History

Thursday, December 13, 2012 10:35 AM CST

Good morning,

It’s been a while since my last update. I’ve been putting them on my facebook account. Peter is doing well. He had a battle with pneumonia in the end of October that really weakened him and he lost his ability to walk with the walker. His class went on a field trip to Crystal Cave on November 2nd and he we unable to attend; caves are not very wheelchair friendly. Grammy and I took him on a little trip to Hershey PA and we spent the afternoon at Chocolate World instead.

We saw Dr. Thacker and a cast of many others at A.I. duPont on Friday November 16th to prepare him for fixator removal the following Monday. We left the house bright and early on the 19th and Peter was in the OR by 7:45 and at 8:52 we learned that the fixator was removed, x-rays were taken and he was on the way to PACU. Dr. Thacker spoke with us and said the leg looked good and that he did not require a cast. We should return in 2 weeks and there is no weight bearing. We were home by 12:30 and Peter was remarkably comfortable.

He required pain meds 1 time the following day after a wild game of Wii baseball. We saw Dr. Thacker on the 21st and picked-up a new leg brace for him. He is still unable to bear weight but the brace will help to stabilize his drop foot.

He had a day-off of school on December 5th so we spent the entire day at duPont. We saw PT, the brace clinic 3 times; there is so much swelling in his leg that the brace is ill fitting. It is also so large that it does not fit into his shoe. We saw Dr. Thacker and he is pleased with his progress and has increased PT to 2 times per week for 2 weeks. We had hoped he would be x-rayed and returned to weight bearing but it’s still too early. We had an appointment with the wheelchair clinic to have my growing boy fitted for a new chair but there was some confusion and will return to the clinic during Christmas break.

He had allowed Peter to return to the playground (in the wheelchair only) and he is allowed to throw the football but NOT catch. Third graders can get wild. He has also returned him to the cafeteria for lunch and into the gymnasium although he may not take gym class He must remain in the wheel chair for the entire school day with a schedule to follow for raising and lowering his legs. He is so happy to be back with the children during all of these non-academic times and has noted that he gets in far less trouble for talking during class…that’s my social boy!

We are schedule to see Dr. Thacker on Dec 18th at 7:30am. We make every effort to miss as little time from the classroom as possible! My Christmas prayer is that he will receive x-rays that show the new bone is hard and strong enough to bear weight. Please pray that he will walk by Christmas. Peter will increase his PT to 3 times per week after this appointment.

Thank you for caring.

Tuesday, September 11, 2012 8:28 AM CDT

Good morning from 3C South room 5

Peter had a good and uneventful night. He stayed up late watching football and slept very well. Dr. Thacker rounded early this morning and gave us the good news that he will be discharged late today! The infection is responding well to the antibiotics. They can tell because The doctors used a blue marker and drew a line around the entire red area...then they gave him medicine thru his IV line and watched and waited. Today when they looked the red area was much smaller and in lots of places it is no longer touching the blue line. All of the blisters on his foot and toes are gone.

He was already downstairs for x-rays of his right leg and fixator, so sometime today we will find out how much his leg has grown. We have finished the lengthening process so we are excited to find out where things stand. His PT is here and he will start exercising when he finishes eating his fish stick and rice breakfast. Yuck, who ever heard of fish sticks for breakfast.

We are waiting for Dr. Epps from infectious disease to round and change Peter's medicine from IV to oral so we can go home. Peter and Dr. Epps have been playing Presidential trivia during his visits and Dr. Epps is a much better player than Dr. Thacker. Dr. Thacker does not want to play any more so he is now playing capital trivia, he's better at that. They quiz one another on capitals of states and countries.

Peter will be able to return to Vernfield tomorrow and he is looking forward to seeing Ms. Stempler and all of his friends in M005! Please tell Mrs. Brandt that she needs to meet him in Mrs Fox's office in the morning.

Thanks for caring and praying.

Monday, September 10, 2012 5:28 AM CDT

Greetings from hotel duPont...

On Wednesday, Aug. 29th, Peter had x-rays and an appointment
with Dr. Thacker. We were expecting to learn that his leg had grown approximately 51mm but, instead we learned it grew approximately 57mm. This sounds like good news but it's a little complicated. The rapid growth caused a thinning of the bone and lots of stress on the soft tissue. The skin at the ankle and foot had become red and irritated.

We were instructed to stop the lengthening process so the bone could become thicker and stronger and the tissue could become less "angry". We left the dotor's office and went to PT. Peter had a good work out. By the time we got home his "angry" skin (on the heel) had become blistered, weeping skin. We started applying triple antibiotic cream.

On Wednesday, Sept 5th, we returned for more films and a check-up. The bone density had improved and we were surprised to learn that the lengthening process could resume. It was decided that the skin was infected and Peter started taking Keflex and Bactroban ointment.

Saturday morning we awoke to a very red, blister covered foot and toes. We took a ride to DE and Dr. Thacker admitted Peter for IV antibiotics. He was started on Vancomycin. The nurse hung the fluids and Vanco while I was out of the room and left patient education materials with Dennis, when I returned he gave me the papers - "Is it safe for my child to take this drug?". "Not if your child had hearing loss". HELLO! We had the nurse stop the drip and Dr. Friedman from infectious disease was consulted, his antibiotic was change to Linezolid. Better. The Bactroban ointment continues.

Peter had a nasal swab to rule-out Mersa, which is thankfully negative. One of the large, nasty foot blisters was cleaned, popped and swabbed to try to obtain a definitive diagnosis, at this point there has not been any growth.

Fortunately, the pin sites remain clean, dry and are infection-free. The infection is only present on the skin below the fixator. The lengthening process has been halted, again. In all likely hood this has caused the end of the lengthening; we should be about 6cm. We praise God for this amazing gift!

It sounds like we will be here a few more days. Peter will miss Ms. Stempler and all his friends in room M005!

Thursday, August 23, 2012 6:38 AM CDT

We met with Don in the casting room last Wednesday; he changed-out 4 of the 6 struts because they had been expanded as far as they could. We followed that with leg x-rays and a visit with Dr. Thacker.

Dr. Thacker said that Peter’s leg is healing so well that it’s “textbook”. It had also grown 4.0cm and it was time to cut the lift down, a nice change from raising it. We left Dr. Thacker and headed to PT where Peter rode a bike for the first time. It’s crazy watching someone with a fixator riding a bike but he is one brave boy and he did really well for his first try. He pedaled 10-20 times without sitting down. The next day he did 115 pedals! He decided not to do that again as he had too much pain on the ride home.

Yesterday, we met his 3rd grade teacher, Ms Stempler. We hope we have figured out how the classroom and playground will work for him. He is excited to be returning to school and I’m confident that despite all the challenges he will do great! I will drive him to and from school each day and we will still head to DE 3 times per week for PT. The school year will be tough!

We continue to tweak the pain med in the nearly illusive quest of uninterrupted sleep. Last night we turned the struts for 4.5cm and we are 16 turns from completion. I hope that the end of the turning will bring with it a decline in the pain, which is on the up-swing as we near completion, as all the soft tissue is being stretched pretty tightly.

Please pray for our safe travel, restful sleep, decreased pain and a successful school year.

Hey kids, sign the guest book and let us know who your teacher will be. Thanks

Tuesday, August 7, 2012 8:31 PM CDT

Highs and lows...

Last Wednesday evening Peter called out to me to take him to the restroom. I carried him in to the room and stood him on the floor, then the most wonderful thing happened! He called out, with such excitement, "Mama! My foot touched the floor!"

It was the best moment and we quickly got back to bed and paused to praise God for His amazing gift!

The next day we were so happy and excited but our joy very quickly turned to fear as Peter's PT failed to properly spot him and he fall backward during his PT session and hurt his leg, hip and pelvis. His pain was crazy high and it took 15 minutes to calm him. He was examed by ortho in the cafeteria (it was after 5pm) at the hospital and then sent for X-rays of his hip/pelvis. The films were negative and we headed for home.

Friday morning we saw Dr Thacker and they xrayed his foot to check the length and to be sure that he there were not any injuries from the fall the night before. The pins were in place and a very large weight was lifted from our shoulders.

Tonight we turned the struts for 3-centimeters!

Please continue to pray for his comfort and continued growth.

Thanks!

Tuesday, July 24, 2012 8:32 PM CDT

The X-rays showed that the bones are properly aligned. Physical exam points to sciatic nerve pain and Peter's nerve medication (neurontin) was restarted. We learned that the leg has grown to .86cm and the Thursday night strut turns will take it to the 1cm mark. When we were preparing to turn them on Thursday evening, Peter said, "it's my leg and I
Want to turn them". So I unlocked them and Peter turned all 6 of them. He has decided that he will be the one that turns them for each milestone. He is a very brave boy and Dennis and I are very proud of him!

Sunday night was another sleepless one and I called Dr. Thacker to let him know that we need help! Peter's neurontin was doubled.

Monday the 23rd, Dennis gave Grammy the night-off and he went duPont with us. This was his first PT session and it was a pool appointment. Grammy sent some money along to treat for dinner and we promised Peter that his hard work in the pool could earn him a trip to Red Lobster.

It did not take him long to get to work with Miss Nicole. About half way into his session he said, "Mom, film me." And he walked in the pool on his right leg. Another brave move for Peter and this one earned him crab legs:)

Praise the Lord he slept through the night last night!

We return to duPont tomorrow and we're anxious to learn how long his leg has grown and to see how much he can accomplish in the pool.

Please keep his comfort and safe travel in your prayers and thank you for supporting for so long.

To Kelley, Maddi and Luke, Hi. Does anyone know who their 3rd grade teacher is? Peter

Tuesday, July 17, 2012 8:08 PM CDT

Friday the 13th...yikes!

Friday evening we turned the struts and got ready for bed, but sleep was not in the cards for Peter and he struggled with severe RT glut pain. He took every medication we had for him and spent many hours thrashing and crying from the pain. He was finally comfortable and able to sleep at 4:45am Saturday morning.

He awoke around 9:00am and was eager to get started with his exercises and his play dates. Lydia and Julia joined Peter in a Skip-Bo game. They spoiled him with homemade chocolate chip cookies (the size of your head). They were awesome! A short time later Dylan came for a visit. The boys enjoy some time on the wii. We were excited to have this fun playtime for Peter.

Sunday we packed him up and made it to church. It was wonderful to be among friends and so nice to worship. Peter really enjoyed seeing everyone and has been showing his fixator to more and more people.
Eli and his famous brownies joined Peter for some wii time.

Monday we had more fun with those cute little Vizza girls and later returned to duPont for PT and Peter had his 1st session in the pool. Nicole put him through the paces and he did well. He did lots of swimming and worked very hard. Monday evening was a sad repeat of Friday with the pain keeping him up until around 2a.m.

I spoke with Dr. Thacker, he has order X-rays of his hip for tomorrow afternoon and he may be changing some medications to keep him more comfortable.

Peter had fun with Justice, Ashlyn, Jayden and Gabriel, today.

Please pray for our trip to DE tomorrow, for improved pain management
And traveling safety. Tomorrow is a big day for all of us as I'm expecting to learn that Peter's leg has grow 1cm!

From Peter: Hi to Sean, Keagan, Peyton, Erin, Christopher, Gabe, Dylan, Nate and Dylan. Thanks for signing the guest book.

I'm so sorry for any errors but I'm exhausted and I wanted to get an update out to all of you. Thanks for caring!

Friday, July 13, 2012 6:21 PM CDT

Miracle number 2 is under way.

It's been a little while since I posted, Saturday was relatively quiet here. We spent the day with pin care, long showers, exercises, meds and just carrying Peter to and from whatever his needs were. Our only visitor came late in the day and left a wonderful dinner for us! Thank, Mel.

Sunday the man slept until well past our church hour so we just went with the flow and waited for him to wake. He had lots of fun when the Curriers and Mrs. Vasey showed up with 3 little Wii playing boys. Peter had fun with Nick, Tyler and Troy. Eli Vasey sent along a batch of fresh brownies and Peter really enjoyed them. Trish dropped-in with the some of the clothing she has been altering to fit over the external-fixator.

On Monday we headed to duPont for the 1st real PT session. Mel joined us for the ride and kept Peter entertained in the back of the car. Peter worked very hard and was rewarded with a lovely shark balloon, almost as large as a real shark! Needless to say, I could not see out of the rear windows for the drive home. In spite of the fact that we had PT at the hospital he still had to do exercise at home 2 times plus shower and pin care. It was late when we got him into bed.

As tired as we were Monday held the most exciting moment…It was the 1st night that the struts were turned and the miracle that we have prayed for so long started. Peter’s leg grew 1mm. I really can’t explain to you how that felt, it was over whelming. And Jeremiah 29:11-13 came to my mind.

11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call on me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart.

While we were at duPont Vicki arrived with another wonderful meal. It was nice to come home to some home cooking and not another meal on the run!

Tuesday morning Grammy and Mrs. Schick arrived to play. The board games are getting a workout and it is great fun and a nice distraction. His exercises and medical care continued and following another lengthy shower and pin care so did the turning of the struts. Tuesday evening did not go as well as Monday and he had lots of tightness and muscle spasms. I gave him valium and Lortab and the spasms came under control.

Wednesday was more of the same but this time Uncle Jamie and Grant came to play some Skip-Bo and Trouble. Peter had a wonderful time with them and ate lots of junk food. Mrs. Reich and Luke stopped for a visit and to spoil us. Kathy provided dinner and I was thrilled to eat the left-over for breakfast the next day!

On Thursday Grammy was Peter’s companion for the ride to duPont. I think his PT session was a sad eye opener for her. He fights and works so hard but it hurts. All of it just hurts! He has been very shy about people seeing his leg, because it is gruesome looking, but at PT they removed the stocking and Grammy got her first look. I felt bad for her. When we got off the turnpike in Kulpsville we stopped at the church, Frances & Linford baked Peter some chocolate chip cookies. We were starved and ate ourselves full until we hit Harleysville. My skinny boy does not gain one ounce eating this way but I’m sure his Mother will!

It was another late-night for us that ended with the strut turning. It resulted in tears but we are at 4mm and Peter remains excited about buying whatever shoes he wants and NOT adding a lift!

Today we left the house at 7:30am, picked-up Nanny and head to DE. He had x-rays, a visit with Dr. Thacker and PT. Dr. Thacker came into the room with a copy of his 1st post-lengthening x-ray film for us. YOU CAN SEE THE SPACE OPENING!!!!!!!!!! It really is amazing to see.

During his PT session Mean Jean had him standing on both legs fully weight bearing, in-between the parallel bars, while he shot hoops. This kid is crazy awesome and I’m so proud of his courage. We headed for home, dropped –off Nanny and arrived at our house at 5:15pm. It was such a long day. We will be repeating this schedule again next week. When we see Dr. Thacker on Wednesday his leg will have grown 1cm. WOOT! Praise God!!!

Thank you all for the prayers, meals, cards, treats, calls, lawn mowing, house cleaning and you name it. Our family, church family and friends have been awesome.

Please continue to keep us in your prayers. Peter has a long road ahead of him and sometime it really gets hard, pray for his peace and pain. I’m really tired and if the road is long for Peter it is long for us also.

Thank you to all the children that leave messages in the guestbook. They are really special to us and I will get your names on here next post…promise!

Friday, July 6, 2012 9:15 PM CDT

Peter is adjusting well to his oral meds and is happy to be home!

So, Thursday morning we had PT in the room and hallway outside our door. Peter walked with the aide of a neon blue walker. It was amazing to see and a little emotional for me. I'm so proud of his strength and determination. He's crazy brave for walking on not one but, two freshly broken bones!

Linda drove our car to the hospital for us because all signs were pointing to an early discharge. Peter has been showered with no many gifts and balloons that we knew that there wouldn't be any room left for us in the suv. Mel arrived for a visit and to give Linda a ride home. Then Mrs. Brown and Sean and Keagen arrived for a lunch play date. Peter was so happy and excited. Dennis and I even got to leave the room and have a Lunch play date with Linda and Mel. Thank you, Mrs Brown!!!!

A short time later it was time for Peter's second round of PT and pin care. We left the floor for a PT room with a whirl pool. He rode a lift into the tub and the whirlpool was started. He was in excruciating pain while he soaked and stuck-on crusted dressings were removed. It was aweful! I learned how to clean and care for his pins. It is not overly hard but it is uncomfortable for him. The bright spot in the PT appointment came when it ended and another play date started. Peter told me, "I'm really impressed that so many of my friends are willing to cross state lines to visit me".

Thanks Mrs Valentine for bringing Trevor and Ava to play. He quickly forgot about his PT and had a great time. The gang finished-off Aunt Sandy's brownies. Meanwhile Dennis made an unbelievable amount of trips to the car to empty the room of our belongings.

Valentine's left for home, Dr. Thacker left the O.R. and stopped to check on Peter and discharged us to home, NOT the Ronald McDonald House. I was nervous about his comfort in the car. Peter and I sat in the car and prayed for traveling safety and his comfort for the ride (it was a double hand holder). God answered back with a nap that lasted for the entire trip. Poor Dennis, his car was so packed with our belongings and Peter's balloons that he could barely see out the windows.

Grammy and Ryan stopped-by with a fresh Wawa shorti and later Nanny and Grant stopped for a visit before bedtime. We all slept good in our own beds without the evening interruptions of nurses and roommates and I.V.
alarms.

Today's routine was exhausting...bathroom trips, shower, pin care, exercises, meds, meals. Peter did well until I bumped his leg repositioning him in bed:(

Mrs Runk, Maddie and Jason stopped for a visit and Jason stayed to play the Wii. I took a very long nap, when I awoke they were gone. I checked-in on Peter's pain score and he said,"Oh I forgot about that". Play dates are good medicine!

Kathy stopped for a visit and added to his ballon collection and baseball card collection.

My cousin Trish stopped after work and Peter was willing to snuggle with her and her Netflixs account (99 Sponge Bob episodes) while Dennis and I ran out for a quick supper. Trish you are a real trooper for watching them
in numerical order. LOL! Trish is working on altering his clothes so that we can get his shorts over the external-fixator.

After many calls to duPont today we have scheduled 4 visits for next week and have stopped the drug neurotin.

Please pray that he wil be able to manage the pain, appointments and car rides that lay ahead.

He is looking for play dates for tomorrow.

Thursday, July 5, 2012 8:21 PM CDT

We are home (our home) Peter is great, God is awesome and Mom is too tired to update...more tomorrow.

Wednesday, July 4, 2012 9:19 PM CDT

Happy 4th to you!

Peter had a good day. We did his range of motion exercises 3 times. His technique and stamina improved each time. I'd have to say, that like so many things related to this surgical admission, it went better than I expected. They do wear him out and he took a long peaceful nap between sessions 2 and 3.

The day was much quieter than yesterday not just in our room but on the entire floor. We dd have a nice long visit from Pop pop, Aunt Sandy and Dan. They brought Peter a much loved and hard earned Wawa shorti:) It was the best he has eaten this week. Aunt Sandy spoiled him with a plate full of brownies. While Peter and Dan played games Sandy and I took a ride to the Ronald McDonald House. We have reservations there starting on Friday, July 6th. If things go well tomorrow and his pain is controlled he will be discharged a day ahead of schedule.

So many prayers have been answered and I am asking you to continue to pray that his pain will be well controlled and that his PT sessions will go well. He will have his dressings removed tomorrow and will have a nice whirlpool bath. His PT will teach me to take care of his pins.

We put Peter in his wheelchair this afternoon and took him for a walk around the hospital. When we passed the chapel Peter requested that we enter to pray. We found our usual pew in the right front and took turns praising God for so many ways that he has been faithful to Peter and our family.

From Peter, Hi Tyler, Ethan and Trevor and Dylan. I hope someone will come and play tomorrow.

Tuesday, July 3, 2012 8:17 PM CDT

Peter had a pretty good day. PT came to the room and got him out of bed and hopping on one foot from bedside to wheel chair. He spent about an hour in the chair and while he was seated his epidural was removed. There was so much tape and the removal of the tape was far worse than the removal of the epidural itself. In it's absence his leg and foot now hurt.
He was switched to the oral pain med Lortab. He remains on Valium for muscle spasms and neurontin for nerve pain.

Because of the Independence Day holiday PT will not be here, they left a sheet of exercises for us to do together. Please pray that Peter will be able to bare the pain and do the stretches that he needs.

There were many visitors today and it really helped to pass the time and occupy his mind. Thanks to Grammy, Nanny, Grant, Stacey, Janelle, Jen, Justice, Ashlyn, Jadyn, Rebecca, John, Jen, Eli and Tim.

There was a lot of spoiling and delivering of cards, snacks, balloons, games and gift baskets. Thank you all for your generosity and for putting a smile on Peter's face.

From Peter, Thanks to everyone that has visited so far. I really appreciate it. Hi to Ella, Veronica, Brooke, Hayley, Sean, Keagan, Jason and Madeyln. I'm looking forward to seeing more friends tomorrow!

Thank you for your continued prayers, we are humbled by your love and so grateful for all that you and God has done for us today.

Tuesday, July 3, 2012 7:57 AM CDT

Holy nausea batman,what a night!

As you can guess Peter struggled with nausea and vomiting during the night, most likely from the anesthesia. He was given Zofran and got much needed relief. He is slowly advancing his diet this morning.

Dr. Thacker has rounded and is very pleased with his progress. He is having a histamine reaction to the opium in his epidural (swollen face, red itchy eyes) he also has discomfort at the epidural site and the decision has been made to pull it today following PT and my pin-care instructions. Please pray that his pain will be well managed with the oral meds.

Peter is bored! That's a great sign and he's looking for some friends to visit and play with him.

Hi to Lydia, Jon and Matt!

Monday, July 2, 2012 3:39 PM CDT

This is Trish, Dawn asked me to update, as she has had multiple technical difficulties trying to get an update posted.

Peter was finished in the OR around 11:30. His leg is lengthened, the muscle and Achilles tendon were released and the fixator is in place. The surgeon said everything went well. Peter has been awake all afternoon, eating, playing Fossil Fighters video game and wants company! Thanks to the epidural, he is pain free, except for the IV line in his hand.

Peter's companion, Kevin the dog, left the OR with a cast on his right leg, the same leg as Peter's surgery. The plan is to have Peter stand bedside tomorrow and walk on Wednesday.

Please pray that Peter will get a good night's sleep, along with his parents. Please pray for continued pain control. Thank you to everyone that prayed and fasted today.

Please sign the guest book, as they love to see the posts from everyone.

Tim, Peter says Hi!

Monday, July 2, 2012 8:34 AM CDT

We arrived at DuPont by 6:30. We reported to the pre-op waiting area, we waited briefly and were taken into the pre-op holding rooms. Peter changed into a gown and was given an ID band for himself and Kevin, his stuffed dog who is joining us for this admission. He rec'd some liquid versed a.k.a. Silly medicine and some neurontin for nerve pain. I was able to change into scrubs and enter the O.R. With him. I stayed until the mask was placed and he feel fast asleep.

We received our 1st update about 8:30, "Peter fell asleep quickly and easily." "Dr Feesta (anesthesiologist) is in the process of placing the epidural." Woot! That is music to this Mama's ears!

Second update about 9:45, "the epidural was placed without incident and cutting has begun."

Please join us in praising God for the gift of Peter's epidural! This should allow for 4 days of pain-free recovery.

Please continue to keep Peter and his surgical team in your prayers. The O.R. Was reserved for 3.5 hours so we hour to see him again about 11:30-12:00.

Sunday, July 1, 2012 10:55 PM CDT

The morning of April 5th, before we pulled out of our driveway, we prayed for safe travel and very clear direction regarding our choice of surgeons. We very clearly knew that we did NOT want to return to Baltimore for surgery.

On April 12th we traveled to A.I. duPont Hospital for Children, Wilmington DE and had appointments with Orthopedists, Dr. Freeman Miller and Dr. Mihir Thacker. Peter has been a patient of Dr. Miller’s for many years and we have always been pleased with his care, unfortunately he does not perform limb lengthening surgery, so he referred us to Dr. Thacker.

Peter liked Dr. Thacker very much and wants him to do the limb lengthening. Dennis and I returned on May 11th for a meeting with Dr. Thacker, and the opportunity to discuss the surgery without Peter being present. We both felt satisfied that we had been referred to the right man and we scheduled his surgery for July 2nd.

Prior to the school year ending, I spoke with the entire 2nd grade at Vernfield Elementary School. Peter will have a long recovery and will spend a good part of 3rd grade in his wheel chair. His leg will look different and perhaps a little scary to some. The children were given this website as a place to check on Peter. For that reason some of the surgical information may be omitted, if you are a pediatric cancer family that follows Peter’s journey and your child needs limb lengthening, please contact me via e-mail for additional information. If you are one of the awesome students from Vernfield Elementary School thanks for checking on Peter and for leaving him messages in his guestbook. He enjoys hearing from you and so do I.

We have been very busy trying to give Peter an entire summer in just a few short weeks. We have been to Trail Blazers camp-out, birthday parties, movies, 2 Vacation Bible Schools, GSK Summer Science Program, Crystal Cave, Knoebels Amusement park, Jim Thorpe camping resort and Pocono white water rafting.

We are both excited and frightened about Peter’s big day tomorrow. We have looked forward to his leg lengthening for so many years; we are grateful and blessed to be in a country where so many wonderful healthcare providers are working. The thought of him running and playing without the large shoe lift has us overjoyed but the thought of all the pain and the long hours of physical therapy and the many months of wearing the fixator on his leg is hard to imagine.

This morning our church family at Towamencin Mennonite had a moving time of prayer for our family. The congregation surrounded us and laid hands on us and prayed for healing, peace and well controlled pain, among many other things. We were blessed to have Grammy, Aunt Nanny and Trish join us. We have been loved and lifted by the people at TMC and our family for so long that it’s hard to imagine what this journey would have looked like without them.

We need to be at the hospital by 6:30 am. Please keep us in your prayers for traveling safety and compassionate nurses, and ask God for an extra helping of wisdom for Dr. Thacker. Please pray that the pain management team will successfully place an epidural in Peter’s back before he leaves the O.R. The epidural would be the best possible pain control.

I will post updates here tomorrow as we receive information from the O.R.

Thanks you for your continued prayers and support, for the many cards, gifts, calls and for the message in this guestbook.

Hi to Peter’s friends, Jon, Gabe, Ashyln, Justice, Seth and Sean

Thursday, April 5, 2012 7:52 AM CDT

I know that it’s time to update Peter’s site but I’ve been enjoying our Caringbridge-free lifestyle. Peter is currently 9-years-old and happily part of Mrs. Schick’s 2nd grade class. Yesterday he took part in his school’s race for education, many of you received letters to sponsor him and we extend our thanks to all of you that have supported him and his school in that way.

Peter has been very well since our last post and has been part of our community baseball, swim and dive team. He dives with the aid of an AFO that has a lift and sole added to the bottom. His leg length discrepancy has grown to a very large 7cm.

As a result of the large discrepancy his shoe also has a very large lift added to it. He is still wearing the leg brace and bilateral hearing aids. He would really like for all of these aids to go away and, of course, we aim to help him realize those wishes.

Today, we are traveling to Sinai Hospital in Baltimore MD to meet with a surgeon, Dr. John Herzenburg. He specializes in limb lengthening and he and his partner our pioneers in the field. They perform a brand-new procedure called the PRECICE method. It is done with magnets and is less painful than existing procedures.

I’m so excited for this appointment and so is Peter we can’t wait to meet Dr. Herzenburg and learn all that we can about his work. We also, have appointments with 2 surgeons at AI duPont in Wilmington, DE on Wednesday.

Please keep our family in your prayers as we travel and make important decisions regarding Peter’s care.

Thank you for your faithful support for all these years.

Thursday, December 17, 2009 10:25 AM CST

So, this is what we have been doing to support Peter medically and academically since my last update:

April 16, 2009 A.I. duPont Hosp for Children, DE
Gait lab analysis – evaluate the way he walks to see if his gait can be improved.
Orthotic appt – right leg cast for new brace mold, lift added to new shoes.
Orthopedic appt – x-rays, discussion regarding hip/pelvic surgery and leg lengthening.

April 22, 2009 Audiology appt at CHOP Bucks Co, PA
His hearing loss remains stable.

April 24, 2009 Pediatric appt Chalfont, PA

May 11, 2009 Transition meeting at Vernfield Elementary School, Vernfield, PA
Met with principal, psychologist, counselor, PT, OT, and teachers to ensure Peter has a successful Kindergarten year.

May 21, 2009 Dental appt Red Hill, PA
Chemo kids have lots of dental issues,
No problems we can now be seen 3 times per year. YEA!

May 22, 2009 Orthotics appt Wilmington, DE
Fitting and pick-up of new brace

June 3, 2009 Kindergarten registration.
A dream comes true!

June 11, 2009 Pediatric appt Chalfont, PA

July 15, 2009 Miss Beth at our home
Physical therapy

July 16, 2009 Grand view hosp, Quakertown, PA
Blood draw to check immunization titers.

July 21, 2009 Miss Beth at our home
Physical therapy

July 23, 2009 Pediatric visit, Chalfont, PA
HepA vaccine

July 24, 2009 Audiologist appt Elverson, PA
New hearing aid molds made

July 28 Miss Heather at our home
Hearing support services

July 30, 2009 Orthotist, Wilmington DE
Make adjustment to new brace, foot pain.

Miss Beth at our home
Physical therapy

July 31, 2009 Mrs. Reynolds, Harleysville, PA
Reading support because children with a hearing impairment
Have a difficult time learning to read.

August 3, 4, 5, 7, 2009 Mrs. Reynolds, Harleysville, PA
Reading support

August 4, 2009 Miss Heather at our home
Hearing support services

August 10, 11, 12,19,20,21, 2009 Mrs. Reynolds
Reading support

August 25, 2009 Audiologist appt, CHOP Bucks co, Chalfont PA
Hearing aid check and hearing check.

August 31, 2009 Pediatric appt, Chalfont, PA
Seasonal FLU vaccine

Sept 17, 2009 Drama Kids, Telford, PA
Started Drama Kids to help support speech and articulation

September 21, 2009 Dentist appt Red Hill, PA
No problems

September 24, 2009 Drama Kids, Telford, PA

October 1, 8, 15, 22, 29, 2009 Drama Kids, Telford, PA

October 10, 17, 24 2009 Mrs. Reynolds
Reading support

October 13, 2009 RUSK at NYU, NY, NY
Neuropsychologist eval because of issue noticed by reading teacher

October 16, 2009 Hospital Special Surgery, NY, NY
Orthopedic 2nd opinion regarding hip/pelvis & leg lengthening surgery
November 5, 12, 19, 2009 Drama Kids, Telford, PA

November 5, 2009 Audiologist appt Elverson, PA
Ear molds

November 12, 2009 A.I. duPont Hospital for Children, Wilmington, DE
Fitting for his 1st wheel chair; he picked Candy Apple Red!

November 13, 2009 Pediatric appt, Chalfont, PA
Ear flushing to remove excess wax; hearing aid mold stimulate the gland
In the ear that secretes wax.

November 14, 28, 2009 Mrs. Reynolds
Reading support

November 18, 2009 Audiology appt, CHOP Bucks Co
Hearing aid check.

November 22-23 Memorial Sloan-Kettering, NY
Post-treatment side-effects clinic and pulmonary function study
PFT did not show any problems but we were given a RX to go to duPont for a more involved study. He had lung mets with surgery and lung radiation.

December 3, 10, 17, 2009 Drama Kids, Telford, PA

December 5, 2009 Mrs. Reynolds
Reading support

December 6-7 Boston Children’s Hospital, Boston, MA
Orthopedic evaluation for 3rd opinion on hip/pelvis and leg lengthening.

Peter also receives weekly PT & OT at his school and biweekly hearing support services.

He is doing well. Now that I have typed all of this out I understand why I’m so darn tired.

In spite of all of the necessary medical care we have had many nice things in our lives as well, Dennis surprised Peter and I with tickets to see Chitty, Chitty Bang, Bang back in April at the Academy of music. We had a wonderful time and our little theatre buff loved the show. Our lives were hectic in February (my father was ill) so in April, we gave him a Surprise Birthday Party. It was at Mr. B’s coffee house at Calvary Church of Souderton. A bunch of his buddy’s came for cake and to play in the large play land there. He attended 2 different Vacation Bible Schools this summer; the first was at Covenant Presbyterian Church in Vernfield, PA and the second was at Towamencin Mennonite Church in Kulpsville, PA. They are exhausting weeks but the fun he has, the friends he makes and the lessons that he leaves with, make it all worthwhile. He played soccer on our community team for the third season, July 6 – Sept 9th. He had a blast and I’m always surprised by how hard he works and how much he really can do. He will always be my hero. He attended 2 summer camps at Penn View Christian School; Kilobits, a computer camp and Down by the Shore, a chance to get wet and learn about his favorite things, sea creatures. July saw the start of something new for my men, their first Father-son baseball game attendance. Dennis bought tickets for the 2 of them to watch the Lehigh Valley Iron Pigs play in Allentown, PA. He was invited to many birthday parties by his friends. This was the first summer that his legs were long enough that he was able to ride on the seat of the water-wheel planter next to my sister, Nancy. He rode through the fields with her and helped to plant some vegetables. He was very excited about that!

I guess the high-light of the summer for me was when it ended and he rode the school bus for his 1st day of Kindergarten, a day we were told he would NEVER live to see. What amazing joy and pride came with that milestone! Dennis took the day off from work and Nancy, Ryan, Grant, Grammy and Uncle Welly all came to watch and cheer. I took 87 pictures (yes, 87) and watched through tears as he boarded the bus. Then I got in my car and followed the bus to school, just to be sure that everything went o.k. Then I got out of the car and took more pictures. I went home and waited for the bus to pull back up to the house and guess what? I took more pictures of him getting off. I also, took pictures of him while we waited for the bus for about a week or two. I have since gotten used to the idea of him going to school and I have basically stopped taking pictures unless he looks adorable (which I feel he often does) and then I take more pictures. We have spent a lot of our morning bus stop time throwing and catching the football. We have both improved. We purchased a 4 seat subscription to the Walnut Street Children’s Theatre in Philadelphia this year. We have enjoyed the shows and the friends that Peter has invited. We have also enjoyed seeing the following shows; Walking with Dinosaurs in Atlantic City, NJ. The Wizard of OZ, Hershey, PA. With friends Nick and Tyler. Stars Wars in Concert, Philadelphia, PA. With Aunt Nanny, Uncle Jamie, Ryan & Grant. The Radio City Christmas Spectacular during our last stay at Sloan-Kettering. We also gave ice-skating a try at Rockefeller Square (something I have always dreamed of doing with him) It was extremely difficult for Peter and very stressful for Dennis and I because Peter can NOT fall. My heart sank watching him struggle but the instructor that as helping him was lovely and he came off the ice feeling like a champion. Peter was blessed by The Philadelphia Phillies and a very special meet and greet with our favorite pitcher Jamie Moyer. Yes, I took pictures of that too.

The year has also brought many changes our way that have been difficult to handle. My father lost his battle with cancer on May 9th he was the loveliest of men and my dearest friend. I can honestly say that I miss him every day. I long for the sound of his voice and his laughter and to see him driving though the fields on a golf cart filled with grandchildren. His caringbridge site is www.caringbridge.org/visit/freedsproduce. Our border collie, Bailey Jayne lost her battle with cancer on November 25th. She was mommy’s girl for over 12 years and I miss her sweet face waiting for me at the front door and the sounds of her and Peter playing in the morning before school. I’ve never been a fan of cancer and now I’m just sick to death of it!!! Where is the cure??? Please pray for the men and women in medical research that God would impart incredible wisdom on them and that 2010 will be the year that holds that cure for this terrible disease.

Thank you for your continued prayers and support of our small but special family of 3.

Friday, April 10, 2009 11:57 AM CDT

Peter did very well on his last trip to NY for scans. He had some anxiety about being in all the scanners without anesthesia but he did well. We had practiced for this day and it paid off. It was nice to arrive at Sloan-Kettering without the luggage and linens necessary for the 3 day stay at the Ronald McDonald House.

They were waiting for us in the infusion room and we had prayed that Peter’s line would be placed on the first try (one needle stick, please). Well, it was sort-of, all 3 were placed on the first stick but they were unable to draw labs out of them or flush them. On the 3rd try they were able to place a small gauge needle into the top of his hand and draw his labs from it. Dennis waited in the hall outside the infusion room and could hear him screaming with each try. I held Peter on my lap and hid my tears from him as they went from arm to arm looking for a good vein. Peter held up well considering all the attempts.

The next snafu occurred when we were unable to get his contrast. The order was in the computer to release it to us but the pharmacy was closed. By the time it was released he had a very brief period of time to choke it down and choke he did; choke, gag, wretch, and cry and nearly vomit it down. We were near the end of the cup and he was such a wreck that Dennis said, “throw it away, just throw the rest of the container away.” I couldn’t get it into the trash can fast enough and I have never loved my husband more. Then entire time I’m thinking will this nightmare every end?! I’m sick to death of watching my child tortured over and over again!

More fun to come in nuclear medicine. Remember the small gauge needle that was finally placed in the top of Peter’s hand? Well, it was too small to inject the contrast into during the scan. JUST SHOOT ME! Now I’m crazed!!! You really have never seen anything like a good Mother fighting for her child. I get the attention of every nurse, tech and doctor that will listen to me involved and finally the nuclear medicine supervisor. Mission accomplished; they have someone physically standing next to the scanner pushing the injection into Peter line with a fine gauge needle that was compatible with the line he had placed in his hand. So for the next 30 minutes Peter and I play freeze tag in the scanner. He lies very still and pretends that he is riding into a volcano and I stand at his head and tell him he’s frozen until the scanner stops and he gets to ride back out of the volcano. As is his style he rides into the volcano, freezes and waits for the ride out…what a great kid!

We leave nuclear medicine head to the play room and get some food into the belly of our hungry man. Interestingly enough they were having an inaugural party in the play room. The child life people were dressed like secret service men and they had large screens T.V.s available to watch President Obama take his oath of office. We were given American flags to wave and hats with flag bands to wear. They served hot food and had a sparkling cider toast to our new President. I looked at Dennis and started to cry, “I just can’t believe we are here, again, experiencing life inside the walls of the pediatric cancer center playroom”. He said, “Its fitting isn’t it” “We have experienced every sorrow, joy and celebration we could think of in these 4 walls”, so why not the inauguration of the President of the United States.

We head to MRI and knew that this would be a tough scan for Peter. He had to lie still for about 1 ½ hours. He really was a trooper but near the end of the scan he just couldn’t take anymore and he started to cry. Well, that was all I could take and I pulled him out of the scanner and told him he was done. I know I sure was!

The great news is that all of the scans were free of disease and Peter is CURED! We were asked to return annually for a chest x-ray next year and an MRI the following. There will not be PET/CT in the future because they are done looking for disease. No more contrast to drink and no more radioactive injections. Hip, Hip Hooray! We made it!

The doctors were pleased with Peter’s happy outgoing nature and his ability to move around. We discussed the upcoming surgery to rebuild his right hip socket. This was proposed by his orthopedic doctor at A.I. DuPont Hospital for Children in Wilmington, De. He wants to use cadaver bones to graft a right hip socket for him. The sarcoma team at Sloan basically said, “I wouldn’t do that if I were you”. Can he walk…yes, can he run…yes, is he in pain….no, and did he have massive amounts of radiation to that area…yes. He needs a minimum of 1 -2 other opinions before you proceed.

Return in 1 year for a chest x-ray, no hip surgery, and no more cancer. Thank you for your prayers!!!!

Peter turned 6 on February 4th; we celebrated with the family and friends who were with us for his first and very painful birthday party. This year was a blast it was simple and happy and stress-free. We wish for Peter many, many years of happy, healthy, stress-free celebrating.

He lost his 1 tooth on Friday, February 27th. We were so excited. We were driving in the car with Grand pop and we pulled off the street so we could call Dad and take some pictures. He was so proud and he looks adorable. Remember when we were told that he would not have secondary teeth coming because he started chemo before his tooth buds formed? Well, right behind the little hole that his tooth fell out of was the next tooth sticking up out of his gum; like a beacon of hope that God’s miracle of healing for Peter will continue. Just one more sign from our awesome God that he has never failed Peter nor left him. We will never forget all that we have endured on this journey and all the ways that God has shown his face and his blessing to us.

We have been working with the school district to transition Peter into Kindergarten at Vernfield Elementary School in September. He will need hearing impaired services and PT. He will also be evaluated for OT. Please keep this process in your prayers as a smooth transition and high quality services will be an important part of his school success.

We will be traveling to DuPont on Thursday to see his orthopedist and to have a gait lab analysis completed. He has out grown his leg brace and worn out his shoes. So he will be casted for a new brace and a lift will be added to a new pair of sneakers.

He has an appointment with his audiologist next Wednesday for a hearing aid check.

Lastly, and sadly, please see the link below for our friend Big Ryan. Ryan has earned his angel wings. Please visit his site and leave a note of encouragement in his guest book for his family. Please keep them in your prayers as they are faced with the impossible task of picking up the pieces of their shattered hearts.

We wish the peace, love and joy of serving a Risen Savior…Happy Easter from the Zucca’s

Wednesday, January 21, 2009 7:18 AM CST

Pete's scans are NED!
He's clean, clear & CURED!
More later.

Wednesday, January 14, 2009 2:59 PM CST

We’re heading to NYC on Tuesday, January 20. Peter has scans on that day. We need to arrive in clinic by 7:00am. The good news is that this will be Peter’s last PET scan because they will no longer be looking for active disease, just damage caused by disease or damage caused by treatment.

We have very specific prayer requests for this trip. First we need traveling safety to and from the city. We have decided NOT to use anesthesia for any of his scans. Anesthesia is too dangerous for him and he has had many breathing problems in the past. His PET and CT will be combined into 1 PET/CT scan. What this means for Peter is this; he cannot drink his CT contrast in his, favorite, Rosenberger’s iced tea because it is sweetened. So he will need to have his contrast in Crystal Light, which is fine if you like Crystal Light. We have started giving him a small glass of it daily. He is starting to like it (sort of). So at 7:00am he will start drinking 12 ounces of Crystal light Lemonade with contrast added. He must finish by 7:45am. He will have nothing to eat or drink after midnight on Monday until he drinks the lemonade. I’m hoping that will help it to go down easier.

Somewhere in that 45 minute window (around 7:20) he will see his medical oncologist, have a physical exam, be sent into the infusion room for his peripheral line to be placed. PLEASE, pray that it goes in on the 1st try (this is the most anxiety producing part of his day) he has shed many tears in anticipation of the “screw driver” as he calls it. His labs will be drawn from the line and then an IV will be hooked-up to it.

We then head to the first floor to nuclear medicine. He will have a radioactive injection put into the line, followed by a saline flush. Then we wait for the scans to begin. They are scheduled for CT 8:00am PET 8:15. They are combined in the same scanner so he will be in that tube for a fairly long time, although not as long as it would take to do the 2 scans separately. We were told that 105 minutes have been scheduled for him in nuclear medicine. Please pray that my squirmy little friend will be very still for 108 minutes! Last January he was able to have the PET scan without anesthesia. But we have not tried any of the others. We are practicing pretending that we are frozen (like freeze tag) in a moving tunnel that drives us into a volcano. It worked last year but it was for a shorter period of time.

We then have a very long break in our schedule. We will take him out into the city for some breakfast and then back to the hospital playroom. His MRI is at 4:30, please pray that something will open-up in the schedule and we will be scanned much earlier. Last night Dennis found a MRI website complete with the loud banging sound of the MRI machine. Tonight we will practice laying still while we listen to it. Please pray that PETER will be able to remain calm and hopefully fall asleep for the 45min – 1 ½ hour MRI. He cannot move at all during this scan or the entire thing will have to be repeated, YIKES! Dennis and I will both be present during the CT/PET but only I will be allowed into the MRI room.

Once the MRI is finished his IV will be disconnected and the line will be pulled. He dislikes the line being pulled almost as much as he dislikes the line going in.

When everything is completed Dennis will be driving us back home just in time for the evening rush. We are hoping that the ride home will be much easier (inside our car) than what we have become accustomed to, Peter normally is screaming and thrashing for at least 1 full hour from the after affects of anesthesia. We are hoping for some peaceful movie watching, instead.

I will update when we return. I guess I’m so confident that God has healed Peter that I forgot to ask for prayer for clean scans. Please pray for clean scans.

Thanks for your continued prayers and support.

Also, my Dad's website www.caringbridge.org/visit/freedsproduce

Thursday, December 25, 2008 0:06 AM CST

The House is quiet…I’m sitting at the computer writing this, our most joyous, update ever. Yesterday, Christmas Eve Day marked the 5 year anniversary of Peter’s diagnosis. The gift of the 5 year anniversary is the word CURE.

Peter is now officially CURED of his cancer. We spent most of our day praying, praising God, crying happy tears, hugging each other and cheering the end of the fight for Peter’s life. The cell phone minutes soared as we called family and friends to make sure they were aware of our joy.

We will spend Christmas morning together, just the 3 of us, as we did on that very sad Christmas morning 5 years ago, we will start our day in prayer, as we did on that day.

On that morning we prayed that God would quickly take Peter back home with Him, that his suffering would end and that we would be strong enough to survive in this world without him.

This year we will Thank God that His answer was, “no”, that our son is still with us, that our family remains intact and our marriage has survived this difficult journey. Our home will be filled with Peter’s laughter and our hearts will be filled with love for each other and gratitude to God for all that he has shown us and taught us along the way and for all the Grace and Mercy he has showered on Peter, Dennis and I. We praise Him for His precious gift of life. How's that for the best Christmas gift ever?

For unto us a child is born and the government shall be upon His shoulders and his name shall be called Wonderful, Counselor, All Mighty God the everlasting Father, the Prince of Peace.

We wish each of you a very Merry Christmas, we wish you love and laughter, and we wish you peace and joy.
Oh, and we wish you health, amazingly good health! Most of all we wish for you a close personal relationship with the All Mighty God.

Please, keep us in your prayers as we still have a long road ahead of us and remember our friend “Big Ryan” his link is below, still fighting this terrible disease; as well as the families whose children have lost their fight.

Friday, October 24, 2008 8:07 AM CDT

I was able to post new pictures, yesterday. I’m sorry but I haven’t been able to figure out how to re-size them. We have been very busy since our last update. Peter had a wonderful 5th birthday party at Tumbleweeds gym on Saturday afternoon, February 16. It was a pirate party complete with balloons, cake and a Piñata. They have all sorts of equipment for the children to play on and he had a wonderful time.

He had a speech evaluation by the intermediate unit on February 28th. Surprisingly enough his speech vocabulary and articulation remain a full 2 years above his age and he tests as a 7 year-old. He will not need to be re-evaluation for speech again, unless we see a problem with the development of future speech sounds. This is really remarkable given his hearing impairment.

We went back to NYC on March 6th for an evaluation with Dr. Sklar, at Memorial Sloan-Kettering Cancer Center. Dr. Doom, I mean Dr. Sklar is the head of the late term side-effects clinic. The evaluation started with his assistant asking some questions, taking some notes, and performing a physical on Peter. Then Dr. Sklar entered the room. He started to review with us a packet of info on all of the treatments Peter had received and all of the myriad of problems that he will have in his life, as a result. It was ugly. Dennis took Peter out of the room so that he would not hear any more of it and I stayed for the rest of the torture. We were told to have regular evaluations for his heart, lungs, hearing, kidney’s, skin cancer, dental problems, learning delays and disabilities, etc. etc. etc. YUCK!!! We were asked to return again to see Dr. Sklar a few times per year. We will return only 1 time per year during our scan visit. We don’t have the stomach for it and he is really only collecting data from all of the physicians with whom Peter is actually treating.

We went to NYU Medical Center on March 13, 20 & April 3 for Neuropsychology evaluations. They were long days and Peter handled the testing well. Dr. Rosen was very sweet to Peter and made several recommendations regarding school, hearing, and fine motor issues. As a result of our visit there Peter is in Pre-Kindergarten instead of Kindergarten. Her blanket recommendation for any child that is so ill at such a young age is a minimum of 2 pre-school years. We kept Peter out of pre-school until we were fairly certain that he would survive his cancer. We did not want to take it away from him should his disease return and we did not want to subject all of the children and their families with reality of pediatric cancer and the loss of the life of a child. So Peter had only completed 1 pre-school year and he is getting his 2nd year in now.

Dr. Rosen suggested that we have Peter’s hearing evaluated again and put hearing aids and an FM System to work to aid his future speech development and his ability to follow and participate in classroom activities. She also felt that his fine motor skills were not up to speed. This is from a side-effect of 1 of his chemo’s. It causes neuropathy of the hands and feet.

We traveled to AI DuPont in Wilmington, DE on March 17th, Gary at Lawall and Sons prosthetics casted his right leg so a new brace could be made. We dropped off a new shoe so that a lift could be added.

We returned to DE on March 24th for the fitting for the new brace and to pick-up the brace and shoe.

We were back in NYC at Sloan-Kettering on April 7th & 8th for pre-admission lab work and a day in the O.R. to have multiple cavities filled a root canal and sealants placed on his teeth.

On April 17th we saw Dr. Rosen at NYU and we will return to see her on a yearly basis.

April 24th we return to A.I. DuPont for evaluation by Dr. Freeman Miller. Dr. Miller is Peter’s orthopedic specialist. The visit was fairly uneventful except for the fact that he feels there will be some hip surgery in Peter’s future. His right hip socket is not forming properly. He wants to graft a hip socket for him out of cadaver bones. As a result of Dr. Miller’s hip comments we have joined the YMCA and placed Peter in swimming lessons. Our hope is to get him as strong as possible before surgery and hopefully be able to avoid it. If we are unable to avoid the surgery and he needs PT we can live at the Ronald McDonald House in DE and he could rehab in the pool at DuPont.

May 15th he underwent an O.T. evaluation with the intermediate unit. I requested the evaluation based on Dr. Rosen’s suggestions. I was very dissatisfied with the test and the results. I was told by the tester that, “my child is my responsibility not the community’s” and that I should take my child and use my own insurance to have him receive O.T. not expect the I.U. to provide services. “When my son needed speech therapy that’s what I did.” I was furious! I was not surprised to learn that Peter just missed the cut-off for services. I will be very happy to start Kindergarten next fall and have all of his services thought the school district.

June 29th we spent the afternoon in the local E.R. Peter had a severe ear infection.

June 30th we went back to Lawall and sons to have his brace lengthened.

July 9th we went to the pediatrician to have him cleared from the ear infections because we had an afternoon appointment with our new audiologist.

July 9th Dr. McHugh, at Children’s Hospital of Philadelphia, Bucks Co., evaluated Peter and said, “He would definitely benefit from bilateral hearing aids”.

July 11th we went to see Dr. Kauffman, in Collegeville, PA, to have ear molds made for a trial with loaner hearing aids.

July 21st we returned to Dr. McHugh’s office with the bright blue ear molds that Peter had picked out for himself. She attached the molds to the aids and programmed them for the missing frequency. When we drove home I put Peter’s favorite CD in the player. It was the first time that he ever sang along. He has been singing ever since.

