side effect of the vincristine) which has not improved since her treatment ended. When Katie and Kyle are running around the house, their foot steps sound the same -- like a slapping sound. In Kyle case, he hasn't developed his muscles for the proper heel-to-toe movement yet. With Katie, the muscles and nerves were weakened from the vincristine and need to be strengthened. She'll be starting her physical therapy soon.

Katie's eating habits are still poor. She says she feels hungry often and craves very salty or bitter foods. She has been eating whole lemons (rind and all) without even showing a pucker!! When I mentioned this to the NP at the clinic on Tuesday, she said that her sense of taste is still off and her taste buds haven't regenerated yet (again from the chemo). This will gradually improve over time.

Katie's weight has been steadily gaining with little or no growth in her height, which is apparently very common when kids first go OT. We need to start her following the new food pyramid to assure she is getting all the proper nutrients she needs to be healthy, and less of the things she craves (like white bread and salty foods). She can also start taking a multi-vitamin now.

We continue to be hopeful that her cancer is "a thing of the past" and she continues towards being a normal child. Katie is doing very well and she looks good. She is scheduled for her next CBC with a full panel (liver function test, cholesterol, etc) and a physical with Dr. Julie on June 21.

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12TH ANNUAL WISH CLASSIC (benefiting Make-A-Wish)

On May 16, the 12th Annual Wish Classic was held at North Hills Country Club to benefit Make-A-Wish Foundation. My Brother and Dad golfed, and my Mom, John, Katie and I joined them for dinner. Katie was the "featured wish child". It was a very lovely evening. My Dad gave a speech at the dinner. It was such a warm and touching speech that expressed the feelings we all felt from our magical trip to Disney World, and how Make-A-Wish made Katie's dream-trip a reality. It was beautiful!! Thank you, Dad!!!

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COOKING FOR A CAUSE

We have started taking pre-paid orders!!

The order form can be downloaded from our web site. If you live near the Montgomeryville, Pennsylvania area and would like to save on shipping, you can pick up your order at our home. Please make a note on the order form that you will be picking up your books, and be sure to include an email address. We will email you when the books come in.

The best part about the pre-paid orders are the incentives, which have been generously donated by Sharon Snyder of Cater To You, LLC!! Thank you Sharon!!

The cost of the books are $18 (plus shipping if needed). The expected release of "Cooking for a Cause!" is sometime in August.

We still need more sponsors!!

We are looking for sponsors to help off-set the cost of producing the cookbooks. Whatever amount you sponsor, 100% will go to the charities. These sponsorships are tax-deductible. If you or someone you know are interested in being a sponsor, please let us know as soon as possible. Camera-ready ads and sponsorship payment must be to us by June 15th in order to be included in the book.

For more info, please go to www.katieswish.com

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I don't know how we could have made it through the past two-and-a-half years without all of you!! Thank you again for your continuing prayers and support for our family. We truly appreciate it!!

Much love,
Patty

Tuesday, May 3, 2005

WOW! Katie's Wish trip was the trip of a lifetime!! Katie was treated like a true princess! Our vacation began with a stretch limo picking us up at our home and escorting us to the Philadelphia airport. We met my parents at the airport and were so glad they were able to go with us. As we got off the flight in Orlando, a Give Kids the World volunteer greeted us and helped us get to our minivan. Once we set foot in Give Kids the World Village, the fun began! The kids got gifts and we got our park tickets for Disney World, Sea World and Universal Studios.

Our villa, which was in a neighborhood-like setting, was an English Tudor style, and the surrounding villas were all different styles and colors. We had two bedrooms, two bathrooms, a living room, laundry facilities, an eat-in kitchen with all the conveniences of home, a gift basket of goodies and snacks, and a refrigerator stocked with beverages and frozen meals. The bathroom off the kid's room was enormous! It had a whirlpool bathtub and double shower that could fit 4 of us comfortably!!

The Village itself was so much fun!! There was horseback riding, horse and carriage rides, fishing in the lake, two heated swimming pools, and a water park. Julie's Safari Theater played the latest movies, and that's where we met some of the Disney and Universal characters. Amberville Train Station had an arcade, a computer room, a lounge with a large-screen TV, pool table, mini boat racing, a game room, miniature golf, a train ride, and a model train in an elaborate setup that you could interact with by pushing buttons to make different things move. There was also a arts and crafts, a playroom, and a beautiful carousel in the Castle of Miracles. (Village Scrapbook)

All of the meals we ate in the Village were free. If we missed a meal that was scheduled at the Gingerbread House, we could get a light bite at the Ice Cream Palace, which not only served delicious ice cream from morning 'til night, but served sandwiches and bakery items. We could also order pizza, or a continental breakfast delivered to our villa. Anything we needed, was provided for!!!!