August 15th we again, saw Dr. Kauffman for new ear molds. They were made incorrectly so we returned on August 28th to have new molds made

September 3rd we returned to see Dr. McHugh to have Pete’s permanent hearing aids and FM system programmed. His new aids are bright blue and silver with green, blue and white swirl ear molds (you can barely even notice that he’s wearing them…LOL).

October 2 we were back at DuPont with Dr. Miller and LaWall & Sons. Dr. Miller indicated the Peter’s is having more noticeable signs that his pelvic radiation has caused permanent damage to his right hip and pelvis. We had a new shoe lift added and he was casted for a new brace. Oh, but we can’t’ have a new brace because he out grow his last one faster than the insurance company say’s that he is allowed to. Got to love the mentality of the insurance industry!

Today we have a dental visit near home to get his teeth cleaned and to evaluate how many cavities he has prior to our return trip to NYC in January for scans and many other things.

Thanks for all your love and support. Please continue to keep Peter and his many cancer related health issues in your prayers.

Tuesday, February 5, 2008 10:17 PM CST

Yesterday, at 9:00am, Peter turned 5 years old. We are thrilled for him! He is so proud to be 5. He celebrated with cake and our church family Sunday morning, dinner and cake with our immediate family Sunday evening, and cupcakes with his classmates Monday morning. Monday for lunch and dinner I made him his favorite fish. One of the day's nicest surprises was a phone call from Dr. Wexler, his oncologist at Sloan-Kettering, to wish him a Happy Birthday. He is such a kind and special man and we are blessed and thankful that he has been part of our journey! He will have a party with his friends next Saturday at Tumbleweeds gym in Harleysville.

Today, Peter, Jayner and I took a ride to Celebrity Kids for some birthday photos. I’ve added them to the photo album. I hope you enjoy them. This is our third year at Celebrity Kids and we are pleased with the results, again. They have been kind enough to hold all previous photo shoots in their hard drive (just incase things went badly and we wanted all of them). Today I had the privilege of telling them, “It’s o.k. to delete them because Peter is cured”! Everyone was very excited for him.

Thank you for all of the cards, calls, e-mails and gifts that Peter received. We appreciate your continued prayers and support.

Friday, January 11, 2008 5:08 PM CST

We are home! We are all tired and Peter is really struggling to get back into his routine. I have been waiting to update because I did not have final results on all of his tests. The Oncologist e-mailed me today and most of his correspondence follows:

Peter's scans are all "clean". There is no evidence of active or recurrent tumor in any part of his body. There is evidence of stable post-operative changes in the right side of his pelvis. There IS also evidence, on the CT scan, of spondylolysis of the right L4 vertebral body. There is no activity in this region on the PET scan. Although this can be a cause of back pain, I am not concerned about it, and doubt that it is causing any symptoms but, again, I will try to speak with Dr. Miller to make him aware of the finding and defer to his judgment if he wishes to obtain additional testing. At some point, perhaps when you meet with Dr. Sklar, it might be appropriate to discuss obtaining baseline bone density testing for Peter, although the results of this testing in kids is not quite the "science" that it is in adult women.

His echocardiogram was normal. His hearing test remains ABNORMAL and UNCHANGED from the prior test in May; as before, it demonstrates normal hearing through 2000 Hz dropping to mild to moderately severe sensorineural hearing loss bilaterally. As before, it is the recommendation of the Speech and Hearing group that Peter should receive an educational assessment (either through your school district or, if you choose to follow-up, with Dr. Carol Rosen) so, if necessary, appropriate support services can be provided (i.e., speech therapy, aural rehabilitation, speech reading). They also recommend an FM system for class room use be made available, that he receive preferential seating in the school near the sound source and that visual cues to accompany the message signal be made available; finally, they recommended f/u testing in 6-12 months.

His labs were, for the most part, normal. His blood counts are very mildly abnormal; specifically, his hemoglobin of 12.4 is very mildly anemic and his platelets of 157,000 is just below the lower limit of normal (160,000). I obtained iron studies (yes, that's what the additional blood work were for) to assess if his mild anemia might be from an iron deficiency; it is not. I do not feel that additional diagnostic testing is needed to further work-up this mild degree of anemia, however, he should continue to have his CBC checked twice yearly. His electrolytes, kidney function tests, and liver functions tests were all normal except for a minimally low CO2 - a finding of no clinical significance and potentially the result either of his coming in NPO that morning or from the ifosfamide. His urinalysis remains abnormal and shows dipstick evidence of small amounts of sugar, blood, and protein in the urine. This is a likely side effect of his chemotherapy, specifically the ifosfamide (but also, potentially, the cyclophosphamide and/or the cisplatin). There is no evidence that it has worsened over time, but it requires continuous follow-up; this is no doubt one of the things that Dr. Sklar and his team will review with you when they see you in March.

Scans should continue at this point on an annual basis. I think that he should continue to be scanned for the indefinite future, although the further out he gets from diagnosis, the less these scans are to monitor for the risk of recurrence and the more they are to monitor for late complications of therapy. As we discussed, at some point in the next couple of years, I would also like to get baseline Pulmonary Function tests on him and then continue to do those on an annual basis.

We are very happy that all of the scans are clean! We are relieved that our scans will be done on an annual basis. Peter is now (obviously) much older then when we started and the testing has become very traumatic for him. The tears started to flow on Monday, about 2/3rd's of the way through the hearing test and they’re still coming down. It is very sad for all of us. And it’s especially sad for him. He did a great job during his hearing audiogram in spite of the fact that the headphones were causing him discomfort. The test went something like this. Peter and I (Mom) were in a soundproof room and the instructor was outside of it. A series of sounds came through the headphones and Peter had to raise his hand when he heard them. He became bored with this so they gave him a bucket of brightly colored letters to place on the table when he heard the sounds. A few minutes later he was instructed to repeat words that he heard.

Amy: say tree
Peter: tree

Amy: say bird
Peter: bird

Amy: say red
Peter: how about I say green
Amy: Peter I want you to say red!
Peter: but I like green
Amy: Peter, please say red
Mom: hysterical laughter
Peter: alright, red

The test results showed improvement over the last round in May. So, he will not be getting hearing aids. The audiologist explained that his hearing has not improved but he has matured and is able to test better than before. The reason for the improvement is not us important to us as the final results, better test score and no hearing aids. Way to go Peter; such a good boy and so very entertaining! The audiologist said, “I though I was going to Pee my pants when he ask if he could say green”.

The Echocardiogram went fine. Peter appeared to be completely relaxed just lying in bed watching Finding Nemo while the tech did her thing. We didn’t have a final result until today. Although, we left the exam knowing that it appeared unchanged from the last one.

The next stop was the dentist. There are 4 new cavities and they will all be repaired in March, under general anesthesia, and in the O.R. We have an appointment with Dr. Sklar in March, as well. He is part of the post-treatment side-affects clinic. That will be a new thing for all of us. As far as I can tell he will be monitoring Peter’s development to see what kind of damage he has from treatment and to take a proactive approach to handling them.

When we were finished at Sloan on Monday we returned to the Ronald McDonald House. Peter was unwilling to leave the room for the remainder of the day. Dennis went out for a walk around town and picked up dinner and brought it back to the room.

We were in the clinic early on Tuesday morning. His physical exam went well and he discussed some of his concerns with Dr.Wexler. He asked him to check his back and rub it because it hurts him. He tried to avoid getting his line placed but that one never seems to work. We learned that there were 3 immunizations that he needed to repeat because he was not properly protected. Dr. Wexler said he could get them while he was still under anesthesia for the PET scan. I requested that they follow his CT scan on Wednesday because we had been practicing for a PET scan without anesthesia. He looked a little doubtful but indulged us.

Peter’s line was placed in the infusion room. Dennis held him, I held his legs and 1 nurse held his arm while the other one placed it. While they were working Peter was crying and screamed out, “You’re killing me”! That was all that Dennis and I could stand to hear. They drew his labs, connected his I.V. and we left the infusion room. Peter rolled his own I.V. pole down the hall and onto the elevator. (Such a big boy and so pitiful)

We registered in nuclear medicine and waited for the injection. When an hour had passed we went in to the scan room and informed the tech and the anesthesiologist that Peter was going to try it without the sleepy medicine. For a week or two prior to scans we pretended to ride a tunnel into a volcano and hold still like a statute for as long as we could. Well all that practicing paid off. HE DID IT! 4 years old and frozen like a statue for 20 minutes. It was great…no recovering from anesthesia, no breathing issues, and we were able to feed him. He had been fasting since 8p.m. the night before.

We headed back to the Ronald and them off into the city. We promised Peter a stop at Toys-r-us and ride on their big Ferris wheel. He fell asleep in the stroller so Dennis and I made a stop at one of our favorite Italian restaurants. Peter awoke just as they served the meal. I walked back to Sloan to pick up the contrast and they went to the toy store. I picked up the contrast spoke with Dr. Wexler and got the great news…THE PET IS CLEAN! No more scans for one year! Yippee! A break for Peter! A break for all of us! I met up with my guys at the toy store. They had completed the ride on Ferris wheel and Dennis was able to pull a few strings to get him on the Scooby-Doo Mystery Machine car. Peter was thrilled! He had been through the entire store and picked out a set of Nerf bad guy shooters (his reward for a job well done in that scanner). We walked back to the house and went to bed. We watched the biggest loser on Monday and Tuesday night. Peter really likes the purple team and hopes they win. He’s such a piece of work. I adore him!

Wednesday morning’s challenge was to get him to drink 8 ounces of contrast for his CT scan. Yea, right. We started the usual way, 8 ounces of Rosenberger’s Iced Tea in a bottle then add contrast, stir with a nice fat straw from McDonald’s, and drink. Wrong! Peter had no intention of drinking that rotten stuff. We tried our usual bribes. You can take your friends bowling. You and Mom can have an extra day at the sea shore just the 2 of us and we’ll go on all the rides. We’ll take you to Great Wolf Lodge. Peter’s response to anything we offered, “It doesn’t matter what you say” “I’ll NEVER drink it” Holy crow! We hadn’t considered that he is a 4-year-old who thinks that he’s a teenager! He refused everything we offered and we were left with threats of the NG tube. You may remember the NG tube from his pre-op surgery days. The nasty little tube that goes into the nose, down the throat and into the stomach, then they push the contrast down the tube. Well at that point we were all in tears. Three days of this testing is just so very hard. He finally got all of it down. We finished 7 minutes past the time we were given. We put our tired, crying little man into the stroller and ran through the rain for six blocks.

His I.V was reconnected and we head up to the 11th floor to MRI. He fell asleep in my arms and we waited for about 1 hour and fifteen minutes for him to reappear, sound asleep and in a rolling crib. We followed him, the anesthesiologist and the world’s most miserable nurse down the hall (and the elevator) and into CT scan. We waited about 15 minutes for him to reappear. He was already awake and had received his 3 immunizations. He was tired but pleasant and boy was he hungry! We went back to the 9th floor just as the peanut butter and jelly sandwiches were being unloaded into the pantry. What good fortune.

We returned to the Ronald, packed up our belongings, cleaned the room and left the city. We returned home soon after Ryan and Grant got off the school bus, perfect timing to start making good on the bribes. We picked up the boys and went to Zach’s for pizza. Then back to their house for a night of playing. Peter’s fun was cut terribly short by a fever and pain in his injection site and his peripheral line site. He wanted to stay with the boys and Aunt Nanny but I had to stay and hold him. He spent most of Wednesday evening, almost all of Thursday, and part of today crying because he is tired, sad and sick. Yesterday, my Dad stopped for a visit and to stay with Peter so that I could go to the grocery store. He told my Dad, “I’m so sad; I don’t even have enough words to tell you why”. I was not able to leave him to go shopping and my poor Dad’s heart was broke in two. He will not walk because of the pain in his leg and he will not use the arm that his line was in. I told him that I’m proud of him for being such a big brave boy. He told me he doesn’t want to be big anymore. He wants to be my baby again and be carried and fed.

In the midst of all this great scan news the enormity of the damage that all of this continues to do to my sweet boy breaks my heart. Peter has been napping while I have been typing. I have left the desk twice to respond to his cries. He has been sound asleep both times. Please pray for an end to the cancer nightmare for all the children.

Thank you for caring and for your continued love, support and prays. Melanie Hagan, you are a great friend and a great cook. Thank you.

Tuesday, January 8, 2008 8:19 PM CST

From Dawn: Great news NED (no evidence of disease)from the PET scan. We are very proud of Peter, he stayed very still in the PET tube for 20 minutes, WITHOUT anesthesia.

Later we went to Times Square & had lunch. Dennis & Peter went to Toys R Us for a ride on the world's largest indoor feris wheel while Dawn went back to Sloan for PET results & to pick up the contrast for tomorrow. When Dawn got back to Toys R Us, Peter had finished wandering the store & had picked out his toy for being such a good boy in the PET scan. He got "bad guy shooters".

Tomorrow, Peter has to drink the contrast & then the MRI. While he is asleep, he'll get 3 immunizations & go to CAT scan. They'll pull his lines while he is still asleep. When he wakes up, we'll head for home.

Please pray that he can drink the contrast & is safe from the anestiesia. The hope is that since he did not have anesthesia today, tomorrow will be easier.

In case you were trying to call Dawn, or wondering why she did not call you, her cell phone was dead all day.

Please pray for Peter's continued health & that the Lord will POUR His blessings on Peter & give Dawn & Dennis the energy to keep up with him. Love, Trish

Monday, January 7, 2008 7:33 PM CST

Dawn asked me to post this update:
Dawn, Dennis & Peter were able to check into Ronald McDonald House before going to Sloan. Peter had his hearing test today. His hearing tested better in both ears. It's most likely due to his maturity and attention level than an improvement in hearing, still, this is good news. He had an echocardigram. The doctor hasn't read the study, however, the technician feels it is unchanged from the previous one, which was very good. He had a dental exam, also. He has 4 cavities that need to be filled, that will be done on another visit.

They have to be at the hospital at 8:00AM tomorrow for a clinic visit, followed by line placement & getting the IV's connected. Then it's off to nuclear medicine for the PET injection. After an hour, Peter will have the PET scan. Hopefully, he'll be able to go into the "tunnel" without anesthesia. Wednesday is the MRI followed by CT, (he needs to drink the contrast for the CT).

Please pray for Peter to be able to stay still inside the PET so that he will not need anesthesia 2 days in a row. Please pray for clean scans and a safe trip home for the Zucca's. Pray for toes that wiggle & that precious leg to continue to grow and no more side effects from the chemo. Pray for a cure for those still battling this disease. Pray for the doctors, nurses & the rest of the caring folks that work in the battle against cancer. Praise God for Peter's healing and for all He's done that we have yet to see. Love, Trish

Monday, December 24, 2007 6:11 PM CST

Today marks the 4-year anniversary of Peter being diagnosed terminal with cancer. It is also the official day that he (in a group of children with his disease progression) is statistically considered to have a 90hance of survival. But, his oncologist has informed us via e-mail that he considers him “ as an individual” 100ured of his Rhabdomyosarcoma.

It is a little hard to take it all in after such a long and difficult journey but, we are doing our best and we are celebrating the birth of our Savior and the survival of our son.

Dennis and Pop-pop Zucca went to A.I. duPont today to fulfill a promise that we made a long time ago…to always return to the room Peter spent Christmas in and bring a gift and hope to the child and family that are currently occupying it.

Pop-pop will spend the next few days with us. He and my parents will be here early tomorrow morning so that they may enjoy, with us, the joy of watching our little miracle boy on Christmas morning.

We wish you and your family a very Merry Christmas and a very happy and HEALTHY New Year.

We thank you for your continued love and support. Please keep Peter in your prayers, he has much to over come and we will be at Sloan-Kettering, January 7th, 8th, and 9th for hearing tests, dental exam, blood works, physical exam, PET scan, MRI and CT scans. He will endure a lot during those three days and we will be staying in the Ronald McDonald House. Please pray for safe travel, his ability to tolerate all the tests and great results. Please pray for his right foot and leg to grow and for his ability to move his foot and toes.

Wednesday, November 7, 2007 1:28 AM CST

Peter’s pre-school orientation went well. He saw his classroom, met his teacher, and got to play on the playground. He did not want to leave. My sister, Nancy and her son, Ryan joined us for the orientation. I don’t think any of us could really believe that he had made it that far.

We had an appointment with his pediatrician on August 27th as a follow-up to his round of antibiotics for his ear infection. While we were there I ask her to re-exam him completely because he is so tired and complaining of pain. She thought that he was fine and she couldn’t feel any masses. We left knowing that his ears were clear but the reason for the pain was unclear.

Peter started school on the 29th. Dennis took the day off of work so that we could take him to class together. We got out his Scooby-Doo backpack, dressed him in his “School clothes”, took pictures of him and us, and left with a couple of nice shiny apples for Mrs. Schmidt and Mrs. Ford. Peter was apprehensive about our leaving him in class for about 30 seconds. I on the other hand was very glad that Dennis was with me because I was crying so hard I would not have been able to see to drive. I couldn’t wait for school to end so we could pick him up!

Peter’s back pain was not letting up and we were scheduled to pick-up his new brace at A.I. duPont on the 30th. I called ahead and made arrangements for him to be seen by his orthopedist for an exam and x-rays. I was surprised to learn that he had a fracture in his lumbar vertebrae. We were supposed to take him home and keep him inactive in hopes that it would heal without any further issues. We also learned that his left leg had a growth spurt and the right did not, so his shoe lift was raised, doubled in height. We made an attempt to keep him as inactive as a 4-year-old boy can be but his pain increased and he started vomiting. So, I started freaking out and e-mailed his oncologist up at Sloan. They had him on the scan schedule for the next day to rule out relapse of disease.

Dennis and I were a mess. Peter was not too happy about going through scans, again. We left the city with the preliminary report of 2 spinal fractures and no disease. We lost another 10 years off of our lives in worry. We were very relieved that disease was not the issue but had no idea what kind of problems Peter was looking at; having such a major side-effect from his chemo, at such a young age. We requested prayer for Peter’s healing and our peace of mind, and to be able to find the right people to help him. A few days later I got a call from Sloan with the final results of the MRI: There are NO fractures, there is NO evidence of disease! Wow, what the heck just happened! It was all explained away as some type of vascular process in the spine. Our phone call went something like this:

Dr. Wexler: How’s Peter feeling?
Mama: I don’t know I’ll ask him, “Peter how is your back feeling?
Peter: Great, it doesn’t even hurt anymore”.
Mama: Well, Dr. Wexler is on the phone and he says that it’s not broken anymore.
Peter: Yeaaaah! Ask him if I can jump!
Mama: Can he jump?
Dr. Wexler: Tell him to go ahead and jump!
Mama: Dr. Wexler says you can jump.
Peter: Yeaaaaahhhhhhhh! He becomes a little kangaroo (jump, jump, jump) all over our Sunday school room at church.

Peter: Ask him if I can throw myself over, on the ground, on my back.
Mama: Can he?
Dr. Wexler: Well, I guess technically he can.
Mama: He says NO!

We left our classroom and told Pastor Mike the good news. Mike and Peter say a pray together, thanking God for the great news while they jump all over the room. God is good!

We have been having unseasonably warm and hot weather so we took advantage of it for a fall trip to the zoo with Nicholas and Tyler. The boys had a great time and so did the Mama’s. Peter’s physical therapy has been increased to weekly visits and he has really been enjoying the extra time with Miss Julie. She is a real sport and can often be found flying down the sliding board, rolling down a hill, or wearing Peter’s extra set of play goggles from his tool kit. Within reason, she will do what ever it takes, to get him to do what ever he needs, to get big and strong.

Since my last update Peter surprised me by showing me that he can now pedal his tricycle. He needs to get the pedals at just the right spot, but when he does “look out” he can really get pretty wild. He needs work at being able to keep his foot on the pedal but that is something that Miss Julie will help him master in the basement this winter. For now we are collectively over joyed for him. The soccer season ended and Peter is already talking about playing next year. He really wants his Dad to be his helper coach again.

He loves school and has been part of many activities, the book fair, spirit day for the Phillies (the school wore Phillies colors or shirts), a nature walk (where he and his classmates stomped on just about anything nature they could find), rectangle and circle show-and-tell, and Fall Fest Day (I got to join the class and help out by stuffing scarecrows and going on the hayride). Peter later told me that the best part was that Ethan’s mom and his mom spent the morning in class (I’m in love with him). He is such a social butterfly and has been part of many birthday parties this fall.

We should have been on the scan schedule at Sloan-Kettering for November, but they are very busy and didn’t have an opening until the week before Christmas or the day after. Neither Dennis nor I was overly excited about those two choices so we asked the sarcoma team if it could wait until after the New Year. We are now on the scan schedule for January 8th and 9th.

I can’t think of anything else going on with Peter’s health right now except that his left leg ended up having a growth spurt and we returned to duPont and had his lift cut back down to where it had been. A few days ago his right leg grew again and now he is back to being uneven. I think I’ll just keep an eye on those fast growing little legs of his, if he doesn’t get too far out of kilter they will even back out and we will save ourselves many miles on the road between Harleysville, PA and Wilmington, DE.

Thank you for your continued love and support of Peter and our family. Please keep his continued healing in your prayers. Specifically that his disease never returns and that the nerve damage in his right leg will heal. He prays several times each day for his foot to wiggle and his leg to grow. He wants to run and play without a brace. Pray that his hearing loss is stable and that he will not need hearing aids in January. Pray that the neuro-psychology evaluations will not show any evidence of learning disabilities and that his growth plates on the right hip/pelvis do not close before the left side. That could leave him very deformed as an adult.

Wednesday, September 5, 2007 7:16 PM CDT

We were in NY today at Sloan-Kettering for an unplanned MRI scan of Peter's back. The great news is that it was NED (no evidence of disease) However, there are two stress fractures in his lower spine.

We are very tired and I will update with more info tomorrow

Saturday, August 18, 2007 7:52 PM CDT

Today marks the 3-year anniversary of Peter’s surgery. We wanted to give Peter a very special day so we ask him to pick what ever he wanted for the day and so…Team Zucca spent the day celebrating. The morning started off a little slow because Peter has been under the weather. He has another ear infection and he slept very late. We thought that we were going to miss soccer but he awoke at the very last minute and wanted to go. After soccer we had Peter’s favorite lunch, ham and cheese sandwiches. Then we headed to Freddy-Hill for miniature golf and ice cream. Peter still had one more favorite thing that he wanted to do today so a very tired team Zucca has just returned from bowling.

Today for the first time we have posted four photos that we have not previously posted from the time of Peter’s surgery. The one above is of Peter and Dennis the night before his surgery and shows just how sick our poor little man once was…his NG tube is in place, he is bald from his chemo, and his face is very full from all of the steroids that he was on. It also shows his amazing spirit and joy…just look at his smile! That beautiful smile followed a very difficult day for all of us. This is our journal entry from that day:

Tuesday, August 17, 2004 7:52 PM CDT
Someone needs to tell the military about the nasogastric tube. It could be used as a secret weapon during interrogation.... tell me everything you know or we will insert a nasogastric tube. After today’s events I would tell them anything.

Peter had a very long and very rough day. The 1st tube took 3 attempts to place in the correct spot. He cried and screamed so much that I almost couldn’t take it. After several rounds of vomiting he pulled it out of his nose and it had to be placed again. After the 2nd tube was placed he was given mediation to calm him down. He then slept for several hours and when he awoke he was fine again.

The bowel prep is working very well and praise God he is moving his bowels with very little or no pain. Tomorrow morning Peter’s day starts at 6:15am when they take him from his room to the pre-op area. He will be in the OR by 7:30am.

Please pray for God’s hand to guide the surgeons. Pray for the miracle of his tumor peeling out of his body and away from his sciatic nerve. Pray that he will indeed be a candidate for intraoperative radiation therapy. Ask for divine healing a very speedy recovery.

Thank you for all your love and support and thank you Russ and Ev for coming to NY to pray with us.

The photos in the online photo album are very graphic and you may choose to open that album when your children are not present. They are photos of Peter following his surgical resection on Aug 18th 2004. They are still very difficult for us to view. What follows are the many entries that we placed on Caringbridge as we received updates from the O.R. on Aug 18th, 2004.

Wednesday, August 18, 2004 11:57 AM CDT
Hi Sorry this took so long but here is what we know:

At 8:00am the anesthesia department put Peter to sleep I was able to hold him from the time they started administering his medication until he fell asleep. Then we kissed him goodbye and handed him over to one of the nurses from the anesthesia department and they took him to the OR.

At 10:20am we received our 1st update. They told us that Peter’s incision was made at 9:55am. It took nearly 2 hours to place all the peripheral lines and they placed an arterial line (used to check blood pressure and draw blood samples) and to position Peter on the table.

At 12:45 we received our 2nd update. Peter is doing well, he is stable, they are still working and nothing is “out” yet.

We hope to have more info in the next couple of hours. Our social worker took us across the street to New York-Presbyterian Hospital to visit the pediatric intensive care unit (PICU). After Peter’s surgery he will be transported across the street for admission. This is the standard of care for a child of this age who undergoes such extensive surgery. The PICU was quite a sight for us to view. Each room has 3 beds and a nurse’s station in it. The nurse patient ratio is 2:3 or higher depending on the needs of the children. We got to see Peter’s room and his ventilator. What an overload for us.

The updates don’t come quick enough for us and the information is in very small amounts. It helps to know you are all out there waiting and praying. Thank you for all the guest book entries. Jean it was great to speak to you today I will call you again if there are any more Angel Haley sightings. I love you Jean.
Here is our very special 2:00 update

Praise God! We just heard from Peter’s surgeon. They have finished removing the tumor in the front of his pelvic bone. It was completely removed; there is no injury to his bladder/prostate or rectum/bowels. There are NO ostomies!!!!!!!!!!!!!! All the identifiable nerves are intact and uninjured! He is currently being radiated intraoperatively. GOD IS SO GOOD! When they have completed radiation they will close the front incision and start on the rear approach.

Please continue to lift Peter up to God in prayer.

Here is the 2:30 update

They have completed radiating Peter, the front incision is closed and the rear incision has been made

Here is the 5:15pm update

ARE YOU READY FOR THIS?

The doctors have finished the surgery on the backside. They have successfully removed the entire tumor and the sciatic nerve IS INTACT! We are waiting for pathology results to come back from the lab and then the decision will be made regarding intraoperative radiation to the backside. Please join us in praising GOD for all of his gifts and please continue to pray that Peter can have this round of radiation in the OR

Here is the 6:00pm update

Peter is out of the OR all the gross tumor has been removed. They actually got clean margins in many areas, which is a surprise. The decision was made NOT to radiate the backside because of hitting his growth plates in the hip and leg. These areas will be radiated with external beam radiation. The baby tolerated his surgery very well. We are on our way to recovery to go see him. The surgery took approx 8 hours. After we see Peter in recovery he will be transferred across the street. Thank you for all your prayers, your love and support.

We are all very happy to have those days behind us!

Since our last update we have been very busy. Peter has been attending gymnastics camp two mornings per week for 3 hours at a time. He loves it and he is getting very strong. He has attended and completed a fun-filled week at Covenant Presbyterian Church’s Vacation Bible School program, paid a visit to Pop-Pop Zucca, started playing soccer with the Harleysville Hurricane’s, spent a few days in Ocean City, NJ with Aunt Sandy, Rebecca and Dan, and Aunt Nanny, Ryan and Grant. We have attended and completed a fun-filled week at Towamencin Mennonite Church’s Vacation Bible School program. A July highlight would certainly have been the surprise addition of a beautiful, Amish made, play-set to our yard! Peter really enjoys playing on it and Miss Julie (his Physical therapist) is working/playing with him to ensure he is safely able to use all parts of the fun it has to offer. He has made many happy play dates in our yard since the play sets addition. We had a really fun and very special dinner at The Melting Pot fondue restaurant in King of Prussia. Thank you Kimberly and the entire staff for giving Peter the VIP treatment. Please check in on Kimberly’s God-daughter Victoria at carepages.com and then visit mommyspeapod. Please keep Miss Tori in your prayers.

Peter continues to work with Miss Julie every other week for one hour and sees his friend “Larry the leg rubbing guy” each week. I had an appointment a few weeks ago with the Intermediate Unit regarding his functional speech and hearing evaluation and his IEP (individual education program). His itinerant teacher has been changed because he is now considered hearing disabled. His new teacher is part of the hearing impaired program and she will spend time with him in his pre-school classroom. It is her job to make sure that all barriers to education will be removed for Peter from a hearing and speech standpoint. He will start pre-school in less than 2 weeks. After he has completed a month of school without an FM System (a wireless speaker and microphone system that will mic the teacher right to Peter) the FM System will be added to see if his educational experience can be enhanced. Miss Julie will also join Peter on the playground at school or on the play set in our yard; but her time with Peter will be increased to 45 minutes per week. The realy nice thing about the meeting with the I.U. was that, at long last, Peter had a review that was really super!!! His lowest score on the speech and language part of his test rated him as a 6-year-old and all other categories rated him at a 6 ½- year-old. Not bad for a 4 1/2-year-old boy whose speech deficits were over one year or greater when we started the program.

Peter has also surprised us by out growing his latest brace. On August 6th we took a ride to A.I. duPont in Delaware to see his orthopedist. They confirmed what we had known for a few weeks; Peter’s foot had grown way out the front of his brace! The size discrepancy between his two feet has deceased from 2 ½ sizes to 1 size…PRAISE THE LORD! He was cast for a new brace and we hope that it will be ready for pick-up soon. We will take delivery of this new brace 4 months ahead of schedule.

Peter had a fun afternoon recently when he attended the birthday party of his good friend, Gabriel John Hagan! Happy Birthday Gabe! You are a super 6-year-old. Mama and Peter had a great day on the beach in Ocean City, NJ last Wednesday the 15th. We went on the amusement pier rides, dug the world’s biggest hole in the sand, went bogie boarding in the ocean, and ate pizza on the boardwalk. The traffic was pretty heavy on the way home and we pulled in our driveway at 11pm. We had a great time together and we’d like to try at least one more “Mama and Peter” day at the shore before it gets too cold. Friday morning we picked up Grant, Ryan and Grant's friend, Ben and went to the movies, we saw Ratatouille and went out for lunch together.

Thursday, August 23rd, is a very special day for us; it is Peter’s pre-school orientation meeting. School starts the following Wednesday. We could not be prouder!

Thank you, for your continued love, support and prayers. Please continue to lift Peter in your prayers. He still has a long way to go, even when things are going well there are still many concerns for his future. Please pray that his hearing loss is stable and that he will not need hearing aids. Pray that his constant ear infections and the temporary hearing loss associated with them will be easily corrected in the very near future. Pray that his feet and legs will continue to grow, that they will be strong, and that the nerves will heal completely. He really wants to walk and run without any braces or shoe lifts. This is part of “his” prayers almost every night please make it part of yours. I’m very concerned about some bruising on his legs and that he is complaining of fatigue in his legs. He has been asking me to carry him and it’s very much out of character for him. There is always a chance of developing leukemia secondary to treatment for Peter’s type of cancer. I will be in contact with his Oncologist for reassurance that he is fine. We will be returning to Sloan shortly for an ENT visit and some additional testing to rule out learning disabilities. Peter is complaining of low back pain on the right side (surgery side). Please pray that this resolves and tht he is, and always will be, disease free.

Monday, June 18, 2007 8:56 AM CDT

The trip to Sloan-Kettering was difficult and stressful, as always. We left on Monday, May 14th. It started out on the wrong foot with traffic that was unbelievable. It took us over 5 hours to get to the hospital! We missed our 10:00am hearing appointment but we were fortunate enough to get put back into their schedule later in the day. We checked-in at the Ronald McDonald House, unpacked the car and headed to Sloan. Our morning started with the much-dreaded dental exam. Peter, with some coaxing from Dad, sat through 2 panoramic dental x-rays. The great news is that the dental x-ray shows what appear to be normal healthy, although delayed, front teeth and molars on there way! Praise GOD!!! That was much better than we anticipated. There are no holes in them and they are fully developed. That was not at all what we were told to anticipate. He will not need a dental visit at Sloan-Kettering for a full year.

We went to hearing department and started the audiogram. Testing the hearing of a 4 year-old is not as tricky as testing the hearing of a 1-year-old but it ended up that we had to do it in 2 parts because Peter quickly grew tired of the whole thing. There was a big red button on the table in front of him and every time he heard a sound he had to push it. When he pushed the button the train on the computer screen would fill up with a new passenger. Well, the lady performing the test is not exactly “child friendly”. Peter had lots of questions that she didn’t feel like answering and he couldn’t keep his hands off the button. After a few threats from her to keep his “hands off the button” Peter started pushing it with his arm. I thought he was pure genius, she thought he was annoying and stopped the test. We had to return later. The test confirmed a few things for us, Peter is all BOY, the testing lady does not have patience, and he does have permanent hearing loss in both ears. The hearing loss is from his chemo. The Sarcoma Team tried to protect his hearing while he was in treatment. They did a really good job given the fact that most of the children end up with 2 hearing aids during their treatment. Peter will need an FM system to aid his listening during school. He will have a repeat hearing test when we return in November (Gee, I can’t wait). If the hearing loss is stable there is a good possibility that he will not need hearing aids on a full-time basis just in the classroom setting. He will re-start speech therapy to be sure he is hearing and developing all of his speech sounds. We were disappointed that he has hearing loss but we know that we are blessed beyond compare that our son is still with us!

On Tuesday Peter met with Dr. Wexler and had his physical exam, his line placed, his I.V. connected and left for nuclear medicine. The line placement continues to be one of the saddest experiences of the trip. It takes several people to hold him down. He screams, cries and kicks until it ends. He begs for mercy and promises that he will be a good boy if we will just stop hurting him. He is exhausted from the trauma and the fight and all he wants is for Mom to carry him. It’s such a long walk to nuclear medicine but I can’t deny, all 36 pounds of, him for the walk down the department. He got his radioactive injection and we sit and wait for about an hour before the scan. During the entire time he is fasting and asks to be fed. We tried to have the scan performed without anesthesia again, but he is just not ready to do it that way. So he falls asleep and Dennis and I wait in the hallway outside his door. We listen for the sounds of the machine running and try to decide if it runs for a longer or shorter time then his last PET scan. We thought it ran longer than before and our minds start to play tricks on us and we fear the worst. Peter came out of the scanner sound asleep and we knew that he had more anesthesia than he needed. He was taken to the 9th floor recovery room. He slept and we waited for him to awake. It took uncomfortably long for him to wake and as is usually the case with too much anesthesia he was miserable! He cried and screamed for over an hour. There is nothing that we can say or do to help him feel better…the drugs have to wear off. We put him in the stroller and headed out into our surreal neighborhood of make believe. It is still very odd that we called Manhattan and the Ronald McDonald House “home” for so long. After Peter recovered from the side effects of his anesthesia we ate lunch and headed back to the Hospital. They have a great playroom and I like to slink around in the area just outside of the playroom in search of scan results. Success! Dr. Wexler came into the hall to talk with some parents and I was able to catch his eye. He had the results and Peter is clean, again!

We made all the necessary calls to all the special people in our lives to share the news. Then we headed back to the Ronald so I could lie down. I had the worst headache. Do you think it could have been stress related?

The next day Peter had his MRI scan followed by the CT scan. Before the scan I looked for his doctor to let him know that we would be stopping the scan if Peter experienced any breathing problems. Dr. Wexler told me this, “Mrs. Zucca, Peter is not going to have any breathing problems.” “Why are you setting yourself up for them?” Then he said the most amazing thing, “I don’t think that Peter’s cancer will ever recur.” I almost slid down the wall. Thank you Jesus! Jeremiah 29:11-14 immediately came to mind.

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not harm you, plans to give you hope and a FUTURE. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. I will be found by you,” declares the Lord, “and will bring you back from captivity.”

That was one of those things that Dennis and I never expected to hear. We headed into the infusion room to have his I.V. connected and we were, at the same time, in shock and floating on the clouds.

We headed up to the 11th floor for his MRI. We got the anesthesiologist that I have feared getting more than any other. He was awesome! I should have been praying for him instead of praying against him. He did the best job of keeping him under without over doing it. Peter did not experience any breathing difficulties and we are so grateful. Peter was taken to CT while he was asleep and things went fine. He was recovered in the crib outside of the scanner and we left for home. Traffic was fine but we drove into a storm as we approached home. Soon after our return the Hagan’s from our church arrived with a wonderful home cooked dinner for us. Thanks, Mel.

Peter took his usual few days of “acting out” to get himself over the stress of the week. Miss Julie, his physical therapist, came on Friday and spent an hour with him. He loves her. She was a nice way for him to get back into the swing of things.

On Tuesday May 29th Missy Vodicka, Big Ryan’s Mom, (see link below) and her Grandson Lucas came for a visit. This was the first time Missy and I were together outside of the world of cancer treatment! Lucas’ world was turned upside down when Ryan was diagnosed and he spent so much time away from his Grammy. We started our time together with a visit to Hershey Park. The boys were given a complimentary stay at The Hershey Farm Inn. The next morning we enjoyed the buffet breakfast and the animals on the farm. Peter got a nasty corn stalk splinter under his thumbnail so we set out in search of tweezers and other first-aid stuff. Once that was taken care of Missy entered the world of outlet shopping. Apparently they don’t have much of that in Nebraska (who could live in a state like that?) Lucas scored some fancy basketball sneakers from his Gram and then we took a buggy tour of an Amish Farm. Our time in the Lancaster area ended with a stop at the Sights and Sounds Theatre to see the show “In The Beginning”. Wow, It was great! We spent the night at our home and left in the morning to pick-up my cousin Trish. Trish is the best cousin in the world! Not only did she spend countless Friday nights sleeping in the hospital with Peter and I when he was in treatment, but she also took time off from work to travel to Maryland with Peter and I. Missy’s son Ryan had scans and I wanted to sit and pray and wait with Missy while Ryan was being scanned. If anyone ever hears of a cousin of the year contest please let me know so that I can sign Trish up!

Trish and company headed to a gorgeous Bed and Breakfast in Ocean City, NJ. The Atlantis Inn rolled out the red carpet for us. They gave us a wonderful rate that made the stay possible for us. The owner’s contacted the Ocean City Merchant’s Association and they literally filled the room with everything any little boy could ever want or need at the beach! They had boogie boards, buckets & shovels, ice cream cones, lemonade, French fries, T-shirts, sweat shirts, amusement rides, arcade games, dinner, underwater cameras (can’t wait to get that developed) taffy, popcorn, a henna, surrey rental, beach towels, and hats. One of the jewelry stores even remembered Missy and I with a special gift. We were so excited and over whelmed. Lucas said, “Grandma, It looks like Christmas” and it really did! The Christmas shop even gave them a gift certificate to purchase an ornament souvenir. The time in Ocean City was wonderful! Thank you to all the special people there for your kindness and caring for our boys and us! Missy and Lucas left for home very tired and very early on Sunday morning. It was a wonderful break from the cancer world for all of us! Ryan remains in treatment after over 3 years. Please keep his healing in your prayers!

June 11th Peter and I went to Delaware and the A.I. duPont Hospital for Children. He had an orthopedic evaluation on the schedule. This is the visit where he gets x-rays and the length of the bones is measured on film. We arrived early and Peter had his films taken before we saw the doctor. When Dr. Miller came into the room had had already reviewed the films. During our April visit the lift on his right show was lowered because he was having trouble walking and it appeared to be too high. Well, guess what? It really was. Praise God, his right leg has grown! The leg length discrepancy has dropped from 4cm to 3.3cm. His hip dysplasia is also stable. Dr. Miller was very impressed with his progress. He reviewed the films of his previous gait lab analysis and his right foot and leg stability has improved so much that he sent him back to the gait lab for more video. He will be getting a new leg brace in 6 months and it will be made from a lighter plastic. My hope is that is will also fit into shoes easier than his current one. Speaking of shoes. I dropped off new shoes, to get us through the summer, at prosthetic department so the lifts could be added. It seems we are currently out of benefits for lifts so our summer shoes will cost us about $400.00. OUCH!

June 15th was Peter’s first “well visit” at the pediatrician. That was something different for us. We had the immunization forms filled out for school. The height, weight and other physical exam stuff performed. Then it was time for the ear check. Peter remains totally traumatized by his ear exam. It took a nurse and me to hold him down. He continues to have a problem with fluid in his ears. The doctor feels that he should have tubes placed in both ears the next time he is asleep at Sloan-Kettering. Between the fluid and the chemo hearing loss there are times when he is really not hearing well. Inserting tubes in his ears is such a minor thing for him to undergo at this point and we look forward to his improved hearing.

The rest of the Summer Peter will be kept busy with muscle therapy, physical therapy, and I believe speech therapy. Gymnastics camp starts tomorrow. He will attend 2 mornings per week for 3 hours. He was attending gymnastic 3 days per week and I cut him back to1 time per week. He cannot keep up with the other children on the once a week schedule so we are going to try camp for the summer. He will be part of our local soccer program starting on July 7th. He will attend Vacation Bible School starting next week at CPC in Vernfield. Vacation Bible School starts at our church, Towamencin Mennonite, on July 16th-20th. I’m co-teaching his class at our church and helping with snack at CPC. Both of the churches have nice programs. Please join us!

He starts pre-school at Penn View Christian School on August 29th. Picture day is October 4th. Yes, I am excited. It’s much nicer to pick out school picture clothing than funeral clothing. I bought him a new shirt and he looks very sweet and very handsome in it, say’s his unbiased Mother!

Please keep Peter in your prayers. His immediate needs are as follows:

Pray that his disease never returns.
Pray that his leg will continue to grow. (no leg lengthening surgery)
Pray that his hearing loss is stable.
Pray that the FM system will allow him to hear well in school.
Pray that he will not have any learning disabilities.
Pray that the nerve in his leg will heal and he will be brace-free.
Pray that his hip dysplasia will remain stable (no hip surgery)
Pray for continued healthy development of his teeth.
Pray that the hands of God have protected his growth plates and that his hips and pelvis will grow normally
Pray for all the researchers and healthcare professional that work in the cancer field.

Thank you for caring and praying for Peter and our family.

Friday, May 18, 2007 7:50 AM CDT

Got this message form Peter's oncologist late yesterday:

scans are clean
all is well
see you in 6 months

I sent it to Dennis at work...the phone rang in no time. We had a very brief and private celebration on the phone. Thanks for your prayers.

More later about the trip.

Tuesday, May 15, 2007 7:16 PM CDT

Dawn has asked me to update Peter’s page because she is not feeling well and Dennis is exhausted. The hearing test is complete. The loss is in both ears and is chemo related. Dawn will give you more info when she is able. Dr. Wexler had the privilege of telling the Zucca family that the PET scan was negative! MRI and CT are scheduled for Wednesday. Peter will have to fast and drink contrast. Please pray for no complications with anesthesia . The anesthesia is so hard on Peter.
Thank you God for the negative PET scan. Please keep this wonderful little boy safe.
Missy (big Ryan's mom)

Monday, May 14, 2007 5:27 PM CDT

It has been a very long day! Dennis and I are both exhausted but Peter is still on the run. They are playing video games in the playroom at Ronald. We left the house around 6:00am. Our first test was scheduled for 10:00am and we thought we had allowed plenty of time for the ride in and enough extra time to check-in at Ronald before we went to Sloan. At 9:45 I called the audiogram department to let them know we could not make it by 10:00. They had an opening available at 2:00 and we took it.

We registered at Ronald, checked-in and made it to the block next to Sloan just in time to sit in more traffic. I grabbed Peter out of the car seat and took off up the street. Dennis parked the car and met us in the dental office at 11:05. They did not have us scheduled for an appointment! Wow, a 5 hour morning for nothing? They took Peter anyway (I have no idea what happened to our 11:00 appointment slot) He sat on my lap for his exam and Dennis stayed with him in the x-ray room.

It only took 2 tries to get a panoramic view of his mouth. We went back to the exam room and brushed the Oreo cookies out of his teeth so they could get a better look. Yes, I am the rocket scientist that feed him a cookie right before we walked into the dentist office. His teeth look good; a few small cavities are present in his molars but nothing that needs to be taken care of now. On x-ray (drum roll!) He has his future molars present and front teeth are still developing albeit slowly. They see no areas of real concern. We do not need to the dentist here until next May!

The hearing test went O.K. Peter lost interest in it pretty quickly. They were able to test both ear drums and no fluid was present. So we know that the hearing test is not being affected by the presence of the fluid that he had a few weeks ago. The right ear test is complete and he has chemo related hearing loss in his right ear. It is not severe enough to warrant a hearing aid at this point. He will probably need some speech therapy and help with his listening skills (I could have told you he needed help with his listening skills long before this test). I don’t know if the hearing loss will continue to progress or if this is the maximum loss that the right ear will have. He will have the left ear tested tomorrow after his PET scan.

We met with Dr. Wexler and Peter is already cleared for the PET scan in the morning. We have our special “magic cream” to numb his arm for the line placement. Carlene will meet us in the infusion room at 7:00am. The orders are in the system to place his line, draw his labs, and hook-up the I.V. Then it’s off to nuclear medicine. His PET injection is scheduled for 7:30. We should be scanned about 8:30. We are going to try to have the scan without anesthesia because it is relatively short, about 10-20 minutes for us. We will report back for the hearing check about 11:00.

Please pray that things go smoothly and that Peter’s PET scan is clean. Pray that there is not any hearing loss on the left side.

I will try to update tomorrow as soon as I have the PET results.

Thank you for caring and praying.

Sunday, May 13, 2007 6:05 PM CDT

Since my last update we have taken a fun and relaxing trip to Florida. Some of Peter’s favorite things included: playing on the airport play land while we waited for our flight, eating great big chocolate chip cookies with Daddy on the small balcony of our hotel room, breakfast in bed sharing white iced donuts (a Team Zucca favorite) and feeding popcorn to any ducks he could find.

His favorite things at the Magic Kingdom were the It’s a Small World ride. We rode it over and over again. He enjoyed the big horses on the carousel, especially the one that Daddy nicknamed “the monster”, the magic carpets of Aladdin and piloting the Monorail. He was given his own monorail drivers license, which he proudly keeps in his Spiderman wallet. We spent sometime at the Blizzard Beach water park and enjoyed watching Peter interacting with all the children who were bravely waiting in line for the under 40inches water slide s.

A few weeks after our return from Florida we joined Aunt Nanny, Uncle Jamie, Ryan and Grant at Great Wolf Lodge in the Pocono Mountains. Peter had a wonderful time playing in all of the pools and floating around in inner tubes with all of his favorite people.

He went on an Easter egg hunt at Asher’s Chocolate’s with his Buddies Nicholas and Tyler. He found so much chocolate that the handle pulled out of his basket! We left a note on our front door on Easter Eve that read, “Dear Easter Bunny, It is very cold this year. Please hide my eggs in the house. The front door is unlocked. I have been a very good boy. Love, Peter.” It was a good thing that we left that note because it was really snowing when Peter was hunting for his eggs! We celebrated Easter morning with our church family and later we joined family and friends for lunch and another egg hunt at Aunt Nanny’s house. The amount of candy he found was obscene. I just gave another bag of it away this week and we still have more.

We have all gone several rounds with the “Pink Eye Monster” and I think we are finally finished with that. Peter has been having problems with his hearing. He had another ear infection and lots of wax that had to be flushed out. With the antibiotics complete and all wax removed he was still unable to hear properly. He also has a lot of fluid present in both ears. He has started allergy medication in an attempt to resolve the fluid issue. He will undergo an audiogram at Sloan-Kettering to rule out any chemo related hearing loss.

We had an awesome orthopedic visit at A.I. duPont Hospital for Children in Delaware. Peter’s shoe lift has been lowered by half! He was also given a new type of leg brace that allows for movement at the ankle. Both of these changes are really important steps in the right direction…the direction of complete healing and restoration of his foot, ankle and leg. Keep praying!

We took a tour of his new school, Penn View Christian. He will start attending August 29th. He will be part of the 4-year-old pre-school classes that meet Monday, Wednesday and Friday mornings. We are so proud and happy for him. He can’t wait to start.

On May 5th, Dennis and I celebrated our 5th Wedding Anniversary. It’s hard to believe that another year has passed. We had a wonderful dinner at The Water Works Restaurant. We dined alfresco at a beautiful table over looking the famous boathouse row and the waterfall at the base of the Philadelphia Art Museum. Happy Anniversary Coach Zucca!

That’s right; in July Dennis will add assistant soccer coach to his list of titles. We are happy to say that Peter and Daddy will be part of our community soccer program from July to September. I can’t wait to see them in uniform.

May has been busy for my parents, they celebrated 48 years of marriage, got all of the farm equipment ready and started working the fields, Pop had carpel tunnel surgery and next week he turns 80. Whew, those two kids are wild! Peter is really enjoying being a little farmer. One day last week we attached his car seat to the top of the water wheel planter. The water wheel planter is a large yellow tank filled with water, attached to a bright red frame. There are several platforms that hold flats of plants. There are 2 seats on the back. Nancy and I were on the two seats and there is a wheel in between us. The wheel pokes holes in the ground and fills them with water. The riders place a plant into the hole. Peter was in charge of turning the water off and on. He takes his responsibilities very seriously and because he is a hard worker he has been asked to return for future planting.

Today is Mother’s Day. Peter picked out some lovely plants for me at Landis Supermarket. I have a white Petunia, a pink Dahlia, purple Alyssum and enough Tomatoes to support a small town. We had a very special Team Zucca breakfast of white iced donuts. Peter and his friends from Sunday school class delighted the church by taking part in the service today. They started by reciting Psalm 100:1-2 Shout for Joy to the Lord, all the earth. Worship the Lord with gladness; come before him with joyful songs. Then they performed 3 joyful songs of their own; Jesus loves me, deep and wide, and Jesus loves the little children.

It is such a pleasure to be the Mother of such a sweet and wonderful boy. I’m blessed they he is still here with us on earth. Each day he teaches me new things about the world around us and about myself. I’m grateful to be his Mother. I’m also aware that there are many wonderful Mother’s with a broken heart today. All I can say is that I’m sorry for each of your losses. I cannot imagine your pain. I’m honored to have meet each of you and to have shared this hard journey with you. You have inspired me to be a better person, a better Mother and a better friend. I love and respect each of you, deeply and completely. I will never forget your children and they way that you loved them, deeply and completely. I saw this posted on Angel Grace’s site today.

What Makes A Mother?

I thought of you and closed my eyes, and prayed to God today. Asked what makes a mother and I know I heard Him say, a mother has a baby. This we know is true. But God, can you be a mother, when your baby's not with you?

Yes, you can. He replied with confidence in His voice. I give many women babies. When they leave is not their choice. Some I send for a lifetime, and others for a day. And some I send to fill your womb but there's no need to stay.

I just don’t understand this, God I want my baby here. I took a breath and cleared my throat and then I cried a tear. I wish I could show you what your child is doing today. If you could see your child smile with other children and say.

"I went to earth to learn a lesson of life and love and fear. My Mommy loved me, oh so much; I got to come straight here. I feel so lucky to have a mom who had so much love for me. I learned my lesson very quickly. My Mommy set me free."

"I miss my Mommy, oh so much, but I visit her each day. And when she goes to sleep at night, on her pillow is where I lay. I stroke her hair and kiss her cheek and whisper in her ear, "Mommy, don’t be sad today, I’m your baby and I am here."

So you see, my dear sweet one, your baby is okay. Your baby is here in My Home and this is where he'll stay. He'll wait for you with me until your lesson is through. And on that day that you come home, he'll be waiting at the gates for you.

So now you see what makes a Mother... It's the feeling in your heart. It's the love you had so much of right from the start.

Though some on earth may not realize you are a Mother, until their time is done. They'll be up here with me one day. And know you’re the best one.

Author Unknown

We are leaving for Sloan-Kettering in the morning. Peter has a 10:00am audiogram so we can get to the bottom of his hearing problems. He has an 11:00am dental appointment. He will have a panoramic x-ray done of his mouth. There is a very good possibility that he will not have second teeth coming. He was on high dose chemo when the teeth “buds” should have been forming. Tuesday he is on the schedule for an exam, blood work and a PET scan. He will have a peripheral line placed that will stay in his arm overnight. Wednesday he will have a MRI and CT. He will be under anesthesia for all 3 scan.

Please pray for traveling safety, healthy ears and lots of perfectly healthy teeth. Pray for easy line placement, great lab results, and no breathing problems while under anesthesia and NO CANCER!!!

Thank you for your continued love, support and prayers. I will try to update from the Ronald McDonald House Monday evening and Tuesday evening.

Tuesday, March 6, 2007 1:10 PM CST

All right, yesterday Peter said something to me that you just don’t want to hear come out of the mouth of your 4 year-old, “Hey Mom did you every find the underwear I hid? I only wish I could have seen my face. We have been fighting colds, virus and the flu in our house off and on for a couple of weeks. I could only imagine what I was about to discover! Well, things did turn out fine because he took a couple of pair off the top of the clean wash pile when I was doing laundry and threw them behind the couch. No harm done (ha ha). Earlier in the day he ask me to cut his ham and cheese into a heart shape because he loves all of his friends. Four is a wild, fast paced, and ever changing age!

Thursday night when we were getting ready for bed he told me that his ears can’t hear, they’re broken and they hurt. Friday morning we saw the pediatrician at home and started antibiotics. His G.I. tract is a mess and I’m starting to doubt if we are going to make our Disney trip on Friday.

We have been keeping Peter busy with gymnastics, muscle therapy, physical therapy and as much playtime with friends as cold/flu season will allow. We have discussed having his tricycle adapted to see if it will be possible for him to pedal it. He has been asking lots of question about his foot and leg not working. He has mentioned that he can’t ride a bike like his friends. So our next step, on that front, is to try to make it possible. Dennis and I have discussed that it may not be possible. If adapting the bike does not make the situation any better we will buy Dennis a special bike this Spring with a piece added so that Peter can be on the back of his bike and can do any pedaling possible. We hope that he will gain balance, freedom and a sense of accomplishment from his special time riding with Dad. Our P.T. says that it will not be possible for him to pedal so we will turn that over to the Lord. He has not let us down yet! We have set the icon for our Internet login to the picture of the tricycle to remind us to pray for that next part of the miracle. Please join us and do the same. It matters to Peter, so it matters to us!

We hope to surprise him with one of those John Deere battery operated gators around Easter time. That should allow him to follow his friends around the driveway during outside play dates this spring and summer.

I hope that you enjoy the photos of Peter’s family birthday party. He was a real ham for us that night. This photo album just doesn’t hold enough pictures!

Please continue to hold all of our cancer families in your hearts and prayers. Peter’s specific prayer needs right now are:

That his disease never returns
That his nerve damage heals in his right leg/foot
That we will be led to the right doctor for treatment of his nerve damage before we miss the window of opportunity to correct it
That the leg length and foot size discrepancy do not get any larger
That his social and cognitive abilities will continue to develop on track (so far so good)
That he will not exhibit any learning disabilities when he starts pre-school in the fall (very common after chemo in young children)
That we will have a safe anesthesia/scan experience in May
And that he will be well enough to travel on Friday.

Michael and Anastasia it was lovely meeting you this weekend!

Tuesday, February 20, 2007 3:33 PM CST

Turning 4 has been the greatest experience of Peter’s life! He loves it so much that he wants to be 4 one more time! Each day he shares with me something new that he can do because he has turned 4. One big thrill for him is that he can now watch me make his ham and cheese sandwich at the kitchen counter without standing on a chair. He is also noticing the actual number “4” as well. He said to me, “Mom, I see the number 4 everywhere I look”. This can present some problems for us, for example when he is talking on the phone and he spies the number 4 on the keypad he pushes it over and over. If you have had the privilege of speaking to him on the phone you may still have ringing in your ears and we apologize.

Our fun started when we picked-up Pop-Pop Zucca on Friday afternoon and brought him to our house for the weekend’s festivities. Saturday at 1:00 was the party at Tumbleweed’s with fourteen of his friends and some Peter groupies. They stretched, tumbled, played and ate for an hour and a half. We left for home and I thought it was a great time for a nap (silly me). Peter thought it was the perfect time to open his party gifts. He is, after all, 4 years old and is now too old for a nap. So he opened gifts and cheered and clapped for joy while I snapped pictures and tried to stay on top of who sent what for the Thank-you notes.

Sunday morning we celebrated and shared birthday cake with our church family for the third happy year in a row. Pop-Pop joined us at Zach’s Pizzeria for our Sunday afternoon ritual of family pizza day. When we got home we changed our clothes and drove to Celebrity Kids portrait studios in North Wales, Pa. We needed to have someone capture this very special boy on film, and capture they did. Peter was a super excited sugared-up mess. The proofs captured him moment by moment misbehaving! There were about 25 pictures of every conceivable face you can think of. We broke them into the following categories: there was the group with his tongue out, his hands over his eyes, tufts of hair in the air, etc, etc, etc. We left for home without making a purchase.

Sunday night Aunt Chris and Uncle Robert, Aunt Nanny and Uncle Jamie, Ryan and Grant, Green and Bop, Pop-pop and Team Zucca celebrated with a birthday dinner and you guessed it more cake and gifts. Monday morning I thought we were headed back to our usual routine but Bop took a fall in his bedroom. He said he felt fine but it necessitated a CT of the head. I took Pop-pop back to New Jersey and when I was driving home Dennis' sister; Sandy called because Pop-pop was just in a car accident. Both of our Father’s will be fine.

Wednesday evening we joined Nicholas and Tyler and their Mom at BounceU. It’s an indoor inflatable moon bounce fun house. The 3 boys had a great time together. Friday morning I attended the open house and orientation at Penn View Christian School. I had the pleasure and thrill of enrolling Peter in a pre-school program for September 2007. He will attend their 4-year-old program 3 mornings per week. It is exciting for us to anticipate a future for Peter that extends all the way into pre-school. I’m not positive but, I believe that if the miracle continues he will be considered a cure by the time he is halfway though kindergarten.

Saturday morning was the day we chose to have Mr. Personalities photos retaken. He was as silly as ever but this photographer was able to harness and capture his enthusiasm and joy on film. The pictures are beautiful and we will share them with you when we get them scanned into our computer. Saturday night Dennis and I had a date. We can’t believe it either! Covenant Presbyterian Church in Vernfield was having a Sweetheart dinner that included babysitting as a fundraiser for their youth group. Peter is very familiar with the church and its members and he was very happy to play with his friends while Dennis and I ate dinner with our friends.

On Valentines Day we finally got our first snow of the year. Peter was elated! Dennis promised him that he would take a vacation day whenever we got enough snow to play in and it finally arrived. We started our morning with heart shaped Valentine Man pancakes. They had strawberry eyes, banana mouths and whip cream hair. Daddy and Peter gave me red and white tulips and made me a beautiful card with stickers and crayons while I made breakfast. The snow turned into something more like an ice storm and it was so cold that we could not play outside, but we played inside and enjoyed a special pasta lunch for Daddy and fish dinner for Peter. We baked cookies and dipped strawberries in chocolate. We read Valentine books at bedtime and Peter was so happy that he hugged me as tight as he could right until he fell asleep.

Friday night when we were getting ready for bed Peter said, “Mom, can we have a picnic tomorrow?” Guess what I said, “No”! Oh come on, how could you fall for that one? Have you every heard me so “No” to Peter? Saturday morning on my way home from work I stopped at the dollar store for some plastic frogs and little green picnic baskets. I transformed the Master Bedroom into a campsite and picnic ground in less than an hour. There was a tent and 3 alpine Christmas trees complete with lights. The frog-fishing rug from Peter’s room anchored the picnic spot and curling ribbon was suspended from all the doorways leading into the bedroom. The main entranceway had dragonflies tied on the ribbons and the ceiling fan was spinning slowly and was brightened up with a bumblebee windsock that has a long purple, green and yellow tail. The heat was turned up high enough to transform the cold winter day into summertime and allow for short pants and short sleeves. We filled the green baskets with ham and cheese sandwiches, chips and a cookie. Bailey Jayne had a new rawhide bone in her box and there we sat Team Zucca and the pup eating lunch in our personal summer day. When the food was all eaten we used nets to fish for the plastic frogs and played a toss and catch game with the picnic baskets and the frogs. No one wanted the picnic to end. We left the campsite in place in hopes that Peter’s friend Ben will join us for a picnic when his fever goes away. Get well some Ben we are praying for you.

Sunday night Aunt Nanny had her annual Valentine dinner. The food was great and the fellowship was even better. It is always such a fun gathering and the kids love it. There were 3 generations in attendance and any reason to celebrate life works for me. We hope to see everyone back at the table next year. The weather is really warming up in Vernfield since we had our picnic lunch. It’s starting to feel like our winter is drawing to a close. This afternoon Peter, Jayner and I decided that we better get some tubing in before our one and only snow melts away. We headed out behind the barn and climbed up the slippery barn bridge hill. Peter, Bailey Jayne and I huddled together for many fun rides down the hill. Our dog is such a blast she loves to ride the tube with us. The only thing missing from our fun was Daddy. He has that whole “got to pay the bills” thing going on and so he was at work instead of on the tube with us. We missed you Daddy! I hope you enjoy the picnic and tubing pictures. I just can’t believe how big Peter is now that he is 4 years old.

Please keep our special son in your prayers and remember his friends who are still fighting the battle against their cancer. We praise God that Big Ryan and Nate are both doing well. Please check out the links below and add these families to your prayers.

Thank you for your continued love and support.

Tuesday, February 20, 2007 3:33 PM CST

Tuesday, February 6, 2007 3:42 PM CST

Our precious son has turned 4 years old.

We gratefully acknowledge your prayers for

And praise of God’s Miracle of healing in his life.

Thank you for the many cards, gifts, well wishes

And prayers that he received.

Monday, January 29, 2007 2:31 PM CST

Peter awoke Christmas morning at 9:00am. That’s the latest he has ever slept. Dennis and I agree that Christmas morning 2006 was the happiest day of our lives! Peter was so excited that Santa arrived and he loved his gifts. His favorites were the trumpet that he found in his stocking and a Cars racetrack that came complete with a Lightening McQueen car. Our favorite gift was sitting on the floor in front of us opening gifts and playing with the dog. His joy was contagious and the 3 of us spent the day in our pajama’s just laughing, playing, snapping pictures, and counting our blessings. What a wonderful day spent as a family celebrating the lives of our 2 favorite children, the Christ child and the Zucca child.

Christmas Eve a family of elves left a special gift for Peter on our front porch. It seems that someone has caught on that Peter really enjoys watching and filling the bird feeders in our front yard. So the Jagiela’s left their nest and ventured out to surprise our man with a window bird feeder and some seed. The feeder is hanging on the outside of our kitchen window and strangely enough Peter is the only one who ever gets to see a bird in it. He calls out to us each time one is eating in the feeder but by the time Dennis and I look they’re gone. When asked by friends what he received for Christmas he now replies birdseed! We have gotten some really strange looks over that one. But, he is happy with his birdseed and so are we. Thank you for your continued love of Peter. Thank you also to the anonymous person or persons responsible for making sure our furry friend Bailey Jayne has a happy and healthy New Year.

The day after Christmas we went to Lancaster and saw the show The Miracle of Christmas at the Sights and Sounds Theatre. It was breath taking and spiritually added so much more to our celebration of Christ’s birth. Dennis’ Aunt passed away on Christmas Day resulting in a change of plans for the Zucca Christmas gathering. We had our own small New Year’s celebration with hats and noisemakers. Our poor dog really has to put up with a lot. We ended 2006 with a heartfelt and humble prayer that 2007 is the year that will bring the world a cure for cancer.

Peter continues to work with his physical therapist and muscle therapist. He attends gymnastics 3 times per week for strengthening and balance. He is doing well and adjusting very nicely to his time away from hospitals and doctors. If everything continues on this medically uneventful path we will not return to Sloan-Kettering (for scans) until May and AI duPont (for orthopedic evaluation) until June. This is our longest break from care and treatment and we pray that God’s blessings will continue for Peter.

Dennis is taking a few days off in the month of March and we are planning to use his frequent flyer miles and Marriott points (from previous business travel) to spend some time in sunny and warm (we hope) Florida. But before we can even think about packing we are planning another joyous occasion. Peter is having another medically impossible Birthday. Praise God! He will celebrate turning 4, on Saturday February 3rd with some of his friends at Tumbleweeds. He has picked a football theme because as he says, “everyone likes football”. Having a football birthday party on Super bowel Sunday is harder than you might think, because all of the football stuff keeps selling out of the stores. But, he has a persistent Mama and we have located the necessary football party items. We have even located Janine, the women who decorated the cake for his 1st and very difficult birthday party, for the cautiously optimistic 2nd birthday party, and for his I think we might actually get to raise this child 3rd birthday party. Each year it gets easier and more exciting to meet with Janine and talk about his cakes. Sunday February 4th (his actual birthday) we will celebrate at home with Pop-pop Zucca, Green & Bop Freed and Aunt Nanny and her family. For Sunday’s celebration Peter and I will bake and decorate the cake. He loves to decorate cakes and I’m sure this will be ever bit as beautiful as the one that he made for Daddy back in November.

This morning we got all bundled up and went out in the snow. There is only a dusting here but Peter has been itching to play in the snow all year and we just don’t seem to get any. I placed him in the inner tube and pulled him around the yard for as long as I could. He thought it was really fun (I felt like an Amish plow horse) dragging him across all the bare spots in the yard. Now we are playing a game of tossing balls and pencil erasers into the tube in the middle of the living room floor. It’s a lot more fun than you might think and it’s definitely warmer in here.

Please keep Peter in your prayers. Pray that his cancer never returns. Pray that there will not be an increase in his leg length discrepancy, so he will not need leg lengthening surgery. Pray that God will continue to heal his nerves and muscles. Pray that he will be able to wiggle his toes and move his ankle. Pray that he will someday walk without his brace and that he will be able to ride a tricycle like his friends can. Pray for those in cancer research, that God will impart wisdom for them, to find a cure for all of us.

Please remember our friends who continue to fight this battle and fear for recurrence but most of all for the families of all the Angels we have met along the way.

Thank you for your continued love, prayers and support.

Monday, December 25, 2006 7:13 AM CST

Merry Christmas!

I can’t believe it…Santa came last night. Peter left him 2 grapes and he ate both. He ate 1 cookie and took a bite of the other one. He drank almost all the milk and took the piece of celery that Peter left for Rudolph. The stockings were hung by the chimney with care and now they are stuffed to over flowing. There are presents galore under the tree. Mom and dad are so excited and Peter is still fast asleep, at 8:30. We can’t wait for him to wake up. The anticipation is nearly killing me.

Thursday, December 21, 2006 5:31 PM CST

Team Zucca spent Thanksgiving in NJ with Dennis’ family. The food was great and Peter got to play with Dan and Gecca (a.k.a. Rebecca.) The electric went out in their neighborhood for an extended period of time so was had dessert by candle light. For the next few days anytime Peter was asked how his Thanksgiving was he said, “Dark”!

The next day was Daddy’s birthday. Peter and I made and decorated the cake. It was lots of fun and looked beautiful. Peter is very big on celebrating properly with hats, noisemakers and balloons. The best gift that Dennis received, in Peter’s eyes, was a play tool set from Wal-mart. Peter said, “Dad we’re friends aren’t we? Can I borrow your tools?" Happy Birthday, Daddy!

We are heading full swing into the Christmas season. We spent an afternoon at the local bookstore decorating a family gingerbread house. We had a great time. There was a very large bag of icing and plates filled with candy in every shape, color, size, and flavor. The Mom’s group that I belong to had a cookie swap and Peter and Daddy helped to bake them. Peter loves when we go to the mom’s group because he gets to see his friends and play. At the last meeting his teacher put a long piece of rolled paper on the table and traced the outline of my little man. I now have a life size poster of him hanging on the door. We retuned to the bookstore a week later for their Polar Express party. They read the story and had cookies for everyone to enjoy. Before you could say “naughty or nice” Santa Claus showed up to see what everyone wanted for Christmas. Peter reluctantly sat on his lap and to our surprise he asked for a cell phone.

He has been having play dates with friends and the most memorable this month was the rainy day spent on the Carousel at the Plymouth Meeting Mall. Peter’s friend Tyler invited us to go for a ride in his van. Peter could not wait! Tyler’s mom drove and we spent several hours watching the boys throw pennies in the fountain and spin wildly in the teacup on the lower level of the carousel. When we arrived back at Tyler’s house they sat in the van watching a movie and eating pretzel sticks. I loaded Peter into our car and left for home. Peter said, “Mom, get Tyler on the phone for me. I want to talk with him”. I suggested that we take a nap instead. Turns out that Peter wanted to set-up the next play date right away. I guess that’s why he needs a cell phone.

Peter has single handedly decorated the 2 small alpine Christmas trees in our kitchen. There was once just 1 alpine tree in the kitchen but the little man is really collecting ornaments. He loves each one and as we take them out of their packages he asks for the story behind them all. There are now 3 from Aunt Sharon and Uncle Mark. There are also many from the family Christmas archives of Pop-pop Zucca. There is a NYC taxicab driven by Santa, a gift to Peter from his friend Maggie. Maggie like so many of Peter’s friends lost her battle with cancer so the taxicab is always difficult to hang. There are 11 Angels on the top of the tree with the names of friends who have earned their wings. The hardest 2 additions this year were Angel Gracie and Angel Hazen. On a happier note there is a snowman that was attached to a gift bag at my baby shower before Peter was born and a small white bunny from his first Easter basket. Last year Peter and I made some real beauties out of construction paper, glue, photos, and glitter. This year cousin, Trish surprised Peter with 3 homemade ornaments in his Christmas card. Thanks Trish!

Peter loves all Christmas decorations both inside and out. We have been driving around at night looking at them. He especially loves the inflatable snow globes and candy cane lights. He was given a special surprise by the elves from the Harleysville
Rite-Aid store. We got a call from Chief Elf, Peg, to stop by the store. When we arrived there was a very large wrapped package sitting on the floor. The top had a big red bow and a card with a name on it that Peter recognized as his very own name. The staff went together and bought him a large inflatable snow globe with Santa, a snowman, a Christmas tree and 2 penguins inside. He couldn’t wait for Daddy to come home and help set it up. It proudly spins on our front yard and the big red bow is in the back seat of the car. Peter holds it when we are driving around and says, “Remember when my friends gave me that blown up thing? That was nice.” Thank you to everyone at the Rite-Aid!

Last night we toasted bread and cut out mitten shapes with a cookie cutter. I spread peanut butter on them and Peter added birdseed. He is giving them as gifts to some of his friends. I cut the same mitten shape out of a sponge and he sponge painted paper bags for gift-wrap. We will be delivering them all over town, as he is a very popular fellow. If you don’t receive one and feel that you should have, we have not over looked you but ran short on stock, as Peter likes to eat them before we add the birdseed!

In between all of the festivity we still find time for muscle therapy, physical therapy and 3 visits per week to gymnastics for strengthening and balance. We had an orthopedic visit at A.I. duPont Hospital for Children in Delaware. Peter underwent a series of x-rays and an examination by Dr. Miller. The films now confirm that he has significant damage to his right hip/pelvis, right leg and right foot from his radiation and his cancer. It is really difficult to view the films and hear the doctor confirm that he is not growing properly.

We paid a visit to the prosthetic department and had a lift added to the inside of his brace. His foot has been rolling inward and he has been standing on his toes. They feel that this is most likely the result of decreased activity and strength. I pulled him out of every activity prior to scans because he was sick. Well, the scan anesthesia didn’t hurt him and now we will increase all activity until he regains his strength.

Saturday the 23rd my family will gather here for our Christmas celebration. The 24th we are taking Peter to the Nut Cracker in Phila, with Aunt Sandy and Gecca, in the morning and Church in the evening. The 25th belongs just to Team Zucca in the morning and my parents will join us in the evening for dinner. The 27th we will be in NJ for a very Merry Zucca Christmas gathering. December 24th is the 3-year anniversary of Peter’s diagnosis and with it come the best prognosis ever for his survival 84 percent.

Christmas is a time of very mixed emotions for us. The painful memories of our first family Christmas, spent in the hospital while Peter’s life hung in the balance remain vivid. During our second family Christmas, still in treatment, living in the Ronald McDonald house, Peter was sick, bald, and still unable to walk. His chance of survival and hope of a future were still very low. Christmas number 3 with Peter and his full head of hair walking around playing with gifts held the glimmer of hope that God would allow Peter to stay here longer. This Christmas is marked by the painful reality of 11 small Angels (Haley, Nicole, Evan, Maggie, Javier, Liam, Nathaniel, Grace, Bailee, Hazen, and Lana Beth) hanging on our tree and the knowledge that we are just 4 days away from the greatest of gifts, Peter’s 84 percent chance to conquer this disease. Hope and fear are all very hard to handle but…there is also the eternal promise of a savior just 5 days away.

And the Angel said unto them, Fear not: for behold, I bring you good tiding of great joy, which shall be to all people. For unto you is born this day in the city of David a savior, which is Christ the Lord. Luke 2:10&11

Thursday, November 16, 2006 2:31 PM CST

My sweet boy (and hero) is peacefully sleeping on my pillow, so I will tell you about the last few days. We decided to leave for the city on Monday. Our hope was to take Peter ice-skating at Rockefeller center. The weather did not hold and unfortunately it rained on our parade. We actually had so much rain to contend with that the drive into the city was long and tiresome. We checked-in at Ronald, unloaded the car and drove to dinner. Peter was anxious about being back in NY and it showed in everything he did. He could not sit still at dinner, he was unable to concentrate on his new Cars movie that we were watching in the room and he had difficulty falling asleep. He did enjoy some time playing pinball with Valeria. Valeria is a 3-year-old girl from Puerto Rico. She had cancer too and they really enjoyed each other’s company. Some of you may think Valeria is an unusual name but it was very familiar to Peter. It is my Mother’s name and Peter explain to Valeria in great detail (as he likes to do) that he has a Green named Valeria and that Green is what he calls his Grammy. They stood side-by-side on chairs, Valeria working the left hand flipper and Peter working the right. Things were going smoothly until Valeria wanted to push the ball into play. Familiar name or not Peter didn’t think he wanted to play with her anymore. We were able to get a sharing arrangement into place and I believe that they parted friends.

We arrived at Sloan around 7:00am on Tuesday. We registered and waited to be cleared by the sarcoma team. Much to our delight Dr. Wexler was our doctor for the day. Peter was happy to see him, and as always, so were we! Even with the past 3 weeks worth of a cold still gently looming over him, Peter passed the pre-scan exams. Before we left the office to visit the infusion room Peter had a small and sincere question for Dr. Wexler, “Do I have to have a tourniquet and a screw driver (his version of a peripheral line placement) in my arm? Sadly his response was, “Yes”. Peter said, “Alright and left to get squeezed and stuck. He really fights his line placement with everything in him and I can no longer hold him. Dennis was elected for the job and Peter screamed and cried till our hearts were split in two. His labs were drawn and we left for the 2nd floor and his PET injection. Things went smoothly and we were in the scan room before we knew it.

We wanted to try the PET scan without anesthesia. We thought one less day without it could only be better for all of us. We told Peter that he would have to hold really still like a freeze tag game. Then came our mistake…Peter you get to play freeze tag in a tunnel! Well, he was so excited about playing in a tunnel that we had no hope of getting him to freeze. His face was beaming and filled with wonder and joy! The anesthologist and the PET tech tried all sorts of things to get him to hold still, but his heart was into playing in that tunnel. We said, “You better give him the anesthesia”. They were very cautious and gave him the smallest amount possible to keep him just far enough under to sleep without moving. By the time the scan ended and they were bringing him out of the tunnel he was wide-awake and looking for Mama.

I carried him in my arms until I could not carry him any more and Dennis had to take over. We headed to the 9th floor playroom. A very special guest was arriving from the movie Happy Feet…Mumble the penguin! He was very tall and had a face that only a mother could love. I said to Peter, “Hey lets get our picture taken with Mumble”. He said, “NO THANK YOU, MAMA!” The nice thing about having your child scared to death by the guests in the playroom is that you don’t have to stay and play for very long. The sad part is that he had already had a hard and scary day. We left the hospital and had Chinese food on the corner by St. Catherine’s Park. Dennis and Peter played while I ordered. We ate and headed back to Ronald for warmer clothes. We were surprised to learn that Terrell Owens the, former Phila Eagle and now Dallas Cowboy, football player was in the house. We went to the 9th floor and had our picture taken with him. His assistant was very kind and will be sending the photo and an autographed football and copy of his new children’s book to our home for Peter. Dennis had some business e-mails and calls to make so Peter and I headed back to Sloan to pick-up the contrast (that I forgot to get) and to try and get PET scan results. We played in the playroom and got reacquainted with some old friends; we got our instructions for Wednesday’s scans and a preliminary type result that the PET was pretty good. I called Dennis to let him know about the results that the staff had given me. Dr. Wexler heard me on the phone and came over to say that he saw the PET and it is clean! Dennis screamed, “Alright” into the phone. It set the tone for some wonderful celebration and playtime on the swing set at St. Catherine’s. Peter was on the swing yelling, “Under doggy me, Mama”. I spent the afternoon pushing him from behind and running underneath him as fast as I could. He was swinging so high and so fast and each time I pushed him up and ran under he would yell with such joy, “Everyone look at me”! This went on till Mama could no longer “under doggy”. So we went for a walk through our old neighborhood. Coming home to Manhattan is so surreal for us. Walking past his music school, Hands-on, looking into shop windows and at restaurants that feel like your neighborhood and a strange and far-away place all at the same time. It’s hard to describe, it’s sort of like de-ja vu only with much more clarity (it is sad and happy all at the same time) because it’s real. It is our long and difficult journey.

Peter fell asleep in the stroller and we met Daddy at the car. Uncle Mark and Aunt Sharon surprised us by coming to the city for dinner and a show. We met at Carmine’s in the theatre district for dinner and then separated at showtime. They saw Phantom of the Opera and we saw Beauty and The Beast. Our show was wonderful and we were very grateful to be the guests of Disney at the theatre. Peter sat on the edge of my lap and took it all in. When we left we called Uncle Mark to see how he enjoyed the show. They were back at Carmine’s having dessert and we joined them again.

Wednesday morning Peter did such a good job drinking his contrast that he earned a new Thomas and Friends toy named Bulgy. Bulgy is a double-decker London style bus that will work on his track set at home. We saw Dr. Meyers this time and cleared without problems. We went to the infusion room to get his I.V. fluids connected and headed to the 11th floor for MRI. The anesthesiologist was very cautious with Peter. She had him on a pump set on the lowest setting and his respirations hovered at the lowest possible levels to avoid having an artificial airway placed. He awoke on 3 separate occasions. This required him to have a bolus of anesthesia and for the area to be rescanned because of movement. The MRI took longer than we are accustomed to but he was never in danger. We left for CT on the 2nd floor while he was still sleeping. Once again he slept without danger. He awoke with out incident in the hall outside of CT. We whisked him into the stroller and headed back to Ronald for the car.

The ride home was long and hard. Peter was agitated and angry coming off of the anesthesia. And then, as is usually the case, someone flips the switch and sweet Peter reappears. We stopped for dinner on the way home. I asked the waiter to bring us a special dessert with a candle or a sparkler on it. Because we were, after all, celebrating! He arrived at our table with a nice piece of chocolate cake, lots of whipped cream, ice cream, strawberries and a cherry. All of this was beautifully lit with a white candle and was served by a cheering, clapping crowd of wait staff. Peter was delighted! He blew out the candle and we re-lit it over and over until there were no more matches left in the pack. The candle celebration sounded something like this:

Mama: One!
Daddy: Two!
Peter: Three, Blow!
(Repeat, over and over and over)

There we sat, just the three of us, like it’s been all along. Happy tears, smiling faces and a long awaited celebration.

When we arrived home Dennis checked our e-mails and Dr. Wexler had just sent us the news, “I have reviewed all 3 scans and they are all fine…I will see you in 6 months”!

We head into the Thanksgiving Holiday happy and excited about Peter’s health. But, we remain keenly aware of all of our friends and their families whose celebrations will be different than ours.

Thank you for your continued love, prayers and support.

Tuesday, November 14, 2006 2:44 PM CST

Quick update from Dawn! Praise God Peter’s PET scan is NED!!!!!!!!!!!!!! We are celebrating on the swing set at St. Catherine’s park. Anesthesia was uneventful. Please pray for more of the same tomorrow.

Friday, November 10, 2006 9:33 AM CST

We will be heading to NYC and the Ronald McDonald house on Monday. We usually leave very early on Tuesday morning, but there is construction on the PA and NJ Turnpikes and we can’t risk being late for scans on Tuesday morning. It will be nice to change Peter’s scan routine. He is getting very anxious about going and has shed tears a few times about getting his lines placed. If the weather and his cold permits we would like to take him to Rockefeller Center for his first time on ice skates. We are very excited about that prospect! If it works out I will con some poor bystander into taking photos of Team Zucca on skates. Tuesday evening we will be guest of Disney theatrical and RMH at Disney’s Beauty and The Beast. Peter will love the show and so will we. He’s becoming quite the little theatre buff. We will return to some of our favorite spots for food and fun and hopefully catch up with old and dear friends.

As is our routine Peter has had a very bad cold for several weeks. A few days into it I caught it too. We have been staying away from everyone and everything. We’ve cancelled all play dates, therapy, gymnastics and church. I did take him trick-or-treating to a few houses on Sunday evening and a few more on Tuesday evening. He has missed enough in his lifetime.

Saturday, October 28th we took a ride to Reading, PA. We were guests of Ringling Bros at the circus. We had great seats on the floor right in front of the ring. It was a first for Dennis and Peter both. The show was beautiful and we had a great time. The show host was very gracious and he took us behind the scenes to see the elephants. We were able to pet them and had pictures taken with them. They are very soft and very warm. Peter was over whelmed by their size and hung on to Mama and Dad tightly. He was worn out from the day’s fun and during the car ride home we realized that he was once again getting sick.

October 30th I took Peter to the Picture People at Montgomery Mall. They sent us one of those coupons (no sitting fee, one free photo) and I fell for it. I wanted to get a cute picture of him in his costume so off we went. The pictures were great and I couldn’t narrow it down so you are all getting photos of Peter for Christmas. I will post them after we return from NY. They will be our celebration photos!

Peter has been getting a little bored without all of his usual activities. This week we got out the craft box for a change of pace. He has a Crayola Treasure Chest. It’s filled with great stuff like markers, crayons, paper, and his favorites glitter glue and the scissors. We spent time tracing Christmas tress and mittens onto the paper and adding glitter glue to brighten them up. The next day when the glue was dry Peter sat at the table cutting the glitter glue pictures into confetti. We had that talk about how the scissors is only for cutting paper and more specifically for cutting paper that Mama gives you. He nodded with enthusiastic understanding. The phone rang; it was my friend Aliza. She was being a silly egg and I was enjoying her banter. I walked into the office to watch a red fox run through our yard. Peter forgot all about the scissors rule and added cutting the dogs hair to the approved list. Poor Bailey Jayne; she is traumatized! When I asked him how the dogs hair got cut he told me the scissors did it, not him.

Yesterday we filled the bird feeders together. He loves to climb the ladder and open the lever on the feed scoop. He can climb the ladder by himself and is adamant about not needing any help and I’m not allowed to hold the ladder either. Fear not, I have creative ways of wrapping my leg around it. When all of the hanging feeders were filled we moved onto the ground feeder. I headed back to the barn while Peter finished that one alone. I called out to him in the dark, (we were losing daylight fast) “bring your scoop to the chicken house and put it away.” “Do you need my help”? Out of the darkness came his reply “No Mama, I’m a big Zucca”.

Please keep my big Zucca in your prayers. This will be another difficult week for him and us. Please pray for travel safety to and from the city. Pray for fun and happy family memories in the city. Pray for his pain and fears. Pray that his anesthesia experience will be safe and uneventful and as always please pray that his scans are NED!!! (No evidence of disease).

We want to Praise God that our friend Nate had clean scan the last time around! Big Ryan’s (www.caringbridge.org/ne/rayn) scans showed that his disease progressed without chemo, so he is now on oral VP-16. Please pray that his new chemo will kick some cancer butt!

Sadly, our friend Hazen earned his Angel wings on November 1st. We believe that we can neither add a day nor take a day away. It is not possible to understand why God’s plan would intend for such a young and gentle spirit to be taken from this Earth. But, I do know that in his 5 years he was perfectly loved by his parents Suzan and Scott. They have perfectly prepared him for an eternity of perfect love by our Lord and Savior. Pray for their peace until their circle of perfect love is once again complete in Heaven.

Friday, October 27, 2006 7:03 AM CDT

Since our last update we took a magical trip through the warehouse of Board Games Express. Eric, the owner, allowed Peter to take a look at all their games (over 1000 titles) and to pick out a few things that he liked. He picked The Very Hungry Caterpillar Game and Quick Chess. Yes, Chess! Eric surprised us by adding 4 magnetic travel games to his bag so that he could play with them on the long car rides to and from treatment. He also gave him a Brain Quest for 4-5 year-olds. Peter amazed us by getting every single one (300 questions) correct the very first time we looked at them. Peter also surprised his Great Uncle Welly (now 74 years-old) with chess instructions on the family room floor. Welly was a very good sport about his lessons, but Peter told me later that he’s really not a very good player. They have a website at www.boardgamesexpress.com. They’re home to every type of board game that you can imagine, card, Bible, sports, family. They also ship anywhere. Thank you, Eric for giving Peter the VIP treatment!

We spent a fun afternoon at Aunt Sandy and Uncle Rick’s house in NJ. Pop-pop Zucca was there and so were Uncle Rick’s parents. Peter was able to play with his cousins Dan and Rebecca. We all rode scooters and bicycles out in the driveway. Peter didn’t want to leave and can’t wait to go back for some more fun.

We made a trip back to A.I. duPont Hospital for Children and picked up Peter’s new brace. My Dad (Bop) went along for the ride. We left the hospital with the brace and headed to the nearest shoe store. We bought 2 pair of shoes and headed back to the hospital to have the lifts added to the right shoes. Peter really wanted sneakers that tie, like his friends have and a pair of mocks like Daddy, Ryan and Grant. It was too late in the day to wait for the shoes so we left them there and the hospital mailed them to our home when they were completed. Peter was napping when they arrived in the mail. When he came down stairs they were waiting on the Hoosier cabinet for him. He was so excited and so grateful when he saw them he said, “Oh Mama, my new shoes. I’m so happy”! Yes, of course I cried. He’s just such a special boy and I’m always so proud of him.

Peter continues to attend tumbleweeds gymnastics classes. He is now there 3 times per week because the people at duPont feel that he needs to be stronger. He now takes off his shoes, socks and brace off (just like his friends) when he is in class. He does an amazing job on the balance beam; high bar, parallel bar, tumble track and many other fun pieces of equipment. He is doing forward and backward rolls, bridges, and his own version of the handstand and cartwheel. In the building below tumbleweeds is a bookstore that has toddler story times a few times a week and recently held a cooking class. Peter was in attendance and decorated his own chef hat and then made an English muffin spider for his lunch.

The best thing that has happened to Peter this fall is…Farmer Harold bought a new combine! It is a great big John Deere and the new combines come with an extra seat in the cab just in case the sweet little boy who lives next to your field wants to go for a ride… And ride we did! We even surprised farmer Harold by having lunch with him up in the cab on a beautiful fall day.

We have been enjoying our time together this fall. We know all to well that we have been blessed. The pictures that follow were taken at my parents produce stand.

When Peter is not riding in combines or doing forward rolls he fills up his calendar with physical therapy and muscle therapy. He is crazy about both of his therapists and loves the time that he spends with them. It is a great relief to Dennis and I that he enjoys his workouts so much. He has also been having play dates with friends Tyler and Ben. Yesterday Tyler and Peter decorated cupcakes with a fall theme. The sugar content on top of them is so high you need an insulin injection just to carry them across the room.

We attended Disney on Ice, Monsters Inc, as guests of Disney last week. We joined a very special girl at the show. Her name is Haley and this year she is in the fifth grade. For her back to school haircut she donated a few years worth of growth to Locks for Love. She wanted to make a difference in the lives of others and we wanted to make sure she knew how much her kindness spoke to us. So Disney included tickets for her and her family to see the show. Well done Haley and thank you.

Today and tomorrow are extra special fun days at tumbleweeds. You get to come in your Halloween costume and play in a fun house! The children had a Halloween parade. There were so many cute children. There were twins dressed as fairies, twins dressed as a tiger and a princess. There were a few more princesses and a unicorn and the most adorable little silver haired with that you ever saw. BUT! The most precious of all was my little miracle man wearing his Tow Mater (the tow truck form the Cars movie) costume. I’m not sure which one of us was more excited but I know for sure that proudest Mom in the entire room belonged to Peter.

Yes I cried, but not just because my little boy is doing all the normal stuff but also because his little friend Hazen is not. Hazen and his Dad were Scooby Doo and Shaggy last year. This year the Kennedy family is deep in prayer for the miracle of healing that Hazen so richly deserves. Please visit them at www.caringbridge.org/visit/hazen leave a note in their guest book and add him to your prayers.

Our friend Nate is being scanned today. Big Ryan www.caringbridge.org/ne/ryan is being scanned Nov 6th. Peter’s scans are scheduled for November 14th and 15th. Thank you for your continued love, support and prayers.

Sunday, September 17, 2006 6:47 PM CDT

We got home Friday night around 10:00 pm. Our trip was at least 4 hours in each direction. The rain, the traffic and the fact that it was Friday night leaving NYC were a bad combination, but we got what we came for...a safe anesthesia experience! Peter's first peripheral line blew out so he ended up with a second stick. That was the worst thing that happened and I'm sure not going to complain about it! The anesthesia team handled our concerns very professionally and Dr. Graham did our anesthesia consult on Thursday. We had him before for scans. He said, "Oh, Mrs. Zucca I took care of Peter before. I'm sorry he's been having such a hard time. I too had problems with his airway during a CT scan, but felt that it was related to a cold." I was stunned! This breathing problem has been haunting us for longer than we realized.

Friday we had to be at Sloan at 10:30 am for a 12:30 O.R. case. Peter was NPO from Midnight the night before and woke up asking for food. That's always hard but he is now old enough to explain the fasting thing to and he just said O.K. and didn't really complain too much. I love him so and I'm so very proud of him for all he endures and the way he just blows it all off and keeps smiling and playing!

Because his O.R. suite was a fair distance from the pre-op area they could not sedate him in the room while I held him (they were concerned about his breathing and not being able to help him if he needed it). They realized that the walk to the O.R. (without Mom) was going to be frightening for him so they let me gown and carry him into the O.R. They placed all the stickers for his heart monitor and then let him push his own propofal (sedation). He fell asleep and collapsed into 3 sets of waiting arms. I left the O.R. and Dennis and I waited to hear the good news that he was fine and had no breathing problems.

He was looking for me in recovery and recovered without incident. There were no problems with his breathing and he was not in danger during his dental work. His mouth looks just beautiful and all of the cavities are filled. We are so grateful that everything went well! We have been blessed many times and in many ways.

Saturday morning he started with a cough and then a runny nose. We thought that it was from all the anesthesia and tubes but now we are sure that he has another cold. We skipped church and let him sleep-in. He wanted to have family pizza day and ride the scooter to the pizza shop. Dennis loaded up the car with 3 scooters and we put him into all of his pads and helmet. He pushed once or twice with his foot and then said he was too tired. We put everything back in the car and drove to the pizzeria.

He ate about half of what he usually does and laid on the booth on his blanket. When we got home Peter and I decided to take just a “short” nap (that was the concession he made with me since he was not tired). He woke up about 3 hours later when I walked into his room concerned about the length of his short nap. It only takes a day or two in NY to really wear him down and mess with his schedule. I hope that he will back to his old-self in a few days.

Today I was thinking about Peter and all of the miracles that God has blessed him with. He was supposed to pass away about 2-1/2 years ago, he was supposed to get a colostomy and an ureterostomy as well as have his entire right leg, hip and pelvis amputated. Well, he may have a cold but he is very much alive. He is fully potty trained and can climb on and off of the toilet without our help. I’d have to saw that God has done a mighty and wonderful work on our little man! We are grateful and we know that we have been blessed!

Thank you for your continued love and support. Please sign the guest book we’d love to hear from you.

Friday, September 15, 2006 10:13 AM CDT

Peter's EKG, chest x-ray and labs were all great! The anesthesia consult went fine. We feel comfortable with the way he will be handled in the O.R. today.

We played in the beautiful playroom at MSKCC and then left for the Ronald. When we arrived we were greeted by Joanne. I asked her if they had any show tickets for last night and they had just recevied seats for the Lion King. We signed up for the trip and left the Ronald to get an early dinner. Peter fell asleep in the stoller and Dennis and I were able to have a nice quiet meal at Finestra (on the corner of York and 72nd) We walked back to Ronald and Peter awoke. He was looking for a fish sandwich and some cookies so we walked to McDonald's.

We went back to our room to play and watch movies and waited for the van to arrive to take us to the theatre district. The show was great and Peter really enjoyed himself. One of his highlights was riding the roller coaster (escalator) with Dennis. He fell asleep in my arms during the second half of the show and was out cold for the rest of the night.

We are back at Sloan now and Dennis and Peter are playing in the playroom. He is in a very cute little gown that is covered in clowns and elephants. His peripheral line is in his arm and the I.V.'s are running. It's very stressful to play with him while he's hooked up. He will not go into the O.R. before 12:30 so he is on a very long fast.

Please pray that he will be able to tolerate all that he must endure today and that he will be safely placed under anesthesia. Pray for great dental results and an easy time coming out of the general anesthesia. No nausea, vomiting or aggitation. Thanks for caring.

Suzan and Aliza, I'm sorry that we missed both of you. GBOB. Love Dawn

Wednesday, September 13, 2006 7:58 PM CDT

Last night we learned that Peter is on the schedule at Sloan-Kettering for some testing and dental work. Dennis, Peter and I are leaving early tomorrow morning for NY. Peter will have a chest x-ray, EKG and some blood work. Dennis and I are meeting with the anesthesia department to discuss how they will anesthetize him for his dental work.

Right now we know that the dental work will be performed in the O.R. on Friday morning about 10:00am. We also know that he will be under some type of anesthesia. Anesthesia is a very big concern for us. During his May scans he had breathing problems and required an artificial airway to stabilize his breathing. During his August scans he went into respiratory failure and they had to call a “code” to revive him. We will be spending the night (Thursday evening) at the Ronald McDonald House in Manhattan.

Please pray for our traveling safety, wisdom for Peter’s doctors, safety for Peter in the O.R. and especially while under anesthesia. Please pray that he will be safely placed under the anesthetic and that he will awaken from it clearly, quickly and fully recovered. Pray that he will not experience any breathing difficulty or any periods of agitation following its administration. Pray for a great result from the dental treatment and that we will have safe travel home. Please remember to ask God for wisdom for those in cancer research so that a safe and effective cure will soon be found.

Thank you for your continued love and support. I will post additional pictures of Peter’s big boy room when we return.

Friday, September 8, 2006 6:54 PM CDT

Peter and I just returned from an amazing adventure. We drove a mule team (Honda Civic) alone the Rhine River (Indian Creek) and headed up the Alps (parked at the top of Orchard lane) we unpacked our hiking gear (a silver two wheeled scooter for me and a red three wheeled scooter for Peter). As we made our way across through the peaks and valleys (a few slightly winding curves in the Kings Coate walking path) of that famous mountain range a quaint little eatery and shopping village came into view (Wal-Mart and Zach’s pizzeria). We decided to rest and make camp (place the scooters and the little boy in a shopping cart and push it across the parking lot to get a slice of pizza). Once refreshed we meandered through the shopping village (looked at toys in Wal-Mart) and packed up our gear to head to a new altitude (got back on the scooters and headed for the car). Amazingly enough, our trek, although dangerous, (at some spots the grade was steep enough to allow you to roll without pushing) took us just short of 2 ½ hours. Peter was well outfitted with helmet, gloves, elbow pads, and kneepads. Our only close call came when he decided to race along side of his scooter down the side of a steep peak. He went down on all fours (a less experienced climber may not have been able to go on) but he was back on his feet in no time and pushing like mad with his hiking boots (Vans skateboard shoes). As we packed up the mule team (Honda Civic) I noticed that he was red faced and sweaty, surprising with such low temperatures (about 78 degrees). As we followed our previous path along the beautiful river we were practically speechless (I was down right exhausted) although, Peter was singing Edelweiss (Zip-A-Dee-Doo-Dah). It was a happy and successful expedition and we hope to one day raise enough money to go back to that pristine area and continue our research (look for play shoes for Mom) in the future. We wish to thank the local outfitters for their gracious use of the hiking equipment (Ryan and Grant, thanks for letting me borrow your scooter).

It is so nice to be happy and silly again! I got a call last night from Dr. Wexler at MSKCC. He is Peter’s main oncologist. Peter will not be rescanned until November. We will start an every 6-month scan schedule after those clean scans. I asked if it was okay to be celebrating the 1-1/2 year anniversary out of treatment (since we have results from just 1 scan) and he said, “you’re further out than that and you have an even bigger anniversary coming”! Peter will be 3 years from diagnosis and still clean on December 24th of this year! It is a very big deal! I’m not sure how we will celebrate that one perhaps we will take elephants across the Himalayas (go snow tubing with Daddy, Mama, Peter, and the dog). We will still need to return to Sloan-Kettering for the dental work, most likely in September.

We have been very busy and very happy since my last update. We are enjoying the last days of summer and the miracle that rides next to me on the golf cart seat. We spent a warm afternoon at the Montgomery County 4-H Fair. Peter and I strolled hand-in-hand past goats, sheep, rabbits, turkeys, cows, roosters and hens. He climbed on tractors and ate fair food, without fear of getting lines wet or dirty or picking up germs! We had so much fun that we went back in the evening with Nanny, Ryan, and Grant. We had a tractor-drawn wagon ride and watched in amazement as the Grand Champion beef cow was chosen. We thought that the excitement had come to a climax and just then a wild and whistling announcement came over the speakers, “folks you be sure to stick around now, the world’s largest sausage patty had just been placed on the grill! It’s hard to explain but, try to imagine my good fortune a day at the fair with my “Miracle Lad” and off to my left a circular sausage patty as big as a bed! I didn’t think it could get any better than that and one week later we loaded up the car and some out of town guests (The amazing Hazen Kennedy and Mom, Suzan) and headed to the Bucks County 4-H Fair. The fair was a blast, more cows and great food. This time there were pony rides and carnival style rides too. The best part of the day was the look on Suzan’s face when I encouraged her to purchase a chance for the cow-chip poker game. She said she would and then I explained, “You purchase a numbered spot that you hope will be lucky and if the cow poops on your spot you win the $500.00 pot. I don’t think I’ve ever seen anyone’s jaw drop that far, her look was almost as priceless as our boys. I could just imagine her explaining to Sean Jones (pediatric financial department at MSKCC), “Sean, we can pay last weeks co-pay for Hazen’s treatment. God has blessed us with a cow that had great aim”! I don’t think anyone in Manhattan would have believed her so it is probably for the best that her spot was not hit.

The Kennedy’s spent a few days and nights at our home. Nancy and the boys joined in on the sleep over. The house was loud and full of frolicking fun! Peter and Hazen spent some time mini-golfing, playing ball in the yard and just being friends. They attended Scribbles art camp together and just had a ball. There is nothing more important than watching them smile, hearing their laughter and seeing them just be a child! Please follow Hazen’s web site and add him to your prayers. (www.caringbridge.org/visit/hazen)

We paid a visit to Dr. Freeman Miller at A.I. duPont Hospital for Children in Wilmington, Delaware. The appointment was amazing. Peter’s leg has grown and so has his foot in both length and width. Before we left the hospital we went to the casting and brace area. They cut 1 centimeter off of his right shoe lift and casted his right foot and leg. The cast was removed and it will be used to make a mold. The mold is what they will use to make him a new larger brace. Praise God, more prayers are being answered! My cousin Trish and nephew Ryan were watching and playing with Peter in the waiting area while I ran to the prayer chapel. I’m always grateful for the opportunity to sit there and be so overwhelmed by His grace that all I can say is, “Thank-you, thank-you, thank-you”! When the shoe was back on his foot we headed for home. It was amazing to watch him walk. It only took him a step or two to adjust to the new height. His gait was greatly improved and I watched in amazement as his knee bent. I hope each of you who read this is thanking God each day for your healthy, happy children who can run, shout and play! Please continue to pray that Peter’s foot and leg will continue to grow and that someday soon I will be able to post that they are now the same size and no more discrepancy exists. There are no more braces and no more lifts!!! His toes and ankle are still out of his control but I know that with more prayer he will wiggle those toes.

Speaking of wiggling…Dennis, Peter and I attended the Wiggles concert in Philadelphia on August 19th. Peter had been given tickets when we were living in the Ronald McDonald House in NYC. When the day arrived his counts were too low to be able to go. We gave our tickets to another family. The wonderful people at HIT Entertainment put some great tickets back in our hands and we were even invited to a “meet and greet” before the show. We sat next to a family from Allenton, Pa. They were there for their daughters make-a-wish. They arrived by limo and their girls were so excited. We took pictures for each other and enjoyed watching the children’s face light up when they show started.