The Village has over 990 volunteers and 95 employees. There are 96 villas for wish families (and all were occupied while we were there). There were also families who were put up in Disney hotels because the Village was full. The Village will be expanded during the upcoming year so they can hold more wish families. Everyone was so nice! It is truly a magical place!!!

We scheduled a tuck-in one night with Ms. Merry, a big furry rabbit who is also the wife of the big rabbit that runs the Village (Mayor Clayton). She came to our villa and played with the kids by jumping up and down on the bed with them, giving them special cards for sweet dreams, and tucking them into bed. Kyle kept trying to get out of bed, but Ms. Merry finally got him to get under the covers and stay put!! It was so cute.

Two days were spent at the Village enjoying the activities and swimming. We spent one day at Sea World and three days at the various Disney parks. We never made it to Universal, so we turned in our tickets for someone else to use. There was just too much to do in too little time.

At Sea World, Katie got to be in the VIP section at the dolphin cove. One of the trainers had the dolphins swim up to where Katie was standing so she could pet and feed them. She thought that was lots of fun.

The folks at the Disney parks were wonderful and so helpful. They really made this trip a dream-come-true for Katie. Despite the hour or longer waits at most of the attractions, Katie was escorted to the front of the line and given extra special treatment. We also had a special assistance pass that enabled us to take the stroller into places where they were not permitted. This made it great for both kids if Katie didn't want to walk or Kyle was sleeping. There were a couple of rides that Katie loved and once she got off, she wanted to go right back on again. "It's a Small World" was one of them. We got right on with no waiting, and when the first ride was over, we got right back on and did it again!! She was thrilled!!!!

Katie wanted to meet some Disney characters at one of the character meeting locations. There were 3 characters in each room with a wait of 45-50 per room. As the kids got their turn, they got a photo taken and an autograph and it's on to the next character. When I told them Katie was a wish child, we were all whisked behind the rooms to a back-door entrance. When we were told we could go in to meet the characters, they closed off the room behind us and Katie got to spend about 5-10 minutes playing, chatting, getting photos and autographs of the characters in each room. It was awesome!!! Katie was giggling and jumping up and down the whole time! Kyle loved meeting Pooh, Tigger and Mickey. He was rolling and crawling on the floor with Tigger and he kept grabbing Mickey's nose. Every time Katie wanted to meet a character, the Disney folks made it a special event for her!!

There is so much to tell about this trip. For John and I, it was the first time we weren't worrying about health issues with Katie. We felt so blessed to be able to enjoy this trip together, and we had so much fun!!! It was such a wonderful time for all of us, especially Katie. Since this was her trip, we let Katie decide what we would do each day. Of course at some time during each day, we made a trip to the Ice Cream Palace for some ice cream. A day at the Village is not complete without ice cream!!

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KATIE'S WISH IS NOW A NON-PROFIT!!

KATIE'S WISH is a non-profit organization dedicated to helping raise awareness of childhood cancer, giving hope for families who have a child living with cancer, and raising funds for charities that help families effected by cancer.

So many people came to our aid over the past two years, we wanted a way to express our gratitude. Starting KATIE'S WISH is our way of giving back. We hope to help others facing similar situations as ours through our fundraising efforts and by sharing Katie's story.

http://www.katieswish.com

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KATIE'S COOKBOOK

PLEASE -- I NEED YOUR HELP!!!! Some one out there has to know some one who knows Emeril Lagasse. Katie loves watching his cooking shows. I have been trying for months to contact him and have gotten no response. I've written to his media and marketing departments, his culinary department, the food network, his restaurant in New Orleans, and Good Morning America (he's one of the chefs for the show), and have gotten no response from anyone. It would be such a thrill for her to get a recipe (or 3) from him that she can use in her cookbook. If any can help, I would really appreciate it!! And, it would make Katie SO HAPPY!!!