Last week we had the opportunity to be blessed by many family and friends. Peter had been in need of a more accessible bed. Arlin and Nancy Freed made a kind and generous donation that set this whole project in motion. Their money was spent on a special black bed with low sides and safety rails and pillows for his head. Mom and Dad added a round night table. There are no corners anywhere to be found so he’ll never get hurt if he falls to the ground. Lynn Rowe at Furniture Land South provided a great deal on the pricing with shipping right to our door, how exciting. I picked out wallpaper and a border then ordered. A disappointing call came back from Willow House, “I’m sorry but I can’t place your order”. Frantically we searched on the web for the beautiful patterns. The designs from Petite Playmates can no longer be found. Dennis said, “why don’t you send an e-mail to Kelly B. Rightsell (the designer) give her Peter’s website and ask for her help. Lets hope that she can order that border. A response came back from her husband Brian. We’re praying for Peter’s health and we’ll help if we can to find the fly fishing bears for your little friend. A few days later our front porch was filled with rugs, and paper and pillows and shelves. I made a dash to the Willow House once again. Judy Carpenter was there and quickly became a friend. She sent me packing with paint, roller and brush and best wishes for Peter. Thank you very much! I painted well into the night 2 coats on 3 of his walls. One wall was just for paper and our precious time capsule. We traced the hands of our very small family into the shape of a wreath. In the center of that circle I wrote the dear words of Psalm 40…I waited patiently for the Lord to help me and he turned to me and heard my cry. I then made a call to a sweet corn buying man. Don “the wallpaper guy” Moyer said he would lend a hand. He showed up the next morning with table and paste and in no time at all the room did take shape. I helped him carry out every last pail and mat and when I reached for the checkbook he said, “This one’s for Peter”. I ran for my Mom’s truck to pick-up the carpet. Janelle at Abram Bergey Carpet said, “I talked it over with Dad, and there will be no charge for this carpet. God bless Peter and his carpet is free. Oh, he has been blessed you can see. Aunt Nanny and Uncle Jamie drove down the hill. We carried the heavy roll into the house but the corner we couldn’t turn. What to try now? We hoisted the roll up onto the porch roof and brought in through the window. We could think of no answer better! We unrolled the padding and then the soft Berber. Now we can’t open the door this stuff is too thick. I placed a quick call to a long time friend and supporter. Erv Clemmer and his carpenter box were here in a hurry. He cut off the bottom of that old wooden door and later came back, to hang shelves and pictures. Peter was his helper, I’m not sure if he has recovered. Brooke at Harleysville Mattress shouted, “With a discount I’m glad to help out”. Cousin Trish came through with a hand made quilt to warm that soft bed. The right front corner boasts an artificial Alpine tree hanging full with pictures of his extended family. The frames were greatly discounted from Jeanettes Hallmark store. On the top a hand painted star from his favorite store, the Deli and Hidden talents gift shop. They are both owned by his friends Ron and Kathy and Kathy and Ron. John Cutrone was here too, to add light to the dark closets. Now his room is aglow from each person’s blessings. We can’t thank you enough for the joy you have brought or the gifts you have given. We are very blessed by our friends, family and community it is true, but we need something more from each and all of you. Your continued prayers are all that we ask…they are your greatest gift and for them we are glad.

This update is over…its lasted long enough. I really enjoy doing it but the rhymes are mighty tough!

Thursday, August 3, 2006 7:48 AM CDT

Well, We’re back to our things don’t always go as planned theme. The good news is that the PET scan was readable and was clean. Yahoo! Peter was able to gag down the contrast in the crystal light. He really had a hard time and at one point we thought it was coming back up. We brought a die cast “Fergus” train from the Thomas and Friends collection as the bribe of the day, but it wasn’t good enough. Had the contrast been in Rosenberger’s Iced Tea I think he would have been O.K., but he didn’t like the new tea and adding the contrast made it worse. We called home to Aunt Nanny to have her sweeten the pot. She threw in swimming at Molly’s house with Grant, Ryan and Molly. He wanted more so we added tractor-driving lessons on Bop’s biggest tractor and Uncle Jamie’s lawn mower. He went for it and finished with time to spare. We checked out of Ronald and walked to Sloan. When we arrived we were told that MRI was running ahead of schedule and that Peter would most likely be taken early. Wow, what good fortune, or so we thought, but our luck was about to change.

We happily headed for the elevators and much to our surpise Dr. Garcia was coming out as we were going in. Dr. Garcia was scheduled to be Peter’s anesthesiologist for the day. He had taken care of Peter on many occasions while he was under going radiation therapy. The last thing we did on Tuesday night was to pray for Peter’s anesthesiologist. That God would give him wisdom to care for and meet his needs and that he would be open and receptive to our concerns about what we felt were increasing problems recovering from sedation and his newest problem; low oxygen saturation levels while under sedation. Dr. Garcia is a kind and lovely person and I was happy that he would be in charge of Peter’s anesthesia care for the day. We had an opportunity to talk about our concerns, his breathing difficulty during the last scan and the difficulty waking him the day before from a very small dose that he received to have his dental exam. He was surprised that he was having a problem because his anesthesia care was so uneventful during radiation therapy. Peter was on the schedule to be the second child in MRI that day. Between the two cases Dr. Garcia reviewed Peter past anesthesia records and decided to start him at a significantly lower amount then he received during radiation and to go up from there if he was not under far enough. He administered the sedation and turned to leave the room. Praise God that the dose was lower than normal because Peter immediately stopped breathing. A code was called and the team was able to revive him quickly.

One of the MRI techs came out to the waiting room to inform us that there was a problem. When I got back to the MRI scanning area Peter was laying on his back on one of the crib/beds. I could see parts of his red tee shirt and blue shorts peeking out from between the arms of the team of people working on him. The oxygen mask and bag were just being removed and Peter was now awake. Before long he was sitting up on his bed. He had a nose bled from being suctioned and his abdomen was distended from the air that they put into it. There were 4 pads attached to his chest and abdomen and he was acting a little on the silly side. Our favorite nurse Miss Danielle was there and he was playing with her. The MRI scan and the CT scan were cancelled for the day and we took Peter down to the clinic for Dr. Wexler to evaluate him. He was having some nausea issues and Zofran was ordered to relieve it. Dr. Wexler reviewed the previous days PET scan with us and explained how and why it was a good scan even with the full bladder and that the scan was NED! No evidence of disease.

We gave Peter the Zofran and after about twenty minutes he asked for a fish sandwich and some cookies. We took him to McDonald’s but he didn’t eat much. He has a sore mouth from the tubes that were placed during the code. Dennis and I stopped for lunch and then we went back to Sloan. Everything was stable so we left for home. Peter seems to be completely unaffected by all of this; his parents feel differently. He was very tired from his scan trip and fell asleep before we got through the Lincoln tunnel.

We will return next month to have the MRI and CT scans completed. We will have the CT the first day and will try it without anesthesia. It is only about 10 minutes long and we hope that we will be able to keep our little man still long enough to get good pictures without the help of the anesthesia team. The MRI will be the second day and he will placed under general anesthesia so that he can be on a respirator incase he has any breathing problems.

Please praise God that Peter’s PET scan was clean, that Dr. Garcia was cautious about administering his anesthesia and that there are no long term problem from his code. Praise God that our little boy is at home with us and that he is safe and sound. Please pray that he will be safely scanned next month and that both scan results will be NED.

Thank you for your continued love, support and prayers.

Wednesday, August 2, 2006 8:02 AM CDT

Results just in, PET is NED, no need to retake. We are on to MRI and C-scan.

Dennis

Tuesday, August 1, 2006 5:33 PM CDT

Well things don’t always go as planned and today is no exception. We left for NY at 6:00am. We were able to leave later than planned because of the late start time for Peter’s PET scan. Traffic was heavy but, the ride up was uneventful. We arrived early enough to allow for check-in at the Ronald McDonald House before we needed to be at the hospital. Peter and I left Ronald on foot and in the stroller for Sloan-Kettering. It is always interesting retracing the steps that we walked for so long. It is surreal coming here and feeling like you’re home and lost all at the same time. Dennis drove the car to the hospital and we have it parked in their garage; they have the best parking rates.

We registered at the clinic and Peter and I went to the playroom to play Thomas and friends. Daddy surprised us by joining in when he arrived. We saw Dr. Meyer’s and Peter’s height, weight, blood pressure and temperature were taken. He was cleared for anesthesia and had his line placed on the 1st stick. His blood was drawn and we headed to nuclear medicine for the PET scan injection. Nuclear medicine was really busy and with a little gentle prodding they agreed to take Peter as their next patient. The new time slot was not going to coincide with the anesthesia department schedule so we went into a holding pattern. Peter was injected at 10:30. He watched the Heffalump movie for over an hour and there was no sign of the anesthesia team. I went to inquire and we were told that they were delayed in MRI. There is a window of opportunity from the time you are injected until the time that you get scanned and the possibility of missing ours was real. Peter fell asleep in his stroller and we decided to try to start the scan without anesthesia.

Dennis and I stood silently near him and prayed that God would bless him with deep and peaceful sleep for the next twenty minutes. He did bless him and he slept peacefully for the entire scan. The tech checked the quality of the pictures and they passed, he had been still enough for the films to be readable. This is where the snafu comes in. On final review of the films it was discovered that Peter’s bladder was completely full and that it maybe obscuring the view of his pelvis and his previous tumor bed. If that is the case the scans will not be acceptable and we will have to repeat the PET scan another day.

We have not been able to get a reading on today’s PET scan at all. We left the hospital with the contrast for tomorrow’s CT scan. The next snafu is this; Peter will not be able to drink his contrast in the Rosenberger’s iced tea like he usually does. We will have to put it in crystal lite. The hope is this; if the contrast does not contain any sugar then they will be able to do another PET scan tomorrow when he is finished with his others scans if the PET scan from today is not adequate. This is troublesome because he could be fasting for a very longtime and under anesthesia for a very long time.

We were able to have a dental exam performed under light sedation and Peter will be having some dental work done in the O.R. in the next few weeks. We are very grateful for the quick response of Peter’s Oncologist and his new pediatric dentist.

When we left the hospital we stopped for a late lunch/early dinner at a restaurant called Cinema. In the past we have enjoyed dining al fresco, but not today it is just too HOT! We also made a stop at Hands-on. Peter was able to take a music class with his favorite teacher Carina. It was wonderful to be back there and wonderful to watch Peter play. When he took his last class he was unable to walk and was barely speaking. Now, praise God he’s as busy and naughty as the rest of them

Please pray that Peter’s PET scan from today will be readable and free of any evidence of disease. Pray that he will be able to tolerate drinking the contrast and that his MRI and CT will be clean. Pray for a good night sleep for Dennis and me. Praise God for our traveling safety, for the easy line placement and the great accommodations with the dental department. Thanks for checking on us.

Tuesday, August 1, 2006 0:05 AM CDT

It’s 11:45 on the eve of another scan run. I’m doing laundry and cleaning the house, it’s not because the house is dirty or that we are out of socks. It’s because it is my job as the Mother to worry about the next 2 days. I’m worrying about our travel to and from the city, if his line will be placed on the first try or if he will endure multiple sticks. I ‘m worrying about getting him cleared for anesthesia after his sinus and ear infections and the bad cold and cough that accompanied it. I’m worrying about his breathing during this round of scans. I’m worrying about Peter’s ability to fast until about 2:00pm tomorrow, if his dental check will be all right and of course will this scan be clean. Will the miracle continue? Will we get to raise this child to become a man? I’ve been told that God gives everyone a special gift. I’m always wondering what my gift is; perhaps it is worrying; I feel that I do this well. As a result of the pre-scan worries I barely sleep the night before we leave so I may as well have a clean house when we get home from NY.

We allowed Peter to play while Dennis and I ate dinner tonight. Then Dennis and Peter played some more and watched a movie. Dennis gave Peter a bath and then we allowed him to eat a ham and cheese sandwich, in bed no less, at 9:30pm. After lots of high 5’s for cleaning his plate we split a pack of Hershey’s Kissable’s (we love them) and it’s calories. It’s not that we are overly permissive parents, although we may be, it’s because today we received confirmation that Peter will be having a very long fast tomorrow and we wanted to keep him up late and feed him as late as possible to help him get through the day. His Pet injection is not until 11:15. The scan is scheduled for 12:45. He will be under anesthesia for the scan and will be taken to the PDH (pediatric day hospital) where he will have a dental exam while he is still under anesthesia. He really has a hard time sitting still for the dentist and the local dentist that we saw last week feels that he may have several cavities. Teeth that are developing while on chemo are subject to lots of problems. After his exam he will be recovered from the anesthesia and we will take him to McDonald’s for a much-deserved Happy Meal.

St Catherine’s park is on the corner across the street from Sloan and Central Park is a few blocks away. I’m sure he will be looking for some playtime. If the excessive heat is an issue we will most likely return to the amazing playroom at Sloan-Kettering for some air-conditioned fun. We have a few friends that we need to try to catch up to on our visit like Hazen and Dylan. We will say Hello to the wonderful staff at Hands-On, the gang at Sugar Loaf Café, and to Lynn Bayard’s Mom and Dad. I hope that you will be at home for a quick visit, Sheila and Harvey!

Wednesday Peter has a MRI at 10:30 and a CT at 11:30. Recovering from anesthesia on the second day is always difficult. Peter becomes very agitated as he wakes up and it lasts for up to 2 hours. There is no comforting him and it is very difficult to watch him flail around and cry. We hope to be leaving the city by 3:00pm on Wednesday. We will update caringbridge with results as soon as we have them. Dr. Wexler will not be at Sloan on Tuesday and the PET scan is several hours later than usual so I don’t know if we will have results on the same day.

Tonight when we said our evening prayers with Peter we were especially blessed to be able to praise God that Ryan Vodicka had a great PET scan this morning. He will have a CT and echo tomorrow at NIH in Maryland. We prayed for the healing of Hazen’s liver and thanked God again for Nate’s great scans last week. Peter looked up from his folded hands and said, “Hey, what about me”! We said, “We’re getting there”. We prayed for his miracle to continue and that everything would go well for him this week. He looked up again and said, “What about Dylan”. So we prayed that God would continue to bless Dylan with his healing touch and that all of the children with “bad cells” would be better forever…Amen!

It only took a few minutes for the little man to fall asleep. Dennis and I took the quiet opportunity to spend time together on our knees. We gave thanks for the many blessings that God has given us. For precious things like our son, Peter, and the gift of time spent with him. For amazing miracles like our son, Peter, and the gift of time spent with him. And of course we ask for more, more time and continued miracles.

Please join us in prayer and fasting (Peter will have nothing but water by mouth from the time he wakes in the morning until 9:00am and then nothing at all by mouth until he awakes after the dental check) as we petition the throne of God for continued blessings in Peter’s life and his amazing journey back to restored health. Thank you for your continued love support and prayers. Please sign the guest book when you visit or I will worry. I'll worry that no one reads this anymore, that no one cares anymore, that no one is praying for Peter anymore. Please don't put me through it, I'd love to hear from you. Thanks

Thursday, July 27, 2006 1:49 PM CDT

Peter met his new PT, Miss Julie, on June the 9th. He likes her because she plays nice. He is now receiving 30 minutes of PT one time per week. One hour a week of muscle therapy with his friend Larry and a muscle therapy massage each evening by Mom and Dad. He has a once a week visit to the chiropractor, Dr. Jim. He attends Tumbleweeds gymnastics class on Tuesday and Thursday mornings. He loves gymnastics class and does an amazing job of being just like all the other kids. He swings, jumps, climbs, rolls, and zips across the ceiling of the room on a cable. Wednesday afternoon he attends Scribbles art camp at the Tumbleweeds gym. He takes a brown bag lunch with him and eats lunch with about a dozen kids. They have story time and then complete an art project that coincides with the story. They share a snack and have free time in the gym. He is at art camp from 12:00 to 3:00 each week without Mama. He enjoys it very much and his picture is on the Tumbleweeds website (www.tumbleweedsgym.com) right now holding a letter “P”, for Peter, that he painted. This increased activity and the addition of the muscle therapy appears to be making a difference. His right foot has grown out of the front of his brace and the lift on his shoe seems to be a bit too high now. These are wonderful problems to have. We have an appointment at A.I. duPont in August with the orthopedist, Dr. Freeman Miller. He will evaluate the fit of his brace and we expect that he will be ordering a new one. It is my hope and my prayer that his new lift is too high. I would love to have him confirm that there is growth in his right femur bone.

The weekend of June 17th and 18th we celebrated Father’s Day. It is a special pleasure to celebrate being one of Peter’s parents. Saturday we took a train ride from Colmar, Pa to Doylestown, Pa. The ride is short in distance and long on smiles. It’s so much fun to watch Peter’s face light up. Dennis pretends that he is Sir Topemhat from Thomas and Friends and in a loud booming voice he calls out the names of the engines from the show and tells Peter that they are pulling or pushing our train for us. He gets so excited. When we arrived in Doylestown we walked to a restaurant with outdoor seating and had lunch. When we were finished lunch we walked around town and had a family ice cream cone. Sunday morning I noticed that a hot air balloon was landing in one my Dad’s field. The chase team was lost so the balloon had to spend extra time in the field. The pilot gave a tethered ride to Nancy and her boys. While they were up in the air I drove home and picked up Dennis and Peter. Peter was in awe of the balloon and couldn’t believe how big it was and how colorful. You should have seen his face when 3 of us climbed in the basket and the pilot took us up. We had a great view of home from the air. We saw Nancy’s home, Bop and Green’s home and our home. Home together, as a family, is where our hearts have been for this whole journey. What a special blessing to view them all on such a special day. Thank you, Lord! We landed safely and watched them deflate and put the balloon away in its big bag. We headed down the hill and back upstairs to serve Daddy breakfast in bed.

June 19th – 23rd was our Vacation Bible School week at church. Peter had a wonderful time learning about Jesus and making new friends. June 25th – 27th we were in Ocean City, NJ. Aunt Sandy and her friend Irene spend a week there each summer in a beautiful house on the beach. This is the second year that Peter and I were invited down for some fun in the sun. My sister, Nancy and her boys Ryan and Grant came along as well. Sandy’s children Dan and Rebecca and Irene’s boys R.J and Daniel were all in the same house. Peter was in heaven he loves to play with his cousins and his friend R.J. brought a very large collection of Thomas and Friends trains with him. Thomas trains are Peter’s favorite toys at the moment. We spent sometime on the beach, in the water, and on the boardwalk. It was a blast! Thank you Aunt Sandy and Irene.

July 1st – 3rd Pop-pop Zucca came for a visit. Peter was very excited for his visit. And woke each morning asking where his Pop-pop was. They watched T.V. together and played. July 4th my Mother took an ambulance ride to the local hospital, she ended up staying there till July 14th. She had a bad case of pancreatitis. She is felling better but, has just started feeling well enough to get down on the floor to play with Peter again. He is thrilled to have his playmate back.

July 6th – 25th my sister, Nancy and her family left for Africa on a wonderful and well-deserved Safari. My cousin, Trish and I were in charge of her flower business and Peter got lots of extra time out in the fields with us and riding around on the golf cart with my Dad (Bop) and my Uncle Welly. One of Peter’s favorite days was spent running through a very slippery and muddy cornfield chasing Trish. I couldn’t see him, but I could hear him and Trish yelling back and forth to each other. Peter came back to the produce wagon soaking wet and covered in mud. He could barely speak though his laughter to tell me that he had slipped and fallen in a great big mud puddle. Life is good for our healthy, happy, joyful little boy down on the farm.

July 10th Dennis and I took Peter to his first movie. We saw Cars in Montgomeryville’s old water tower theatre. He watched the entire show. He was ready for the experience and really enjoyed the family night out. He has collected the toy cars that star in the movie from inside of the McDonald’s happy meal boxes. When he plays with them he talks about the movie and calls them all by name.

While Nancy and her family were in Africa my brother, Ralph and his wife Beth arrived from Ohio to spend a few weeks staying at Nancy’s house and helping on the farm. They came with more of Peter’s favorite things, children. Margaret, Catherine and Juliet arrived with lots of energy and a willingness to play. They played on the golf cart, in the sprinkler and with a batch of kittens on my parent’s farm. While they were here my Mother turned 73-years-old. We had take-out Chinese food and a birthday cake that said, “Happy Birthday Green” on the top. We got some great pictures of Green and all the children sticking their finger's into the icing and then into their mouths. Time went by so fast that before we knew what happened it was time to say, "good-bye" to The Freed’s of Ohio and "welcome home" to The Welby’s.

Peter had an evaluation with the Montgomery County Intermediate Unit to determine what types of services he may need from them. The evaluation went well. Peter spent some time walking on the balance beam (quite an accomplishment for someone whose legs are two different lengths) and showing the man in charge his forward rolls. We are awaiting the results of all the testing but I don’t think he will be getting more than 30 minutes per week of physical therapy.

Peter’s friend Jessica had a birthday party on July 15th. It was held at her dance studio. There were lots of children and lots of fun. Peter was very tired and was not overly interested in joining the fun. He ate a cupcake that was baked in an ice cream cone and was given a very nice prize bag. One of his favorite prizes was a trick watch. The watch is really a water pistol so if you see him and he wants to show you what time it is be very careful, you may get an eyeful. He did trick Ron at the Vernfield Deli and of course his Dad.

The next morning we found out why Peter was not himself at the party. He woke up sick! I thought he was going to get over the cold on his own but he was not able to. By Friday he was much worse and we took a trip to the doctor. He has an ear and sinus infection. He started antibiotics and will complete the course just in time to head to NY for his next scans.

Today we went to the dentist and found out that he has many cavities. The dentist would like to put him in the hospital under general anesthesia to clean his teeth, x-ray his mouth, fill the cavities, and put a sealant on his teeth. I will be sending an e-mail to Sloan-Kettering to see if he can have the dental work done there without general anesthesia.

We will be leaving on Tuesday morning about 4:00am for NY. Peter will have a physical exam, a peripheral line placed, labs drawn, and a PET scan on Tuesday. Wednesday he will have an MRI and a CT. We will be staying at the Ronald McDonald House. As usual his scans will be done under anesthesia. Peter seems to get a cold with ear infection about 2 weeks prior to every scan. Last time around they had to stop his MRI scan to place an artificial airway. Dennis and I were very stressed.

Please pray that Peter will make a full recovery from his cold and infections before we arrive on Tuesday morning. Pray that his line will placed without difficulty and that all blood values will be great! Pray that he will be able to tolerate his pre-anesthesia fasting and his post anesthesia recovery. Pray that all of his scans will remain clean and that we will be told nice and early on Tuesday afternoon that he is NED! No evidence of disease! Please pray for traveling safety, wisdom for his doctor’s, rest for his parents, the continuation of his long, and healthy life.

Please praise God with us that his friend Nate’s scans were clean last week. Please pray for his friend Big Ryan. (www.caringbridge.org/ne/ryan) He is being scanned on Monday and Tuesday at NIH in Bethesda, MD. Please pray for the healing of his friend Hazen’s (www.caringbridge.org/visit/hazen) liver so that he may continue treatment. Please pray for his friend Dylan (www.caringbridge.org/me/dylanhartung) as he has just started a new treatment for neuroblastoma.

Thank you for your continued love, support and prayers.

Thursday, June 8, 2006 2:37 PM CDT

On Saturday, May 27th, we attended the Harleysville parade and country fair days. I love the fair and have been attending it my whole life. It is really fun for me to take Peter there. Dennis and I met up with Peter’s friends Jessica and Rebecca and their mom, Jenn, at the parade. There were lots of tractors, antique cars, horses and a band. Everyone was throwing candy from his or her mode of transportation and the children got more then enough. In between the parade and the fair we went back to our house for hot dogs on the grill and some playtime in the yard.

The children had a wonderful time on the rides and they even had their faces painted. Peter had a lion painted on his and spent the evening roaring and scaring his Dad. This is the first time he allowed anyone to paint his face and I’m so proud of him for sitting still and trusting a stranger to work on or around his face after all that he has been through.

Sunday afternoon I took Peter to the shoe store to have his feet scanned and sized. I know they just told us that his right foot would not grow anymore but his brace is not fitting him properly so I was convinced that his foot grew. I pulled into the parking lot of the shoe store and called my friend Missy. I said, “Please pray for me going to the shoe store is so hard. I don’t want to stand in there and cry, again.” Please God let this child’s foot have grown. Guess what? His foot grew a half of a size. Way to go God! Yes, I did cry in the shoe store but it was happy tears for a change. His right foot is now a size 8 and the left foot is a size 10. We are still buying 2 pairs of shoes to make one and then adding a lift. Each new pair of shoes cost about $100.00. No, they are not covered by insurance. Why? Because it’s not medically necessary! Praise God for this healing and growth!

June 1st was the scheduled appointment at Salford Hills Elementary School for Peter’s speech evaluation with his new speech therapist, Eva Beagle. Schools and hospitals are both institutions to Peter and he wanted no part of being there. He decided not to speak with Eva and I thought, well this really won’t give her very much information. Then she started to ask him questions about his Thomas The Tank Engine stickers. Well the Thomas questions broke the ice and Peter couldn’t stop talking. She decided that his speech was age appropriate and that his vocabulary was well above his age group. Long story short…He does not need speech therapy any more. YEAH!

Saturday morning, June 3rd was my birthday. Peter and Daddy surprised me with breakfast in bed. We had a wonderful assortment of Pop-tarts and I got to wear a sparkling, light-up tiara. It was the best birthday in the whole world. Peter agreed that it was so much fun and he crawled up in my lap to eat my Pop-tart. Saturday evening was my nephew Bobby’s high school graduation party. Way to go Bobby!

Sunday was communion and foot washing Sunday at our church. Phyllis Leather took all the children to a classroom for a story so that the men and women in the church could separate and wash each other’s feet. I took Peter to the classroom with the children and told him I would be back soon. Much to my surprise he stayed and very much enjoyed the recreation of the last supper table and the foot washing. The children enjoyed sharing grapes and crackers. When church was over Dennis went to get Peter and took him to the car. When I came out to the car I asked him if he had a nice time with his friends. I noticed that he wasn’t wearing any shoes and asked what happened. He said with a big smile, “I had my feet washed”.

Monday, Peter and I and my cousin Trish went to A.I. DuPont Hospital for Children in Delaware. Peter had an orthopedic evaluation. He had a series of x-rays of his hips and pelvis and legs. The really great news is that his hip dysplasia is stable. I’m hoping that we will be able to keep it stable and avoid any surgery to his hip. His left leg is growing much more rapidly than the right leg. We can now easily see his leg length discrepancy. The discrepancy has increased from 2.2 centimeters to 4.1 centimeters. We will be adding a larger lift to his right shoe. The old lift was 1 cm and the new one will be 2.5 cm. We are hoping that the new lift will stabilize his walking again. We were told to increase his activity level to try to increase blood flow and improve his chances of growth in his right femur. The damaged nerve does not stimulate the muscle to grow and as a result the muscle cannot pull the bones into growth. The plan is to add more gymnastics, some swimming, mini-golf and possibly some karate to our week. We will return to DuPont in August for the next evaluation. Let's pray that the increased activity will help his right foot and leg to grow.

We left the hospital and headed south to Bethesda, MD. Ryan and Missy were arriving at BWI at 6:40pm. We arrived in that area about 6:15pm and were able to pick them up at the airport and take them to their hotel. Ryan was scanned the next day at NIH. His tumor is not responding to transplant the way that his doctor’s had hoped. Ryan started chemo on Wednesday morning. He and Missy will be in MD until Sunday night. Ryan will be rescanned after 2 rounds of chemo to see how things are going. It was great to be with our extended family again. Please keep Ryan and his miracle of healing in your prayers. (www.caringbridge.org/ne/ryan)

Hazen was scanned on Tuesday also. His report shows some growth of his disease. He will be starting an oral chemo 3 times per day and will be rescanned in 1 month. Please keep Hazen and his family in your prayers. Please ask for his complete healing. (www.caringbridge.org/visit/hazen)

This morning while I was waiting for Peter to finish his gymnastics class my phone rang. It was my friend Aliza. She was very upset because her son Nate has a mass on his foot. Please pray that Nate has some very easily treated minor problem with his foot and that there is no evidence of disease present. He had been in remission for about 1 year and I really want it to stay that way!

We are in the process of trying to create a more accessible bedroom for Peter. The bed that we have in his room is too high for him to get on and off of. It is currently pushed against the wall with the dresser on the other side to keep him from falling out. We have considered a trundle bed so that he can climb onto the trundle and then into the bed but have ruled them out because we are concerned about him falling onto the hardware or the sharp corners of the drawer. We have found a bed that has side rails that can be raised and lowered. The lowest setting will have the rails about 7 inches off the ground. There are wooden safety rails available that can be removed when he no longer needs them. Peter’s anatomy has been altered at his right hip/pelvis/sacral area. Much of the muscle has been removed and we really want to avoid any falls from the bed. They could be potentially very harmful and painful. My cousin Trish has been working on Peter’s room makeover too. This morning she showed up with a beautiful patchwork quilt that she made for Peter. It is awesome and so is she. Trish has spent many nights with Peter and I inpatient at Dupont Hospital, slept over night with me at Ronald McDonald House in NY and driven to Bethesda, MD so that I could be with my friend Missy while she awaited Ryan’s scans. She prays without ceasing for Peter and all of his friends with cancer. If anyone ever hears about a contest for cousin of the year please let me know so that I can enter her.

Thank you Erv, for the wonderful raised platform/stool that you made for Peter. It has really helped to give him greater accessibility in the bathroom.

Thank you for your continued love, support and prayers.

Monday, June 5, 2006 10:39 AM CDT

Today, Peter and I and my cousin Trish will be traveling to AI Dupont Hospital for Children in Delaware. Peter has a 2:00pm orthopedic evaluation. Please pray that his growth plates remain open and that the right side of his body will be able to grow. Pray that his leg length discreprency has not increased. Pray that his doctor will be given wisdom to treat any problems that he may find. Ask God for traveling safety.

From Dupont we will be traveling to NIH (National Institute of Health) in Bethesda, MD. We will be meeting Missy and Ryan Vodicka at BWI (Baltimore Washington International Airport) and taking them to their hotel. Tuesday we will sit with Missy and wait and pray while her son Ryan is being scanned. Ryan underwent a stem cell transplant last June 3. His sister, Robin, was his donor. Ryan has been battling disease that was present in his liver. Please pray that Robin’s cells have destroyed all disease that was once present in his liver. There is a link below for Ryan’s caringbridge.

Our little friend Hazen also has scans on Tuesday. Please keep him in your prayers as well. He recently completed his radiation therapy. His battle is also with disease in his liver. Pray that God will be merciful and that Hazen’s liver will be free of all disease. Hazen’s web site is www. caringbridge.org/visit/hazen.

Thank you Mother & Daddy and Robert & Chris for your kind and generous gift to Ryan. Thank you Arlin & Nancy for your kind and generous gift to Peter. Thank you everyone for all of your love prayers and support.

Saturday, May 27, 2006 8:37 AM CDT

This morning our friends, the Enovitch's are having a funeral mass for their little girl, Angel Grace. Our hearts are forever broken. Please keep them in your prayers. Thank you.

There is a link to Gracie's site below.

Friday, May 26, 2006 11:25 AM CDT

Yesterday was a roller coaster of high’s and low’s for us. I sent an e-mail to Peter’s doctor requesting the results of his MRI and CT. While I was waiting for his reply I went onto Grace Enovitch’s caringbridge.

I was heartbroken when I read the update that she had earned her Angel wings yesterday. Grace was a beautiful and sweet little girl. Dennis, Peter and I met and fell in love with her and her family while we were living together at the Ronald McDonald House in NY. We cannot imagine the sorrow and heartache that her family must be feeling. Please visit Gracie’s site there is a link below and leave a note of encouragement for her family.

Dr. Wexler’s e-mail was wonderful. All 3 of Peter’s scans are great! NED! NED! NED!

Thank you for your continued love and support. Please continue to pray for Peter’s continued miracle of healing and for complete restoration of his body. Pray for the Enovitch family and that God will grant wisdom to all of those in cancer research. We really need a cure for this disease for all of us!

Friday, May 26, 2006 11:25 AM CDT

Thursday, May 25, 2006 2:31 PM CDT

Peter awoke yesterday around 7:00am. He was thirsty so we decided to give him his iced tea with contrast right away; sometimes it takes almost an hour to get it into him. He needed to be done drinking by 8:30. At 7:15 we made our first phone call home to my sister. We usually make several calls home and have a variety of family and friends bribe him into drinking. Nanny offered him some time out in the fields planting pumpkins with Bop. Peter countered with, “how about Grant”? Nanny gave into his demands and added Grant to the pot. Peter is a champion negotiator and countered again with, “how about Ryan”? Ryan has been sick so that was a big no! Peter asked for, Welly”. Nanny gave in again and he was done drinking by 7:20am. What a guy! That was the easiest contrast drinking that we’ve experienced to date!

We arrived at the hospital by 8:30 and Peter and Dennis headed to the playroom. I went to talk with the girls in the anesthesia-scheduling department. Peter was done drinking his contrast so early I was hoping that he could get his scan earlier if there were any schedule changes. We got called into the exam room, cleared for scans and received his MMR vaccine (to be administered while under sedation). We went to the I.V. room got his lines connected and left for MRI. The morning was going great and we thought what an easy and uneventful scan trip this has been. NED on his PET, no problem with the contrast or the lines, but our luck was about to change.

The anesthesia department was running late and Peter’s MRI started an hour late. Un benoneced to us, while he was under anesthesia his oxygen saturation level dropped so low that they had to stop the scan and place an airway. Dennis and I were sitting in the waiting room saying, “Where is he” “He should be out by now” “where is the recovery nurse” “What’s going on” “He’s been under anesthesia for a long time”. The recovery nurse showed up. I took the stroller and headed down stair to CT. I wanted to get his contrast ready so his scan would start right away. Experience has shown us that the longer he is under anesthesia the worse waking up is for him. About 15 minutes later the nurse, doctor and Dennis came out of the elevator. I was pacing the floor because this was out of the ordinary too! Dennis didn’t look so hot and he walked over to me and said, “Hon, look at Peter they have something in his mouth to help him breathe. The CT was being delayed while they tried to stabilize his breathing. We were sick and scared. Yesterday we were worried about his disease returning and today we are worried about losing him during the scan. None of this ever gets any easier.

The CT was finally over and Peter woke up. We headed for home and Peter screamed, cried and thrashed for about the first 1-1 1/2 hours of the trip. We stopped at a rest area so I could get him out of the car seat and hold him. Dennis went inside to get him a cheeseburger. Peter was exhausted and miserable. The cheeseburger was not the right kind (Roy Rogers not McDonald’s). He was finally getting over the anesthesia agitation and we put him back in the car seat and started for home again.

When we came through the Lansdale interchange of the turnpike we ask him, “Peter, where are we”? And he looked around and said with a smile, “Home”. He said hey, “there’s my church” as we drove by and then the best thing came into sight, McDonald’s. Daddy turned in and bought the right kind of cheeseburger, 3 chocolate chip cookies, and milk. About 15 minutes after we pulled into our driveway, Mark Fly pulled in with dinner for us. Thank you Mark and Ruth Ann dinner was great! We had a nice relaxing meal and then set out filling the pumpkin patch promise that was made earlier in the day. Nanny and Grant showed up with the golf cart and we rode up to Bop and Green’s house to work in the fields. Welly showed up as promised and he had a tractor and wagon for Peter to play with and Bop had a Bob The Builder balloon for him. Green sent a new John Deere hay baling set up to NY for him and his friends Jessica and Rebecca sent a bug game and markers and tablet to the city for him also. Dennis and I bought a pirate ship as his contrast bride toy but we brought it home with us because he really wanted Thomas the Tank Engine.

We did not attend gymnastics this morning because Peter is worn out. We did spend several hours playing with his friends today at Mikayla’s birthday party. Happy 4th Birthday Mikayla! We had a wonderful time at your party. Mikayla gave Peter a very nice caterpillar to keep at his house for as long as he wants to. If he doesn’t want it any longer he has to give it back to her (fair enough)! Eli, Jessica, Rebecca and Janelle from Sunday school class were there along with some new friends. There were lots of crafts to make, toys to play on cake.

We are still awaiting the results of the CT and MRI. I will post them as soon as we get them. Please continue to pray that they will be clean. Tuesday morning we were told that Peter’s foot, most likely, will not be growing. The extremity was permanently damaged by the large tumor compressing the nerves and blood flow. Please pray that his foot and leg will be restored to full health. Thanks.

Tuesday, May 23, 2006 1:47 PM CDT

Peter's PET scan is NED.

Sunday, May 21, 2006 7:17 AM CDT

April 27th Peter had a fun and busy evening with my parents. Green and Bop had dinner at our house and surprised Peter with a seed tray and over 100 peat pots. The 3 of them sat at the kitchen table planting seeds, they had so much fun that they didn’t want to stop. As a result we have about 100 small zinnias and about 6 Big Max pumpkin plants growing outside on our picnic table. Our flowerbeds will be very colorful this year.

The 28th of April was our last session of physical therapy with Miss Ardene. We are gearing up to start speech and PT with the intermediate unit in June. We met up with the Amazin Hazen Kennedy (www.caringbridge.org/visit/hazen) his parents and some friends at Giggle Berry Fair in Lahaska, PA. The children had a blast riding the carosouel playing in a massive indoor play land and playing arcade games. We had dinner together and then headed for home. We met Hazen and his parents during Peter’s final inpatient stay at Sloan-Kettering. Mom, Suzan, has become a very special part of my life and I’m grateful for the privilege of sharing this difficult journey with Suzan.

On May 2nd, Peter had a special picnic lunch in the back yard with his friend (my cousin) Trish. Peter, likes to play with Trish because he says, “She plays nice”. Dennis and I have been trying to find a tricycle that Peter can ride but have not been having much luck until now. Ed from Bike Works in Harleysville heard about Peter’s needs and made a call to his friend Mike. Mike heard about Peter’s challenge getting on and off of tricycles without falling or pulling them over on himself. He gave Peter a very handsome Blue and white Trek tricycle. The tricycle is very wide in the back and very heavy. Peter is able to get on and off of it without falling. Thank you Ed and Mike for your kindness.

We had a play date at Eli’s house on May 3rd. Eli is Peter’s friend from Sunday school. He has a big swing set in his back yard and lots of toys to play with. Peter’s favorite toy is Eli’s baby brother Timmy. He likes to give Timmy a bottle and talks about his cute little face. While we were walking home from Eli’s house we stopped for a slice of pizza because playing makes you really hungry. Peter had another haircut, which I think will be one of my favorite thrills for as long as I live. He looks so sweet sitting in the chair holding the water bottle and squirting himself in the face with it. He giggles with delight and says’ “look Mama I’m wet”.

Peter continues to attend gymnastics classes at Tumbleweeds on Thursday mornings. He loves Miss Carla and has a friend named Damian. He is working on cartwheels, forward rolls, backward rolls, headstands, swinging on the high bar and bouncing on the trampoline. He has a wonderful time there and does a great job keeping up with the other children. I had a bridal shower to attend on May 6th, so I packed a picnic lunch for Peter and Dennis and they spent the afternoon picnicking and playing on the playground near our home.

On Saturday morning the 13th Peter had a play date with a new friend, Nina. Nina’s mom works with Dennis and they live near our home. Sharing his toys was not high on Peter’s list of priorities that day. I don’t understand why that is such a hard concept. He has enough toys for about 60 children and only wanted the things that Nina picked up. But we did have a nice golf cart ride out to the deli for a treat. Later that afternoon Aunt Sharon and Uncle Mark came for a visit. Peter’s likes to play with Aunt Sharon because, like Trish, she plays nice too! Part of the thrill of playing with the adults is that you don’t have to share your toys and they are all so thrilled to see him happy and healthy that they will do anything he wants with a smile.

Peter was very sick on Mother’s Day. Dennis and Peter stayed home from church. I had to teach Sunday school so I went. When I got home all he wanted was Mama. He said, “Mama I’m so sick, need medicine”. That was not what I wanted to hear on Mother’s Day or any other day. He started to run a fever and early Monday morning we were at the pediatrician. He has ear infections again, and the antibiotic gave him such severe diarrhea that we had to stop the drug to rest his GI tract. He was supposed to be in a wedding on Saturday and we leave for scans in NY on Tuesday. Infections can show up on PET scan as pre-cancerous activity and diarrhea can show up on your tux.
So we really needed to get things under control. We will try to celebrate Mother’s Day today.

Friday night was the rehearsal and dinner for James and Jaime’s wedding. Peter did great at the rehearsal and we were really surprised that he was so into walking up and down the aisle and standing up in front of the church. Saturday he took a long nap and I dressed him in his tux. Heart be still, I’m so in love with my little man! He looked adorable in his tux even when he stood in the back of the church crying and saying, “I’m not going”! There is a tradition at our church, when you attend a wedding or other formal event you wear your gown or tux to church the next day. Peter will be in his this morning and I can’t wait to see it again. There were a few moments when I was watching him parade around that I just had to swallow hard and pray, please God, let him live to be an adult. Please let him stand in front of church (a healthy, happy and in love adult) in his tux, again. I want a future for him!

We are leaving Tuesday morning about 4:00 am for NY. Peter has scans on Tuesday and Wednesday. He will endure the usual, fasting, line placement, lab work, injections, drinking contrast and under going anesthesia. It is a couple of very hard days for all 3 of us. We invite you to join Peter and us on his fasts. Fasting does not mean that you have to give up all your food if you are unable, please give up something else like coffee or the TV. Each time you reach for it please think of Peter, giving up everything, and pray the God will grant him another set of clean scans and 3 more months of care-free living.

Thank you for your continued prayers and support of Peter, Dennis and I. As always we head into scans very concerned about our future. Please pray that Peter will be able to tolerate all that he will have to endure. Pray that his line is placed on the first stick, that he will be able to drink all 8 ounces of the nasty contrast, that all of his tests will be on time so that his fasting time is shorter. Pray that he will tolerate his anesthesia well and will wake without difficulty or agitation. Pray that he will sleep all the way to NY and that he will not see familiar landmarks and start crying and begging us to take him home. Ask for God’s strength and blessings for Dennis and I as we care for Peter and meet his needs. Ask for peace and rest for us in the days that lie ahead. But, most importantly ask that God’s precious miracle of healing will continue and that all scans will be NED (no evidence of disease) Peter’s right foot and leg have not been restored to full health, please pray that they will start to grow again and that his ankle will work and his toes will wiggle.

Please pray for our friends:

Big Ryan www.caringbridge.org/ne/ryan
Little Grace www.caringbridge.org/oh/grace.eno
Amazin Hazen www.caringbridge.org/visit/hazen

These 3 children have all been scanned recently and did not get the results that they needed. Hazen has started radiation to his liver, Grace has started radiation to her skull, and Ryan will be returning to NIH (national institute of health) in 2 weeks to discuss his new treatment options.

The families below all have children who earned their Angel wings:

The Brady’s www.caringbridge.org/de/haley
The Emily’s www.caringbridge.org/visit/nathanielemily
The Newman’s no web site but they are struggling.

Also, please praise God that Peter’s friend Nate had clean and great scans the last time around!

Thank you

Wednesday, April 26, 2006 1:23 PM CDT

The end of March was a busy time for us. There was a fund raising auction for our church youth group; it came complete with dinner and lots of busy children to play with. Peter and his friends spent the evening climbing up and down a set of bleachers in the gymnasium where it was held. He is enjoying Sunday school class with all of his friends. I have been teaching his class since he got clean scans in February. One of our lessons was about Jesus healing people and I brought in lots of bandages and a play doctor kit. I bandaged all of the make believe ouchies that the children had. Peter wanted no part of the doctor kit or the dressings. Apparently he has had his fill of the real thing. I am still working on Monday’s and Peter is Aunt Nanny’s boy for the day.

They spend the morning playing with the children at Covenant Presbyterian Church in Vernfield. Peter has been going there with Nanny every Monday morning since he was born (health permitting). On March 30th Nanny and Peter spent the day farming and took some carrots to a friends house to feed to the horses. Friday March 31, 2006, my little man and I hit the greens. It was our first miniature golf outing of the year. Peter did awesome! He walked over curbs, up and down stair steps, and managed to get several holes in one. He stands at the tee and throws the ball, and then he says, “Mama, where did my ball go”? “Oh there it is in the little cup”. He even threw the ball into the final hole for a free game. It’s an odd way to play the game but it was a very proud day for us because it was the first time he was able to ascend or descend the stairs with out any help. We also filled all of our bird feeders when we got home. Peter climbs the ladder and I hand him the scoops full of seed. He pours them in and we move on to the next feeder. Peter really enjoys the birds and sometimes I wonder if he remembers watching them when he was sick. We always kept them filled so that lots of birds would visit and we would watch and point them out to him.

April 2nd I spent the morning with Angel Haley’s Mom, Jean. Dennis taught Sunday school that day and the children planted flower seeds. He had the help of another Mom and One of the young men at church that helps with the landscaping but things still got crazy. Peter has a tray full of Zinnias growing on our windowsill to show for that day and Dennis has a glazed look on his face. April 3rd we paid our first visit to Tumbleweeds. It is a children’s gym near our home. My cousin Trish and I took Peter there for an open gym session. He loved it and I’m happy to say that a few weeks later he started taking gymnastics lessons. The first diving forward roll that he completed caused me to hyperventilate and all color to drain from my face. Peter stood up with the most wonderful look of pride and amazement. He yelled, “Mama, look me did it. Me did it! I cheered for him and fought back tears of pride. My son is awesome! Then I tried really hard not to vomit. I thought to myself you’ve got to be kidding me does anyone here have any idea how long and how hard I have worked to protect this child from everything. The answer to that, of course, is no. I will try my best to keep it that way so that Peter’s experience is as normal as possible.

Thursday April 6th I sent an e-mail to Dr. Wexler at Sloan-Kettering. I have noticed a change in Peter’s bowel habits and found out that he is most likely suffering from a condition known as Chronic Radiation Enteritis. This is a side effect of radiation therapy that occurs about 6-18 months after the end of radiation treatments. Peter’s last treatment was February 3, 2005. He falls right into the time frame and has many of the symptoms, such as, nausea, abdominal pain, cramping, frequent bowel movements, mucus and blood in his stools. We have made some suggested dietary changes that include but are not limited to: no sugar, no caffeine, and no chocolate. The timing for all of this was perfect. It came the day before our church Easter egg hunt. So we stopped talking about egg hunts and Easter candy and changed to plan “B”. We hardboiled and dyed over 4-dozen eggs. Ryan and Grant came to our house to dye eggs with Peter. I wrote some names on the eggs with a wax crayon. The first one that Peter took out of the dye had his name on it. He was amazed and said to us, “look it says Peter Gucca on my egg”.

From Good Friday through Easter Sunday our church held a prayer vigil. I was able to spend an hour there with my friend Charlene. It was held in a small prayer room in the basement of the church. The walls were lined with prayer requests and there was an entire sheet devoted to my favorite little man. There was a roll of paper on the wall where people could write their personal requests during their hour in the room. When I walked into the room there it was in large black letters the words, HEAL PETER! Sometimes this whole journey is still so surreal and overwhelming. It is truly humbling to stand in such a hallowed place and know that before I came through the door someone loved my son enough to raise him before God’s throne for us. Thank you to each of you who quietly and loudly raises and praises God for all that he has done for Peter and our family.

There was also a prayer request on the wall for a little boy named Nathan Emily. You may have seen his Mother’s post in Peter’s guest book. She asked me to help find treatment for her son. I did e-mail her and gave her information about Peter’s doctors. When we spoke on the phone I found out Nathan and Peter’s doctors had spoken and it was too late to treat her son. He was placed on hospice care the next day. His caring bridge is www.caringbridge.org/visit/nathanielemily. Please pray for his family.

Easter Sunday the bunny did make a stop at our house. Pop-pop Zucca was able to walk through the yard with Peter while he picked up eggs. But, he would only pick up eggs. The little plastic chicks and carrots that were also filled with chocolate and change he left in the yard, because he was on an egg hunt (go figure). We went to church and Sunday school with Pop-pop. He got to witness first-hand Peter enjoying his friends. We had lunch at Aunt Nanny’s. Uncle Jamie’s family has a really nice egg hunt each year and we had no intention of saying no to it. Thank you to Aunt Sandy and Uncle Rick for removing all the candy from Peter’s basket. Thank you to Aunt Nanny and her gang for hiding lots of non-candy items in your egg hunt. It meant that we could say yes to some of the candy that the bunny left at our house.

Last night we put Peter’s new sneakers on his feet. This is the first pair that has a lift added to the sole. His right femur is 2.2 centimeters shorter than his left. The lift is 1 centimeter. The company did a great job of removing part of the sole, adding the lift and then replacing the sole. If you didn’t know that it was there you would not notice it. The orthopedist told us that we would most likely need to gradually introduce it. He said that he would probably fall a lot while he adjusts to it and that he would not make it greater than 1 centimeter because he would have difficulty ambulating. Well he was dead wrong and he will be very glad that he was. Peter loves the shoe and for the first time in his life he spent an entire day walking and playing and has not fallen once. He typically falls about 10–20 times per day. When we were getting ready for bed I asked him about his new shoe. He told me this one is very little ( holding up his right foot in his hand) and this one is very big (holding up left foot in his hand. I told him that Mama and Daddy noticed that too and that is why we got him the new shoe that is bigger. He said to me, "Oh Mama, thank-you very much". Dennis figured out the percentage of the discrepancy in his leg and said it would be like one of his adult legs being about 4 inches shorter than the other. The lift has made a huge difference in his gait and has reduced that amount of upper body swing that he was using to propel himself. I hope that we will be able to gradually increase the lift and decrease the swing. Today he played on his scooter. It was the first time that he was able to ride it without help. He rode around the living room with his right foot on the scooter and his left foot pushing him along. He had such joy on his face and he kept yelling, "Mama, look at me. Me can do it by myself me big. Look at me." Don't think for one minute that I miss even the smallest accomplishment. I watched him scooter across the room but, more importantly I watched his confidence grow. Thank you Dr. Freeman Miller. Thank you God.

Today was our last speech therapy session with Miss Laura. She was a wonderful friend and teacher to Peter and we will miss her very much. Friday will be Miss Ardene’s final physical therapy session also. Miss Ardene has been a lot of fun for Peter to play with and she has helped him and helped us to help him in so many ways. We hope that they will both visit Peter over the summer as he rides through the fields on the golf cart and works at the produce wagon. Peter will be starting a new therapy program with the intermediate unit on May 1st.

Peter’s friend Hazen (www.caringbridge.org/visit/hazen) had a MRI on Monday and bone marrow aspirations yesterday. Please pray that they are clean. Nate will have scans tomorrow and Friday. He is currently in remission with the same tumor as Peter. Please pray that his scans are clean and that he is in remission forever. Peter’s next scan dates are May 23rd and 24th. I’m already having a hard time dealing with another round of scans. Please pray that Peter’s miracle will continue. Pray that his precious body will be completely restored and that he will be disease free forever and ever Amen!

Thank you for your continued prayers and support. Thank you to all of you who continue to donate money to cancer research in Peter’s honor and thank you for your entries in the guest book they mean a lot to me.

Wednesday, March 22, 2006 1:54 PM CST

We left Monday morning, February 27th, for the airport. Nanny and Bop rode along to bring the car back. Peter was very excited that we were going to Florida to visit Disney World. He clapped and cheered when we left the driveway. When we arrived at the airport we opted for curbside check-in so that we wouldn’t have to juggle lines, luggage, and Mr. Energy all at the same time. While Dennis and I were getting everything out of the car and talking with the attendant Peter was inside the car with my father and sister. He kept saying to them, “Hey, what about me?” “Don’t forget me!” As if we could even consider it, he was the whole reason for the destination choice.