Time is running out for recipe submissions and sponsorships!! Please get your recipes to me by May 15th. We hope you, or someone you know, will sponsor this project. Please let us know by May 20th if you are interested in sponsoring. We can extend the time for the FRIENDS OF KATIE sponsors to May 30th, since there is no ad involved. Camera-ready ads and sponsorship payment must be to us by June 15th in order to be included in the book. You can contact me at katieswish@comcast.net

We hope you will take some time over the coming weeks to look at the photos from Katie's OT party and wish trip at http://www.katieswish.com. Thank you for all your love and support. Please continue to pray that Katie remains in remission.

Wednesday, April 20, 2005

Here's what's been going on since last update...

KATIE'S 2 MONTHS OT!!

Katie had her 2nd OT CBC on 4/19. Her ANC was 2173!! Her while blood cells, platelets and hemaglobin are all in good ranges!! She's doing good!! Katie still has the rash on her face, head, neck and chest. We've been using an anti-itch dandruff shampoo, and Aquaphor and Cetaphil on her face, but it's not helping. She'll need to see a dermatologist.

Katie still has an abnormal gate -- her feet make a flopping sound when she walks and runs. Katie also still has difficulty going up and down stairs without stopping at each step with both feet. It's not as bad as it has been, but Dr. Julie feels she should start physical therapy now, because she should have had more improvement after being off the VCR for two months.

Katie no longer has to take her Bactrim!!! She is now completely med-free!!!

Katie's next CBC appointment is on 5/17. She will get a full physical and labs at the following appointment in June.

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OUR VISIT WITH MAKE-A-WISH

Lauren, our WISH consultant, met us at the clinic yesterday to go over the details of Katie's MAKE-A-WISH (MAW) trip to Disney World. She brought Katie some goodies -- a MAW backpack, a MAW T-shirt an a bunch of other goodies. There will be another family from CHOP going to Disney the same time we will. We have planned a few activities to do together. We will be saying at 'Give Kids the World Village', which is a special place for wish families to stay. It should be a very fun trip!!!

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COOKING AT STEFANO'S RISTORANTE ITALIANO

Katie was invited to cook with Stefano at his restaurant on Wednesday, April 13. She was overwhelmed and didn't want to participate much. So, she got a private cooking lesson from Stefano instead!! Katie also got a tour of the kitchen, met the other chefs and we all enjoyed an absolutely spectacular lunch compliments of Stefano!!!

Stefano's Ristorante Italiano is located at 2519 Huntingdon Pike, Huntingdon Valley, PA.

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COOKING AT GILDA'S CLUB

Katie went to a cooking class at Gilda's last night. Her 'girl cousins' (as she calls them) were there, too. They made brownies that were delicious. We are looking forward to next month's cooking class!!!

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KATIE'S COOKBOOK

The recipes from chefs, restaurants, food companies, friends, and family are still rolling in! We have two restaurants in the Philadelphia area who will be hosting cocktail parties to promote the cookbook when it is released this summer. Chef Little of Everymay on the Delaware has offered to "use some of [his] influence to spearhead the entire chef side of the project." We are thrilled beyond words!!! We will keep everyone posted on the events and dates as soon as we have them.

http://home.comcast.net/~katieswish/pages/cookbook.html

Thank you so much for all the sponsors we have received already!!! For more information on becoming a sponsor, please go to Katie's web site or contact me at katieswish@comcast.net .

http://home.comcast.net/~katieswish/pages/cooksponsors.html

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Thank you for the continuing prayers and support for our family. We truly appreciate it!!

Saturday, April 9, 2005

So much has been happening, I thought I'd update before Katie's next clinic visit on the 19th. All is well!! We've almost made it through another month OT!! Katie's energy level continues to increase and she's been acting like a regular kid again!!! Katie looks great despite the rash on her face and head. Another child, who went off-treatment just a couple of weeks before Katie, has the same rash. We're going to try some of the things her mom is doing for her. I hope it works.

Katie's OT party
Shortly after my last update, the KISSES FOR KYLE FOUNDATION celebrated Katie going OT by throwing her the "funnest celebration party ever!!!" Katie invited her cousins and neighborhood friends. There was music, singing and dancing, face painting, balloon animals, pottery painting, pizza and THE best spread of food donated by CATER TO YOU.