He was wide-awake and full of life walking through the airport. As is usually the case when I travel our gate was as far from the front door as you can get. Peter was thrilled with this and he held hands with both of us playing one, two, three, and lift as we walked. He giggled and laughed and shouted, “AGAIN” each time we lowered him back down on the ground. As we were approaching our gate we came upon a nice hill. Peter was thrilled and we spent lots of time running up and down it. We waited by the door of the jet way eating Teddy Grahams and drinking Milk. When we boarded Peter took his seat in-between Mama and Dad. He sat like a big boy in his seatbelt during take-off and landings. He made a purchase on the plane of an in-flight snack box and shared it with Mama and Dad. He enjoyed the flight; looking out the window to report on clouds going by and watching the ground approach at landing time. He loved the train ride in the Orlando airport. When we went to claim our luggage the “men” walked up to the conveyor belt to claim the bags and the woman stayed behind and waited on a nearby bench. Before long they came out of the crowd. Daddy was pulling the suitcases behind him and Peter was pushing his stroller in front of him. We left the airport and walked across the street to pickup the rental car. It was a minivan and Peter was just a little concerned about why we were driving someone else’s car.

We stayed at a beautiful Disney property called Saratoga Springs. A couple of long time supporter of the Peter Zucca fan club were kind enough to give us a beautiful place to stay. Thank you! The hotel is located in the Disney Market Place area and we were able to walk into the market place each day. The marketplace has many nice places to eat, shop, and play. There is a Lego store complete with playground and tables that have Lego’s on them. Children can build, climb and slide to their heart’s content. There is a Rainforest Café and we had dinner there one night. We were seated right in the middle of a lush spot between the monkeys and the elephants and next to a wildly running stream. During dinner a storm rolled in and the rain forest came alive. The wind was blowing and it started to thunder and lightening. The monkeys were swinging in the trees and the elephants started to trumpet. Peter yelled, “let’s get out of here”! It took a little while to convince him that it was just make believe.

Tuesday morning we decided to take Peter to the Magic Kingdom. We were so excited! When we arrived he was not as happy to be there as we thought he might be. After several hours of fear, crying, and asking us to take him home we left the park. He did enjoy 1 ride. It was the carousel. He rode it about 6 times and we were able to get some great pictures of all of us riding. Peter took a long nap and Dennis and I were stunned by his sadness. The next day we decided to walk into the market place for breakfast and to let Peter play at the Lego playground. He had a wonderful time playing there and seemed to be very happy. So we just thought that the flight and the time in the Magic Kingdom must have overwhelmed him. We wanted to spend Tuesday afternoon in EPOCT and have a nice lunch there. When we arrived back at our room he started to cry and begged us to take him to his real house, where his puppy lives. Then we realized what was wrong. He thought that we were staying in a hotel room because he was going to get scanned again. We were so broken hearted for him, and just a little surprised that we didn’t see that coming. The three of us in a hotel room with 1 day of fun under our belts to Peter this can only mean that the next few days will be spent (hungry, hurt, and under anesthesia) in a hospital and far from home. We tried to explain to him that there will not be any doctors or nurses, no ouchies or boo-boo’s and he seemed to understand. Then it was time for a long nap for Peter and some tears of disbelief for us. It is hard to believe that our sweet child is so wounded that he lives in fear of receiving medical care even in Disney World. We hope that time; understanding and future good health will erase all of this pain for him.

We ate lunch at a Japanese Hibachi restaurant in EPCOT. Peter enjoyed the show and even ate with chopsticks. There are lots of beautiful gardens at EPCOT and one of them has a train set running through it. Peter really enjoyed watching it and trying to drop pennies into the coal cars when it went under the bridge he was standing on. Dad got into the act and before long Team Zucca had successfully dropped a penny in the car. Peter was thrilled and clapped and shouted with delight. It was so nice to see him happy again and so I snapped lots of pictures. He also enjoyed a refreshment stand that is in the world showcase located between Mexico and China. It has an African theme and you can play the drums there. Peter found an old-fashioned pick-up truck next to the drum area and we let him climb in the cab. He loved it and began hamming it up for the camera. He fell asleep in the stroller and Dennis and I had a nice chance to walk around in peace and talk and enjoy the scenery. We stayed in the park for the fireworks. Daddy was interested in trying out the new camera to see if he could get nice shots of the fireworks. (You may remember that I dropped our old camera in water puddle a few months back while taking picture of my little man puddle stomping.)

We decided to start each day in the marketplace with breakfast and playtime at Lego. One warm morning after we had played for long time we bought a box of popcorn and rented a small boat. We headed out on the water in search of hungry ducks to feed. Peter took a turn steering the boat and blowing the horn. He decided that he did not want to waste any of his popcorn on ducks. He sat contently on the seat in his life vest and baseball cap filling his cheeks to overflowing. Then it was back to the room for a nap for Mama and Peter. Dennis took advantage of this naptime for a peaceful afternoon of solitude. When Peter woke from his nap we headed to the pool at our hotel. He had a blast there! The pool is beautiful and has a really nice area for young children. There are padded areas with fountains squirting in every direction and even a water slide for the very young. It was perfect for me and I enjoyed several trips down the slide. I finally stopped because the little children said that I was hogging it. People really should teach their children to be more polite!

When Dennis returned we rented a surrey style bicycle with a large basket on the front. Peter sat upfront clanging the bell while we peddled. We all enjoyed this and ended up renting the bicycle one more time during our stay. We also took a horse drawn carriage ride one evening around the grounds of our hotel. The Disney properties really are so beautiful and well maintained. The weather was so warm and the flowers, trees and bushes were months ahead of our plants at home in growth and blooms.

We decided not to go to the Animal Kingdom or MGM Studios. We felt that they would be too busy and too stressful for him. We went to Typhoon Lagoon Water Park instead. We really enjoy the slow pace of floating around the park in inner tubes. Peter had his own tube (it had a bottom on it so he couldn’t fall through) and insisted to us that we should not hold on to it or push him around because he is a big boy. We floated around the park several times and then we ventured into the tidal wave pool. Peter was wearing a life vest and we each had him by the hand. There was a loud boom and all of a sudden a 6-foot wave was headed your way. We lifted Peter up and jumped waves till we couldn’t jump any more. When he heard the boom go off he would scream, “Here comes the storm” and start laughing. He really enjoyed the water park and the swimming pool so we spent the rest of our time waterlogged! We would stop at McDonald’s for a fish sandwich and milk and by the time we got back to the hotel he would be sound asleep. Dennis and I got to have a really nice dinner al fresco on the deck at Fulton’s crab house. It was a warm evening and we were seated by the water. Our hotel was on the other side of the water and the food was great.

The weather was in the 80’s almost every day and Florida was a nice change of pace and scenery for all of us. But, there is no place like home. Nanny and Bop met us at the airport and we ordered a couple of pizzas for dinner. Peter cheered when we turned onto our street and couldn’t stop him self from laughing and cheering when he saw Ryan and Grant in our driveway.

My Aunt Dolly passed away within a few hours of returning home and we had doctor and therapy appointments within a few days. So it was back to business as usual within no time. Except for one really amazing and miraculous thing. Monday evening March 13th I fell asleep while praying for Peter’s foot and nerves to heal. His wiggling toes are always on my mind and I realized that I had such a burden on my heart to pray for that healing. On the morning of March 14th Peter was very cranky, he wanted to be carried and was crying. I sat on the couch to hold him and to find out what was wrong. His response floored me, “So much pain Mama, So much pain need medicine”. Where is your pain I asked. My foot hurts. It was his right foot, up in the arch area. I was so excited for him. I never thought I would cry tears of joy over my child being in pain but this is no ordinary child and this is no ordinary pain. I ran for the Tylenol and hugged him so tight. I told him that I am so happy for him and that God loves him so much. Gave him the Tylenol and called Dennis at work. I started to tell him about my prayers and that Peter had foot pain. He paused for a moment and said, “I woke up at 3:00 am and all I could think of was Peter’s foot and so I prayed for his healing too!

God is so good and he hears all of our prayers and he answers each one, even when we don’t like the answers. But on that morning he was answering with, yes, I hear you and I’m working on it. We feel privileged once again to see God at work in Peter’s life and in his healing. We thank you for your continued love, support and prayers.

Please continue to pray that God’s miracle of healing will soon be complete and that his entire body will be restored to full health and full growth potential. Please remember my Aunt Dolly’s family in your prayers, as loss of a loved one is never easy. There are so many children in need of a miracle. Please remember little Grace (link below) if her blood counts don’t recover soon she will be running out of treatment options for her cancer. Big Ryan (link below) has scans next week. He needs them to be CLEAN! Hazen is still receiving high dose chemo and has scans this week (www.caringbridge.org/visit/hazen). Please pray that they will be clean! Dylan is still living in RMH he came from Australia over 1 year ago to receive treatment that is not available there. He needs a health miracle and a fund raising miracle. His care is not covered by Australia's medical plan and the family pays cash. Please praise God for these new sensations in Peter’s foot and for the miracles of healing that his friend Nate has received. Thank you for visiting.

Wednesday, February 22, 2006 7:30 PM CST

Long before we started Peter’s caringbridge page we mailed update letters. We are in the process of a mailing now. The update letter follows. Thanks for your continued prayers and support. Dawn

February 20, 2006

Dear Family & Friends,

It has been more than a year since our last update letter. In that time Peter has completed his chemotherapy and radiation therapy. We have moved out of the Ronald McDonald House in NY and back into our home full-time. Peter has been going through home based nutritional therapy, speech therapy, educational therapy, and physical therapy. He started using a walker in June of 2005 and a few weeks later he took his first unassisted steps. Before long the walker was returned and the frequency of all therapies has decreased. We have been returning to New York’s Memorial Sloan-Kettering Cancer Center for monthly check-ups and quarterly scans.

Much to the astonishment of all of us Peter turned 3 years old on February 4, 2006. We celebrated this miraculous milestone in many different ways. We had family pictures taken, had a family birthday dinner and cake, shared cake with our extended family at church, and Peter’s favorite…a birthday party with 11 of his friends. There was a moon bounce, tractor rides, games, food, gifts, cake and a happy birthday serenade from the cutest bunch of children you’ve ever laid eyes on. Peter was thrilled and our joy was indescribable. We fought the urge to let our minds drift back to the sadness and fear of his first birthday celebration, but could not resist the urge to praise God over and over for his truly miraculous gift of Peter’s life. How privileged we are for this gift of time with our son!

Dennis, Peter and I traveled to NY for his quarterly scan appointment on February 14th, 2006. We spent 2 days there. Peter underwent a PET scan, MRI, and CT scan during our time there. Tuesday afternoon we learned that his PET scan showed no evidence of disease. We returned home late Wednesday night. Thursday morning I started an e-mail conversation with his oncologist and learned that his MRI and CT were clean as well. Then we got the most amazing e-mail ever. Peter is now 1 year out of his cancer treatment without evidence of any recurrence; as a result, we will no longer be seen on a monthly basis. We will have quarterly scans in May and August. When we get good results on the August scans he will start on an every 6 months scan basis. Peter is also being seen at A.I. Dupont Hospital for Children. Because he underwent radiation treatment at such a young age, the orthopedic department is following him to monitor possible growth related issues.

The oncologist at Sloan informed us that he would like to see Peter for several years to keep an eye on his orthopedic issues as well. We were stunned that he would put on paper Peter’s name and a plan for care years into the future. We are thrilled for Peter and grateful to everyone that has crossed his path and touched his life. We have been blessed with the support of extremely talented medical professionals, the support of a loving family, the support of our friends who have become an extended family to us, but the Glory belongs to God. He has led us down the necessary paths to secure healing for Peter and we are in awe of his love and power.

We were once again reminded of his faithfulness when the last e-mail from his oncologist came over the wires. I could not help myself I had to reply back to him with the Psalm that has been our strong hold and our hope for so long. I waited patiently for the Lord to help me, and He turned to me and heard my cry. He lifted me out of the pit of despair, out of the mud and the mire. He set my feet on solid ground and steadied me as I walked along. He has given me a new song to sing, a hymn of praise to our God. Many will see what he has done and be astounded. They will put their trust in the Lord. Psalm 40:1-3

We are astounded about the changes in Peter’s care path. The fog that we have been walking thru for so long is lifting. We will have more time to look around in the sunlight and see all the other things that need our attention. Our home, our marriage and quality family time have been placed on the back burner and have suffered for it. We will be taking a trip to Disney World next week to start focusing our attention on “us” as a couple and “us” as a family again.

Peter needs to remain cancer-free forever. Please remember him during scan times. His right foot and leg are not growing at the same rate as his left and his nerve injury has not completely resolved. These issues could put him at risk for painful surgical correction in the future. We believe that the same God that has walked this path with us will not desert us now. Our journey is not over yet and we would like to request your continued prayer and support. Thank you for all you have done to lighten our load as we continue to sing our song of praise.

Love,
Dawn, Dennis and Peter Zucca www.caringbridge.org/pa/peter

Thursday, February 16, 2006 12:04 AM CST

This will probably go down in the books as one of my most happy updates that I have ever posted on caringbridge. What follows are the email communications that I had with Peter’s doctor at Sloan this morning. Dennis and I read them over and over again to each other on the phone because we just cannot believe the content. Please join us in prayer and praise to God as he has been so good, kind, and faithful to Peter and our small family.

From: Scared Mom
Sent: Thursday, February 16, 2006 11:04 AM
To: Kind Doctor
Cc: Concerned Dad
Subject: Peter Zucca's scan results

Doctor
I was wondering if you have the results of Peter's MRI and CT?
Thanks!
Dawn

From: Kind Doctor
To: Scared Mom
Cc: Concerned Dad
Sent: Thursday, February 16, 2006 11:39 AM
Subject: RE: Peter Zucca's scan results

All the scans are clean. I've looked personally at all 3 and everything looks good! I will see you, G-d willing, in 3 months! Please keep up the good work with your beautiful little boy.
Sincerely,
Kind Doctor

From: Stunned Mom
Sent: Thursday, February 16, 2006 11:48 AM
To: Kind Doctor
Subject: Re: Peter Zucca's scan results

Doctor
Thank you! Do we still need to come monthly for check-ups?
We leave February 27th for 8 days in Orlando. We are very excited and very happy for this precious time with Peter.
Dawn

From: Kind Doctor
To: Stunned Mom
Sent: Thursday, February 16, 2006 11:49 AM
Subject: RE: Peter Zucca's scan results

No more monthly check-ups! Have a great time in Orlando. Say hi to Peter and tell him to take lots of pictures for us to enjoy when we see him again in 3 months

From: Grateful Mom
Sent: Thursday, February 16, 2006 11:58 AM
To: Kind Doctor
Cc: Thrilled Dad
Subject: Re: Peter Zucca's scan results

Doctor
I'm sorry that I keep bothering you but I’m so stunned and happy that we don’t come back for 3 months. So is our next visit a scan visit? Do I need to make those arrangements and when.
Thanks,
Dawn

From: Kind Doctor
To: Grateful Mom

Not a problem - I just changed the lay of the land for you.

We consider this visit his one-year post-treatment visit. His next 2 visits (15 months and 18 months, respectively) are scan visits. (You can call my office in late March or early April to schedule the May visit and scans.) Following that, we will see him but not do scans at 21 months, and then repeat scans at 24 months. After that, visits to every 6 months and scans continue every 6 months at 30 and 36 months off-treatment. Given his growth and orthopedic issues, I will probably want to continue every 6 month visits for several years (yes, several years - I know you never dreamt you'd see those words on paper!). Along those lines, please ask the group at Dupont to send (fax or mail) me copies of their evaluation of Peter.

Have a wonderful trip.

Sincerely,
Most humble and Kind Doctor

Please continue to keep Peter in your prayers. He will need to remain cancer-free and he will be faced with growth and orthopedic issues as he does grows. Thank you, most humbled and grateful family

Tuesday, February 14, 2006 8:42 PM CST

Peter's PET scan was NED (No evidence of disease)! We have a Cat Scan and MRI tomorrow. Dawn will provide further details.

Dennis

It happened…the miracle boy turned 3! It was very sweet to tell him…this is it buddy, this is your birthday and now you are a 3 year old. I’m not sure who among us is the happiest about it. The enormity of this gift is at times over whelming to me. We ate a quick breakfast and headed out for our photo session. I hope you can tell by the new pictures that our celebration of Peter’s 3rd birthday and of his life was filled with many blessings and lots of joy. The family photo was taken at Celebrity Kids in North Wales, PA. On February 4th the day he turned 3. Our experience there was great. They have an entire room of props that any little boy or girl would love to play on and with. We had about 100 shots to choose from. The family photo was easy to pick out and we were very happy with it. The proofs of Peter took us forever. We had difficulty narrowing the group down to about twenty-five or thirty before finally deciding on 4 poses. We really were stunned to have so many great shots of him to choose from. We will try to add some of those later but first we really wanted to share with you the sweetness and joy of his party photos.

When we left the photo shoot Peter was hungry for a McDonalds fish sandwich. Our response, “your wish is our command sweet birthday boy”. After he ate his lunch the very best thing happened. He fell asleep and Mama and Dad were able to sit down at a “real “ restaurant for lunch. There is an Iron Hill Restaurant &Brewery in the same shopping center as McDonalds and Celebrity kids. The neat thing about it is this; Mike Edelson owns Iron Hill. Mike’s wife was one of Peter’s oncologist’s while we were treating at AI Dupont in Delaware. Our lunch was very nice and we had quiet time to gaze upon our sleeping miracle boy and to reflect on the hard journey and the many blessings. In the hallway I walked past a large poster that advertises their signature dessert. Proceeds from every sale go to pediatric cancer research. Thank you, Mike, for your donation to such a worthy cause and thank you, Maureen, for your donation to Peter’s survival. We have learned many things along the way and one of them is that this big world is actually very small and that we are all intertwined in this circle of life. If you ever go to an Iron Hill please save room for dessert.

Aunt Nanny had a special birthday dinner for Peter at her house. There was a balloon tied to his chair and a cake with 3 big candles. Peter loves having happy birthday sung to him and he loves blowing out candles (which we did over and over). There were small gifts but not too many because this was not his big guy party. He got to play with Ryan and Grant and that is just about the best gift he could ever hope for. When we got home our mailbox was filled with cards and gifts and our answering machine was filled with birthday wishes and people singing happy birthday. The look on his face was priceless as he listened to all the messages. We played them over and over again. Then we headed up to bed for evening prayers and bedtime stories. Peter received some new books from the Goldstein’s and we read one of them before going to sleep. It is such a pleasure to have a 3 year old in our house and we know that it is a very special gift that he remains part of our life.

Sunday morning was filled with excitement because we were heading off to church to see his Sunday school friends and to eat more cake! There was a special prayer time during our worship service where different people or families from the congregation were lifted and our family was honored to be part of the service and special prayer time. After morning worship we went downstairs for a time of fellowship, celebration and birthday cake. Daddy left church and drove to NJ to pickup Pop-pop Zucca. My Sister’s family, my parents and Pop-pop joined us for a small Super Bowl party.

Monday morning Peter woke up bright and early. We told him this is the day of your birthday party with all of your friends. He was so excited. Mom picked out a special shirt with all the colors on the John Deere tractor. We showed him a party banner that we had printed for him. It reads, “Happy Birthday Peter” in large black letters and has a John Deere tractor on each side. He told Dennis that he wanted to take a ride on one of those big tractors. We could hardly contain ourselves because our neighbor Harold (a real live farmer) had agreed to come to Peter’s party and give tractor rides to all the children. You may remember Harold from last fall, he gave Peter a ride in his combine. We had not told Peter about the upcoming tractor ride and we were so pleased that another one of his small wished would be coming true. Monday mornings my sister baby-sits at Covenant Presbyterian Church in Vernfield. For as long as Peter’s health has allowed he has gone there with her to play with the children. Aunt Nanny came to the house and picked up Peter. They stopped at the deli to see his friends Ron and Kathy and Kathy and Ron as he calls them. He picked out his favorite morning treat, a soft pretzel and they left for the church. Peter was unaware that Daddy and I were already there setting up the moon bounce. When he came through the door the look on his face was so sweet and joyful. The great thing about it was that all of his happiness was because he saw us. He ran into our arms and hugged and kissed us just because he loves us (not because he is extremely over indulged and that I spend every cent my poor hard working husband makes on him). It’s true I do get carried away trying to give him the joys of a lifetime in whatever time we get with him (thank you, Dennis for understanding). When he saw the moon bounce things really got fun. The children that were arriving couldn’t wait to get inside. We left Nanny and her helper Abigail with about a dozen happy, bouncing children and headed home for the food, decoration, and Pop-pop. My good cousin Trish manned the kitchen for us. She prepared a spectacular three-year-old feast, chicken nuggets, applesauce, mac and cheese, and tator-tots. Dennis went to work filling about fifty balloons with helium. The children ran in and out of the kitchen grabbing them by the strings and taking them to the moon bounce and the party room. Farmer Harold showed up as promised with his big tractor. The children, who had removed their shoes to play in the moon bounce, now ran in a frenzy to find their moms and their missing shoes. It was much too cold to run outside without them or I think the tractor cab may have been filled with barefoot children. Peter and Daddy took the first ride and Abigail was on hand snapping photos for us. One by one the other families climbed up the big steps and took their places inside the cab. We returned to the church building for more bouncing and lunch. John Deere plates, napkins, tablecloths, sippy cups, and balloons decorated the room. Peter loved being with his friends and a very special little girl named Cedar said the grace for us. Her voice was a little soft in the beginning and I missed part of her prayer but, I could hear her ask God to bless the food to his service and to give Peter a really good party. The prayer was so precious and so dear to me. I’m sure that God’s heart was blessed, as we were, by her sweetness. And yes, I do believe that he answered her and all of us by giving Peter a good party. The tractor-topped cake was brought out of the kitchen and Peter surrounded by his friends was serenaded by happy birthday to you. We were busy filming the moment in our minds eye when I realized that we forgot to film it with the video camera. The children didn’t mind singing again and Peter sure was glad to blow out the candles one more time. We played some games like duck-duck-goose and the farmer in the dell, and we ran the always-popular Mama race. If you’ve never run this race before it goes something like this, you line up across from your Mama, running into her arms for a kiss, then run back to where you started. The children enjoyed the cake, Peter opened his gifts and the children prepared to leave. Peter hugged the children, thanked them for coming to his party, and handed out little tractor boxes filled with John Deere treats. We were blessed to have Pop-pop, Green, and Bop (my parents) present to share the joy.

We went to work cleaning up the church and loading up our cars. Peter was exhausted when we got home so we went upstairs for a nap. I ask him if he had a happy day and there was no response. When I looked over at him his eyes were shut, his face had a smile on it, and he was nodding his head yes. That evening My Sister’s family joined us for dinner, more gifts and more cake. We set up the moon bounce in the basement and Peter, Ryan, and Grant spent the evening bouncing into exhaustion.

February 9th, Nancy and I took Peter to AI Dupont for a gait labarotory evaluation and an orthopedic evaluation. The gait lab was a little overwhelming for Peter. He had to do lots of walking and step onto different sensors on the floor. He was not able to follow all the directions and the different types of measuring instruments that they used frightened him. We will receive a call to let us know the outcome of all the tests once they have enough time to analysis them. The orthopedic evaluation went very well. Peter liked Dr. Miller and did what ever was asked of him (I would like to know his secret). His right leg is shorter than his left leg by 2.2cm. He has ordered a 1 cm lift to be place onto his right shoe. His brace takes up part of the difference and you do not make it exactly even because of his inability to raise his toes. That could cause tripping. There is only 1 growth plate that is not completely normal. There is thinning of the growth plate on his right pelvis. There is also mild hip dysplasia, which means that the ball and socket are not forming exactly the way they should. There is a chance that he will need orthopedic surgery in the future to lengthen his right leg and to reposition the ball on the top of his femur bone so that it sits in the socket in a better position. But, for right now, short of being told that he is completely normal and has been unharmed by his radiation, we could not have ask for a better report. We will return again in 5 months for further evaluation and comparison of his growth plates and leg and foot discrepancy.

We leave for NY on Feb 14th. Peter has scans on the 14th and 15th. Please pray for safe travel, easy fasting, his ability to tolerate placement of lines and drinking of contrast. But, most importantly, please pray that all scans are NED no evidence of disease. Pray that Peter’s cancer never, ever returns. Thank you again for your continued love, support and prayers. Please sign our guest book I would love to hear from you.

Saturday, February 11, 2006 10:09 AM CST

Peter's PET scan was NED (No evidence of disease). We have a Cat Scan and MRI tomorrow. Dawn will provide further details.

Dennis

It happened…the miracle boy turned 3! It was very sweet to tell him…this is it buddy, this is your birthday and now you are a 3 year old. I’m not sure who among us is the happiest about it. The enormity of this gift is at times over whelming to me. We ate a quick breakfast and headed out for our photo session. I hope you can tell by the new pictures that our celebration of Peter’s 3rd birthday and of his life was filled with many blessings and lots of joy. The family photo was taken at Celebrity Kids in North Wales, PA. On February 4th the day he turned 3. Our experience there was great. They have an entire room of props that any little boy or girl would love to play on and with. We had about 100 shots to choose from. The family photo was easy to pick out and we were very happy with it. The proofs of Peter took us forever. We had difficulty narrowing the group down to about twenty-five or thirty before finally deciding on 4 poses. We really were stunned to have so many great shots of him to choose from. We will try to add some of those later but first we really wanted to share with you the sweetness and joy of his party photos.

When we left the photo shoot Peter was hungry for a McDonalds fish sandwich. Our response, “your wish is our command sweet birthday boy”. After he ate his lunch the very best thing happened. He fell asleep and Mama and Dad were able to sit down at a “real “ restaurant for lunch. There is an Iron Hill Restaurant &Brewery in the same shopping center as McDonalds and Celebrity kids. The neat thing about it is this; Mike Edelson owns Iron Hill. Mike’s wife was one of Peter’s oncologist’s while we were treating at AI Dupont in Delaware. Our lunch was very nice and we had quiet time to gaze upon our sleeping miracle boy and to reflect on the hard journey and the many blessings. In the hallway I walked past a large poster that advertises their signature dessert. Proceeds from every sale go to pediatric cancer research. Thank you, Mike, for your donation to such a worthy cause and thank you, Maureen, for your donation to Peter’s survival. We have learned many things along the way and one of them is that this big world is actually very small and that we are all intertwined in this circle of life. If you ever go to an Iron Hill please save room for dessert.

Aunt Nanny had a special birthday dinner for Peter at her house. There was a balloon tied to his chair and a cake with 3 big candles. Peter loves having happy birthday sung to him and he loves blowing out candles (which we did over and over). There were small gifts but not too many because this was not his big guy party. He got to play with Ryan and Grant and that is just about the best gift he could ever hope for. When we got home our mailbox was filled with cards and gifts and our answering machine was filled with birthday wishes and people singing happy birthday. The look on his face was priceless as he listened to all the messages. We played them over and over again. Then we headed up to bed for evening prayers and bedtime stories. Peter received some new books from the Goldstein’s and we read one of them before going to sleep. It is such a pleasure to have a 3 year old in our house and we know that it is a very special gift that he remains part of our life.

Sunday morning was filled with excitement because we were heading off to church to see his Sunday school friends and to eat more cake! There was a special prayer time during our worship service where different people or families from the congregation were lifted and our family was honored to be part of the service and special prayer time. After morning worship we went downstairs for a time of fellowship, celebration and birthday cake. Daddy left church and drove to NJ to pickup Pop-pop Zucca. My Sister’s family, my parents and Pop-pop joined us for a small Super Bowl party.

Monday morning Peter woke up bright and early. We told him this is the day of your birthday party with all of your friends. He was so excited. Mom picked out a special shirt with all the colors on the John Deere tractor. We showed him a party banner that we had printed for him. It reads, “Happy Birthday Peter” in large black letters and has a John Deere tractor on each side. He told Dennis that he wanted to take a ride on one of those big tractors. We could hardly contain ourselves because our neighbor Harold (a real live farmer) had agreed to come to Peter’s party and give tractor rides to all the children. You may remember Harold from last fall, he gave Peter a ride in his combine. We had not told Peter about the upcoming tractor ride and we were so pleased that another one of his small wished would be coming true. Monday mornings my sister baby-sits at Covenant Presbyterian Church in Vernfield. For as long as Peter’s health has allowed he has gone there with her to play with the children. Aunt Nanny came to the house and picked up Peter. They stopped at the deli to see his friends Ron and Kathy and Kathy and Ron as he calls them. He picked out his favorite morning treat, a soft pretzel and they left for the church. Peter was unaware that Daddy and I were already there setting up the moon bounce. When he came through the door the look on his face was so sweet and joyful. The great thing about it was that all of his happiness was because he saw us. He ran into our arms and hugged and kissed us just because he loves us (not because he is extremely over indulged and that I spend every cent my poor hard working husband makes on him). It’s true I do get carried away trying to give him the joys of a lifetime in whatever time we get with him (thank you, Dennis for understanding). When he saw the moon bounce things really got fun. The children that were arriving couldn’t wait to get inside. We left Nanny and her helper Abigail with about a dozen happy, bouncing children and headed home for the food, decoration, and Pop-pop. My good cousin Trish manned the kitchen for us. She prepared a spectacular three-year-old feast, chicken nuggets, applesauce, mac and cheese, and tator-tots. Dennis went to work filling about fifty balloons with helium. The children ran in and out of the kitchen grabbing them by the strings and taking them to the moon bounce and the party room. Farmer Harold showed up as promised with his big tractor. The children, who had removed their shoes to play in the moon bounce, now ran in a frenzy to find their moms and their missing shoes. It was much too cold to run outside without them or I think the tractor cab may have been filled with barefoot children. Peter and Daddy took the first ride and Abigail was on hand snapping photos for us. One by one the other families climbed up the big steps and took their places inside the cab. We returned to the church building for more bouncing and lunch. John Deere plates, napkins, tablecloths, sippy cups, and balloons decorated the room. Peter loved being with his friends and a very special little girl named Cedar said the grace for us. Her voice was a little soft in the beginning and I missed part of her prayer but, I could hear her ask God to bless the food to his service and to give Peter a really good party. The prayer was so precious and so dear to me. I’m sure that God’s heart was blessed, as we were, by her sweetness. And yes, I do believe that he answered her and all of us by giving Peter a good party. The tractor-topped cake was brought out of the kitchen and Peter surrounded by his friends was serenaded by happy birthday to you. We were busy filming the moment in our minds eye when I realized that we forgot to film it with the video camera. The children didn’t mind singing again and Peter sure was glad to blow out the candles one more time. We played some games like duck-duck-goose and the farmer in the dell, and we ran the always-popular Mama race. If you’ve never run this race before it goes something like this, you line up across from your Mama, running into her arms for a kiss, then run back to where you started. The children enjoyed the cake, Peter opened his gifts and the children prepared to leave. Peter hugged the children, thanked them for coming to his party, and handed out little tractor boxes filled with John Deere treats. We were blessed to have Pop-pop, Green, and Bop (my parents) present to share the joy.

We went to work cleaning up the church and loading up our cars. Peter was exhausted when we got home so we went upstairs for a nap. I ask him if he had a happy day and there was no response. When I looked over at him his eyes were shut, his face had a smile on it, and he was nodding his head yes. That evening My Sister’s family joined us for dinner, more gifts and more cake. We set up the moon bounce in the basement and Peter, Ryan, and Grant spent the evening bouncing into exhaustion.

February 9th, Nancy and I took Peter to AI Dupont for a gait labarotory evaluation and an orthopedic evaluation. The gait lab was a little overwhelming for Peter. He had to do lots of walking and step onto different sensors on the floor. He was not able to follow all the directions and the different types of measuring instruments that they used frightened him. We will receive a call to let us know the outcome of all the tests once they have enough time to analysis them. The orthopedic evaluation went very well. Peter liked Dr. Miller and did what ever was asked of him (I would like to know his secret). His right leg is shorter than his left leg by 2.2cm. He has ordered a 1 cm lift to be place onto his right shoe. His brace takes up part of the difference and you do not make it exactly even because of his inability to raise his toes. That could cause tripping. There is only 1 growth plate that is not completely normal. There is thinning of the growth plate on his right pelvis. There is also mild hip dysplasia, which means that the ball and socket are not forming exactly the way they should. There is a chance that he will need orthopedic surgery in the future to lengthen his right leg and to reposition the ball on the top of his femur bone so that it sits in the socket in a better position. But, for right now, short of being told that he is completely normal and has been unharmed by his radiation, we could not have ask for a better report. We will return again in 5 months for further evaluation and comparison of his growth plates and leg and foot discrepancy.

We leave for NY on Feb 14th. Peter has scans on the 14th and 15th. Please pray for safe travel, easy fasting, his ability to tolerate placement of lines and drinking of contrast. But, most importantly, please pray that all scans are NED no evidence of disease. Pray that Peter’s cancer never, ever returns. Thank you again for your continued love, support and prayers. Please sign our guest book I would love to hear from you.

Thursday, January 26, 2006 6:51 PM CST

Peter will turn 3 on February 4th, and we are joyfully preparing for this one! It is our tradition to have his picture taken on the day of his birthday so, Saturday morning we have an appointment for a new family photo and some special individual photos of the birthday boy! When we are finished we will stop by Costco to pick-up a helium tank and 2 cakes. The cakes we will share with our church family on Sunday morning.

I remember preparing for his 1st birthday party. Somewhere between ordering the cake and balloons we chose the funeral home and were in the process of buying burial plots (It was torture). The day before he turned 2 he underwent his final radiation therapy treatment (his friend Evan passed way that day). We were exhausted from taking care of him, over whelmed by all that we had gone through, and saddened by the loss of Evan. We waited until it was safe for Peter to get wet and hosted a very large swim party for him. Many of you reading this joined us to celebrate. Your presence and support have meant everything to us and have helped us through some very hard times. We have made monthly trips to NY for check-ups and have fearfully endured “scan week” every three months since then.

This year we rented a moon bounce and I have spent an obscene amount of money on John Deere Tractor party supplies. Peter will be having a party with his friends on Feb 6th at Covanent Presbyterian Church in Vernfield. This is the group of children that he has been playing with on Monday mornings for his whole life (health permitting). When the Moms are done with their morning Bible study, our party will begin. Peter is happy to recite the things that he would like for his party, boons, cake, canols, games, moon bounce, presents, and children. I think we will have about 50 balloons, 1 cake, 3 candles, 1 moon bounce (a small one for children under the age of five) I shutter to think how many gifts he’ll come home with, and 12 children. Today Rachel’s Mommy called to say that they would be at the party and when I told Peter she was coming he threw his hands over his head and cheered. So far, I’d have to say that I like this year the best!

On February 9th we will be traveling back to Dupont Hospital for an orthopedic evaluation and some testing in their gait laboratory. Because Peter was so young when he underwent his radiation treatment he will need to have regular check-up to assess any bone damage that he may have. These check-ups start when you are 1 year from your last radiation treatment. The gait lab will be evaluating the way that he walks. He can really get around but he has an unusual way of doing it. He has learned to raise his right hip up, while moving his upper body from side-to-side. Trust me he moves much faster than Dennis and I can but, it’s not the best body mechanics and their evaluation will help to pin point what can be done to improve his abilities. He will most likely benefit from more physical therapy and strengthening.

February 14th & 15th we will return to Sloan-Kettering for scans. These are the hardest days for all of us. Peter has to endure so much from a physical standpoint and we have to endure so much from an emotional standpoint. We will travel into the city about 4:30 am the morning of the 14th. This is the first time that we are going the morning of the scans instead of the day before. Peter is now very aware of all aspects of his care. He is very stressed by being in the city itself so we want to see if scan time is easier on him if we arrive the morning of the scans instead. It will definitely be harder for us.

Peter continues to need your prayers. His toes do not wiggle. This is because the nerve has not healed. This type of a nerve injury would not be as significant in an adult. It takes the stimulation of the nerves to move the foot and toes, then the muscles can become strong, this strengthening pulls on the bones and helps them grow. No wiggling toes, no muscle strength, no bone growth. His left foot is a size 9 and the right foot is a 7 ½. There is a difference in the size of the calf muscles and we think we are now seeing a difference in the length of his legs. Please pray that:

His cancer never returns
His nerve will continue to heal and regenerate
His toes will wiggle and that his ankle will move
That he will someday throw his brace away
That the hands of God have protected his growth plates
His right foot will continue to grow and will match the left
That we will have safe travel to and from his appointments
That all appointments will be uneventful and that he will pass all future tests with flying colors!

Please pray for these children:
Nate had scans today and tomorrow please pray for NED
Hazen had high dose chemo this week pray that he can tolerate his treatment without nausea and vomiting and that it is destroying his cancer.
Ryan is fighting a bad cold without an immune system; he is post transplant.
Grace’s last scans showed improvement and she is now able to go back into treatment.
Christian is a 9-month-old boy who is on the transplant list for 3 organs.
Please pray for Evan’s family as the anniversary of his passing approaches.

Thank you for your continued prayers and support of Peter and our family. Please sign our guest book when you visit it means a lot to me.

Tuesday, January 10, 2006 8:59 PM CST

It seems like forever since I’ve updated, since that time we have been very busy enjoying our little man. Friday December 30th we took a train ride into Philadelphia. We had lunch at the farmer’s market and came back home. We decided not to tell Peter that we were planning the train ride because he is at that age where if the planets don’t align and it doesn’t happen we have to play twenty question with a very sad little man. We pulled into the train station just in time to get out of the car and run onto the train. Peter was thrilled just to see it parked on the tracks and he had no idea that he would soon be riding it. Dennis ran into the station for tickets and Peter and I jumped on board. He was so excited he couldn't stay still. He was standing on the seat with his sweet face pressed on the window cheering for Dennis, “Daddy hurry, Daddy come on the train with me”! Dennis jumped on board, the train took off, and our ride was just priceless. We got to see the ride into the terminal thru Peter’s eyes and our joy was over whelming. Who knew that just a few dollars and a fresh set of eyes could turn those familiar miles of track into something we’d never seen before? We remain so incredibly in love with Peter and so blessed by this precious time with him. There are no words to explain our joy or our gratitude to God and all of the many people who have made our continued time together possible.

We had a New Year’s Eve party! Peter spent much of the late afternoon and early evening of New Year’s Eve playing in the tub with his new bath toys. We got him out and dried off just in time for the ball to drop in the Zucca house (about 8:30 pm). Dennis, Peter, Bailey Jayne and I met in front of the Christmas tree for some family photos. We were wearing party hats and blowing on noisemakers (Peter loves the noise makers the dog did not). She was a good sport about it all and we allowed her to share some of our party food. We were in bed by about 9:00 basking in the awareness that our little guy was about to ring in his first ever cancer-free new year.

We started out New Year’s Day at church and took a moment to share with the congregation our excitement about Peter’s accomplishment and to thank everyone present for all the love, support and prayers that they have given us. Later that afternoon we went to my Sister’s house for an Italian buffet and a bingo party. That has been a New Year tradition at their house for many years. Last year Peter and I could not attend because his counts were low and everyone seemed to have a cold or the flu. This year was a very different story. Peter was thrilled to be part of the crowd and had a great time playing with all the other children. With Mama’s help he won a few Bingo prizes and left with a new coloring book and crayons. The rest of that week we were busy with speech, physical and educational therapy. He had a check-up with the pediatrician last Friday for a ear re-check. There was no sign of his previous ear infection and I hope that he will be free of them for a while.

Yesterday we were back at Sloan-Kettering for a check-up. Peter had to have his finger stick done twice because they couldn't get enough blood out of the first one. He was not very happy about it. His blood work, chest x-ray and physical exam were all great. We now have the dates for his next scans. February 14th he will have a CT and MRI and on the 15th he will have a PET.

My Mom made blankets for Hazen Kennedy (www.caringbridge.org/visit/hazen) and Dylan Hartung (www.caringbridge.org/me/dylanhartung). We were happy to deliver them to the boys and to spend some time with both of their families. This is a big week for the Kennedy’s. Hazen had bone marrow aspirations and an MRI on Monday and he will have an MIBG scan tomorrow. Dylan was in clinic for another round of chemo. Our friend little grace (see link below) has her MIBG scan tomorrow. Big Ryan (see link below) had his PET scan last week and then started another round of high dose chemo. Please keep all of these families in your prayers. I also met a new Mom on Monday; her little boy is 1 month younger than Peter. He has a brain tumor and a very poor prognosis. His name is Zouhair. Please pray for his miracle and for his Mother’s broken heart.

When we left Sloan on Monday we stopped by the Ronald McDonald House to say hello to old friends there. We made a stop at Hands-on (Peter’s music studio) and Sugar loaf café (a favorite place to eat lunch). We stopped to see the Bayard’s but they were not at home (sorry we missed you, Sheila). We drove to Mid-town and stopped for lunch at Tony’s Di Napoli. They are kind enough to feed the entire RMH every third Wednesday of the month. The food was great and the gesture was always appreciated so we patronize them when ever possible. After lunch we walked to the Toys R Us in Times Square. If you have never been there it is quite a place. The 110,000 square foot store is 3 stories’s high and houses a full size Ferris wheel. Peter and I rode in the fire truck and had our picture taken right before the ride started. He was very excited and was waving wildly to all the people (on every floor) who were shopping there. When we exited the ride we took the elevator to the 2nd floor in search of a Jack-in-the-box. We found one but it was plastic and just didn’t remind me of the Jack from my childhood so we left the store empty handed. We did have the good fortune of finding a super deluxe Thomas the Tank engine display. Peter played there for about an hour with nine other children. He had a ball with the trains and did a really impressive job of sharing his train cars.

Dennis had a meeting in the city so Peter and I stayed over night with him. This morning while Daddy was at work we headed back to our old stomping grounds to play. So, I ask Peter if he wanted to go to Central Park Zoo or St Catherine’s Park Play ground. He said, “I really like to play at St Catherine’s”. It was then that I realized; I think Peter is the only 2 year old from Vernfield PA that actually knows where and what these two parks are and has a preference about which one he wants to go to. We played on the swing set, which had a very nice view overlooking a large digger that was at work across the street (it’s a good thing). Peter left the swing area and headed for the jungle gym and slides. He did a really good job climbing the stairs and walking up and down the ramps that led to the straight slide. Before long some big boys came to play on the curvy slide and it was time to join the ladder-climbing crowd. The ladder was a little more of a challenge for him but, he was determined to fit in with the guys and he held his own.

Tomorrow we return to our at home physical therapy. Peter will be turning 3 on February 4th and he will no longer qualify for the home-based care that he has been receiving. He will qualify for PT from a different source. The Gait Laboratory and the Orthopedists at AI duPont will evaluate him in February. They will be accessing the possible bone problems that are associated with radiating such a young body. The Gait lab will be addressing his limp and leg weakness.

I will be adding new pictures soon. I need to have them scanned into the computer for me. I don’t know if you remember the post where Peter got the frog boots, but we went outside to stomp in some puddles between Christmas and New Years and some irresponsible Mother dropped the digital camera in a puddle. I did manage to get one more photo out of it before it went kaput.

Please continue to keep Peter and his complete miracle of healing in your prayers. I would especially like to see his nerve heal so his foot and toes could move. Thanks for your continued support and please sign the guest book.

Wednesday, December 28, 2005 11:21 AM CST

Well, Peter has certainly been enjoying the Christmas season. Last Wednesday we had breakfast with Great-Uncle Russell and Great-Aunt Dorothy. The great part of the meal for Peter was when Uncle Russell presented him with a Hess fire truck. It has all the bells, whistles, lights, and sirens and even has a rescue vehicle inside that also lights-up. Later that same day, Great Uncle Welly stopped by the house with a CAT dump truck that drives forward and backward. It came complete with back-up alarm and can dump its load and drive away. I got a box of pasta out of the cupboard and we filled it up. Peter pushed the buttons and sent it across the floor dumping pasta everywhere. Bailey Jayne was very happy about the whole situation and ran behind the truck grabbing mouths full of pasta. Between the sounds of the fire truck, dump truck, the dog crunching and Peter yelling at her not to eat his cargo the house was a zoo! It was every little boys dream come true.

Thursday we went to Sloan-Kettering for a check-up. The transportation strike was still in effect and I was a little nervous about how our trip would turn out. Trish, Peter and I left the house at 7:00am. We had a letter with us from Sloan informing the police that we needed to enter the city for medical reasons (during the strike only cars with 4 or more passengers were allowed to enter). Traffic volume was very light for the entire trip. When we got to the Lincoln tunnel the entrance was blocked by police vehicles and we had to stop for them to count our passengers. I told them that we had to enter the city for Peter’s medical visit and we were waved on. It was a very strange feeling being the only car entering or exiting the tunnel. We arrived at the hospital in record time 2 1/2 hours from driveway to the 9th floor check-in area. Peter had a finger stick done for his blood tests and the results were excellent! All of his counts are great. His physical exam was also good with the exception of another ear infection. When the doctor said that they needed to get his weight he ran over and got on the scale, he waited for the beep and jumped off. I looked up and the scale read 14.1 kilos (31 pounds). Yeaaaaaaaaaa! He finally broke the 30-pound mark. He is now in the 50th percentile for his age. We decided to pass on the chicken pox vaccine until our January visit (we didn’t want him to feel bad for Christmas). We headed down to the second floor for a chest x-ray. Then I explained to Peter that we had a few more things to do before we left the hospital, one was to get his flu vaccine and the other one was to go back up stairs because Santa Claus had stopped by the playroom to bring gifts for some very special children and Peter was one of them. Peter said he would get his ouchy first and then play. He had a wonderful time opening gifts and playing with the children. We had a pizza lunch and ate some of the most beautiful cupcakes that you ever saw. The parking garage was practically empty because of the strike and so our car was waiting for us near the door. As is customary after a checkup Peter was exhausted and he took a long nap on the ride home.

When we hit Harleysville I stopped at the pharmacy for his antibiotics. We dropped Trish off at our house for her car and then proceed to his friend Eli’s house. Eli had to spend a few days in the hospital himself because of a complication following a vaccination. Peter was still asleep so when spent a few minutes with his Mommy, left him a get-well gift and went home. When we arrived there was a gift waiting for Peter. The Jagiela Family had stopped by while we were out and left a new tractor on our porch. Peter was thrilled! He unwrapped the tractor and pushed it all over the house while making his very best engine noises. I think we will need to put an addition on our house by the time Christmas is over. Friday night the Freed family gathered at our home for our Christmas celebration and you guessed it…more toys! Peter slept with his new Lego crane. Saturday we called AI duPont to see if there was a child in Peter’s old room. There is a tradition at AI, if you are admitted at Christmas time you return each year with a gift for the child in your room. Even though Peter was not supposed to live to see his second Christmas we were very touched by the parade of children that brought gifts to Peter and shared their stories with us. We made a promise to God that for as long as Peter was alive we would return each year to his room. We were told that there was a 2-month-old girl in his room so we left for Delaware. The child in Peter’s room had been discharged but there happened to be a 2-month-old girl on the floor so we gave the gift to her. Praise God there were only two children on the oncology floor on Christmas Eve Day. We stopped at the Hospital chapel for a prayer of thanks and made it home in time for Christmas Eve Services at our church. My parents were able to join us and Peter was very excited about that. When we went home we emptied all of Peter’s toys out of the walk-in fireplace so that Santa would not get hurt coming down the chimney. We read Peter The Night before Christmas and then we snuggled up together on the floor infront of the Christmas tree. We decided to sleep there and try to get glimpse of Santa leaving his gifts. We must have slept very soundly because the tree was full in the morning and none of us ever saw him come or go! Peter got everything he had put on his list, train tracks, DBD’s (his version of the DVD) and candy. Dennis and I had the best gift of all, the little baby Jesus asleep on the hay and the little Zucca baby asleep under the tree.

We added some more Angels to Peter’s tree. Javier, Maggie and Liam. In the midst of our joy, our celebration, and our miracle, we are ever mindful of those whose children have joined the host of Angels in Heaven. Our prayers for all of those families never cease. Our hearts are broken for you; we cannot imagine a greater loss.

Monday we took Peter to the shoe store. His new brace is in and it does not fit into his old sneakers. We were able to get him snow boots and sneakers. He has been asking for a pair of rain boots for a very long time and I have been unable to find a pair that his brace fits into. Well we still can’t find a pair but there was big puddle outside the store and he really wanted to stomp in it. So we bought a very nice pair of green boots that look like a frog and with an extra pair of socks and some Coban tape I think we can give him enough support to let him do some puddle stomping. We let him wear the frog out into the parking lot. I held his hands so he wouldn’t fall and we let him stomp away. Priceless!

Last night the Zucca family gathered at Aunt Sandy’s house and guess what…. more toys! Peter had a wonderful time playing with all the children. We brought Pop-pop home with us and today he and Dennis are out in the Lancaster area seeing the Miracle of Christmas show at the Sights and Sounds theatre. If you did not receive our Christmas letter it is because I accidentally deleted it out of the computer and was not able to rewrite it in time for the Holiday mail. I will now look for the time to write a New Year letter instead.

We hope that your Christmas was wonderful and the New Year is filled with many Blessings. Please continue to keep Peter in your prayers. His journey is far from over. Please pray that
His cancer never returns
His nerve will continue to heal and regenerate
His toes will wiggle and that his ankle will move
That he will someday throw his brace away
That the hand of God has protected his growth plates
His right foot will continue to grow and will match the left
That we will have safe travel to and from his appointments
That all appointments will be uneventful and that he will pass all future tests with flying colors!

Thank you for your continued prayers and support of Peter and our family. Please sign our guest book when you visit it means a lot to me.

Thursday, December 15, 2005 8:03 PM CST

The Picture People took the picture of Peter on the train on December 3rd, 2005. You can see by the look on his face that he was very excited he was sitting on that train, but what you can’t see is the incredible pride that Dennis and I felt when they brought that train into the room and Peter walked over to it, swung his leg over the top and climbed onto it. It was an over whelming moment for us and I’m in tears just thinking about it now. We had our first real snow that night. I awoke at about 3:30 am on Sunday morning. I heard Dennis down stairs letting the dog out and back in. Neither of them came upstairs so I got up. When I saw the snow I was so excited about playing in it with Peter. I went downstairs and Dennis said, “Did you see the snow? I’m so excited about seeing Peter’s face and playing in it with him that I can’t sleep”.

By the time we finished with church and Sunday school, Peter needed a nap. It was dark outside when we were finally dressed in our snow play clothing. Dennis took Peter to the top of the small hill in our yard (at the back of our property by the corn field). He was lying on his back on top of a very large snow tube. I was at the bottom of the hill near the street. Just one big push sent Peter rocketing down into my waiting arms. His squeals of delight and laughter filled our ears as they echoed and bounced off the night sky and down through our little valley. When I grabbed the tube he yelled, “Mama do again, do again, back up the hill”. No one could refuse that request. I pulled him about half way back up the hill and Dennis took over and ran him the rest of the way back to the cornfield. This went on until Mom and Dad could no longer run up and down the hill.

Dennis reminded me how hard the snow was for us last year. We were still living in RMH and snow meant that I was pushing Peter’s stroller (with IV’s attached) up and down snow-covered sidewalks and thru sloppy slush puddles. I didn’t have boots and I was cold and went when we arrived at the clinic. Peter's stroller was covered with this big clear plastic stroller cover that kept the weather off and the wind out. (For those of you who grew up on the farm it reminds you of a Heat-Houser for a tractor). So I decided to look back at our journal to see where we were this time last year. I was very surprised to read that it was one year ago that Peter was able to bear weight on his right leg for the first time. Wow, what a difference a year makes! He now spends his time running thru the house climbing on and off the furniture, up and down the stairs, and chasing the dog. God has been very good to Peter and us. We are both humbled and over whelmed by his blessings.

Saturday night Aunt Sharon and Uncle Mark had their combined family Christmas party. Peter enjoys good food and any opportunity to get together with a bunch of children to play. Much to his delight there were about a dozen children. They played cards, video games, wrestled, and carried him around the house (he enjoys his celebrity status). Aunt Sandy, Uncle Rick and the kids gave Peter a learning leapfrog for his Christmas present. It is a large stuffed frog with a computer inside. It is programmable and you can personalize it with names of people who love him and a message from them. It randomly makes up stories and them spits out the messages. I had Aunt Nanny put a message in the computer hers says, “I love my funny little guy”. Peter was playing with the frog the other day and out came Nanny’s message. The look on his face was priceless. He got a twinkle in his eye and then he started to belly laugh. He looked at me and said, “How did my Nanny get into my frog”?

Tuesday afternoon Aunt Chris (www.ChristineRachelle.com) came to our house with a camera crew from WLVT (channel 39 out of Allentown). She has released a musical CD and some of the proceeds from its sale will be going to aid two of the foundations that helped us financially while Peter was in treatment. Peter was among those interviewed for the piece they are doing on good things that are happening in the community. I will let you know when it will air.

Saturday the Harleysville Fire Company will be doing their best to help Santa out. They will be transporting him on top of a fire truck to visit the children in town. We are very excited to have Santa in our neck of the woods and so close to Christmas. We will be helping Peter to put together a list of the things he would like to see under the tree. We hope that Santa will stop at our house so that Peter can give him his list. We will keep you posted on that one too.

We will be back in NY on Thursday the 22nd for a check-up. It will be the usual, chest x-ray, finger stick, physical exam and immunizations. He will receive round two of his flu shot. Peter continues to amaze us with his development but his journey is not over. Please continue to pray that:

His cancer never returns
His nerve will continue to heal and regenerate
His toes will wiggle and that his ankle will move
That he will someday throw his brace away
That the hand of God has protected his growth plates
His right foot will continue to grow and will match the left
That we will have safe travel to and from his appointments
That all appointments will be uneventful and that he will pass all future tests with flying colors!

Thank you for your continued prayers and support of Peter and our family. Please sign our guest book when you visit it means a lot to me. Also if you wouldn’t mind one small prayer request for me…I had a mammogram this week and I’m being called back for additional ultrasound review. I’m hoping that it’s just a cover your butt move by the radiologist. Thanks.

Big Ryan (see link below) had scans this week and is starting another round of chemo. Please pray for his healing.

Steve, your family is in our prayers.

Tuesday, November 29, 2005 7:13 PM CST

Since my last update we lost three special people to cancer. On Friday November 18th, Don age 71, went home to be with the Lord. He was a wonderful husband, father, and grandfather. I knew him for about 20 years and I’m glad that he was part of my life. He had an amazing faith (that gentle, sweet and steadfast kind of faith that old bucks have) He taught Sunday school for many years and for even longer than that he taught his children. His youngest son is married to my sister. His father’s influence has left a wonderful and permanent mark on his son.

On Saturday, November 19th Liam Kane received his angel wings. He was 5 years old. We met Liam and his family during our Easter admission at AI duPont, Spring 2004. He was a beautiful little blue-eyed boy. He passed from this world when God said it was time proving again that he only takes the very best. My heart is so broken for his parents. They too have an amazing faith in God and an amazing love for their child. They celebrated Christmas a few weeks ago so that they could have the joy and the memories of yet one more precious holiday with their son. Well done good and faithful parents you met all of Liam’s needs, physical, emotional, and spiritual. Liam touched so many people in his short time on earth and I’m so glad that I was one of them. (www.liamjameskane.com)

On Thanksgiving morning we learned that Oma went home to be with the Lord. She fought and finally succumbed to a long and painful battle. I believe that she was 80. When I first met Oma about 15 years ago. I noticed her thick German accent; its presence made her seem gruff and in charge. Her daughter and son-in-law’s house was a flurry of holiday activity and she was barking out orders to her brood of grandchildren as they swirled around her legs and ricocheted off the walls of the house. They loved her and she loved them. This July 4th we made our annual pilgrimage to their home. I once again came face to face with Oma. The passage of time and the hard reality of her battle were starting to take a toll on her. I knew that her time here was coming to a close and I wanted to tell her all that she had come to mean to me. How that first time I met her that she scared me a little bit and I knew that I better not step out on line. How sweet she was the day we went to Burger King’s drive-thru and ate our lunches at their kitchen table. She was sitting on the couch and Miss Lydia had been playing beautician. Oma’s hair was a mixture of curlers and barrettes. She was holding a hand mirror and was admiring her fine new do. I thought to myself you’re an old softy, Oma. How I thought that she was a pillar of strength and love. That her faith was amazing and that the role that she played in the lives of her family were immeasurable. I wanted her to know that I had grown to love and respect her more than I had ever imagined and that I looked forward to seeing her at every family gathering. But, I never did tell her how I felt and tonight at her viewing I could not find the strength I needed to tell her family either. Someday I will stand next to Oma in Heaven and I will tell her all the things that I should have said. I will laugh with her about my first impression and I will tell her that she doesn’t fool me anymore because I know that her heart is pure gold and that her love for her family and God would be hard for any of us to hold a candle to.

We attended Thanksgiving Eve services. The theme of the evening was something about life’s storms and blessings and they needed someone with lots of experience in the storms and blessing department to speak. And they thought of me (go figure). Thanks to Aliza, I shared about our wonderful and chance meeting on this journey. Thanks to Jerry and Linda for your last caringbridge entry. It was my closing line for the evening. Our Thanksgiving Day was quiet and uneventful (I’m really big on uneventful these days). We ate at home I cooked. It was sort of like a progressive dinner without driving from house to house. First the turkey was finished and then the filling. The cauliflower followed this and sometime around 8:30pm I got around to making the cranberries (I think that it is important to pace yourself when eating a large meal).

We had hoped that the Kennedy family would be joining us for turkey but Mr. Hazen got a fever and it was his scan week and he needed a transfusion. I know our extended cancer family knows what that means (that’s right the Kennedy’s got to eat the turkey and trimmings all in the same sitting). I did receive a phone call from Suzan later in the weekend. Hazen’s scan result were not what they were hoping for and they had to start a new chemo on Monday. (www.caringbridge.org/visit/hazen) Please add Hazen and TEAM KENNEDY to your prayer list. Hazen needs to have amazing strength and healing from the new chemo and Suzan and Scott need amazing peace and rest to get him through it.

On Friday we got a small Christmas tree out of the attic and put it in the kitchen for Peter to decorate. It was priceless watching his face as I unwrapped and handed ornaments to him. Each ornament has a story that goes with it; you see it’s the Peter tree. On the top are two angels. They have the names Haley and Evan on them. They were Peter’s best friends at Dupont. Next was a yellow taxicab with Santa driving. It has a Christmas tree on the roof and on the bottom are the words, “To Peter From Maggie XOXO”. She was the little girl from Michigan that lived across the hall from us at Ronald. We will be adding a Maggie and a Liam angel to our tree very soon. There is a blue jingle bell with an angel on top from Floss (one of Peter’s favorite waitress’) Bob the builder and a toy soldier from Aunt Sharon and Uncle Mark. A wooden snowman is there from Ruth Hoff (part of my baby shower gifts when I was expecting Peter). There was a bunny ornament that Aunt Nanny attached to his first Easter basket. There is an angel from Trish and a sheep from Jill and Paul both with special meaning to us. I guess my favorite was a small puppy with the number 2 on his sweater. Dennis and I gave that to Peter for his 2nd Christmas. There was a little memory card in the box and I had forgotten writing this message to Peter, “I hope you hang this on your Christmas tree until you are 93, Love Mom and Dad”.

I hope that your Thanksgiving Holiday was wonderful, that family and friends surrounded you. I hope that you told them how much you love them, don’t; wait. I hope that each part of your meal was completed at the same time and that you told (Julia Childs) what a great job she did putting that meal on the table. I hope that you are truly thankful for each blessing in your life. I hope that sharing Peter’s journey has made you truly aware of the power of God and the power of prayer. I hope that you love God more with each passing year.

Saturday morning when Peter awoke he sounded terrible. He was coughing and congested. We paid a visit to the pediatrician and found out that he has a really bad ear infection. He is on an oral suspension antibiotic. When I give him the syringe full he says, “Yum Mama me like it, it’s great”. He takes the whole thing every time never complains. He is the best boy in the world. I’m not allowed to call him a baby any more. He says, “no Mama don’t say it me not a baby”. Dennis is traveling right now and Peter is missing him very much. Peter wants to play with him. I tell Peter that he better get in all the playtime he can because Daddy is getting very old. He turned 45 on Thanksgiving Day. Peter wrapped his gifts and signed a card. He very carefully covered everything with stickers and picked out some balloons that he knew Dennis would like. We ate ice cream cake that was full of holes (turns out that my guys were sticking their fingers in it and eating all the icing. Dennis, Happy Birthday to a man who is so special that your birthday is celebrated as a national holiday. I love you old man, please pass the cranberries!

I got to go to work yesterday and today. I love work! Today a handsome man with light-up sneakers and a blue pacifier stopped by the office to give me flowers and a kiss. He is the most wonderful thing I've ever laid eyes on and he has stolen my heart for ever!

Missy, Suzan and Aliza thanks for the anytime day or night phone calls, the laughs, the cries, the love and support.

Friday, November 18, 2005 9:17 AM CST

We just received the great news that all three of Peter’s scans are clean!

Thank you God for this astounding gift of three more months of peace and joy with our little boy.

When Dennis and I were staying at duPont Hospital during Peter’s first admission we opened our Bible one night to Psalm 40. There we read the following: “ I waited patiently for the Lord to help me, and he turned to me and heard my cry. He lifted me out of the pit of despair, out of the mud and the mire. He set my feet on solid ground and steadied me as I walked along. He has given me a new song to sing, a hymn of praise to our God. Many will see what he has done and be Astounded. They will put their trust in the Lord.”

We pray for a miracle of healing for Peter; a full recovery from his cancer with his entire precious parts intact. We pray that God will astound the medical community and all of us with his precious gift of life.

Please continue to pray for this miracle for Peter. Please pray for God’s wisdom for those in cancer research so that this disease will no longer threaten the health of any of us.

Thursday, November 17, 2005 9:40 AM CST

We just received a call from Sloan-Kettering. The CT scan (preliminary report) is also NED (no evidence of disease). Thank you God. Please continue to pray for the MRI results that are still pending. We are anticipating that result by this afternoon and I will post the update then. Thanks

Tuesday, November 15, 2005 2:12 PM CST

The trip to the city went smoothly. We checked into our room and headed out into the city. We were able to dine al fresco at one our favorite Mexican restaurants, Cilantro. We left there and headed to Ronald Mc Donald House, I’ve been really under the weather so we were not able to have dinner with Mel and Dylan because his white counts are dropping. We spent sometime with Mel and left Dylan with a birthday card (he turned 7 last week). We stopped by hands-on (the music school) to see Peter’s old teachers but, the ones we knew were not in.

Peter and I crawled in bed and read all the books that we brought with us. We end each evening’s story time with the reading from his daily blessing book (thanks Mike & Ellen). We said our prayers and he fell fast asleep. Dennis and I stayed up and watched the entire, sorry excuse for a football game that was on Monday night football.

We got up early and headed to the hospital. Peter’s line was placed on the first try (thanks Danielle and Gail. Dennis had to hold him for line placement because he is getting so big and strong that I can no longer hold him still. His PET injection was unremarkable. We took turns holding him while he watched The Heffalump Halloween. The anesthesiologist put him to sleep in my arms and we laid him on the scan table. Dennis kissed him good bye and we waited in the hall for the longest 30 minutes f our lives. Peter went to the 9th floor recovery area to wake from his aesthesia. He woke up very hungry and ready for action.

We played trains in the child life room while we waited for our consults with Dr. LaQuaglia (surgeon) and Dr. Wexler (oncologist). The awesome news is that Dr. L already had the PET scan up on his computer and was able to give us a preliminary report of NED, NED, NED, NED, NED!!!!!!! Thank you God, we are so grateful, humbled and relieved. He also felt that Peter’s leg pain may very well be related to continued regeneration of the nerve, which is a great thing! He feels that Peter may benefit from some support or bracing at his hip/ waist area just until he gets a little bigger and stronger. The need for support is most likely the explanation for the previous falling and complaints of pain in his back, neck and hip area. Dr. L. will see Peter during each future scan visit to be sure that no side effects of his treatment are getting away from us. We will see Dr. Healy (orthopedics) tomorrow after his MRI and CT. Dr. H should be able to tell us more about possible needs in the rehab department and brace/support department.

Peter was nearly asleep in the stroller as we left Sloan-Kettering but, when we walked past the playground, in true 2 year old style, he perked right up. Poor, Daddy had to climb the play set and help Peter down the slides over and over and over. There is nothing like watching your child climb jungle gyms with a peripheral line in his arm (yikes). Then we spied the swing set it was full of those little seats that their legs go through and they are supported at the back and waist. Oddly enough is was the first time that he was on one. He just loved it! Daddy would stand in front of the swing so every time he came forward his feet hit Daddy in the butt. Then Daddy would act like he was hit so hard that it pushed him across the playground. Peter was laughing so hard that he was snorting. He is such an amazing and strong child; a few hours before he was fasting, getting needle sticks injections and anesthesia. We are so in love with him.

Please continue to keep Peter in your prayers. Tomorrow he will have to drink eight ounces of iced tea with contrast in it and it tastes terrible. He will have two more scan that we need to hear NED on and he has to recovery from anesthesia again. We have the orthopedic consult and will need another safe trip home.

Mel and Dylan, we wish that we could have spent more time with you. We praise God that you had another birthday and we continue to pray for your miracle of healing.

Aliza and Nate, congratulations on your birthday Nate and praise God that your lines were removed today! Never to return, clean scans forever, another one of Gods miracles.

Suzan and Hazen, where are you we tried to call and were unable to find you in clinic. Your family is always in our prayers, especially next week during your scans. God is so good and he loves these children!

Joanna and Kathy, I came to your room today but the medical teams were rounding out side your door. The lights were off and no one answered my knock. I hope that you are both feeling well and hope to meet you sometime soon. God bless you both.

Love to you all, Dawn

Monday, November 14, 2005 10:44 AM CST

We are preparing to leave for NY. Each time we say we will leave early and spend some quality time in the city and then the day arrives and we remember all that we’ve been through and all the time we’ve spent away from home. We ended up eating breakfast in our PJ’s and watching a movie with Peter. While I’m packing bottles and folding clothes Peter yells, “Dad come on roll off the couch with me”. There is a flurry of flying cushions and pillows and then the laughter starts. Who wants to walk away from that kind of fun; certainly not team Zucca.

Bop and Nanny stopped by to see the little guy and to drop off a small cooler. We will take Peter’s Rosenberger’s iced tea to the city in it. Thank God for Aunt Nanny she volunteered to take Peter to see the horses and to feed them some ear corn. He was very excited and left the house dressed in basketball PJ’s, sneakers, a bright orange coat, and he hag a canvas and mesh bag on his head (his new hat as he called it). I hope no one sees him. They will say that poor little boy what kind of a mother does he have?

Hotel check–in is 3:00pm. We are hoping to have dinner with Mel and Dylan if his counts are good. Peter and I are both getting over colds and we don’t want to make any chemo kids sick.

Tuesday we need to be at the hospital at 7:00am. He gets his line at 7:15 and his PET scan injection by 7:30. The scan will take place between 8:30 and 8:45. We have a family consult with his surgeon at 2:00pm. We will leave the hospital and try to get in something fun in-between.

Wednesday he has a 10:30am MRI and an 11:30 CT scan. If all goes well and he wakes easily from his anestehia we hope to leave the city by 1:30.

Please pray for safe travel to and from the city. Pray that Peter will be able to tolerate his fasts, line placement, anesthesia, and that his blood studies will be good (we need his immune titers to show that his last 2 rounds of immunizations have stayed in his body). And most importantly that all his scans are NED!!!!!! (No evidence of disease). Thank you all for your continued support for all the cards, calls and prayers.

Tuesday, November 8, 2005 1:11 PM CST

Wow, so much has happened since our last update. Aunt Sharon and Uncle Mark came for a visit. Peter could not wait to play trains with Uncle Mark and to have a horsy ride on Aunt Sharon. We took them to Ott’s so that they could see the Mountain of Mums. Peter impressed them with his ability to climb all the steps and walk across the top of the mountain. Poor Aunt Sharon almost had a heart attack when Peter grabbed the handrails and started swinging his little leg out over the top the Mountain. She grabbed his hands and directed his path to the stair steps that head back down to safety. He then took off running down the blacktop drive and rolled himself down an embankment! Spending time with a daredevil two year old is not for the faint of heart.

We also had the pleasure of spending some time at Ott’s with Lynn and Sheila Bayard. They are part of our Sloan family and they left beautiful Manhattan and spent a day with Peter, Nancy and I here in PA. It was great to see them both and wonderful to see Lynn looking so beautiful and healthy. Praise God for her healing and all that blonde curly hair! We will post pictures of the Peter and Lynn next time around.

Peter had another visit from the orthotist for evaluation of his current Dafo (the brace he wears on his right foot). Our little friend has outgrown that brace in less than 6 months. His right leg was cast with a fiberglass cast in our kitchen on Friday, October 28th. This was much easier than the first time around. There was much less crying and squirming. Peter is now able to better understand the difference between the things that hurt and the things that don’t. The fiberglass cast will be sent to California where a plaster mold will be made of Peter’s leg. This mold will be used to make the new brace. It will take about two weeks to get the brace back.

On Sunday evening October 30th, we decided to do some trick-or-treating in our area. I came down stairs with Peter’s costume and his plastic pumpkin bucket in my hands. Peter and Daddy were sitting on the couch. I showed them to Peter and said, “today is the day that you get to wear your dragon costume and fill your bucket with candy”. He threw his hands over his head and yelled, “yea”! We dressed him took some pictures and headed up the street to Bop and Green’s house. They were very excited to see him and they recognized him right away (go figure). He scored big there with a new DVD a dollar bill and some candy from Asher’s chocolate store. It entered my mind to remind them that they would not have even considered such extravagance on the five of us kids but I refrained (if you can’t say something nice don’t say anything at all). Bop then drove Peter and I all over Vernfield on the golf cart. We visited with some of his favorite people. First stop Bill and Jayne, they have the fluffy white dog that runs very fast on little short legs, Peter thinks that she is very funny and they call her Nanny (one of his favorite names). He scored big again with candy and a shiny apple. We left for Roy and Valeria’s house next-door, the apple was already being eaten. Roy and Valeria we expecting him and had a bag of his favorite chips waiting by the door. Valeria posed for a picture on the front porch. Roy and Valeria have lived in their home for my entire life and we used to trick-or-treat at their house when I saw Peter’s age. Then we headed out Morwood road to the Vernfield Deli but, Ron and Kathy and Kathy and Ron as Peter calls them were not there. So back down the road we went to there home. They have a trampoline in the yard and Kathy spent lots of time pushing on the sides to help Peter bounce. Ever since that visit he has declared her a “great bouncer”. A title like that is reserved for only the most special people. We went back home, got in the car and headed off to places that are too far to go by golf cart. We saw the Knechel’s X2, Great Uncle Russell and Great Aunt Dorothy, Arlin & Nancy, The Frederick’s and Aunt Nanny’s family. We REALLY had more candy than we needed when we got home, but we didn’t stop there. The next day it was off to NJ to trick-or-treat with cousins Rebecca and Dan. Ryan rode along to watch the joy in Peter’s face as handfuls of candy filled his pumpkin. We walked through the development that they live in. Ryan and Gecca each were holding one of Peter’s hands. His well-stuffed dragon behind was shifting from side to side as he walked down the sidewalk. That’s the story of Peter’s happiest Halloween to date. It was a joy for him to be out with the other children just one of them nothing different about him. It was a joy for me just to watch him walk down the sidewalk and to hear him talk with the children.

November is a new month for all of us with lots of different things to do and see. Last Friday we met Ardene at Covanent Presbyterian Church. We used their playground for his PT session. He did amazingly well. He can climb up, over, around and slide down almost ever part of their playground (without help, yikes). He had so much fun and I took lots of pictures of the two of them at play, I mean work. Saturday the weather was so warm and beautiful here that Peter and Daddy did some end of season lawn mowing. Later we all filled the bird feeders. Daddy got the ladder and Peter climbed up and down the ladder holding open the lids of the feeders and filling them with scoops of seed. His face so precious, filled with joy and smiles and pride as he mastered his new chore. We were just beaming watching him! Dennis kept saying did you see his face, did you see his face. I never miss anything on his face. I have spent more time studying that little face than anything else I’ve ever seen.

Sunday after church we took Daddy and Jayner to the playground. I brought lots of different cameras and the tripod with me. We set the timer and started a very silly decent down the side by side slides. Daddy was holding Jayner on his lap and I had Peter on mine. I’m sure we were a sight to behold. Peter was very pleased with the silliness of the day but I think it may have been lost on the dog. I ‘am looking forward to getting those pictures back. Even if they don’t turn out that great I have permantently photographed the day on my heart. There is something so appealing about watching your husband make a mad dash for a sliding board carrying a concerned dog, then jumping on and letting go of the sides just in time for the timer to go off (I really hope that you are getting that visual).

Mom went back to work on Monday. Wow, does that ever feel good! Nanny watched Peter and she had a very special day planned for him. First they went back to the church with the nice playground. She baby-sits there on Monday mornings. Peter got to go and play with the boys and girls there. He calls them “my friends”. After play time they went out for a slice of pizza, then stopped at the grocery store and bought a 3-pound bag of carrots. Peter held them in his lap on the way to her friend’s horse farm. The plan was to feed them to the horses. He was very excited. They came back home for a golf cart ride with Bop. Before long Ryan and Grant got off the school bus and Peter was ready to play with them. He was on my mind all day at work and I tried to call Nanny several times but could not reach her. I had visions of him crying and missing me and hoped that he was fine. When I arrived at her home to pick him up he ran out in the kitchen to greet me and then took off running in the other direction crying I want to play. We decided to let him stay and play a little longer with the boys. All I wanted was a kiss and hug before I left. He reluctantly kissed me good-bye and then said; “now go away, and go far away”. So much for being concerned about his day!

We will be leaving for NYC on Monday November 14th. Peter will have scans on Tuesday and Wednesday. If all goes well we hope to have the results by Wednesday night and we hope that the results will be NED (no evidence of disease). Scans are always a very stressful time for all three of us. I would like to request your continued prayers for Peter. He will need to endure fasting, drinking contrast, line placement, anesthesia and multiple doctor visits. They will be drawing lots of blood this time and performing studies to see if his body has been able to hold onto the immunizations that he was given on his last two visits. We will be speaking with several doctors to discuss his nerve regeneration and his hip and bone growth. Please pray the Peter’s scans are all clean and that no disease has or will ever recur in his body. Please pray for his ability to handle all that he must endure to be scanned. Pray that his blood work will show that his immunization are still in place so that he will not need to be re-immunized. Pray that our doctor visits will be very positive and that Peter’s nerve is continuing to heal and that his toes, foot and ankle will soon be wiggling, rotating, walking and growing as God had originally intended. Pray that his growth plates have all been protected and that his hip, pelvis and all surrounding bones and tissue are free from any destructive side effects from his treatment. Pray that the miracle of Peter’s life will continue and pray that the miracle of Peter’s healing will be complete and that he will grow into the man that God intended him to be.

You made all the delicate, inner parts of my body and knit me together in my mother’s womb. Thank you for making me so wonderfully complex! Your workmanship is marvelous-and how well I know it. You watched me as I was being formed in utter seclusion, as I was woven together in the dark of the womb. You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed. Psalm 139:13-16

Sunday, October 23, 2005 9:41 PM CDT

I know I just updated last Friday But, the next day was the start of such an awesome weekend that I wanted to share it with you. We made it to Merry Mead farm this time as a whole family. While Dennis parked the car Peter and I got inline for tickets. Daddy met us and the fun started at the farm’s version of a train. It was a John Deere lawn tractor pulling 4 express wagons. Peter was in the last one, he was wearing a flannel shirt and had his elbow resting on the side as if he was driving car with the window rolled down. He looked adorable and we got such a kick out of watching him. When the ride ended we took a tour of the farm with Peter as our guide (after all he’s been there enough to lead groups) then it was time for lunch and a hayride. We rode in a large wagon with several other families. The day was warm and sunny with just the right amount of wind to remind you that fall is here. We spent nearly the entire ride watching his face and then the best thing happened. For the first time since this journey began I actually lost myself in the shear joy of being one small family and forgot that we are a cancer family. (I know I can’t believe it either).

We left Merry Meade and headed to our church’s fall festival. We spent so much time at the farm that people had already begun cleaning up the festival. We left with the best apple dumplings that you’ve ever tasted and headed home. Earlier in the week I was speaking with one of the Moms from duPont and learned that the remembrance service for the children that lost their battles was last weekend. Some of the nurses were having a hard time so we decided to make the trip to Delaware to show them one of the children that is still here. It was very strange pulling up to the hospital and very strange to visit there again. The nurses that knew Peter were very happy to see him. It was good to see Jen Vis (one of the children whose treatment ended before we left duPont). She relapsed and could use our prayers. When we were leaving we passed the Chapel. We entered to pray as was our custom during all visits and all admissions. The chapel is very small with two rows of pews, about 8 or so on each side. When you first enter on your left is a notebook where people write their prayer requests. We have written many requests in the book for Peter. The entire front wall of the church is a stained glass window that is just beautiful when the sun streams through it. When we entered the chapel I immediately went to the notebook and was blessed to read all entries that day said, “Praise God for his miracles”. That is exactly what we entered to do. It was a wonderful experience taking our usual seat on the right hand side near the back. It was late and the sun was no longer shining. But the room and the window seamed to glow with the shear joy of sitting in that humble spot, this time in peace, to thank God for all his miracles.

We left the hospital grounds in silence and then we turned to each other and said, “do you believe how odd it is to be here”. Many of our admissions came flooding back to us. We both looked down the hallway where we had our first visit and were given the news that we had a big problem. The day we waited for Peter outside of MRI, then found out that he had a mass. All of the rounds of chemo, the pain, the suffering, the day he coded. We talked about Dennis’ long ride to the hospital not knowing what he would find when he got there. All the great friends that spent countless days and nights with me during admissions, Jill, Nancy, Sandy, Sharon, Trish came to mind. We had visits from friends, neighbors and family. Bob and Cindy spent an afternoon out on the terrace with the three of us. (Thank you, we miss you both) The visit turned out to be bitter sweet; I have been having difficulty sleeping and nightmares, since we got back. Sunday morning Peter was in his Sunday school class and made it through the entire class. (Of course Daddy and Mommy made it through the entire class with him. Sunday evening we had some friends over for dinner. Dennis had a busy travel schedule for the upcoming week so Peter and I met him for lunch on Monday at chick-fil-a. They have an indoor playground. Peter took his first ride down the slide and Daddy was up in the tubes and went down the slide too! Peter was in heaven. He is unable to climb up the ladder/steps like other children do so we spent lots of time helping him climb up and riding down the slide. My knees are so sore and bruised. (Can you say knee replacement)? You don’t know how old you are until you spend some time in one of those things. Tuesday he had PT and speech therapy. When I was putting his socks and brace on I noticed that he had a small amount of rash on his lower legs it reminded me of prickly heat. By Wednesday night the rash had spread to his trunk area. I put a call into his pediatrician. The plan was to watch it and if it was worse in the morning to call and come in. It seemed to have improved when he awoke on Thursday. My mom and I took Peter to Ott’s greenhouse. For those of you who have never been it’s got the biggest mountain of flowers that you’ve ever seen. Peter climbed the staircase all the way to the top (Mama was not allowed to help) He walked across the top and went down the stairs on the other side. I took lots of pictures, we will add some to caring bridge, but mostly I will e-mail them to his wonderful doctors at Sloan with a thank you for helping our son. We went inside the greenhouse and threw pennies into the fountain. We threw many wishes into the water with the pennies, they sounded something like this, “no more bad cells for Peter, no more bad cells for Nate, no more bad cells for Hazen, no more bad cells for big Ryan, no more bad cells for little Grace, no more bad cells for Liam, Dylan, Michael, Jen, Annie, etc, etc, etc. Peter fell asleep on the car ride home. I carried him in to the house and laid him on the floor. While he was sleeping he cried and whined. I went in to the living room to check on him and the rash was worse and he was hot. We called the doctor and headed into the office for an 8:15pm appointment that night. His temp was normal when we arrived but the rash was everywhere. He had a strep throat culture, which was negative, and we went home. We don’t’ know what the rash is from but it is improving just in time for Peter to battle his first cold of the season. Dennis is also fighting a sore throat and head cold so we slept late on Saturday and Sunday and stayed away from church and Sunday school in hope of keeping our germs to ourselves. Peter has been falling a lot lately. He is just walking along and he falls for no apparent reason. My fear is that his hip displasia is getting worse, that the night brace is not helping to slow the progression of or the correction of the existing displasia. (YUCK)! We live with many concerns about what Peter’s future holds, his young body has been through so much surgery, chemo and radiation. We knew that there were many big risks to his future development but had no other acceptable choices.

Please pray that we have chosen well for Peter. Pray that God has and will continue to protect all of his organs, muscles, nerves, and growth plates from damage. Pray that Peter’s miracle will continue, that his disease will never return and that any damage, which may have taken place, will be fixable in his lifetime. Pray that Peter will never have to suffer again at the hands of this rotten disease. Please pray for the Romano family, their son Michael received his angel wings on Friday. (www.caringbridge.org/page/friendsformichael)
Below is an essay that I found on another caring bridge site. I wanted to be sure that all the wonderful Moms I have met got a chance to see how they were chosen. Sending lots of love and respect to each of you, Jean, Sue, Missy, Suzan, Mel, Aliza, Liza, Dawn, Pat, Miriam, Andrea, Kathy, Laura, Vickie, Sheila, and Debbie.

The Chosen Mothers
by Erma Bombeck

Most women become a mother by accident, some by choice
and a few by habit. Did you ever wonder how mothers of
children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over earth
selecting His instruments for propagation with great care and
deliberation. As He observes, He instructs His angels
to make notes in a giant ledger...

"Armstrong, Beth, son, patron saint Matthew"
Forrest, Marjorie, daughter, patron saint Cecilia"
Rutledge, Carrie, twins, patron saint Gerard."

Finally, He passes a name to an angel and says, "Give
her a child with cancer." The angel is curious. "Why this
one, God? She's so happy."

"Exactly," smiles God, "Could I give a child with cancer
a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel,

"I don't want her to have too much patience or she will
drown in a sea of self-pity and despair. Once the shock and
resentment wears off, she will handle it."

"I watched her today," said God. "She has that feeling
of self-independence that is so rare and necessary in a mother.
You see, the child I'm going to give her has it's own world.
She has to make it live in her world and that's not going to be easy."

"But Lord, I don't think she believes in you," said the angel.
"No matter, I can fix that. This one is perfect. She has just
enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child
occasionally, she'll never survive. Yes, here is the woman I will bless
with a child less than perfect. She doesn't realize it yet,
but she is to be envied. She will never take anything her child does for
granted. She will never consider a single step
ordinary. I will permit her to see clearly the things I see.... ignorance,
cruelty, prejudice.... and allow her to rise above them."

"And what about her patron saint" asks the angel, his pen poised in mid-air.

God smiles and says..."A mirror will suffice."

Friday, October 14, 2005 6:52 AM CDT

Well fall is here and the amount of time in the old pumpkin patch has increased dramatically. This is good new for Peter who could spend all day climbing over vines, picking gourds and just getting as dirty as he possibly can. His walking is improving almost daily and his balance is improving as well. He is now able to hold his arms down near his sides when he walks instead of up in the air and out at his sides. He looked a little like a tight ropewalker for a while. Last week we were out on the golf cart driving in the fields when the neighbor started to combine the cornfield across the street from my Dad’s farm. Harold lost his daughter to breast cancer while Peter was going thought his treatment. He stopped the combine, got out of the cab, climbed down the ladder and invited Peter in for a ride. He was a little unsure at first but once he got his hands on the ladder he couldn’t stop himself from climbing in. We had a great time the farmer engaged the heads and we had a great view of the corn coming in on the stalk and going out clean and shelled. Thanks for the ride Harold and may your family and Brenda’s be blessed.

The next day we headed to Merry-Meade farm for a trip through the corn maze. (I think we have a corn theme going here) Peter had a great time and I could hardly keep up with him. He ran around corners and headed into dead-ends laughing and smiling. We visited the animals, bought a farm fresh apple for snack time and headed back home very tired. Friday was Peter’s six-month review with the early intervention program. It went very well. His nutrition therapy has been discontinued and he will not qualify for speech or education therapy when he leaves the program at age three. He will enter the next program through the intermediate unit. They will be working on different types of physical therapy issues with Peter then the ones we address now, like removing barriers to education. Helping Peter to get on and off of a school chair and in and out of his desk. Learning to play on a playground so that he can socialize at school and make friends. Friday was also the day the Peter’s friend Nate received his last dose of chemotherapy. We join with his very tired and stressed out parents and praise God for the end of his treatment.

Sunday we had a few friends over to watch the Eagles get a good whipping from the Cowboys. The sounds coming form the family room were ones of disgust, but Peter didn’t mind his Uncle Jamie had taught him to say “stinky poop” when ever the Eagles scored and “go Dallas” whenever the Cowboys scored. I don’t think he ever repeated the words but he likes pretzels and chips so he had a fun day.

Wednesday we went to Sloan for our monthly check-up. It was a very long day Peter and I left the house at 6:00am we picked up my good sister and headed into the worst traffic and rain. We arrived about 4 hours later. Peter spent sometime at the fish tank counting fish, “3 blue, and 2 yellow, 3 striped”; while we were standing there Suzan and Hazen Kennedy came in. Hazen looks amazing and he had stopped by to go to school. God has been very good to little Hazen (thank you for praying for him). Peter was happy to see Dr. Meyers and most of the staff, but not the finger stick room or the immunization room. He handled his finger stick very well and he barely cried at all this time. The shot were a different story and this time Mama and Nanny cried along with him. (welcome back fevers and irritability) Dr. Meyers feels that the size difference in Peter’s feet is due to atrophy (because of non-use) and that he may need to have his ankle fused in the future because he can not move his right ankle, foot or toes. One good sign is that he has out grown his current brace. When his brace and sock are removed his foot remains red with marks on it for over 30 minutes. That’s the test for size when the child is too young to tell you that is doesn’t fit any more. We are not entertaining any ankle fusion at this time because we feel that Peter still has a lot of growing to do and that God is still at work in this journey. We have a plan to take Peter to see Dr Brill at AI duPont; he is a neurologist there. I want to know what he thinks about the future possibilities of his nerve healing. We will try to make an appointment during our scan stay in November at Hospital for Surgical Specialties in Manhattan. They are renowned for pediatric rehab. Peter was there twice during his cancer treatment at Sloan for PT evaluations but was never seen by any of the rehab doctors there. I will also take Peter to one of my favorite prayer chapels it’s in Philadelphia. There is a church on Girard Avenue called St Peter’s in the basement there is a shrine to St John Neumann, in the left front corner of the shrine is a small prayer chapel where the very devote meet to pray. A long time ago we received a letter from a loving mother requesting that we take Peter there to be blessed and we did. One day when we stopped at the church a man was waiting outside to speak to Dennis. He told us that there is a women who prays in the chapel and that she has a healing gift form God. He spoke to the women and she asked us to bring Peter in for prayer and we did. She did not pray in English so we do not know what she ask God for, but we do not know that when she finished her prayer she told me in English “your child will walk”. This may not seem very extraordinary to you but we had never told anyone there that he might not walk. We will, of course, request your continued prayer for Peter’s healing and for God’s complete miracle for him.

Sadly I need to tell you that Madison (we requested prayer for her on our last update) received her angel wings last week. Ten-year-old Rachel received her angel wings this week. I just recently learned that Ashley passed away two months ago. Please pray for all of these families. Please ask God for wisdom for those in cancer research.

Thank you for your continued love and support. Please sign the guest book; Peter’s site receives about 700 hits a week and about 5 posts in the guest book. I continue to struggle with this over whelming journey and really need to hear from you.

I almost forgot to tell you that I have time to post this long update because of all the benadryl that Peter is taking. Why, you ask? Because yesterday while he was taking a nap, sleeping off his fever, a bee was on his blanket and stung him not once, but twice in the neck (give me strenght). Will this child ever get a break?

Saturday, October 1, 2005 8:38 PM CDT

Since our last update Peter has been very busy. The PT visits have been cut to once a week so we have been golfing, going to the new playgroup at church, and walking many miles in the pumpkin patch. Peter has been picking peppers and gourds for my Dad. It brings my father so much joy. Peter yells another one and my father watches the peppers fly through the air. He has a push toy out in the gourd patch with him and he lifts the seat and fills it with treasures; small gourds, golf balls, and red tail hawk feathers. Peter is such a regular little guy now! We baked and decorated cookies and Peter distributed them to the people that he loves.

Daddy has been traveling and when he came home from work on Friday Peter was ready for action. They played tractors and built towers out of Lego’s. They spent time hiding in the closet under the hanging clothes. They yell and scream “boo” at one another and the laughing gets loud and wild. The new game is airplane and Dennis is exhausted from running around the house flying Peter through the air.

The night brace continues to be a problem for all us. Peter does not like wearing it and I don’t blame him one bit. I now wait for him to fall asleep and then place him into it (he will no longer tolerate having it on before he falls asleep. When he is really tired he can wear it anywhere from 3 – 6 hours. We have noticed that his right foot is now at least one full size small than his left foot. I have no ideas what’s going on with the size discrepancy but have some fears that we are starting to see post treatment growth problems. We will address the foot issue when we return to Sloan on Oct 12th. I will be scheduling an appointment with our local orthopedists in the near future to see if the night brace is doing its job. (I sure hope it’s doing something positive).

I received an e-mail requesting prayer for a couple of the children from Sloan. One is a boy named Michael (http://www3.caringbridge.org/page/friendsformichael/index.htm) who has been battling his disease since about kindergarten (now in the 6th grade) and not doing too well. The other is a girl named Madison; (www.caringbridge.org/la/madison) she is 4 years old with neuroblastoma and is also not doing well. The very sad twist to Madison’s story is that she had stem cells harvested and stored for her just incase things got bad (and they are) and they were destroyed in hurricane Katrina. Could you please add these two children to your prayer list?

Would you please pray for Peter’s ability to wear his night brace and that God would completely heal his sciatic nerve injury so that his foot, ankle and toes would work. Please pray that his next visit to Sloan will be uneventful and that the foot issue will be o.k. Pray for normal growth and function of his entire small body and that his disease will never, ever return.

Thank you for your continued love, prayers and support. Please sign then guest book when you visit. Thanks!

Sunday, September 18, 2005 7:48 PM CDT

We have the best news! Peter had another awesome week; Miss Ardene returned from her vacation on Tuesday and my little friend proudly returned his walker to her. He no longer needs its assistance to walk! A teary eyed Miss Ardene watched Peter walk confidently across the room. She was very proud of Peter and all the progress that he is making and declared that he no longer needs the wheels to get around. Mama was very proud as well and when she left we called Daddy to tell him the great news. Later we headed out for haircut number 4. I just love those haircuts (they are the outward sign of his returning health). The man that cut Peter’s hair was a lot of fun; as I stood there gushing over my sweetheart he would say things to Peter like “Man this chick really digs you” and I’m going to fix you buddy; she won’t be able to keep her eyes off of you (as if I could anyway).

Wednesday we were back at Sloan for a check-up (Missy he was crying in the car while we were waiting to enter the parking garage). Peter is now very much aware of hospital building, doctors, and nurses. He also knows where the ouchy's are located and cries when we enter the finger stick area and the IV room. After Peter had his finger stick and I reassured him that all the ouchy’s were done; the doctor reminded me that they were going to restart his immunizations (yikes, I was wrong) and Peter was not happy about it. He received 2 of the 3 shots that were planned for him. (I refused the one because Peter is still fighting a virus) we spent the next several days giving him Tylenol for fevers and leg pain.

Thursday while Peter was playing with his toys, I ask him to please clean up his cars. He picked up his cars and started counting them as he put them away. He got to 8 without any problems or mistakes (I’m very proud)! Friday Miss Ardene came for some more PT. Peter walked across the driveway with his arms outstretched to hug her. Poor Miss Ardene she’s got it bad (she in love with our little boy). We had the session in the pumpkin patch. It is very difficult to walk in the field. Peter did well and it was a nice change from the living room. That night Dennis and I took Peter bowling. It was such fun to watch his sweet face as he looked around and processed the sights. He bowled very well and thanks to the bumpers in the lane I did too. His favorite part of the night was watching the ball come out of the automatic ball return. Saturday morning Daddy went to NJ to pick up Pop-pop for a long weekend visit. Peter was very excited that Pop-pop was coming because he likes to play with his cane and entertain him (it’s more fun with a fresh audience).

Our new pastor was installed today. It was a great day for the congregation; you could feel the excitement as we look to the future with this new spiritual leader. Several times during the service, which got a little long for a 2 year old, Peter said loudly “O.k. Mama I’m ready to go bye-bye now”! I know there will be lots of other fun moments like this in the future. When Pastor Mike addressed the congregation he talked about some of the great things that are happening at Towamencin Mennonite Church and named the healing of Peter as one of them. There was a reception for Mike after the service and Peter happily showed off his new abilities by walking around, following and leading groups of children and getting involved in a wonderful wrestling match. If you had told me 2 years ago that watching my son wrestle in church would have filled my heart with so much joy I would not have believed you. The comments from the members were great…He’s all boy now, and he sure has a lot of catching up to do!

He does indeed have a lot of catching up to do! He is also still in need of prayer and lots of it. We are still looking for the continued healing of his right foot and toes. Sleeping in the rhino brace at night remains a very difficult challenge for Peter. He says over and over, “no mama, no brace tonight” I can hardly bare it as I make up games so that he will allow me to put it on him. He will need immunization on every visit to Sloan for a very long time. All of his previous immunizations were knocked out by the chemo. He will have scans again in November. Dr. Wexler informed me that Peter would need to be followed by orthopedics starting in January. He had so much radiation therapy at such a young age that he will need to have the growth of his hips and pelvis monitored for possible problems. Please pray that my little boy will grow normally and will not need any further surgeries or bracing. Please pray that his foot will move again and that he will run, play, and grow like a normal, healthy little boy. Please pray for continued strength for Dennis and I to be able to meet Peter’s needs. Thanks for your continued prayers and support. Please sign the guest book!

Monday, September 12, 2005 8:09 PM CDT

Peter’s physical therapist, Miss Ardene, returns from her vacation tomorrow. Peter has a wonderful gift for her (today is her birthday) a slightly used children’s walker. It seams that during Miss Ardene’s travels our little man has mastered walking WITHOUT his walker. Way to go Peter and way to go God! Peter enjoyed his Sunday school class last week. He liked being with the children but did not like being away from Mom for such a long time. We will try it again and if need be Mom will become a Sunday school helper.

We continue with the mini-golf / PT. Peter can now play about 25 holes out of 18. He likes the hole at the top of the stairs (you hit the ball into a pipe and it ends up down stairs) we play that one about 4–5 times. There is lots of great strengthening in all the stair climbing. There are also some holes that he plays 2 times each, like the one where you hit the ball up a very steep hill and around a bend (then Peter walks to the top of the hill and rolls down the other side). The hole where you hit the ball down a hill and then up a hill is a running hole (we hold hands and Peter runs as fast as his little legs can carry him down the hill and up the other side. There are 3 running holes in total. Between the stair climbing and the rolling and running he is one worn out little boy when the game is over. Saturday night Daddy had the opportunity to come and play with us.

Sunday afternoon we went to the Scottish and Irish festival that was held in a nearby town. Luckily for Peter, Mama paid a visit to England in 1982 and brought home a kilt in his current size (yes, we do has pictures). He looked adorable but it was very hot on Sunday so the wool kilt did not stay on for very long. Sunday evening Peter and Daddy spent some time on the computer. Peter says to Daddy, “Dada want to dot com” and of course Dada cannot wait to go on line and bring up noggin.com and watch a little Maisy Mouse.

Today Peter spent lots of time walking in the fields and pushing his cast iron tractors around in the dirt. Playing in the dirt is now one of his favorite past times (this is very different from the sterile world he was living in a few months ago). My Dad drove the golf cart to his destination of choice, I picked what ever was in the fields and Peter yelled, “I play dirt” and climbed off the cart and into the fields.

Peter has not been him self for a while now and we paid a visit to the pediatrician last week. His lab studies were normal and they feel that he may be fighting a virus. We has an appointment at Sloan-Kettering on Wednesday morning so I will run his symptoms past the oncology time and make sure that they concur. Peter will have a finger stick, chest x-ray, and physical exam on Wednesday.

Please pray for safe travel to NY, great test results and an uneventful examination. Remember that Peter’s toes are not wiggling and he is still unable to move his ankle. We really need his sciatic nerve to heal so that he will have normal use of his foot. If normal use does not return he will need to wear the foot and leg brace for the rest of his life. Yes, he can walk with the brace (but I really would like him to have a normal gait and the ability to run and play with the other kids). Thanks for understanding! Some of the other children that we love are in need of prayer tonight:

www.caringbridge.org/visit/hazen (Hazen had surgery today at Sloan-Kettering) it went well but he has a long recovery ahead of him and Mom and Dad are tired and can use your guest book comments to know that people are praying and that they care.

www.caringbridge.org/visit/jennahostetler Jenna is the only caringbridge that we follow that does NOT belong to our cancer family. Jenna is a teenage girl from Ohio that was paralyzed this summer in a diving accident. When I read her Mom latest update I was thrilled to learn that Jenna is regaining movement in her arms. Please Lift Jenna before God’s throne for his complete Miracle of healing.

www.caringbridge.org/me/dylanhartung Dylan is our little Australian friend from Sloan-Kettering. He got a very severe line infection. After several days of antibiotics and no change in his high fever the decision was made to remove the infected line. Dylan’s new temporary line had to be places in his groin because they could not get it into his neck/chest region. Dylan is very uncomfortable and the line will need to stay there for several weeks. Dylan’s family has to pay cash for all the care they receive in America. This will end up being a lengthy hospital stay and at least 2 surgeries. Pray that Dylan’s count will recover quickly so the permanent line can be placed and the hospital visit can be a short as possible.

Our friend Big Ryan (see link below) is in Bethesda MD this week for scans. Please pray that they will be clean and that he and his Dad will has a safe trip back to Nebraska. Pray for peace for his Mom (I know what it feels like to be a Mom waiting for scan results)

Little Grace (see link below) was at CHOP last week for stem cell recovery (her stem cells were harvested prior to MIBG treatment and they are given back following the therapy to help her body recover. She will be returning to CHOP later for more MIBG treatments. This type of treatment is done when other protocols fail. If the MIBG treatment is successful then Grace will be able to go back into a different protocol and hopefully will have a chance for a cure.

Thanks for taking the time to view these sites and to pray for these children. We love them all and they all deserve a miracle.

Saturday, September 3, 2005 9:10 PM CDT

So much has happened since my last update. Miss Ardene (Peter’s physical therapist) has left for a 3-week vacation. So mommy and Peter had to kick our own version of PT into overdrive. Peter has been mini golfing twice since my last update. On Sunday the 21st, with lots of encouragement from Ryan and Grant, he completed 15 holes. That may not seem like much to you but for Peter it's like climbing Mt Everest. He leaves the golf course exhausted and crying. I have to carry him to the car and he falls asleep during the ride home. On his next trip he set a new personal record of all 18 holes. We are very proud of Peter’s accomplishments. He maybe worn out from the course but he does have lots of fun while he’s playing. The course is very windy and hilly. Peter usually hits the ball, and then he climbs to the highest point on the green, when he reaches the top he announces “me roll down”. He rolls back down onto the course and throws the ball into the hole. It’s all about the physical challenges that the course offers him and not so much about producing the next Tiger Woods (although I think he would look great in a green blazer).

On Wednesday the 24th we spent the day at Sesame Place in Langhorne, PA. They have a program in place that allows families of pediatric cancer patient’s complementary admission to the park. We met the Goldstein’s at the park. They are part of our Sloan-Kettering family. Nate Goldstein and Peter went through radiation therapy together. Nate’s Mom and Peter’s Mom have spent lots of hours praying for our precious boys. Spending the day together watching the two of them just be boys was priceless. We enjoyed playing in the water areas and floating on inner tubes down lazy streams. We also took a couple of rides down water slides in tubes. I think the highlight for me would have to be the cargo net suspended about 3 stories off the ground; it is about 300 feet in length. Peter decided that he wanted a piece of it. So off he and Mama went. My amazing little friend climbed that whole thing from one end to the other and then back part way. When he had mastered that he decided that he wanted to take a trip through the rope tunnels that come off of it like an octopus. Well Mom was having no part of being suspended off the ground 3 stories up climbing through cargo net tunnels. Mom was however, very happy to silently pray and thank God for her little boy, his determination, and a day of his life that was filled with joy.

The next day we prepared a dinner to share with the Enovitch’s (see the link below for little grace) they were at Children’s hospital of Phila for MIBG treatments for Grace. The plan was to have dinner and Peter ready when Dennis got home from work and then drive into the city to spend some time together. The Enovitch’s are also part of our Sloan-Kettering family and we sometimes had dinner with them at RMH in NY. Not in the plan for the day was Peter pushing his chair away from the lunch table and having it fall over backwards. He hit his head on the hard wood floors. He took a three-hour nap. I woke him every hour and thought that he was okay. When Dennis arrived home we loaded the car, just as we were approaching the turnpike entrance he started vomiting. After a quick call to the pediatrician we headed to the E.R. They diagnosed him with a concussion and we spent the night waking, and watching him. He was not himself for several days and we missed seeing Grace and her family but dear sweet Gracie you remain in our prayers.

Dennis’ sister Sandy and some of her friends rent a house in Ocean City for a week each summer. On August 30th and 31st My Sister and I took the three boys to spend some time on the beach. Peter had a ball; he loved being out in the Ocean jumping waves. He was passed back and forth from Mama to Nanny to Aunt Sandy. When he saw the next wave coming for us he would yell and laugh. The big kids (Ryan, Grant, Dan & Rebecca made a large hole and filled it with water. Peter and the little kids climbed in and out of it splashing and playing with buckets and shovels. Peter wore his very handsome swim trunks and Auntie Millie took some beautiful pictures of him. Aunt Sharon spent the day relaxing on the beach with us. She tried to take some pictures of Peter sitting in the hole but the splashing was so bad that she feared for her camera’s life and put it away.