At the party, we announced that part of the proceeds for the Katie's cookbook will go to KISSES FOR KYLE. Sharon and Bob founded the KISSES FOR KYLE FOUNDATION in memory of their son, Kyle, who lost his battle with ALL. They were very surprised and thrilled that we were doing this to help their foundation. For more information about KISSES FOR KYLE, go to http://www.kissesforkyle.org/

Katie's Cookbook project SOARS!!
We have MANY famous chefs, restaurants and national food companies donating recipes to help with Katie's cookbook. The response we have so far is amazing!! Each day that I check my email, we have another restaurant or chef from somewhere around the country, sending us recipes! Katie is SO excited!! Please check Katie's BIG site for the latest. http://www.katieswish.com

Katie has been invited to cook lunch with Stefano at "Stefano's Ristorante Italiano" in Huntingdon Valley, on Wednesday, April 13. She is really looking forward to being a chef for the day!!!

OT support group for parents
The constant worry about Katie relapsing, what late-effects will hit her, and the threat of secondary cancers from all the chemo still plagues John and I. I doubt it will ever go away. I can say, for myself at least, it is getting better as each day goes by and I see Katie running, playing and smiling like she did before she had leukemia.

John and I went to the first monthly OT support group for parents of kids newly off cancer treatment, at the Specialty Care Center. It was very comforting to hear that others are going through and feeling the same things we are. We are looking forward to the upcoming meetings.

Family cooking day at Gilda's Club
Katie had a blast with her cooking class today at Gilda's Club. They made lady bugs (apples, peanut butter and raisins), ants on a log (celery with cream cheese and raisins) and ambrosia. Kyle wouldn't sit still, so he played in the playground and Noogieland before falling asleep in one of the meeting rooms. It was a very nice family event!!!

Katie's shops benefit Gilda's Club
Katie has some online shops where she sells apparel and gift items celebrating life, hope and cancer survivorship. For the past seven months two of the shops (Cure Childhood Cancer & Katie's Wish) have raised over $150 for the Leukemia & Lymphoma Society. Thank you to everyone who has purchased from her shops!!!

For the spring, we have added some new shops (which are still in development), and have new designs for the Katie's Wish Shop. Starting April 5, 2005, proceeds from all of Katie's shops will go to GILDA'S CLUB DELAWARE VALLEY. We are very excited to be doing some fundraising for this wonderful organization. GILDA'S CLUB DelVal has been a source of support and fun for our family, as well as many other families and individuals in our area who have been affected by cancer. For more information about GILDA'S CLUB, go to http://www.gildasclubdelval.org/

Thank you for everyone's support in our ventures and for your unending prayers for Katie's return to good health!!

www.katieswish.com

Monday, March 14, 2005

Hi everyone,

Katie had her first OT appointment today!! All of her testing went well. She had an echocardiogram, EKG, urinalysis, CBC with differential and liver panel, and EKG holter for 24-hour monitoring of her heart.

Her ANC was over 1400, which is good. All of her other blood counts were in good ranges. Over the past month we have noticed increased energy and rosy cheeks!! Things that we haven't seen since months prior to her diagnosis!!

Her balance on her left leg is still minimal, she still has difficulty jumping with two feet at once, and going up and down stairs one foot at a time. If there is little improvement over the next few months, she will need physical therapy. We hoping this is just the vincristine and steroids still hanging around in her system, and not neurological damage. Time will tell.

Katie has an eczema-like rash covering her face and scalp which has been very itchy. We are treating it with Aquaphor and hoping it's just the winter months drying her skin. Again, time will tell.

We noticed a tubular-shaped bulge on her neck where the port tubing was. I'm concerned that some material may have been left behind when she had her port removed. Interventional Radiology is certain they got everything and said it is most likely scar tissue from having the port in for so long. Dr. Julie will be keeping a watch on it and may order an x-ray just to be certain everything was removed.

Katie will continue to take her Bactrim for the next few months. She returns for a CBC on April 19. She will have a full physical with her pediatrician in August and get the immunizations she is behind in. Katie will continue taking her swimming and gymnastics, both of which should help her regain some of her strength.

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There is lots going on with Katie's cookbook. For all the details, you can go to Katie's BIG web site at... http://www.katieswish.com

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We thank you all from the bottom of our hearts for the love and support you have shown our family. We hope you will continue to keep Katie in your prayers.