They are starting a new Sunday school class for 2 and 3 year olds at our church. Peter will be attending for the first time tomorrow. Some of the children from his Bible School class will be part of it and I’m hoping that he will really enjoy his time with them. He has not had many opportunities to socialize with other children his age. Please pray that he will enjoy the children, be comfortable with the teacher and at peace without Dennis and I present. Peter is still unable to wiggle his toes or move his right foot; this is a sign that his sciatic nerve has not regenerated and healed. Please pray for his complete healing, for toes that wiggle and feet that move and can walk without the use of braces or walkers. Please remember little Grace as she goes through her treatment. She needs a miracle of her own. Also would you please pray for Liam (www.liamjameskane.com)he is part of our AI duPont family. He is under going MIBG treatments at CHOP as well and is in need of a miracle. We thank you for your continued love, support and prayers. Please sign our guest book before you leave. Hello to all the girls on 3CN at A.I. duPont, it was great to talk with all of you this weekend. Thank you all for the great care that you gave Peter while he was there.

Thursday, August 18, 2005 5:16 PM CDT

NED!!!!! NED!!!!! NED!!!!! NED!!!!! NED!!!!! NED!!!!!
PRAISE GOD!!!
We just spoke with oncology at Sloan; Peter’s scans are all NED!

We arrived in NYC on Tuesday afternoon. We had planned on having lunch with some of our Sloan-Kettering Family, but as things sometimes go, we left the house about the time we had planned on arriving. Dennis went on line to check his work e-mails before we left and there were things there that he had to take care of. We called Hartungs and they had plans for the evening with RMH. Kennedy’s were unable to spend time with us either, because Hazen was in the clinic on Tuesday morning and had transfusions and his counts were dropping because of his recent chemo.

Top ten blessings of the week

Blessing Number 10 (a family day of fun)
We headed to Central Park to take advantage of the beautiful weather. We spent the afternoon at the Victorian Gardens (this is a fun packed spot for tots and parents). The place has really nice amusement rides for young children. Peter’s favorite was the train ride; he went on it several times all by himself. He sat in the engine and the caboose. He was very proud of himself and he would two-hand wave whenever his eye caught Dennis or I. Dennis and Peter were on the roller coaster in the last seat with their hands in the air smiling and laughing. I was busy snapping pictures when it hit me that this moment it too precious to see through the eye of a camera; so I stopped snapping and concentrated instead on permanently etching the moment in my minds eye. We stopped at Hands-On (the place where Peter took music lessons). There was a class in session and Peter got to join in. The staff was very happy to see us and the feeling was mutual. Next it was on to RMH to say “hello” to Joanne. We took Peter to McDonald’s for some chicken nuggets (our plan would have been great had it worked). We thought he’s tired from the day’s activity, now lets feed him and let him fall asleep in the stroller; we can dine al fresco in NYC. What a treat! Much to our horror, the chicken nuggets gave Peter a real burst of energy. He was sitting in his stroller next to our table while we ate dinner (his little hand kept sneaking up onto the table to snatch the butter bread away from us). It was not how we had envisioned our al fresco meal, but we got a real kick out of his antics.

Blessing number 9 (a surgeon who is a blessing)
Wednesday was the one-year anniversary of Peter’s admission to Sloan for surgery. As I mentioned in yesterday’s post, Dr La Quaglia (his surgeon) was in the waiting area when we arrived. Peter walk un-assisted into his arms and hugged and kissed him (how do you think he knew that on this special day he needed to thank this very special man)? I don’t know if I ever posted before, what an amazing and special man he is. He goes to the small church across the street from Sloan and has his hands blessed each day before he starts work. He prayed for Peter prior to entering his O.R. last year and when we thanked him for helping Peter, he pointed to Heaven and said the thanks belong there.

Blessing number 8 (contrast down and line in)
Peter drank all 7 ounces of his contrast in record time with very little complaining. When we arrived in the infusion room Nurse Sharon placed his line on the first try. His doctor cleared him, so anesthesia could be administered; and we headed to MRI. We also had a chance to see Tim and Dylan Hartung while we were waiting for the line to be placed.

Blessing number 7 (rides directly into CT asleep)
When the MRI was finished, Peter was taken directly into the CT department, while asleep and unaware of the second scan). He was recovered in a small rolling crib right outside the CT room. We placed him into the stroller and headed up to the 9th floor.

Blessing number 6 (amazing labs and a shortened fast)
We went back to the 9th floor (pediatrics) and found out that all of Peter’s lab values from the day were completely normal, not a single thing out of range! While we were standing there with mouths hanging open, Stephanie from scheduling came up to say that she has e-mailed oncology in hopes of moving Peter’s PET scan up on Thursday. Our Church Family was challenged to fast and pray for Peter on Wednesday and Thursday. We feel especially grateful for their part in the shortening of Peter’s fast by over 5 hours!

Blessing number 5 (coasting thru PET)
We arrived in the clinic at 7:00am. Peter’s I.V. was connected and we were down in PET scan, registered and injected with the radioactive nucleotide by 8:00am. Peter sat on Daddy’s lap for nearly the entire hour prior to the scan reading books and watching the Heffalump movie. We proceeded into scan room, anesthesia was administered and Peter fell asleep in my arms. I placed him on the scan table, Dennis gave him a kiss, and we waited in the hallway for the scan to end.

Blessing number 4 (a speedy recovery)
The nurse removed Peter’s peripheral line while he was still under anesthesia; he does not like tape or needles being pulled off of him (go figure). She took him back to the 9th floor and recovered him from the anesthesia. He was sleeping in the little rolling crib. He opened his eyes said, “where’d Dada go” and “I want a bottle”. We filled his belly with a fine bottle and headed out the door. We ran into Suzan and Hazen Kennedy by the fish tank (a favorite spot of Peter’s) said “hello” to them and headed to echo.

Blessing number 3 (echocardiogram easy as pie)
Peter had an echo about a year ago at Sloan. He hated every minute of it and his displeasure was a torment to me. I was dreading today’s echo for that very reason. The woman who was performing the test was the same one from last year and she had not forgotten the great time we all had! Much to our surpise and delight Peter was an angel. He lay on his back the whole time, quiet as a mouse, smiling and watching TV. When the test was over she gave Peter a bright red matchbox car for being the best boy in the world.

Blessing number 2 (safe travel)
We were in and out of the city in record time on Tuesday and Today. We arrived back home by 3:00pm today.

And the number 1 blessing of the week…
Blessing number 1 (God’s miracle continues)
I called Sloan to get scan results because Dennis was leaving for the airport (for a business trip) and we really wanted to be together and know the results before he left. MRI scans…Ned. CT scans…Ned. PET scans (preliminary)…NED.

If that doesn’t make you want to laugh, cry, believe in Miracles, and love God I don’t know what will.

Thank you for supporting us once again. Your love, prayers and fasting give us hope, peace and the strength we need to continue on this journey and to meet Peter’s needs. Please sign the guest book; love to hear from you!

Please take a look at the links below, little Grace is traveling to CHOP this week and needs your prayers and a miracle of her own. Also, we learned on Tuesday night that Little Maggie got her Angel wings and her family is in need of prayer.

Wednesday, August 17, 2005 9:23 AM CDT

Peter uneventfully drank his contrast this morning. He was rewarded by Mom and Dad with a super deluxe race track that holds two small cars, driven by dogs. They race down two spirals to the finish line. It has real engine sounds and Peter is in love. His peripheral line was placed on the first try (thank you God and Nurse Sharon). Dennis and Peter our on the 11th floor now waiting for the anesthesiologist to start (they are running behind schedule this morning). This means that he will be fasting longer. He will be taken from MRI directly into CT while he his asleep. It works really nice for him because he is unaware of the second scan.

The neatest thing happened this morning when we arrived at Sloan. Dr. LaQuaglia was in the waiting area. Peter walked into his arms and gave him a hug and a kiss. It was one year ago today that Peter was admitted to Sloan for his surgery and tomorrow it will be one year since Dr. L gave him back his life. There are no words to describe how we feel. It is over whelming to both of us.

Monday, August 15, 2005 1:03 PM CDT

Since my last update, Peter had 6-year-old Elizabeth and 4 year old Marissa over for a play date and lunch. They made individual pizzas and had every toy we own out of the closet. All had a good time. August 4th my brother, Ralph and his three girls made it to Pennsylvania. It’s been awhile since I saw Ralph (I believe it’s been 3 tours of duty in Iraq long) trust me that’s way too long for any family. That same day Pop pop Zucca came for a visit. Peter loves to play with Pop pop’s cane and entertain him with all of his shenanigans. The next day Peter entertained his friend Emma (from swimming class) She is 4 years old and is peaches and cream sweet. She loves to play trains and trucks; Peter finds that very attractive in a woman. Saturday was haircut number 3 (still a big thrill for me).

Tuesday the 9th Ralph and his oldest daughter, Margaret were here for Peter’s PT session. Poor Miss Ardene, she had some great ideas for fun and games that would get you up and walking if you wanted to, Peter did not want to. Ralph was very entertained with the whole thing. Peter is doing well with all of his therapy sessions. Speech and Education have been cut to every other week and PT is going to be cut to once weekly. This should free up some more of Peter’s time for entertaining.

My latest brainstorm to motivate Peter to walk is mini golf. During our first visit a few weeks ago he was able to complete 1-½ holes and could stand only with the help of the walker, golfclub, or Mama. During our last visit on August 10th he was able to walk, crawl, climb and sadly drink out of one of the water traps, for 5 complete holes. He looks so darn cute on the course (we will add photo’s). The course is very hilly and winding so every hole is a huge physical challenge for him. He is asleep long before we reach home.

Friday night we had a vist from our new Pastor and his wife. They came to introduce themselves and to meet and pray for Peter. They have ask the congregation at church to fast with Peter during his upcoming scans. We invite you to do the same if you are able.

Saturday night the 13th Dennis and I did something very rare; we got a baby sitter and headed out for dinner. We are not positive but we think it maybe only the second time that someone other than one of our sister’s has watched him. We had a great time and we plan to do it again soon.

Now for the heavy-duty stuff, we leave tomorrow morning for NY. This is a scan week for Peter. Wednesday morning he has a MRI and CT scan. He will have to drink contrast for the scans and follow that with a fast for anesthesia. He will have a peripheral line placed for anesthesia to be administered and blood draws to be taken. The line will stay in his arm over night so that he will not have to undergo a second placement on Thursday. Thursday he will have a very long fast and a radioactive injection for his PET scan. He will be placed under anesthesia again for the PET scan. He will also have an echocardiogram on Thursday prior to the PET scan. These are very long and hard days for Peter and us. Please keep us in your prayers. Pray that Peter will be able to tolerate all that he must endure. Please pray for NED (no evidence of disease on all scans). The echocardiogram is looking for chemo related heart damage. Please pray that there will be none. We do plan on having some fun on Tuesday with a couple of other families from Sloan. Their children could use your prayers as well if you have any room on your prayer list. We will be seeing Dylan Hartung from Australia and Hazen Kennedy from Hell’s Kitchen, NY. They both have caringbridge sites if you’d care to follow them. www.caringbridge.org/me/dylanhartung and www.caringbridge.org/visit/hazen. Thanks for your continued support and please sign the guest book so we know who came to call.

Wednesday, August 3, 2005 10:47 AM CDT

Saturday we took Peter and his cousin Ryan to the Grange Fair. Peter had a blast; he and Ryan went on the moon bounce, inflatable obstacle course, and inflatable sliding board and crawled through an inflatable tunnel that looked like a large red caterpillar. The 4-H clubs were there with cows, chickens, and bunnies. Peter was thrilled with everything but the biggest treat of all was going on his first pony ride. While we were standing in line he kept saying “me turn”. I was very surprised and very happy to watch him reach for a total stranger, sit on a pony, and walk away from Dennis and I without looking back. My heart just cheered for him “well done you normal, happy, well adjust little boy”! I was so proud of him. I know I’m his biggest fan but sometimes I just cannot believe how far he has come and the joy that he embraces life with. There is so much he can teach all of us.

Sunday was the last time that our Interim Pastor’s preached at our church. It was also the first time that Peter walked (unassisted) into there arms. What a Blessing for everyone to witness and what a great send off them. We will dearly miss Pastor Bob and Cindy and Pastor Russ and Ev. They have been a tremendous support to Dennis and I visiting us at duPont and staying with us while Peter was in the O.R. at Sloan. The church picnic was also on Sunday and Peter enjoyed playing games with the other children and collecting candy and peanuts during the scramble.

We took Peter’s cue from his independent pony ride and decided to try a night of independent sleeping. Sunday was the first night in about 2 years that he has been out our bed. He did very well waking and crying only one time because he still does NOT like that darn night brace.

Monday was lots of fun for Peter and I; we did not have any therapist coming to the house so we went up to Bop and Green’s farm (what he calls my parents). Peter picked his first corn and eggplant. He was a great help in the fields and garden. He is a wonderful navigator on the golf cart and his sweet voice and manner is a pleasant diversion when it’s hot and you don’t really feel like picking. We left the fields and headed to the YMCA for some fun in the swimming pool. Peter loves to kick and splash and leaves the pool only under duress.

Tuesday Miss Ardene came for PT. Peter is now walking well without the use of his walker although he still uses it more than not. Ardene ask Peter if he would show her some more of his good walking and he told her “oh, no”. This is not exactly music to your PT’s ears but she laughed and went about getting him to walk and stand anyway. In the afternoon Bop came for lunch and later Green come to the house to play. Peter was very happy to see them and he was running in circles with his hands in the air smiling and laughing. My Mom said “I wonder why he has his hands in the air like that” and I told her “I think he is just praising the Lord”! He certainly has so much to be thankful for. The words to the song ran through my mind lets just praise the Lord, praise the Lord. Lets just lift our hands toward heaven and praise the Lord.

This morning I threw away the last 2 bottles of medicine that I had for Peter. One was for nerve pain the other was a prophylactic antibiotic. I know that Peter’s healing is a rare and precious gift that comes only from God and I have complete faith in Him that this gift he has given Peter will never end. I hope you will continue to pray for Peter’s miracle. Please ask for wiggling toes and strong legs and feet, growth plates that were protected from radiations harm and a long and cancer-free life. Please pray for wisdom for those in cancer research to stop this disease. Thank you for your continued prays and support. Please sign the guest book when you’re here. It really matters to me to know that you are following our journey and that you still care after all this time.

Thursday, July 28, 2005 6:06 AM CDT

It feels like its been way too long since I updated. Last Monday morning my father was not feeling well. Nancy took him to the ER of our local hospital. He was admitted to the ICU and on Thursday morning underwent surgery to implant a pacemaker. He was released on Sunday and by Tuesday evening he was back out in the fields cultivating (you can’t keep a good man down)!

Peter and I went to the library on Monday, July 25th and he got his very own library card. He loved the library it was filled with lots of children, books and movies. We borrowed 4 movies and 5 or 6 books. We were able to find 2 books where the main character is named “Peter”. One is a spotted pig and the other a crocodile. This makes for very interesting reading. Tuesday, July 26th we joined the YMCA. Peter and I went swimming that afternoon. There was a Mom and Dad playing in the pool with their little boy. The Mom was floating him around the pool and the Dad was sneaking up on them and saying, “I’m going to get you”. Peter was very excited and said “I want Daddy to get me in the water”. Dennis is traveling but he will be in the pool on Friday night and there is a certain little boy that he will be “getting”. We signed up for Mommy and Me swimming classes. Our first class is tomorrow morning and I can’t wait.

We had a check up at Sloan yesterday. It was a very long day. We left the house at 5:30am and returned at 3:30pm. Traffic was the pits but the check up was good and that’s all the matters. Peter was watching a DVD on the ride to Sloan and when his movie ended he called "Mom, Mama I need you to restart my movie". Later when we walked out of the rest stop he was yawning I looked down at him and he said "I'm still really tired". I was really impresed with his sentence structure for a 2 year old (but then I'm really impressed with everything he does). They were having a luau in the child life room when we got there. So Peter now has orange and green lei’s and some very nice inflatable beach balls and fish. We skipped the grass skirts. He no longer remembers some of the nurses that used to care for him everyday (I think that is a very good thing). I, on the other hand will never forget the kindness, love and care he received. He did remember Dr. Wexler and had a big hug and a kiss with the noise for him. We took a large bouquet of Nancy’s flowers with us and Peter decided to give them to his friend Wicki. Vicki is the session assistant that always calls Peter “Marcello” when she sees him and lets him pull on her name badge and let it fly back and hit her. It might not seem like a lot to you but in the world of cancer it’s all about the little things. The finger stick made him cry and he does not like having a band-aid on his finger. My nephew Ryan put one on his finger and that seemed to help. His blood counts were great! His platelets are now at 158 (160 is the low end of the normal range) he has very even been close before. When we return in Aug he is scheduled for a CT and MRI on 8/17 and an echocardiogram and PET scan on 8/18. He will need to have another peripheral line placed for the scans (I’m already dreading it) and they will be repeating his immune panel. When the results are back he will start getting his childhood immunizations again. We discussed a need for a pediatric dentist because chemo does some real damage to teeth and his baby teeth are now covered in cavities. I’m hoping that they are small enough to go untreated until his permanent teeth are in place. We also discussed the possibility of a hearing test, which has been suggested by his speech therapist. Dr. Wexler does not feel that Peter had enough of the kind of chemo that caused hearing damage or loss (thank you God). So I think we will hold off on that for little while unless we notice that his speech is not progressing. He and his walker ran all over the offices, playroom and waiting area. This was all to the delight of the amazing pediatric staff of Sloan-Kettering. They cannot believe how much he has grown and how much he talks. Dr. Wexler appeared to be pleased with his independence.

I ran into one of the Mom’s that I met during Peter’s treatment. Her son, Joe had a relapse of his rabdo. It is has now appeared in his brain. This is a very difficult time for him and his family. Please remember him in your prayers.

Thank you for continuing to check on Peter. Please pray for his complete miracle of healing. He is unable to move his toes and foot. He still needs God’s protection of his growth plates or he will not grow and develop evenly from one side of his body to the other. He needs to leave his walker behind and walk and run like other children his age. Pray that his next therapy evaluation will produce results that allow him to stop speech, education and nutrition therapy. Pray that his time in the swimming pool will provide him with increased strength and endurance, enough to drop his PT to once a week instead of twice. Pray that God will give wisdom to those who work in cancer research so that may end this terrible disease.

Saturday, July 16, 2005 10:24 PM CDT

Tuesday morning we loaded up the car and headed to Falmouth MA. We spent the night in a hotel there. The drive was about 6 hours and Peter handled it like a champ. He spent most of the trip watching his Bible School video and doing the hand motions. He filled his belly at the McDonald’s drive thru and then took a nice nap. When he awoke we were at our destination. We unpacked the car and headed to dinner. Peter and his walker were busy entertaining the customers at the restaurant. He had a blast working the crowd but the real fun came when we arrived back at our hotel. It was wrestle with Daddy time and the shouts of joy and laughter made a six-hour car ride and cold rainy weather all worth it. The next morning we loaded the car and took the ferry ride to the Vineyard. Peter loved watching the cars and trucks loading onto the ferry and walking around on top of the boat. The most exciting thing happened up on the deck. Daddy and Peter were watching some sea gulls fly by and one of them “pooped”. Well, he is still talking about it!

We had a great time on Martha’s Vineyard. The weather was the worst but the family time was the best. I have never vacationed during the month of July and been so cold that I could hardly walk down the street. Dennis said he had a colder July vacation once but he was in Alaska (I don’t think that one should count). We left for the cape with great plans for picnics, sailing, bike rides and time on the beach. One day was so cold that we went to a hotel in Vineyard Haven and paid to swim in their indoor pool. There were no picnics or sailing but on the last day of our trip the rain stopped and the sun came out. We were determined to cram as much vacation into our last day as possible. We raced to a bike rental store and loaded Peter into the carrier on the back of Daddy’s bike. We rode for about five miles (from Edgartown to Oak Bluffs) we stopped along the way for a drink of water and to see what Peter thought of his ride. Peter was sound asleep so we reclined his bike seat, gave him lots of kisses, took lots of pictures and recited the phrase of the trip “do you believe he’s still here with us”?

When we reached Oak Bluffs we walked through the shopping areas and found a nice seafood restaurant on the water. It was called Nancy’s and I wanted to eat there because my Sister Nancy is the best sister in the world so anything called Nancy’s can’t be bad. Peter loved the place we ate outside on the upper deck with a beautiful view of the water. Much to Peter’s delight there were several people boating to shore with their dogs in the boats. Peter and I shared a seafood platter (well I got a little of Peter’s seafood platter). My little friend ate all of the fish and most of the clams. Yes, he really did eat the clams! He also ate a big pile of my calamari one night followed by Dennis’ shrimp scampi! He has a new phrase in his vocabulary “Mama more bread please” (this kid can eat) we are no longer concerned about his lack of appetite.

While in Oak Bluff we were able to locate our souvenir Christmas ornaments. Peter has a snowman sitting in a boat holding a lighthouse to add to his tree this year. Dennis and I picked a glass ball with the Edgartown lighthouse painted on it. We stayed in Edgartown and the lighthouse was right in front of our hotel. We put Peter back in his bike seat and peddled back to the bike shop. From there we drove back to our hotel changed Peter into a swim diaper and headed to the beach. He loved the sand and surf. Dad was on photo detail so Mom and Peter spent the whole time playing. The water was cold and the wind was howling but the joy was incredible! Peter took a few magic carpet rides down the sand dunes on his beach towel and posed for many beautiful pictures in the grass on the dunes. He was exhausted from all his fun but still he cried for more as we headed back to the hotel. We took showers and loaded the stroller with all the necessary Peter things. Daddy grabbed Peter and the walker and we head into town (on foot) for dinner. The walk into town is not long but Peter gets such a kick out of his walker and his independence that it does take a while. He likes to step on all the different types of pavement that he can find, bricks, stones, cement and of course water puddles. He likes to step over cracks in the sidewalk and stomp on manhole covers. Touching everything he can reach is a big attraction and he is fond of stopping to smell flowers. His life has been on hold far too long and he has big plans on making up for all lost time (and we have every intention of helping him). His face is so sweet and his smile is contagious. He exudes joy and love. His personality is so amazing people seem drawn to him. Joy is in his heart and God is the ruler of his life. This child is so special and we are so blessed that he remains in our care. We take nothing he does for granted and can find the beauty in every mud puddle he steps in. We took several pictures on the way to dinner and Peter became very tired so he gave up the walker and climbed into the stroller; the night was very cold and he snuggled into his blanket and fell sound asleep. This gave Dennis and I the chance to have a very quiet dinner. We watched him sleeping and again I heard those words “do you believe he’s still here with us”?

Peter awoke back at the hotel room just in time for one final night of wrestling with Daddy. We rode the ferry back to Woods Hole and started our long ride home. Once again Peter did great, watching movies or sleeping. He was very happy that we were going home. Dennis asked him if he liked vacation and he said “no”. He did admit to liking some parts of vacation he liked wrestling with Daddy, playing in the water and on the sand, going for bike rides, going for walks, his wooden train with cars that spell P-E-T-E-R and riding the ferry boat. But, his very favorite part of vacation is the sea gull that “pooped” while we were riding to the Island. Proving once again that it’s the simple things in life.

Monday morning Peter and Green (that’s what he calls my Mom) and I left for NIH (National Institute of Health) in Bethesda MD. Our friend Big Ryan was scheduled for scans on Tuesday and Wednesday. Peter was very happy to see Ryan and his Mom, Missy. Missy was a big help to Peter and I while we were at RMH in NY. Missy was the one person I could trust to care for Peter while I did load after load of vomit laundry or took a much-needed shower. Missy has a daycare back home in Nebraska so she is just the kind of fun person Peter was looking for in NY. She taught him all about finger kisses and kept him safe while I was taking care of his other needs. Missy (and the other Moms that make up our cancer family) is one of the few people who truly understand what this journey is all about. So we went to NIH just to sit with her, to share her journey and to pray for successful scans for Big Ryan. We were able to spend some fun time at the Baltimore Harbor with her and Ryan and his Sister, Robin. Robin donated stem cells for Ryan’s transplant on June 3rd. The final results of Ryan’s scans are not available yet. Jack, Cannon and Dylan also had scans last week. Please pray for NED (no evidence of disease) for all these scans. We are glad to be back home. Peter had therapy on Thursday and Friday. He got his second post-treatment haircut on Friday and had some friends over for a pizza party. We are so grateful that God has provided us with safe travel, wonderful memories and of course a very special Son! Thank you for your continued prayers and support.

Monday, July 4, 2005 10:46 PM CDT

Thursday was another very busy day for us. Peter had speech therapy with Miss Laura, followed by Ed therapy with Miss Fran, and followed by physical therapy with Miss Ardene. But, the most amazing thing happened while Peter and Miss Ardene were playing. He just stood up and walked. He was sitting in the middle of the floor with nothing in sight to hold on to and he just stood up and walked. It was one of those moments for me that will be forever burned in my mind (I will be rocking on the porch of the old folks home and my almost completely gone mind will drift off to the day they held that precious little boy above the c-section drape and then the day he just stood up and walked)! I grabbed the phone and called Dennis to tell him, we were so excited. I will forever be in awe of God’s amazing love and the wonderful gifts he has given to Peter.

Saturday night Dennis was sitting on the porch watching Peter use his fishing net to scoop toys out of his wading pool. Dennis started shouting, “Dawn come quick he walked, he walked”. It was the first time that Dennis had the thrill of seeing it for him self. His voice was electric and his joy was over whelming. I ran outside to see Peter very proudly standing by his pool. He had walked from the porch to the poolside (about 3-4 steps without his walker).

We were at a picnic on Sunday night. There were lots of kids, toys, and swings to play with. Peter was in his glory. Daddy made a few trips down the sliding board and held Peter on the swings. Peter played in the wading pool with a bunch of kids. Last year we attended that same picnic, it was prior to our first visit at Sloan. Peter still had his central line in place and was not able to get wet. We were both exhausted from caring for him and stressing over his future or lack of one. What a difference a year makes.

We continue to praise God for his kindness and mercies, knowing full well that at any moment this can all be taken way. With that in mind we have decided to take a short vacation prior to Peter’s next round of scans. We are leaving tomorrow for Martha’s Vineyard. Dennis has been explaining to Peter that a vacation is a trip that you take with Mama and Daddy and all you do all day long is play with them, because they never go to work. We will eat ice cream and ride bikes and play in the pool. Daddy says, “Peter, do you want to go on vacation”? Peter tells Daddy, “no”. Happiness is a healthy 2 year old. He will be scanned on August 17th and 18th, please continue to keep our small family in your prayers.

We have a friend named Dylan (www.caringbridge.org/me/dylanhartung) He is 6 years old and he is living in RMH in NY with his Mum, Melissa. Dylan’s Dad and his brother Cain are back home in Australia. Dylan and Mel have been at RMH since January 2005. They are very homesick for one anther and I’m trying to help acquire airline tickets for Tim and Cain to come for a visit. If anyone has frequent flyer miles that they can part with please send me an e-mail. It takes about 80,000. to get one round trip, coach ticket from Melbourne to NYC. You must have all 80,000 to donate the ticket. We cannot pool all of our miles to get one. If we are not able to find people with enough miles in the next few weeks I will be setting up a fund at a travel agent so that we can donate the dollars needed to purchase the tickets to get this family back together. Roundtrip tickets cost about $1500.00 – $2000.00 for one ticket. All funds that have been donated to help cover the cost of Dylan’s care can only be used toward the purchase of medical treatments. Please prayer fully consider what this journey would be like and now add separation from your Dad and brother to Dylan’s list plus the burden of all Dylan’s care falls on his very tired and very wonderful Mum! I hope you will help this nice family with your prayer support if nothing else. Thanks!

Tuesday, June 21, 2005 11:06 PM CDT

Get ready because this post will knock your socks off! We have been very busy as usual; Peter had his first post treatment hair cut on Friday morning (yes there will be pictures). He looks adorable. He was wearing a very small blue cape with puppies on it. He liked getting his hair squirted by the water bottle but when the scissors came out things turned ugly. He was very freightened and was sitting on my lap sobbing and asking me to help him. There was a flurry of camera activity and before he knew it the hair cut was over. He was so sweet on the drive home, he was pointing to his head and saying haircut, haircut. I told him that he is a very handsome boy and he sat in his car seat and flirted with me.

The haircut was followed by a 3-month evaluation by the early intervention department. It is hard for me to believe that we have been home long enough for a 3-month evaluation. Miss Fran (education therapy) and Miss Ardene (physical therapy) were both here at the house along with Sue McLaughlin (she was part of his original evaluation team). After about an hour or more of interacting with Peter, Sue said, “If we were evaluating Peter today for the first time he would not qualify for speech, education or nutritional therapy.” He will continue to receive those therapies because a deficit does exist but he is now less than 6 months behind in those areas. I am hoping that by the time he turns 3 years old he will not require assistance in those areas at all. Until the age of 3 he will receive therapy in our home.

Sunday night was the start of Vacation Bible School at our church. I’m teaching Peter’s class this year for the first time. What an experience! There are 7 two and three year olds in the class and when they say it takes a village to raise a child they're not kidding, I think I have 4-5 adult helpers each night. We have a story, a craft, and a snack and then we play. Sunday night Peter was playing with a little boy named Eli. Eli is a very fast runner and Peter was impressed with his gift. When we got home that night Peter was sitting on the kitchen floor telling Dennis all about his night (this is really the first time he has been able to interact with other children like this). He was very excited about singing songs (there are lots of hand motions) and playing with the children. We didn’t think he would ever run out of energy or joy that night. When we went to bed and Peter said his prayers he asked God to bless Eli and then he ask God to let him run and play like he does (are you crying too?).

I guess God must have heard Peter’s prayer because tonight when I was unloading the car in the church parking lot he became frustrated and did not want to use his walker. I told him I would pick him up if he would walk over to me. PRAISE GOD, he left go of his walker and took 3 very big and beautiful steps into my arms (are you crying too?). I had to run into the church and up a flight of steps to get my cell phone to call Dennis and just about everyone in our two families to share the news.

We are so very grateful for every gift that God has Blessed us with on this journey, but it seem that every time we our rejoicing in our Child’s victories another child is struggling. Please continue to pray for Peter’s complete miracle of healing, his toes and foot are not working properly and his walking is a brand new gift. He will have to undergo scans in August. Please check the links below and add Big Ryan and Little Grace to your prayers.

Peter’s friend, Nate was scanned today at Sloan; please pray for clean scans and an end to cancer treatment for him. I have also been informed that one of the children at Sloan is doing very poorly and is in desperate need of prayers her name is Bailee. She does have a caringbridge site at www.caringbridge.org/fl/bailee. For an unknown reason she coded and had to be placed on a ventilatior to breath for her. She is still on the vent but has started doing some breathing on her own. If you visit her site please sign the guest book so her parents know that you are praying and that you care. This journey is tough and your words mean everything to us. Thank you for your continued love and support and please sign our guest book so we know that you still care.

Thursday, June 16, 2005 8:51 PM CDT

Peter is keeping himself and us very busy. This week marked the three-month anniversary of the start of his physical therapy, speech therapy, educational therapy, and nutrition therapy. His therapist’s have an extra evaluation form to fill out this week and one of the program administrator’s will be here tomorrow to evaluate him as well. He has become a little pro at maneuvering his walker. Last night at our local Wal-Mart (my second home) I gave Peter a couple of those Fisher-Price corn poppers to hold and guess what? He just stood there all by himself, no walker, no Mama holding the handles and checking out the poppers. I guess he didn’t even realize he was doing it, but when I started screaming, “He can stand, look at him he can stand” he realized it and dropped the corn poppers and promptly dropped himself on the floor in a heap.

I was so overwhelmed by what had taken place that I ran to the register and bought both corn poppers (determined to re-enact the moment for Dennis when he arrived home from work). When Dennis came in the house we ran into the family room (corn poppers) in hand stood Peter up and place the handles in his hands. He immediately dropped them on the floor and grabbed a hold of my arm clinging, crying, and begging me never to make him stand again. You can imagine what a thrill this was for Dennis. I remembered that on Dennis’ first Father’s day Peter rolled over for the first time. He went from front to back and back to front all on the same day. We were so excited to watch him developing in front of our eyes. Later that day we went to the picture people and had our family picture taken. We plan to return to the picture people this year for another family photo. I am praying that this Father’s day Peter will wow us again by taking a step or two for us.

Today Peter’s friend Lacey spent the afternoon with us. They kids played trains and had lunch together. When lunch was over they put on their swimsuits and jumped into Peter’s new Wal-Mart purchase (super deluxe, two-ring, blow up with a pump) swimming pool. He had a ball. When it was time to take Lacey home we got about 500 feet from our drive and Peter was sound asleep. That was about 5:00pm. It’s now 10:15pm and he is still sleeping. God Bless you, Lacey for making his day happy and for wearing him out!

Please continue to pray for our little boy. I want him to be able to do all the things that the other little boys can do. I love him! Please pray for his leg to heal and his toes to wiggle. Pray that his hip will form correctly and that his muscle graft will take over its new reasonability’s so that he can have the strength to run and play. Please pray that his cancer NEVER returns and that his future scans and doctor visits will be uneventful. Thank you for your continued love and support of Peter and our small family.

Friday, June 10, 2005 8:19 AM CDT

Last Saturday morning; around 3:00am Peter awoke red hot, sweaty and crying. He had a fever of 104. We gave him some Tylenol and called the pediatrician. We were in her office by 9:00am and at the local hospital for a blood draw by 10:30. Peter’s lab work was relatively normal. The Doctor called up to Sloan and went over everything with Peter’s medical oncologist who said “Peter’s immune system is completely intact and you may treat him as you would any other child in your practice” (wow, Peter is a normal child). The fever came and went all weekend long and we never did learn there cause, I guess it was just some “normal thing “ that happens to children.

Tuesday when Miss Ardene came for PT she unloaded 2 small walkers from her trunk. My face must not have looked very bright at the walker sighting, because she quickly explained in detail how Peter will not need it very long and it’s just a stepping stone and so on. Peter took the first walker for a trip down the front porch (forty feet) and back in record speed with a huge smile on his face. Ardene thought that Peter looked very cute with his walker and I guess he does but, needing a walker to ambulate is just one more thing to add to our list of things you never hoped your child would do, need or experience. We are quickly coming to terms with this new addition to our family and remain grateful that Peter is NED, has a leg to stand on, and can now be independent of Mama’s hands to go cruising.

Wednesday morning Nancy and I took Peter to Sloan for his monthly check up (chest x-ray and labs). Things are still going well and the Doctor’s there accepted the copies of our local blood work so he did not have to endure another finger stick. We will return in July for more of the same and then in August Dennis, Peter and I will send a few days in NY for scans. When we left the elevators at Sloan to enter the parking garage Peter and his walker took off down the hall and through the long under ground tunnel system that leads to the parking garage. It has lots of ramps that go up and down and it’s a fast smooth surface. Peter enjoyed his trip to the car and even took the time to race a few of the employees with wheels of their own (rolling carts and dollies). Wednesday evening we took Peter for his first cruise through the Wal-Mart (it will never be the same). Now remember up until this time our little friend has only been able to wreak havoc from the seat of the cart. He was a little slow at the starting gate but quickly realized “I can touch anything I want” and touch he did everything on the bottom two shelves (it was a very long trip). I think he was on his little feet and legs over 3 hours total on Wednesday, which for Peter is a long time.

Thursday Miss Laura came for speech therapy. She has now made a formal recommendation that Peter’s hearing be tested. Apparently he is missing some sounds that he should have and she feels that this could be due to a chemo related hearing loss (will this nightmare ever end)!!! Peter spent the rest of the day being a farmer with my Dad and Aunt Nanny. His car seat was attached to the seat of the water wheel planter and he and Nanny were planting vegetables and flowers. After a short nap he was ready to cruise the Wal-Mart aisles (I fear this will be where I spend my summer)!

While I was preparing breakfast this morning Peter came walking out into the kitchen behind a child’s push toy as if nothing was ever wrong with his leg. Perhaps the walker isn’t such a bad idea. We are waiting for the arrival of Miss Fran & Miss Ardene.

Please continue to pray for Peter’s healing and please visit the links below, Ryan has his stem cell transplant last week and Grace is preparing to start a new treatment at CHOP. Thanks for your continued love and support and please sign the guest book when you visit, it means a lot to me.

Monday, May 30, 2005 8:57 PM CDT

Peter has been very busy…our three days in NY were very tiring and very trying. Peter did not want to drink his oral contrast in spite of the fact that we placed it in his favorite iced tea, Rosenberger’s! Mom brought a few oral syringes with her and between Mom & Dad’s work and the bribes (new toy trains anyone). We got all the necessary medicine into our little man. The next step was the trip to the I.V. room. Our prayers were answered bright and early. I ask the ladies at our church to pray that Nurse Jen would be working that day (she is Mom’s nurse of choice for peripheral line placement, I call her old one stick Jen) and she was. Once again she placed Peter’s line on the first try. Peter is getting very strong and it’s now hard for me to hold him down while the line is placed. Cute little Nurse Gail was Jen’s helper and they are a great team. They placed his line, drew his blood and connected his I.V. fluids. We then proceeded to the doctor’s office for clearance for the scans. After we got the all clear we headed to MRI, Peter was given anesthesia and he fell asleep in my arms. I left him in the MRI machine and joined Dennis in the waiting area. The nurse and the anesthesiologist transported Peter from MRI and into the CT department while he was still asleep. This works really well because Peter is fasting and he does not have to wake-up and be hungry and then wait for the next scanner to be available. When the CT was done we went up to the 9th floor to a recovery area so Peter could sleep off his anesthesia. We left the peripheral line in Peter’s arm in hope that he would not have to undergo another stick in the morning.

Before long we were out in the streets of NY and Dennis was in line at the Mister Softee truck. We all enjoyed an ice cream and then headed to the Central Park Zoo. We walked to toys-r-us to make a train purchase but we were not successful. We had dinner at Carmine’s (an Italian restaurant that Dennis and his brother, Mark are crazy about) young Mr. Zucca feels the same way about Carmine’s. He ate so much butter bread and pasta that we were stunned. I was very happy to see the little man fill his tummy because Thursday night’s fast started at 9:00pm and lasted until Friday at 3:00pm. PET scans are hard on the little guy. The peripheral line stayed in place and was functioning fine on Friday. Peter received a radioactive injection and then we waited one hour for him to be scanned. After the scan was complete we returned again to the 9th floor recovery area. When Peter awoke I made a dash to the physician’s office to try to get scan results from Thursday’s scans. There were no results available so we headed home from NY in Fridays rush hour traffic (YUCK)! We made it home in just less than 4 hours. When we were unloading the car the phone rang. The caller ID showed Dr. Wexler’s name and PERSONAL phone number. My lips went numb! A call that fast couldn’t be good news. I ran outside with the phone (Dennis was unloading the car) the look of fear was all over his face when I mouthed Dr Wexler’s name.

Once again we were blessed! This phone call was bearing only good news. Our miracle boy is still doing o.k. We are grateful for the prompt manner in which the doctor’s at Sloan communicate scan results. Getting results the same or next day is very kind!

Peter has been very busy with all of his therapy and he is trying to adjust to his new Rhino splint. That is the splint that holds his legs up and open while he sleeps. The idea is to keep the ball in the socket while his is not up and running around. He hates it!!!!!!! He cries all the time and has not been able to wear it for more than 5 hours a night (this is partly because we all need sleep) I remove it when I can no longer bear his sorrow and my own sleep deprivation. Peter is also recovering from another round of bilateral ear infections and a sinus infection. I was sick on Friday and my sister, Nancy had to come and get Peter because I could not take care of him. When they were walking out of my bedroom Peter looked back at me over Nancy’s shoulder and waved. He cheerfully added, “Bye-bye I love you Mama” Well if that doesn’t beat all! I’ve never heard anything so precious in my life. Thank you God for my Son! Friday night was firework’s night at our community fair Dennis and Peter went without me because I was still under the weather, but precious Peter had the sun shining in my heart! That is another one of those moments that I will remember while I’m rocking on the front porch of the old folks home.

Saturday morning Peter and I got up early and put on our matching vacation Bible school shirts. We had a big day ahead of us. Aunt Sandy was bringing Pop-pop Zucca and cousins Dan and Rebecca to watch the Harleysville parade. Peter and Mama were on the Bible school float. Peter stood on the wagon next to Janelle; she is 3 years old and is a very good waver. Peter did some fine waving and when the two of them ran out of steam they held hands and danced to the Bible school music. I was very proud and so were Aunt Sandy, Dan, Rebecca, Pop-pop, Aunt Nancy, Grant and Dad!

After the parade Peter and I met the family at the fair. Peter enjoyed all the rides and had the opportunity to wave and yell to Pop-pop every time he went past him. We had a Memorial Day breakfast this morning for about 40 people. This may seem like a large breakfast to some of you but we are long over due for some happy holidays. Last year at this time we were inpatient at AI duPont and there was very little hope for Peter’s future.

Thank you for your continued prayers, love and support. Peter will need them for his entire life. We will be returning to Sloan next week for a check and in July. In August Peter will be scanned again. Please pray for his ability to tolerate his leg splint and his nighttime hip splint. Pray for healing of his nerves and muscles and for the return of wiggling toes and strong feet and legs. Pray that his cancer never returns and that his life will full, healthy and happy. Please check in on Ryan and Grace (see the links on Peter’s page) Ryan is undergoing a stem cell transplant on Friday and Grace’s last scans were not good. Please add these very special children to your prayers. We love them very much!

Friday, May 13, 2005 11:28 PM EDT

Peter’s scans ARE clear. NED (no evidence of disease)!!! We received a call this evening from his doctor with the good news. Dawn will update Caring Bridge tomorrow with more details.

Monday, May 9, 2005 7:47 PM CDT

Peter received his right leg brace on Friday April 29th. He is adjusting to wearing the brace and I am now able to put it on his leg with little or no tears. He does not like to walk with the brace on his leg (but he does walk much better when he’s wearing it). We also had an appointment with Temple orthopedics on April 29th. Peter’s hips were x-rayed and the film shows that his right hip is not forming properly. The ball is not at the correct place inside the socket. We are hoping that this dysplasia, as it is called, is the result of muscle changes and not radiation changes. Muscles can be strengthened (we hope) but growth defects caused by radiation are a much bigger problem. Peter will be fitted with a splint for his hips, he will sleep in it at night and we hope that is will stop or slow down the progression of his dysplasia (if it is muscle related).

Peter is in love with his therapy team. He can’t wait for them to come through the door with their bags and boxes of toys and get down to the business at hand (playing)! He is still exhausted each time they leave. Last Friday when Ardene pulled out of the driveway Peter stood in the kitchen doorway, he watched her car drive down the street, he was waving and calling out her name. He fell asleep in the car on the way to the grocery store and was smiling and saying her name in his sleep.

Last year Peter was inpatient at A.I. duPont on Mother’s Day. It was a very difficult day for me, we had been told so many times that he would not live and I never thought that there would be another “happy” Mother’s Day for me. Saturday morning Peter and I met Aunt Nanny, Uncle Jamie, Ryan and Grant at Clemens’s grocery store. They had a Mother’s Day cake decorating party there. Peter was very happy to be part of the festivities. He had several bags of icing (he picked 3 or 4 very pretty colors) and decorated the most beautiful cake you have ever seen! His little fingers were going a mile a minute in and out of the icing (it sort of resembled a pastel mine field when he was done. Peter was also blessed with an eye for pretty flowers and I have a great big, pink hydrangea in my flowerbed and some white tea roses on the kitchen counter.

This afternoon Peter and I were holding hands (just one hand) and walking in the yard. When Daddy came home from work he and Peter held hands and carried the mail out to the mailbox. He is very proud of his mobility and is becoming very independent. He likes to use the kitchen chairs like a walker and he pushes them across the floor, climbs up on them and gets into all kinds of trouble. He has decided that he is too big to sit in a high chair and no longer needs any help with feeding himself. He mastered the fork and spoon a long time ago so there is no need for us to be involved.

We have physical therapy tomorrow afternoon and on Wednesday we will travel to NYC. Peter has a CT and MRI on Thursday and a PET scan on Friday. Peter will have to endure fasting, drinking contrast, radioactive injections, placement of lines, and anesthesia. We will endure watching him got through it all and then the waiting for results (the stress is already on my face).

While I was blessed with my son for another Mother’s Day there were many Mother’s who spent Sunday with a very painful and empty place in their hearts. I have not forgotten them and I hope that you will continue to lift them in prayer (Jean, Sue, and Liza you are amazing and I Love you)!

Please pray for Peter’s ability to adjust to his leg brace and for the upcoming fitting of his hip splints. I know that God can still provide us with a complete miracle of healing. We are still asking for wiggling toes and the use of his right foot and ankle. Please pray that the scans will not be too difficult for Peter and that we will once again be blessed with NED (no evidence of disease)!

Tuesday, April 19, 2005 7:21 PM CDT

Peter did very well last week with his speech, physical, and educational therapy. His walking has improved greatly and we are looking forward to the delivery of the brace for his right lower leg and foot. We did not go to Temple Orthopedics on Friday because Peter was exhausted from the workout he had with Fran and Ardene during therapy. He slept for about 2 ½ hours after they left. I never like to wake him if I can reschedule his appointments in a reasonable period of time.

Sunday morning we all walked down the center aisle of church together. It was a wonderful moment for our family I ask Dennis if he saw everyone’s faces lighting up as Peter walked past their pews”? Dennis was unable to look up at their faces because it was really very overwhelming for him. Sunday afternoon we went to his sister, Sandy’s house for a family reunion with some relatives from Italy. Peter was not himself and by the ride home he was whimpering and crying in his sleep. This reminded me so much of the start of our journey and I rode home in tears. Sunday night Peter was awake every hour crying and soon became congested. Monday morning I called Sloan to get his chest x-ray results and to speak to the nurses about his “cold” The good news was that his chest x-ray was NED (no evidence of disease). I was told that Peter would in all likelihood be able to get over this cold on his own and not to be concerned unless his temperature rose above 103. Dennis took Peter upstairs for a steamy shower before bed to help him with his congestion and breathing. We got him dressed in his PJ’s and took his temperature; it was 103.2 (yikes here we go again). We were back on the phone with Sloan at 9:00 pm making plans for our second unexpected trip in one week. Nancy, Peter and I left for the hospital at 6:30 this morning. Dennis put her boys on the school bus and left for work.

It turns out that Peter has severe bilateral ear infections. The doctor called in an antibiotic to our home pharmacy and we were back in Vernfield by 1:00pm. Peter is already feeling better and has started talking again and is drinking small amounts from his bottle (he lost 5lbs since our appointment last Tuesday). We will cancel his therapy appointments for the rest of this week to let him rest.

The best part of our day aside from the gift of ear infections (a minor issue compared to Peter's past problems) was a ride on Grampy’s tractor.

Thank you to the people at Towamencin Mennonite Church who answered the prayer chain call and once again lifted Peter before the throne of God for healing.

Tuesday, April 12, 2005 5:00 PM CDT

You can breathe now! His oncologist and surgeon both saw Peter today. They agree that the swelling in his leg is due to lymph edema (a collection of fluid that causes swelling). You may know a woman that had breast cancer surgery who has this same type swelling in her arm. They did not feel the need to move up his scan dates (he will be scanned on May 12th & 13th) or to make any changes to his therapy. Peter had a chest x-ray today and we hope to have the results tomorrow. We are once again in search of NED (no evidence of disease)! He also had a finger stick today so that his blood counts could be checked. His platelets have gone up to 127 not in the normal range yet but much better than last months count of 57.

It was great to see all of the nurses, doctors, and support staff at Sloan today. They have been a very big part of all of our lives. We also saw some of the families that we went through treatment with. We continue to lift all of these people before God’s throne for his amazing Blessings and healing.

He will have speech therapy on Thursday and PT and ED on Friday. We will also see Dr. Alburger with Temple Orthopedics on Friday. I want Peter’s hip and leg re-evaluated by Dr. Alburger because there is a possibility that Peter will develop hip dysplasia because of the type of pelvic surgery he had. I am hoping that he will catch any changes early and will be able to direct his PT, Ardene, if he needs changes to his therapy.

Dennis is traveling, Peter is asleep and Miss Bailey Jayne is tied out in the front yard. The peace is wonderful and I’m about to curl up on the couch with HGTV and just chill out.

Thank you for your love and support. Please continue to pray for Peter’s healing and for a carefree month (till our next scans) of joy for us. Please pray for Ryan and Grace whose links are below this entry and for www.liamjameskane.com a young friend from AI duPont. Liam’s last studies were not the best and like Ryan and Grace he can really use your prayers.

Friday, April 8, 2005 7:52 PM CDT

Last Friday was cast day for Peter’s right leg. It went something like I expected, however I didn’t realize how strong Peter has become (it took 3 adults to hold him down). The entire time he was screaming and crying for his Mom to save him (instead I was one of the holders). It breaks my heart even though I realize the need for the struggle. It will take about 3 weeks for the brace to arrive. The guy who did the casting feels very strongly that Peter will do very well once the brace is on his leg.

We went to music class on Tuesday morning and had PT in the afternoon. Peter really loves Ardene and he claps his hands when I ask him if he wants to play with her. Wednesday we had a nice cookout on the grill, we invited my cousin Stacey and 7 of her 9 children (NOT A TYPE-O) to have hot dogs with us and to play with Peter. The children played ring-around-the-rosie many times and yes my little friend was holding hands and walking around the circle like all the other children (PRAISE GOD!). Thursday morning we have speech therapy with Laura. Laura also comes with a box of toys and Peter thinks that she is just great! Friday mornings are busy with PT followed by ED therapy. Fran is the Friday ED teacher she has lots of toys and she brought an arts and crafts project today. Peter painted a beautiful butterfly (it is proudly adoring the refrigerator). All of the therapy play activity really tires Peter out and he takes 1-3 hour naps after the ladies leave.

Today Ardene and I discussed Peter’s right leg and how it has become very swollen. We will pass on PT next Tuesday and will be seen by the doctor’s at Sloan instead (Yes it does frighten me!)

We had a wonderful surprise this week Peter received a very special Teddy Bear in the mail. One of his Doctor’s from AI duPont sent him a bear from the Build a Bear Workshop. Thank you Dr. Rebecca. It is such a wonderful gift to have the people at duPont still caring and still praying for Peter. We will return sometime soon for a visit.