Love to all,
Patty

Tuesday, February 22, 2005

Katie was back at school on Monday, February 14th -- just in time for their Valentine party. She had her last dose of weekly methatrexate on Wednesday evening. Thursday, she started running a low-grade fever (99.7 - 100.5) again, which lasted through Saturday. Fortunately, it didn't go over 100.4 more than once.

Drum roll please.... she finished her last chemo (mercaptopurine) on Saturday, February 19! Katie is now officially OT (off-treatment)!!!!

The surgery went well for Katie's port removal. As of 9:30 this morning (February 22), Katie is PORT-FREE!!! Now we won't have to rush her to the ER at CHOP with every fever. We can finally unpack the perpetual hospital bag!!

After her surgery today, Katie wanted to go for a special lunch (pancakes at IHOP) and we went to Toys R Us so she could pick out a special off-treatment/no-port prize! She's still woozy and wobbly (but she'll tell you she's not!!), so we'll have to watch her for 24 hours. We are SO relieved to have the port out!!!

The clinic visits for OT patients are the first and third Tuesday of each month. This allows patients/parents who are OT to get acquainted with others in the same phase, and more time for the oncologist to spend with each family. Katie's first OT appointment is scheduled for Tuesday, March 15. She will have a series of tests done -- CBC with differential and liver function tests, urinalysis, echocardiogram, EKG, and EKG 24-hour holter. I will go through the details of these after her appointment.

It's hard to believe we've made it this far. During the thick of Katie's treatment, we were living for 'today'. Now we can look forward to 'tomorrow'! To quote a line from Katie's favorite movie (Kim Possible: A Sitch in Time), "The future looks bright!"

Please continue to pray that Katie remains in remission, and that she suffers NO long-term side effects from the chemo. Thank you for all the love and support you have shown our family throughout Katie's lengthy treatment. We are so blessed to have you all in our lives.

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KATIE'S COOKING FOR A CURE!

We've had a tremendous response for Katie's cookbook project! To-date, we have 67 recipe donors and 184 recipes, including favorites from an Emmy Award winning host of a national public television series, a local professional chef, and a New Line Cinema executive!! The diversity of the recipes we have received are wonderful -- from the exotic to the most basic, and from healthy to decadent!!

We still need A LOT more!! Please keep sifting through those recipes and send them as soon as you can.

pmharr@comcast.net

Many people have inquired about the cost of the cookbook. I'm hoping to keep the cost at around $8-12 per book. This will all depend on the number of recipes and the quantity of books we print. If you would like to reserve copies, please let me know how many. These will make perfect birthday, holiday, and hostess gifts!!

Thanks so very much for all your help!!

Saturday, February 12, 2005

Hi Everyone,

Katie was hit hard with the last dose of vincristine (VCR) on February 2nd. She was out of school for a couple of days with back, leg and hip pain. Then the low-grade fevers (99.5 - 100.0) and headaches hit, and she was out of school for another week.

Usually around ten days after Katie gets her VCR, her counts drop. That would be today. I took her temp this morning and it registered at 100.5. She has been acting fine and looks OK, so John and I aren't in a panic.

The fever rules: Since Katie has a port, a fever could be a sign of a serious or life-threatening bacterial infection. A temp of 100.4 or higher for 3 temp takings in 24 hours, or 1 temp of 101.2 or higher, warrants a trip to the ER for antibiotics. If her ANC is under 1000 she will be admitted, if it's over 1000 we can go home and monitor her for 24 hours.

We are packing for the hospital in the event that we have to go to the ER and she gets admitted. Katie's packing her essentials -- lip gloss, blush, nail polish, crayons, markers, coloring book, games, videos, play doh, her favorite blanket and hospital buddy (a bear that she made). That should keep her occupied for a couple of hours. :)

She is a week away from going OT and 10 days from getting her port out. I never would have thought that getting so close to OT would be this difficult for her. She's a trooper.

Please continue to pray for Katie. We really appreciate it.

Wednesday, February 2, 2005 5:47 PM CST

18 days/nights to OT!!!

Remember that nasty chemo that Katie gets every 28 days that makes her legs and back hurt, and causes her a lot of fatigue? Well, Katie had her last 'nasty chemo' (vincristine - VCR) today!!! Yippee!!! She starts her last 5-day DEX (dexamethasone - steroid) pulse tonight!!! Wahoo!!! These will be the last achey bones, weak muscles, moodiness, and steroid-craving weeks of her treatment!!

Katie had her last on-treatment CBC with differential today. As with every CBC, I worry from the moment the blood is taken until the doctor says "everything looks good". Her ANC was 1032. It wasn't quite high enough to jump her up to the full chemo dose, so for the remainder of her treatment, Katie's chemo will be at around 85-90 percent of the full dose. She will take her last chemo pills at bedtime on February 19, 2005!!!! She will continue to take her Bactrim (prophylaxis antibiotic) until the end of March.

We are so excited to be able to begin getting back into a normal, chemo-free, med-free life again. But, along with all of our excitement of her going off-treatment (OT), there is still a great deal of fear, anxiety, and worry. Fear/anxiety of the cancer coming back, and worry over what the 2 years and 2 months of chemo have done to her little body. Katie's journey through OT will consist of monthly CBCs, and many tests to determine the extent of damage the chemo has caused her.

Katie's port removal is scheduled for February 22 and she will have a CBC on the 21st to make sure her counts are high enough to handle the surgery. The first OT tests -- CBC with differential and liver function tests, echocardiogram, EKG, and EKG holter (24-hour monitoring) -- will begin at her first OT appointment on March 15, 2005.

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We are very excited to announce that we have a celebrity recipe donor for KATIE'S COOKING FOR A CURE cookbook!! Christina Pirello, Emmy Award winning host of the national public television series, "Christina Cooks!" (airing on over 150 public television stations nationwide). At age 26, when after being diagnosed with terminal leukemia (AML), Christina decided to forgo conventional medical therapies and turned to a nutritional approach - whole foods - and cured herself. Katie is a huge fan of Christina's, so this is especially exciting for her.

We are equally excited and thankful to have Katie's preschool name KATIE'S COOKING FOR A CURE as one of their February service projects!!

The response for this project has been wonderful. We still need a lot more to make this project a huge success. So, keep sifting through those recipes and feel free to send as many as you want! If anyone would like to reserve copies of the cookbook, just let me know how many. I want to make sure we have enough to go around. Thanks for your help!!!

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We ask that you please continue to pray that Katie remains in remission, and also pray that she suffers NO long-term side effects from the chemo. Thank you for all the love and support you have shown our family throughout Katie's lengthy treatment. We are so blessed to have you all in our lives.

Thursday, January 27, 2005 3:12 PM CST

Hi Everyone!

I took Katie to see Dr. Julie yesterday to get a CBC and a check-up. She still has a nasty cough but she looks much better, and all of her counts went up. Katie is finally back at school today after being out for three weeks.

Katie's ANC rose to 918 (from 330 on Saturday). We were able to restart her nightly and weekly chemo again last night to 40-60 percent normal dosage. When she returns for her final vincristine (VCR) IV push next Wednesday, Dr. Julie is hoping we can increase her chemo back to 100 percent for the duration of her treatment. We'll have to see where her counts and ANC are next week.

As of today, Katie has 24 more days/nights of chemo left!!!

We've got Katie's port removal surgery scheduled for Tuesday, February 22. We'll go to the clinic to get a CBC the Monday before. As long as her ANC and counts are good, and she has no signs of a cold or fever, they will go ahead with the surgery.

We have gotten a great response for Katie's cookbook -- KATIE'S COOKING FOR A CURE -- but we still need a lot more recipes to make this cookbook a success! You can E-mail or snail-mail your recipes to me. Please let everyone you know about this project!! The more recipes we get, the better the cookbook will be. Thanks for your help!

Please continue to pray that Katie remains in remission, and everything goes smoothly as she transitions into OT. Thank you for all the love and support you have shown our family throughout Katie's treatment. We are so blessed to have you all in our lives.

Saturday, January 22, 2005 3:33 PM CST

We're home!!!!

We're very surprised to have been set free today, and VERY happy to be home. Katie's ANC dropped to 169 yesterday. Her blood cultures came back negative. She wasn't allowed to leave the room until her respiratory cultures came back, and everyone entering the room (except John and I) had to be gloved, gowned and masked. At least it didn't bother Katie for her birthday.

John came with Katie's birthday gifts, a cake and lots of balloons. The nurses brought her another cake, pretzels, chips, fruit punch, and some presents so we could have a party in her room. We ate cake and snacks, and played board games all afternoon.

Her respiratory cultures came back negative last night. It was late, but Katie wanted to go for a walk to the playroom. She rode a trike around the oncology floor for awhile and then we watched a movie in her room until she fell asleep. Katie said she had lots of fun on her 5th birthday.

She said something funny before she went to sleep last night. She was flipping through the channels looking for something to watch and she saw a "big kid" show that she's not supposed to watch. When I told her that show was for big kids, she said, "Mo-om! I AM a big kid now. Didn't you remember? I'm five! I was such a little kid when I was four, but now I'm five and I'm allowed to watch this stuff!!"

Her ANC went up to 330 this morning. Normally the doctors like to wait for the ANC to show an upward trend for a few days, but with the snow coming, all her cultures coming back negative, and no fevers since yesterday morning, they decided to discharge her today. We were out of there by noon.

We're going to celebrate Katie's birthday all weekend. Since she has no restrictions on her activities, she can play in the snow tomorrow for a little while.

Thank you for all the prayers and well wishes. I've haven't gotten through all the emails and guest book entries with Katie yet, but she is so excited to get all the messages!!! Please continue to keep Katie in your prayers.

Thursday, January 20, 2005 AM

Hi Everyone,

Just to give you a quick background on ANC and fever... Since Katie has a subcutaneous port, we worry when she gets a fever because it could be the sign of a potentially life threatening bacterial infection. Low-grade fevers of 100.4 for three temperature takings in 24 hours or one temperature taking of 101.2 for warrants a trip to the ER or oncology outpatient clinic (if it's open). There, the child is put on antibiotics which vary depending on how the child appears and height of the fever, and a CBC is done.

Some of the blood taken is sent for a culture to see if anything bacterial grows. If the child's ANC (absolute neutrophil count) is under 500 and has a fever (as mentioned above), they are admitted for observation for a minimum of 24 hours. If a culture grows, the fever continues or they are still neutropenic (ANC under 500 - which means they can't fight infection on their on) the hospital stay is longer and will last until the ANC goes up, the fever is gone and the infection is gone. If the child's ANC is over 500 and their appearance meets certain criteria, there are some cases when the child just gets a 24-hour antibiotic and is sent home.

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With all that being said, after Katie had her spinal tap and VCR, she experienced headaches, leg and back pain for a week. She was in too much pain to go to school. On top of that, she started running a low-grade fever of 100.3 (just 1/10 of a degree under the cut-off of 100.4) starting on the evening of Monday, January 10th. The fever continued for four days.

She still was running the low-grade fever of 100.3 on Friday, January 14, so I took her to see Dr. Julie. Her ANC had dropped to 832. Since her ANC was over 500, she could continue to take her meds and chemo at home, and I was to call if her fever went up or continued through the weekend.

Katie's fever went away by Saturday and she was back in school yesterday. She was very grumpy and whiny last night so I took her temp and the fever of 100.3 was back.

Here we are today. Her temp this morning was 100.4. I've got the hospital bags packed and my mom is ready to take Kyle in the event that we have to stay at the hospital. Right now, I'm waiting to take her temp again (she just ate) and quickly writing this update. If her temp goes down, we've bought some time and may not need to go anywhere. If her temp stays at 100.4 or goes up, we are heading to the outpatient clinic at CHOP where she will be evaluated. Dr. Julie is at CHOP today (and every Thursday), so we will get to see her.

Her temp is 100.9. I'm going to finish packing stuff for Katie to play with. I hope she doesn't get admitted and have to stay for her birthday tomorrow. The weird thing is that she really likes being in the hospital!!! I'll keep everyone posted.

Thank you for keeping Katie close to your hearts and in your prayers. Please, please continue to pray that she remains in remission, and that this fever is nothing more than a little virus. We deeply appreciate it.

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Thursday, January 20, 2005 PM

Katie's fever continued until we got to the hospital. After getting her CBC (ANC went down to 600 ) and talking with Dr. Julie, Katie was going to be allowed to go home with her port still accessed. We were to return to KOP clinic in the morning for another CBC to see where her counts were going.

I asked to have her temp taken one last time before we left because I was worried that we would get home and have to turn around and go to the ER a few hours later. Katie's fever went up again, so she was given three different antibiotics in the day hospital and was admitted for a minimum 24-hour stay. She has developed a nasty cough and is loosing her voice, now --not a happy camper.

If you have a moment, please leave her a message in her guest book to wish her a happy birthday. Hopefully this will be a short stay.