Please continue to pray for Peter’s healing. His toes and foot are still not working properly and now we have the issue of the swelling in his entire right foot and leg. There are some other special people in need of prayer. Please check the links below for updates on Big Ryan who is now in Maryland preparing for a transplant, Little Grace who has had some tough results from her last scans. Grace’s Mom, Dawn could really use some prayer support. Angel Haley’s parents are traveling to St. Jude’s for their Memorial service. Also please visit www.liamjameskane.com, he is a young boy we met at duPont and his last scans were not great, forcing his parents to make more difficult decisions about his care. A neat site to visit is www.caringbridge.org/me/dylanhartung, he is a little boy we met at Sloan. He and his Mum traveled from Australia for the wonderful care in America (we are so Blessed to be here). Please remember the families who are still facing the sorrow of losing their children. Evan passed away in February and Javier passed away in March and last week www.caringbridge.org/mo/bretbrady.

Thank you for continuing to lift these families and ours before the throne of God. This is a very hard journey and we really need all the prayers and support we can get. Also could you please sign the guest book it really does matter to us!

Tuesday, March 29, 2005 10:20 AM CST

Success…Peter finally played with Ardene! We had physical therapy this morning at 7:45. Peter was wide awake and feeling his oats. He was shy for a minute and then before I knew what hit me he was climbing into Ardene’s bag of toys and had no time for his Mama. The two of them played and played. Ardene held boxes high in the air so that Peter would have to stretch and reach to put things in them. They had small colored tiles flying through the air, and then they were retrieved and placed through a small slot in a box. Ardene has a bug that vibrates and when placed into a plastic box of small toys they dance and hop about (much to the delight of a little boy). Ardene took Peter’s stuffed animals and cars and had them racing down his sliding board.

She will return on Friday afternoon with an orthotist (a person who makes braces). The two of them will evaluate Peter’s right foot and leg. Then Ardene will leave the house because we don’t want Peter to associate her with the next step. The orthotist will place a plastic barrier on Peter’s foot and leg then a fiberglass cast is placed over top. When the cast is hard it will be cut off of Peter’s leg and taken back to the shop to be used as a mold for making Peter a custom brace to aid in his walking. I hope to have my sister’s help on Friday to hold Peter still as I anticipate that he will not care for the events of the day.

Another one of the children with cancer passed away yesterday (www.caringbridge.org/mo/bretbrady). Bret was 3 years old. Please keep his family in your prayers as they face these very difficult days. Please continue to pray for Peter’s miracle of healing (toes that wiggle and legs that walk. We will be returning to Sloan in April for scans. Please ask God for peace and strength for Dennis and I as we face scan time again.

Friday, March 25, 2005 6:44 PM CST

Peter had physical therapy on Monday and Friday afternoon, both days he was sleeping very soundly when Ardene, his therapist, arrived at the house. We spent some time going over scheduling and some handouts for me (they show me how to help Peter use his right leg), but inevitably we had to wake him so he could play with Ardene. Ardene brought lots of neat toys with her but unfortunately I enjoy playing with her more than Peter does. I hope this will change next week with his Tuesday appointment (it’s in the morning and I’m hoping that Peter will be wide awake and ready to roll).

We didn’t have music class this week because of the Easter holiday. We will resume that fun next Tuesday. I’m still waiting to hear from the speech therapist and the education therapist. I hope that by the end of next week Peter will be on their schedules as well.

Tomorrow afternoon we are taking Peter for his Easter pictures with a live bunny (if all goes well the bunny will still be live when we leave). Peter his a pair of light blue and white plaid shorts, a light blue golf shirt, an argyle sweater and argyle socks (it’s so cute I can’t stand it).

Today Dennis and I were remembering where we were on Good Friday last year. The three of us were in the chapel at duPont hospital because it was a chemo week for Peter. We prayed that his chemo (especially the bags that ran on Good Friday) would be especially miraculous and that all of his cancer cells would be destroyed. We were discharged late on Easter Sunday (we missed every single holiday or special occasion for the entire year), but God was gracious to Peter and his next scans were good. We hope that you will continue to pray for Peter’s complete miracle of healing. His toes are not wiggling and he is unable to walk.

We hope that the amazing gift of the Easter miracle (Christ’s resurrection) will fill your heart, home and life with hope, joy and peace. For God so loved the world that he gave his only son. John 3:16

Saturday, March 19, 2005 2:14 PM CST

We left cold Pennsylvania on Wednesday morning and arrived in cold and rainy Florida in the afternoon. Peter was an angel on the plane, he slept through the flight and was still asleep in my arms when the plane landed and pulled up to our gate. He loved the airport; he watched all the planes and luggage caravans going past the windows. Peter and Daddy played in the rain while we waited for our rental car. Playing in the rain is a big treat for us (Dennis had to admit when they first darted out into the shower that his heart was pounding because he thought “Oh my word his lines could get wet”, “what if his dressing falls off or he gets an infection”. Sometimes it is still hard to believe that Peter is just a little boy not a cancer patient. Thursday we went to the Magic Kingdom. Peter loved riding everything from the monorail to the flying Dumbo’s to the steam train. We were very surprised at his Zest for the park. We almost didn’t go to Disney. Our plan was to play with Peter in the swimming pool at our hotel and take him to Sea World because he loves animals. Fortunately for us God brought the rain (and a cold swimming pool) to our vacation or our little friend would not have had the opportunity to realize his love for speed. We thought is would be fun to start our first morning with a character breakfast, so when we got to the Disney properties we headed for the Grand Floridian and the 1500 parke fare restaurant (this is where Winnie the pooh and his friends hang out). We were waiting in line to be seated when the most amazing thing happened Winnie the Pooh walked past the line to say “Hi” to some children. Peter let out a scream of terror (I tell you what if that child could walk we still would not have caught up with him). We went to plan B and had a burger in the park.

Our next stop was at Sea World. We walked through the shark exhibit and then had lunch at the shark grill; we sat right in front of the aquarium. The sharks were swimming all around us while we ate. Peter had his favorite, spaghetti; it was served with a plastic shark cozy that fits around his baby bottle. It is quite a sight watching him drink his bottle with crossed eyes while he stares into the mouth of a shark (he will most likely require years of therapy as a result).

When Dennis and I were in Florida for our honeymoon we went to the Disney market place and rented a small boat (Captain Zucca really wowed me with his nautical prose he yelled “ahoy there” to people who were passing by and I laid on the floor of the boat and laughed). Well, we decided it was time to show Peter what his old man is made of and we rented a small boat again. Peter was delighted to be out on the water throwing popcorn at the ducks. We also purchased a souvenir from the Christmas shop at the marketplace (we buy Christmas ornaments for our tree when ever we travel). Last year when we were in Disney we purchased a large red ball with ears that reads, “Peter Marcello’s 1st trip” the ears say April 2004 on them (we expected it would be his last trip as well). This year we purchased the same large red ball that reads “Peter Marcello’s 2nd trip, a celebration of life” and the ears say March 2005 on them. I would like to go back for the May 2050 trip with Peter’s children and buy them all large red balls with ears for their trees.

We ended up spending one more day at the Magic Kingdom so that Peter and Daddy could ride on the Mickey Mouse Motor Speedway. They looked so cute coming around that track (I was very proud and was wildly snapping pictures). We also rode the astro-orbitor (for those of you who have not been in the park this is a children’s ride high above the park and the kids can control the height of their rocket ship. Dennis and I were green when we landed and we told Peter that the ride broke and we headed on to safer ground and slower rides. We stayed in the park just late enough to watch the spectra-magic parade. Peter loved the bands that played at the start of the parade and all of the brightly lit floats. He fell asleep in his stroller and we headed back to our car. This trip was a wonderful break for the three of us. It was the most fun and rest we have had in a long time. There were a few occasions when our minds drifted back to the trip we took in April of 2004; those occasions were tearful and filled with disbelief. Disbelief that we have traveled this sad journey and disbelief that God has showered Peter and us with such incredible blessings.

We retuned home on Monday evening, Aunt Nanny, Ryan and Grampy picked Peter and I up at the airport (Dennis took another flight into Atlanta for business). It was nice to be back home but Tuesday we had to step back into the reality of our world. Peter had his early intervention evaluation on Tuesday afternoon. A group of four women came to our home and played with Peter and observed his interaction, speech and physical abilities. When everyone was done they went over their recommendation with me regarding Peter’s therapy needs. Peter will have physical therapy twice a week, speech therapy once a week, education once a week, and food or nutrition once a month. It is hard to believe that this little boy who came into the world so perfect and with no cares or problems could be in need of so much care (the evaluation team and their recommendations are in all honesty what we expected his needs to be). The experience was wonderful the team is very caring and very positive (I am looking forward to starting all the therapy).

Thursday Nancy and I took Peter back to Sloan for a check-up. Everything was fine (although we are waiting for the results of his chest x-ray to come back). The nurses and doctors were happy and excited to see Peter. Some of them didn’t recognize him with the eyelashes, brows and hair! We saw some of our old friends like Nate and Aliza (Nate received a blood transfusion and had a reaction so he was sleeping off his antihistamines). Please pray for Nate’s healing and for his treatment to end! We stopped at Hands-on (Peter’s old music class) and dropped off some pictures for the staff. It was great to see you again Amanda and Lisa, we miss you all and continue to be very grateful for your kindness and friendship. You were a wonderful blessing to Peter and me. We will be returning to Sloan in April for the dreaded “S” word, scans.

Friday morning we went to New Jersey and picked up Pop-pop Zucca. He is spending the weekend with us. Today Daddy and I and Pop-pop took Peter to an Easter egg hunt at our church. We took Peter to this egg hunt last year (we cried a lot because it was his first and last egg hunt). This year we took about three pictures and there wasn’t a sign of a tear anywhere. We will have breakfast with Pop-pop and will attend Palm Sunday services with him then Dennis will take him back home.

We wish to thank all of you again for your continued love support and prayers. We hope that you will continue to lift Peter to God’s throne for a complete miracle of healing. I will be updating more regularly his prayer needs and information regarding his therapy sessions. His first physical therapy session is Monday afternoon at 4:00pm. All early intervention care is given in our home, which is really nice for all of us.

John 12:12

The next day, the news that Jesus was on his way to Jerusalem swept through the city. A huge crowd of Passover visitors took palm branches and went down the road to meet him. They shouted,
Hosanna:
Blessed is the King of Israel that cometh in the name of the Lord.

Jesus found a young donkey and sat on it, fulfilling the prophecy that said:
Don’t be afraid, people of Israel.
Look, your King is coming, sitting on a donkey’s colt.

Monday, March 7, 2005 7:23 PM CST

Last Saturday we decided to take our little friend tubing. The weather was very warm and there was little or no wind blowing. We got the tubes out of the basement and bundled up our bundle of joy. Dennis and Peter took the first ride down the small hill in our front yard (I ‘m not sure who had more fun). Before we knew what hit us we were out in back of the barn tubing down the barn-bridge hill. The best ride was the final one, Dennis had Bailey Jayne on his lap and I had Peter, we sat next to each other on the tube and held on for dear life.

Dennis left Monday morning for the airport and didn’t return until Friday night. Each evening my furry friend and my fuzzy friend waited at the door with sad faces. Friday night when Dennis returned home they were both very excited. The neatest thing happened while Dennis was away, Peter’s hair started to really come in, you can see the outline of his hairline and it is all filled in with brown fuzz (sort of like those teddy bear buzz cuts our parents gave my brothers on the back porch each summer). Dennis was very overwhelmed when he saw him and we spent a minute just looking at Peter and crying. He really looks like our little boy again.

Saturday we ran a lot of errands and prepared for the big party. Peter has gained enough weight to out grow his swim diapers (I was very happy to purchase some larger ones). Sunday after church we ran around picking up 4 birthday cakes, 3 vegetable trays, 2 fruit trays, and cutting up 6 pounds of ring bologna, 3 pounds of pepperoni, and 6 pounds of cheese. The good people at Herr’s foods shipped Peter 5 cases of chips and pretzels for him to share with his friends. We met our church’s kitchen ladies (and gentleman) at the YMCA. They were kind enough to help set-up for the party and to man the kitchen during the party so that I was free to play. It was a really wonderful night for us. It has been a year or more since we saw many of our family and friends. Some of you we met for the first time. You followed Peter on caringbridge and we knew your names from the guest book only. As always, the network of God’s people and the love that they have for this little boy that they have never met humbles me.

Peter spent most of the evening in the pool. We had RSVP’s for 80 swimmers and my fuzzy friend was not about to miss out on the fun. Many of the non-swimmers sat on benches outside of the pool area. There were large windows (just right for Peter watching). The kids had a blast and the adults enjoyed sharing their stories about following along with Peter’s journey. The atmosphere was joyful. For those of you who missed this year’s festivities, stay tuned for next year’s plans. Number three will be as big of a deal to us as number two. We want to thank all of you that attended, especially dear to me was the visit from Jean Brady, Angel Haley's Mom, (Thanks for coming Jean, you are the most amazing Mom and I am so thankful for your example and friendship during this journey) We received so many nice cards, gifts and donations to the charities that we listed on our invitations and we are grateful.

When we returned home from the party I ask Peter if he liked his party and he told me “no”. I ask him if he had fun swimming and he said “yes”. He also liked playing with the children and eating cake and pretzels (as our luck would have it he liked everything but “the party”.

This morning Peter went with Aunt Nanny to play with the children she baby-sits at Covenant Presbyterian Church in Vernfield. He had lots of fun and spent a very large part of the time holding on to and WALKING behind one of the nursery’s walking toys (she was very excited when I picked him up). When we returned home I took Peter and Bailey Jayne for a walk. We were not far from home when the warm sun and wind lulled my little friend to sleep. He missed the red tail hawk in the sycamore tree and the sound of the Indian Creek running through the Ziegler’s pasture. He missed the red and white beauty of Annie Benner’s farm high on the hill of Old Sumneytown Pike. He missed the view of Grammy and Grampy’s farm and ours from the top of Orchard Lane. He silently slept as we walked past all the places that I love. I found myself daydreaming about our up coming summer, running through the Ziegler’s pasture with my little boy holding my hand (we are out hunting for tigers) and we come across a big one named Bailey Jayne, we catch her in our trap and we share our cheese sandwiches with her. Another day we put on our old sneakers (the canvas ones with the holes in them) and we walk through the creek with a net and container fishing for whales (or tadpoles) and before you know it “all the places that I love will belong to Peter too!

Thank you all for caring about us and especially for lifting us in prayer, your love and concern has lightened our burden. Please continue to pray for Peter’s healing and his complete “miracle”, our journey has not ended and we will continue to update caringbridge. The early invention people will evaluate Peter on March 15th. They will decide what his therapy needs are and will organize that part of his care. We will be returning to Sloan-Kettering on March 17th for a follow-up visit. I believe that Peter will be scanned again in April.

We want to send a special “thank you” to Blanche and Ken Freed and Charlene Frederick for helping with manning the kitchen Sunday night. We also want to thank the people at Herr’s foods that saw Peter eating their chip on caring bridge and donated the chips and pretzels for the party. We want to thank the ‘powers that be” at the Indian Valley YMCA for setting up and breaking down the rooms for the party and for their generous rates for the use of the facility. Most importantly we thank God for the precious little life that we were celebrating, for all of your support, and the wonderful gift of Great-Aunt Dolly’s release from the hospital the day before the party (a very big deal to her).

Saturday, February 26, 2005 7:41 AM CST

Peter had another really good week, he changes so much everyday. His eyelashes are beautiful, dark brown and very long. His eyebrows have made a good showing and his head is fuzzy like a peach. He has mastered pulling himself to a stand and with some help and encouragement he is able to take steps. Monday morning we had chiropractor appointments and then it was off to the pool. Peter loves the water. He can’t get in fast enough and he is so busy that he’s exhausted when we get out. Tuesday was supposed to be music class but he fell asleep on the way there. I gave him a 15-minute window of time to wake up in the car or go home. We ended up heading home. I washed the car and then called my Dad for a little “back seat baby sitting”. I got my grocery shopping done and everything put away. We took a trip to the post office and dropped off the birthday letters to our church mailboxes. I dropped my Dad off at home and Peter and I went home as well. I carried Peter into the house (still asleep) and laid him down on the pillows. He continued to sleep for at least another hour. Thursday Dennis left for Atlanta; the snow caused all kinds of flight problems and Dennis’ flight home was cancelled. My Sister and the boys came to our house for a sleep over. Peter was very pleased! The boys had a two-hour school delay and I made a big breakfast for all of us. We invited Grampy to come down the hill and join us for breakfast. The boys had a great time together eating breakfast and playing. Peter joined Ryan for his morning shower, lots of toys and lots of water, just perfect for our little fuzzy friend. When the boys and Nancy left for school I ask Grampy to hold Peter so I could shovel the driveway open. When I came in from shoveling they were both fast asleep in the rocking chair (life is good)! Dennis made it back to Philly and into the office on Friday afternoon. My cousin Trish stopped by after work with a new GeoTrax train set for Peter. He has become the master of removing gift-wrap and in no time at all his 4 small train sets became one big set. He gave up some nice and well-deserved kisses to Trish. Today we plan on some fun time in the snow in our yard. It is a sunny morning with little to no wind; it’s just perfect for some tubing fun. This is the first real opportunity we have had to play in the snow with Peter and we plan on enjoying it. The letter that follows is an invitation to Peter’s birthday party. We did NOT mail them this time because our mailing list has grown to over 300 households. We would very much like you to attend. We know that so many of you have been praying for Peter and we would like to have an opportunity to gather together to celebrate with all of you.

The Miracle Boy turned two. Please join with us to celebrate Peter Zucca’s 2nd birthday and the completion of his cancer treatment.

Where: Indian Valley Family YMCA
890 Maple Ave
Harleysville, PA 19438
215-723-6338

When: March 6, 2005 6:30pm - 8:30pm

It’s a swim party and refreshments will be served so please let us know if you plan to attend. The YMCA needs to know how many of you plan to use the pool so that they can have proper lifeguard staffing.

RSVP to: 215-256-1979 and leave us a message or email us at
rosejellyjakesplace@msn.com

The courtesy of your response is requested by March 1, 2005

In lieu of gifts we ask that please consider blessing those who have blessed us. Please let them know that your gift is in honor of Peter Zucca.

Towamencin Mennonite Church
Building Fund
1980 Sumneytown Pike, Box 225
Kulpsville PA 19443

Ronald McDonald House
405 East 73rd Street
New York, NY 10021

Memorial Sloan-Kettering Cancer Center
1275 York Ave
New York, NY 10021

Caringbridge
3440 Federal Drive, Suite 100
Eagan, MN 55122

American Cancer Society
Philadelphia - Southeast Region
1626 Locust St
Philadelphia, PA 19103

A.I. duPont Hospital for Children
1600 Rockland Road
P.O. Box 269
Wilmington DE 19899

Tuesday, February 22, 2005 7:50 PM CST

The Miracle Boy Turns 2. Please join with us to celebrate Peter Zucca’s 2nd birthday and the completion of his cancer treatment.

Where: Indian Valley Family YMCA
890 Maple Ave
Harleysville, PA 19438
215-723-6338

When: March 6, 2005 6:30pm - 8:30pm

It’s a swim party and refreshments will be served so please let us know if you plan to attend. The YMCA needs to know how many of you plan to use the pool so that they can have proper lifeguard staffing.

RSVP to: 215-256-1979 and leave us a message or email us at
rosejellyjakesplace@msn.com

The courtesy of your response is requested by March 1, 2005

In lieu of gifts we ask that please consider blessing those who have blessed us. Please let them know that your gift is in honor of Peter Zucca.

Towamencin Mennonite Church
Building Fund
1980 Sumneytown Pike, Box 225
Kulpsville PA 19443

Ronald McDonald House
405 East 73rd Street
New York, NY 10021

Memorial Sloan-Kettering Cancer Center
1275 York Ave
New York, NY 10021

Caringbridge
3440 Federal Drive, Suite 100
Eagan, MN 55122

American Cancer Society
Philadelphia - Southeast Region
1626 Locust St
Philadelphia, PA 19103

duPont Hospital for Children
1600 Rockland Road
P.O. Box 269
Wilmington DE 19899

Friday, February 18, 2005 8:19 PM CST

Monday morning Peter went with Aunt Nanny to play with the boys and girls that she baby-sits for at Covenant Presbyterian Church. He likes to play with the children and is very fond of snack time. Daddy’s plane was delayed and Peter did not get to see him until Tuesday morning. We went to our first music class on Tuesday, it is different from the class in NY and Peter enjoyed himself very much. Most of the children (and some of the Moms) who attended had bad colds. Germs are very scary for us!

Wednesday I decided to take Peter to a nearby Church for a community playgroup. The group was supposed to be made up of 2 and 3 year olds. Older siblings were invited. It was very disappointing to say the least. Some of the older children were pointing their miserable little fingers at Peter, making fun of his bald head, calling him names and taking toys from him. Needless to say we left! Obviously being in Gods house didn’t rub off on these charters or their Mothers. We will not return (and yes, I did cry all the way home)! I have decided to register Peter for story time at our local library on Thursday mornings. The Librarian assures me that nonsense like that mentioned above would never be permitted.

Today was our big day; Peter was allowed to go swimming. Nancy and I took the three boys to the pool at the YMCA. Ryan and Grant walked down the steps and I thought I’ll just sit on the top step and slowly get Peter acquainted with the water. Well, my little bald friend had a fit he wanted in, and in we went. His skinny arms and legs were kicking and splashing like nobody's business. He spent a full 30 minutes in the pool having a ball. He even got away from me once and went under; Nancy, Ryan and I collectively had strokes, but Peter was smiling and laughing when his little head came back out of the water. He finally had all he could take and I got him out of the pool bundled him up in a big towel and he fell fast asleep in my arms. At long last my little friend could sleep that happy sleep that healthy little boys who play too hard get to sleep. I spent about an hour holding him in my arms and admiring his beautiful, long brown eyelashes. We will return again for more of the same on Monday.

After we left the pool we headed to the Vernfield Station, Peter had some Valentine’s to deliver to the "Old Bucks" that congregate at 3:00 in the afternoon each day. He made 4 deliveries and we had a snack with Grampy. George treated us to our snack, Thanks!

We have a date for Peter’s swim party it will be on Sunday night March 6th from 6:30 – 8:30 at the YMCA we will post more details, but please save the date we would love to celebrate with all of you!

Please continue to keep us in your prayers. Peter still needs to learn how to walk and run. Please join us in praising God for John Cutrone’s safe return from Iraq. Also remember the families on the links below.

Sunday, February 13, 2005 7:14 AM CST

Dennis had to travel Wednesday – Friday, Peter missed his favorite toy. Mom had the flu (or some other type of evil stomach virus). Nancy had to come to the house Wednesday at midnight and stayed until about 4:00am. When her boys got on the school bus she picked up Peter and he spent the day at her house, safely away from his Mom’s bug. He had a sleep over with her big boys on Thursday night. Peter had a wonderful time playing at the Welby house, whenever I called to check on him I could hear his squeals of delight. Friday I started to feel well enough to take care of him again, although I’m not quite myself still.

Dennis is heading out of town today and will return late Monday night. I hope to take Peter to his music class on Tuesday morning if I can get the time right. He is so happy at home; I can’t believe how much he can eat! He is always on the go, and toys are everywhere. The birthday cakes have stopped appearing and we are still in search of “normal”. I hope to feel well enough on Tuesday morning to returning to running again. We are planning a few days in sunny Florida in March. That means that swimsuit season for the very stagnant Zucca’s is starting very soon (please pray)!

Friday is the first day that Peter is allowed to go in the swimming pool. My Sister and I will make an attempt at playing with Peter at the new YMCA near home. He is doing a little better in the shower but he still is not as happy with the water as he was in his pre-line days.

Peter is able to climb on and off of furniture and toys like a pro. He can also pull himself to a stand and last night he did a small amount of cruising while holding onto the couch. I have not seen any sign of wiggling toes but I know whom I have believed in and am persuaded that He is able.

If you tried to use the links on our web page and they didn’t work please try them again. These other families need our prayers too. Thank you Great Aunt Annette for catching the error.

Thanks to Aunt Nanny, Aunt Sandy, Uncle Rick, Rebecca & Dan, and Ev & Russ.

Please continue to pray for Peter’s healing, The Newman family who lost their son Evan last week, Ryan and Missy in NY; he starts chemo again tomorrow.

Tuesday, February 8, 2005 7:39 PM CST

Well Peter turned 2 on Friday, as is his style, it was a day of Joy for him. We joined Great Uncle Russell, Great Aunt Dorothy, Grampy, and Aunt Nanny at the Vernfield Station for breakfast. Peter’s favorite waitress, Floss served his waffle with 2-lit candles perched on the top and sang Happy Birthday to him. Uncle Russell and Aunt Dorothy gave Pete a very nice Winnie the Pooh plate and cup set. Peter is just delighted with them. Aunt Nanny and I went to Henning’s Market in search of the woman that decorated last year’s cake. We were very happy to find her, she did her usual wonderful job and Peter had a very nice Birthday cake that had an assortment of caterpillars, bugs and smiley faces on it.

When Nancy and I returned home to drop off the cake the FedEx truck was in our driveway. Imagine my surprise when the driver opened up the back of the truck and started carrying very large boxes to our porch. It turns out that Dennis’ co-workers in NY had sent Peter a “Birthday Party in a box” or two. Next thing I knew the local florist was delivering balloons from my co-workers. By now the atmosphere was very festive and I couldn’t wait for the party to start.

Our next mission was to take Peter for his Birthday pictures (for those of you who remember the sag frog pictures this is no easy task). We arrived at the Picture People in the King of Prussia Mall with a full arsenal (I brought cousins Ryan and Grant and Aunt Nanny with me). The boys made heroic efforts to get Peter to smile, after just shy of 45 minutes of crying and trying to escape; he gave up and smiled for the camera. I am happy to report that we got a couple of very cute pictures of Peter wearing his red and white property of Mom hat and T-shirt (I could not resist). We headed home for some pizza and cake.

We put some nice red candles in Peter’s cake and sang Happy Birthday to him. Peter and Mommy blow out the candles and then Peter systematically put his finger into every caterpillar, bug and smiley face. I love that boy! He opened his gifts and as is our custom we took a ridiculous amount of pictures.

Saturday morning we had breakfast at the Station again, this time with all of my Brothers and Sister and their families and Grammy and Grampy. Peter had another flaming waffle and more singing. Dennis went to NJ to pick-up Pop-pop for the weekend. Sunday morning at church the congregation gave God and Peter a standing ovation and the partying continued with another very big Birthday cake and a very sweet Teddy Bear from the children in the 2nd and 3rd grades. We dressed Peter in his Eagles uniform and a new Eagles hat from Pop-pop and settled down to watch the super bowl.

Monday was a very long and sad day for us; we spent it at the funeral and burial of one of Peter’s friends from Dupont (please see prayer request below). Today was supposed to be Peter’s first music class in PA but I got the time wrong. We will start music lessons next week instead. The day was not a complete loss; we made a surpise visit to the very caring people at Temple orthopedics in Ft. Washington. They cared for Peter briefly, before we made it to duPont. They have embraced Peter with such love and concern. They have sent him balloons, teddy bears and lots of love and prayers (I am grateful). They have signed on to caringbridge many times and are a wonderful example of the type of caring and compassionate people that I hope we will all encounter when we visit a doctor’s office (Thank you all).

Peter received an amazing number of Birthday cards and gifts. As always you amaze me with your love for a little boy that many of you have never met. The network of God’s people is so vast and so comforting to us. Thank you to Janet & Ed, George & Peg, Grammy & Grampy, Pop-pop, Aunt Nanny & Uncle Jamie & Ryan & Grant, Uncle Mark & Aunt Sharon, Sweet little Nicole, The Kratz Family, Mom Ruth, Missy & Ryan, Russ & Ev, Elaine & Herb, Great Aunt Alice, The North Penn Surgical Family (Face, Chubby, Williamson, Chuck, Lutzee Queen Bee, Stumpy Tara Bara, Tammy & Barb), Blanche & Ken, Jean & Leidy, Everyone at Dennis’ NY & PA office. If I missed you please forgive me!

Please continue to keep Peter and his healing in your prayers, also please consider a visit to Ryan’s caringbridge today, (www.caringbridge.org/ne/ryan) Ryan and his Mom got some tough news this week and need your help to lift Ryan before the throne of God.

Friday when I returned home form the grocery store there was a sad message waiting on the answering machine for me. Evan Newman passed away Thursday night. He was 11 years old and Peter met him at A.I. duPont. Evan was a beautiful child with sparkling eyes and an engaging smile. He often held Peter on his lap while they were receiving blood transfusions and sometimes they shared snacks. I know that his family could really use your prayers.

Thursday, February 3, 2005 6:58 PM CST

Dennis and I knelt next our bed at RMH last night, we reminded God of his promise “that he would give us the desires of our heart of we would just ask him”, and we thanked him for doing just that. I was so tired but I could barely sleep (I think the excitement was too much for me).

Peter spent his morning handing out Valentine cards to all the people he loves at Sloan (that’s a lot of Valentine’s). We had a brief visit with Doctor Wexler and then headed to the infusion room for one last blood draw and the final I.V. connection for his anesthesia. Peter’s last radiation went fine and the line was removed immediately following. Peter was awake when they brought him down the hall to Dada. He had a quick bottle; we dressed him, and said some good-byes to the Moms and Dads in the radiation waiting room. Dennis and I hit the streets and placed a quick call to Grampy and Aunt Nanny, they were already at RMH waiting for our return. Aunt Nanny cleaned the room and we packed the car and checked out!

We are so excited for Peter’s new start and so amazed that God has given Peter a second chance. Miracles are wonderful things (especially when it is your child on the receiving end), but there have been many children and parents who love God and their child every bit as much as we love Peter and their miracle didn’t happen. It’s all very over whelming and very hard to understand. We believe that God’s plan is perfect and we trust that we will meet those children again in Heaven. We pray for God’s blessings on the families who have had to make this journey (no matter what their out come). We will never forget, and we hope that you won’t either, what a difficult journey this is. We hope that the sharing of Peter’s miracle has found you cheering for our little boy, believing in miracles, and very much in love with our wonderful Savior.

Tomorrow is a very special day for the Zucca’s; our little man will turn 2 years old. We will have a small cake with family tomorrow night and we hope to share a very big cake with all of you sometime in March (when Peter is allowed to go swimming) we will continue to keep caring bridge updated and hope that you will continue to follow Peter’s journey and progress with his physical therapy and speech therapy.

Thank you for the many, many Birthday cards that have been filling our mailbox. We are not sure but we suspect that the members of Towamencin Mennonite Church may have stock in Hallmark.

Please continue to pray for Peter’s complete miracle of healing, don’t forget toes that wiggle and legs that walk. We are far from done with his care. There are also many doctors, nurses and other healthcare professional who need to be remembered as they care for so many sick children. Please remember those who work in cancer research, as we still desperately need a cure for this disease.

Tuesday, February 1, 2005 7:31 PM CST

Two down and two to go; Peter continues to tolerate his radiation well. We are very happy to report that his temporary central line will be removed on Thursday morning after his last radiation, but before he awakes from his anesthesia. So when we return home on Thursday our little man will be line free and ready to start his new life.

There are only two early morning walks to Sloan left; Dada will take the last one with us. Dennis took the day off on Thursday to give me a hand at the hospital and to help with the packing and checking out of RMH. Depending on the timing of check-out I will take Peter to one last class at “Hands On”. I hope we will have the opportunity to get to class because I would like to take Grampy and Aunt Nanny along as spectators. It really is the sweetest thing to watch a room full of little children playing all those instruments.

Peter attended music classes yesterday and today. We took some pictures today and will try to get them on caring bridge. Thanks to Amanda, Brian, Carina, Lisa and Len for allowing us to attend your classes and for making us part of your family. Your kindness and prayers are certainly one of the highlights of our time in NY.

Today Peter and I made another trip to the Baby Gap, this time for a swimsuit. We are planning a big “splash” for his second birthday. We want to invite all of you to a swim party for Peter’s birthday (details to follow).

My little bald friend is working hard at not being bald, his sweet face and head are now covered with fresh “peach fuzz”. Dennis and I are anxiously awaiting the return of his hair and can’t wait to see what color it will be. For those of you who don’t know pre and post chemo hair is not usually the same color or texture, so we don’t know what our little friend is going to look like.

Please continue to pray for Peter’s miracle of complete healing. And please remember that the journey doesn’t end on Thursday. Peter will need your prayers his entire life.

Sunday, January 30, 2005 8:45 PM CST

Radiation therapy went well Tuesday – Friday; we had an appointment with the radiation doctor on Wednesday and things look “good”. Peter has been feeling well, although he is taking some very long naps (3-4 hours a day). When he a wakes from his naps he has a smile on his face and he’s ready to go! He has been attending music class almost everyday.

We have had some very brisk walks to Sloan; some mornings the temperatures were in the negative numbers. On Wednesday morning the temperature was noticeably warmer than on other days so Peter and I took a walk to Dennis’ office and had lunch with him. Peter fell fast asleep on the way to the office and Dennis and I were able to have a nice, quiet lunch together. On the way back to RMH I was able to spend a little time at the Baby Gap. Peter is now the proud owner of a red and white baseball cap and shirt that read “Property of Mom” on them (he looks adorable and I’m just so proud).

Friday morning Nancy and Grampy took another trip to the Big Apple. Peter and I were packed and waiting for them. We took with us everything except four days worth of clothing for the three of us because…We only have four more days of care…four more days of care. Did I mention that we only have four more days of care left?

We spent a couple of nice days at home and then it was time to pack up and leave for NY for the last time. My brother, Robert and my Dad took the ride we us. We arrived at RMH around 3:30pm. The car was unloaded and we headed out to dinner together. Uncle Robert and Grampy left for home and Daddy and Peter walked to the corner for a half gallon of milk. Why you ask, because our little man drinks milk bottles now. No more formula bottles for our big guy.

It has been almost five weeks since Peter’s last round of chemo. You can tell that he is feeling better, because he has gotten very busy, very silly, and very verbal. One of the many Blessings along the way would have to be that Peter doesn’t know that he is sick. He is also unaware that he will finish his treatments on Thursday morning. We on the other hand are well aware of the end of his treatment. He is already enrolled in music classes at home and he will start swimming at the new YMCA in Harleysville when his line is removed. We expect that within a week or two he will start physical and speech therapy at out home. We will also make monthly visits to Sloan to check his progress and he will have quarterly scans to be sure that the evil tumor has not returned.

We will checkout of RMH on Thursday (YEAH!) Friday we will start our assignment; raising our little cancer survivor who just happens to be turning 2 on that very day (Thank you God for your amazing love and for your gift of another year with the Miracle Boy)!

Thank you to Elaine & Herb, Uncle Robert & Aunt Chris, Grammy & Grampy, and Aunt Nanny.

Please continue to pray for Peter during these last few days of radiation, he still needs to fast each day and undergo anesthesia. We are also patiently awaiting wiggling toes and legs that can walk.

Monday, January 24, 2005 6:42 PM CST

It was a long weekend. Saturday morning we had breakfast at McDonald’s, and then we went music class. It was the first time Dennis got to attend. There were three other little boys in the class with Peter. He enjoyed himself very much. One of the little boys did not feel like socializing and he left early. The class was not as much fun for Dennis as I had hoped it would be (it was the first time that he watched Peter interact with other “healthy” children). Translated that means: Wow look how far behind my little boy’s physical development is. Then it was off to the grocery store.

Grocery stores are very small here; people shop using carts the size of the ones the children use at home. The aisles are so close together that you can’t push the stroller past a cart without them touching one another. I couldn’t find breakfast cereal but there were at least 6 types of beer. Don’t even get me started on the cleanliness issue! Anyway we needed some food to get us through being snowbound at the Ronald.

We picked up a few snacks to eat during the football game (GO EAGLES)! Dennis hoped that Peter would take a nap during the game; instead he took an early nap and awoke about 4 minutes before kick-off. He came ready to play and so did the Birds!
Peter will finish his care just in time for a little super bowl party.

The temperature with wind chill was a balmy -2 this morning for our walk to Sloan. We had better luck today with the radiation. We were taken in on time and get back to RMH early. Peter took a 4 ½ hour nap today; that is not uncommon when he is undergoing radiation. He awoke ready to go. We decided to eat dinner at Cilantro (our neighborhood Mexican restaurant) Monday is $10.00 fajita night. Peter decided that it was going to be hat night for the Zucca’s so we all wore one of Dada’s baseball caps to dinner. This was wonderful fun for Peter. He sat on Dada’s lap eating corn chips in an oversized hat. (I wish we had the camera with us, it really was sweet)

It started snowing while we were eating dinner. We are hoping that things will turn around with the weather. Snow in the city is NOT pretty or fun. I miss home! I want to take Peter out in the yard and play on the inner tube that he and Dada got for Christmas last year.

Please pray for uneventful radiation for the rest of the week, nice weather for the walk to and from Sloan and a warm weekend for our safe drive HOME! Please pray for Mama’s boredom, loneliness and general bad attitude.

Friday, January 21, 2005 10:04 AM CST

It looks like we will fight to the end; Peter was scheduled to be radiated this morning at 8:30am. It is now 11:10 and we are still waiting (and fasting). The machines broke first thing this morning; by the time they were repaired there was not an anesthesiologist available for a 45 min block of time. Peter got bumped for all the kids who only needed 10-15 minutes blocks of time. We are now on the schedule for 11:30am. Radiation will be followed by a blood transfusion because Peter’s hemoglobin is only 10.1. It needs to remain at 10 or above during radiation. The fear is that he will drop below 10 over the weekend. Peter is sleeping very peacefully (and I’m thankful for that).

Yesterday Peter took a long nap after his line placement and chest x-ray ordeal. He awoke just in time to go to music class. He had a wonderful time in class and as always I am so proud (and in love) with him for being so brave, strong and full of joy. He crawled all around the room, played all of the instruments, he STOOD next to a very big drum and patted it with his hands (Brian Keeler look out I thinks he is eyeing up your spot on the praise team). I need to head back to the radiation department now.

Please pray that Peter is able to tolerate his radiation without any side-effects. Pray that the cold weather breaks (It was 10 degrees this morning walking to the hospital). We could use a nice and uneventful weekend in NYC and a smoother week of radiation next week.

Thursday, January 20, 2005 12:51 AM CST

Yesterday, while Peter and I were having breakfast with Grampy and Aunt Nanny, I decided to call Sloan to see when Peter’s temporary line was going to be inserted. Much to my surprise the surgery was scheduled for this morning at 9:30am. The person who scheduled the procedure forgot to tell us when it was scheduled. So Peter and I ran home to start the washer and do some packing.

The plan was that Nancy and I would drive to NYC on Friday morning just in time to have radiation and come back home later that day. We wanted to bring Missy and Ryan (www.caringbridge.org/ne/ryan) home with us so that they could have a break from RMH and NYC too. Instead, Dennis, Peter and I packed the car and headed to my brother, Robert’s house. His wife, Chris packed a meal for us to enjoy this week and the four of us left in the snow for the city. It was a long slippery ride about 4 hours. Robert helped us to unpack and headed home it was about 11:00pm.

Peter had to fast once again, no bottles or food after Midnight. We were at Sloan by 8:00am. Peter had to endure another peripheral line insertion (and so did Mom) so they could draw blood and give him anesthesia. The temporary line was placed without difficulty into his right chest, above the area that the Broviac line was removed from last week. Peter awoke very unhappy (he was hungry and was still not allowed to eat. The doctor’s had ordered a chest x-ray to be sure that the line was in the proper position and that he had not suffered a pneumothorax (a deflation of his lung) from the insertion of the line.

This chest x-ray was a saga in itself. The first film was not exposed and therefore did not show them anything. The tech and the portable x-ray machine came back into the recovery area and we tried again. The second film was another failure (remember Peter still cannot eat or drink anything just in case he needed anesthesia to place another line). This time we headed down stairs to the radiation department to have films taken on the x-ray table. The wet-behind-the-ears tech decided that Peter should sit upright with his back against the film for two different shots. I told her that he wasn’t going to be able to do that but what do I know I’m only his Mother! Guess what, after four more failed films, they let Peter lay on the film plate. Those films showed them what they needed to see. Peter and I headed back up stairs to the clinic to see if he could eat. My poor little bald friend finally got his bottle at 12:15pm. When he finished the nurse removed the peripheral line from his arm and we left the hospital.

Tomorrow starts our first radiation treatment to his lungs. He will have 10 days of low-dose (1500 grey) to both lungs. Because, of his size the radiation field will include the top of his stomach and spleen. There is a possibility of moderate to severe nausea as a result of his stomach being in the field. He will receive nausea medicine in his IV each morning before we start treatment. We will not be going back home when we finish on Friday morning. Because they are calling for lots of snow we will stay here for the weekend and will resume treatments on Monday morning. We hope that things will workout for us to return home next Friday.
Peter is sound asleep in the stroller, covered in a big soft blanket that Grammy made for him. He is exhausted and the snoring is very loudly. I have to go back to our room now because the noise is disturbing the people sitting next to me.

Thanks to Dr. Hilston, Uncle Robert & Aunt Chris, Aunt Nanny, Grammy & Grampy, Kandace & Frank and to all the nice ladies at Daddy’s work who sent home the fun Birthday presents for Peter. The building with the four cars in them made the trip to NY and Peter is enjoying them very much. Kandace could you give me a cop of the recipes for the chicken and potatoes? They were yummy.

Please continue to pray for Peter’s miracle, complete healing, toes that wiggle and legs that walk. Peter spent Tuesday and Wednesday very frustrated because he cannot crawl into the middle of the room and just stand up and walk. He likes to hold onto my hands and hop on one foot and try to walk on both legs. His spirit is willing but his flesh is weak.

Thursday, January 13, 2005 10:05 AM CST

Just wanted to let you know that Peter’s line is out. The surgery was uneventful.

Praise God!!! Peter Zucca’s scans are clean.

Wednesday, January 12, 2005 9:30 PM
Nancy & I left the house at 5:00 AM this morning. The volume of traffic was very heavy, but we reached Sloan by 7:30. Praise God for Rosenberger’s Iced Tea. Peter drank all of the contrast without the naso-gastric tube! Peter spent about 1 hour in the MRI machine & then was transported to the CAT scan machine. The nurse and anesthesiologist accompanied him on the trip because they did not wake him between scans. Peter was in CAT scan for about 15 minutes. When he came out of the CAT scan room, his undershirt was wet and for a new twist, there was a hole in his Broviac line and blood was dripping out of it. Luckily for Peter, his Momma keeps a clamp on the diaper bag for just such an emergency. We made a dash for the department of surgery to have his lines repaired. Unfortunately, Peter’s line was not inserted at Sloan. DuPont & Sloan use different brands of lines and they did not have the proper repair kit for Peter’s line. The staff from Sloan went across the street to Cornell Presbyterian to cash in a few favors, in hopes of getting the proper repair kit from them. No repair kits were available. The decision was made to remove his damaged Broviac. Peter was crying when he came out of the CAT scan room, so I fed him a bottle. Because I fed him, it was not possible to safely sedate him today. As a result, Nancy & I are having a pajama party at RMH tonight. Peter needs to be at Sloan tomorrow morning at 7:00 AM. He is on the OR schedule for 7:30 AM.

Provided that today’s scans are clean, Peter will get a new, temporary line next Thursday and radiation will start next Friday.

Please continue to pray for Peter’s miracle, clean scans, uneventful surgery and safe travel home.

Thursday, January 13, 2005 10:57 AM EST

Peters scan results show NO CANCER. More info to come…

Wednesday, January 12, 2005 9:30 PM CST

Nancy & I left the house at 5:00 AM this morning. The volume of traffic was very heavy, but we reached Sloan by 7:30. Praise God for Rosenberger’s Iced Tea. Peter drank all of the contrast without the naso-gastric tube! Peter spent about 1 hour in the MRI machine & then was transported to the CAT scan machine. The nurse and anesthesiologist accompanied him on the trip because they did not wake him between scans. Peter was in CAT scan for about 15 minutes. When he came out of the CAT scan room, his undershirt was wet and for a new twist, there was a hole in his Broviac line and blood was dripping out of it. Luckily for Peter, his Momma keeps a clamp on the diaper bag for just such an emergency. We made a dash for the department of surgery to have his lines repaired. Unfortunately, Peter’s line was not inserted at Sloan. DuPont & Sloan use different brands of lines and they did not have the proper repair kit for Peter’s line. The staff from Sloan went across the street to Cornell Presbyterian to cash in a few favors, in hopes of getting the proper repair kit from them. No repair kits were available. The decision was made to remove his damaged Broviac. Peter was crying when he came out of the CAT scan room, so I fed him a bottle. Because I fed him, it was not possible to safely sedate him today. As a result, Nancy & I are having a pajama party at RMH tonight. Peter needs to be at Sloan tomorrow morning at 7:00 AM. He is on the OR schedule for 7:30 AM.

Provided that today’s scans are clean, Peter will get a new, temporary line next Thursday and radiation will start next Friday.

Please continue to pray for Peter’s miracle, clean scans, uneventful surgery and safe travel home.

Wednesday, January 12, 2005 9:30 PM CST

Thursday, January 13, 2005 10:20 AM Eastern time

Just wanted to let you know that Peter’s line is out. The surgery was uneventful.

Praise God!!! Peter Zucca’s scans are clean.

Wednesday, January 12, 2005 9:30 PM
Nancy & I left the house at 5:00 AM this morning. The volume of traffic was very heavy, but we reached Sloan by 7:30. Praise God for Rosenberger’s Iced Tea. Peter drank all of the contrast without the naso-gastric tube! Peter spent about 1 hour in the MRI machine & then was transported to the CAT scan machine. The nurse and anesthesiologist accompanied him on the trip because they did not wake him between scans. Peter was in CAT scan for about 15 minutes. When he came out of the CAT scan room, his undershirt was wet and for a new twist, there was a hole in his Broviac line and blood was dripping out of it. Luckily for Peter, his Momma keeps a clamp on the diaper bag for just such an emergency. We made a dash for the department of surgery to have his lines repaired. Unfortunately, Peter’s line was not inserted at Sloan. DuPont & Sloan use different brands of lines and they did not have the proper repair kit for Peter’s line. The staff from Sloan went across the street to Cornell Presbyterian to cash in a few favors, in hopes of getting the proper repair kit from them. No repair kits were available. The decision was made to remove his damaged Broviac. Peter was crying when he came out of the CAT scan room, so I fed him a bottle. Because I fed him, it was not possible to safely sedate him today. As a result, Nancy & I are having a pajama party at RMH tonight. Peter needs to be at Sloan tomorrow morning at 7:00 AM. He is on the OR schedule for 7:30 AM.

Provided that today’s scans are clean, Peter will get a new, temporary line next Thursday and radiation will start next Friday.

Please continue to pray for Peter’s miracle, clean scans, uneventful surgery and safe travel home.

Tuesday, January 11, 2005 3:26 PM CST

The PET scan was fine. The doctor said “There are a few areas to watch but, nothing on the scan that resembles a malignancy at this point”. He also said “Peter’s PET scan will not be completely normal again, because of all the surgery, radiation, and chemo that he has been through”. Peter will undergo PET scans in the future and the doctors will compare them to this one.

Please join with us in praising God for this news! Please remember to pray for miraculous results for tomorrows scans. Pray for Ryan who is meeting with the transplant team this week and for Jack who will also undergo scans this week

Thank you for your continued love, support and prayers. Thank you Janet & Ed

Tuesday, January 11, 2005 10:16 AM CST

Peter had a very long day yesterday; his fast lasted from 6:00am until 3:30pm. There were lots of tears. His scan went well and so did the radiation simulation. Unfortunately we do not have any results yet.

Wednesday is another big day. Peter has a CT scan and an MRI scan. We start at 8:00am and end by noon. That will be easier from a fasting standpoint but Peter will need to drink oral contrast. Oral contrast tastes terrible. We will bring our old friend, Rosenberger’s Iced Tea with us and hope that he will still be able to drink the tea once the contrast is mixed in it. If he can’t drink the tea he will need to have the evil naso-gastric tube placed (it goes in his nose and down his throat) then the contrast is placed in the tube. The thought of it is really upsetting to me!

Please keep us in your prayers and know that we appreciate your prayers, and especially, your fasting along with us very much. Tomorrow Peter will need to fast, drink terrible contrast and have anesthesia again. Also Pray for safe travel to the city, my sister will be coming up to help out with Peter (Dennis is traveling out of Philadelphia tomorrow). Our plan is for Nancy, Peter and I to return home following the scan. If the radiation schedule works in our favor, Peter will start on Monday morning. We will be in the city for 2 more weeks of Monday-Friday radiation and then we should be home to stay (Good Lord willing).

Tara, if you are out there I thought that you should know when Trish saw you on Friday she didn’t think that you were extremity challenged at all. She actually thought that you looked “TALLER” than the last time she saw you! Don’t worry I set her straight. She later said, “Maybe she had big hair”. I miss you guys!

Sunday, January 9, 2005 9:01 PM CST

Well your prayers worked, Peter’s white count rebounded Friday morning. His platlet count was low once again and he received a transfusion. My Sister, the angel, spent Thursday night in the hospital and I was able to get a full night sleep at RMH. She waited for Peter’s transfusion to end and we packed up and headed home to PA for the weekend.

Monday is a big day for all of us but especially Peter. He has a PET scan in the morning and radiation simulation in the afternoon. My poor little bald friend will need to fast from 6:00am on Monday morning until about 2:30 in the afternoon. The scan is a very big deal and it needs to be clean and cancer-free! We ask for your help once again to lift Peter before the throne of God and ask for his complete healing, clean scan, and the ability to tolerate his fast and the anesthesia that both procedures will require. If you are able to Dennis and I invite you to fast with Peter and us.

Please join us in praying for Evan, Hazen, Ryan, Maggie, Gracie, Nate and Joe. Pray for their healing and for patience, strength and wisdom for their parents. Remember all the physicians, nurses and researchers who dedicate their lives to helping us all.

Thank you to Grammy & Grampy and Great Aunt Dolly’s friend Lisa. Thank you for signing our guestbook.

Sunday, January 9, 2005 9:01 PM CST

Thursday, January 6, 2005 11:58 AM CST

Last night was much better for Peter and me; he remained fever free and did not vomit. Missy and Ryan (www.caringbridge.org/ne/ryan) stopped for a visit yesterday. They were going out for dinner last night and brought some ribs and mashed potatoes for me, much to Peter’s delight there was an ear of corn with the meal. I wish you could have seen his face light up when the corn came out of the bag. He sat propped up in bed in his little ones ie tee shirt watching a movie and knawling on the corn.

Peter never ceases to amaze me; God has filled this child with such a love of life and an amazing joy. When the nurses come in to take his vital signs he points to the wall where the thermometer is hanging and then points to the ear he wants his temperature taken in. He knows which leg his blood pressure gets checked on and when the machine beeps he waves bye-bye to the girl so she will go away! The entire staff seems to enjoy him, from housekeeping to nursing assistant to doctors; they are all interested in seeing what he will do next.

Nancy and Peter and I are in the playroom now, Peter and Nancy are playing with the fisher-price barn; oddly enough it has a camel and a dinosaur in it. Nancy called my Dad to let him know and he said “I never had a camel in my barn”. I’m sure that Grampy will go out and find a camel if Peter wants one. If you drive past my Dad’s farm and see a camel you will know what happened.

Nancy brought lunch with her, hoagies from the Vernfield Deli, Rosenberger’s iced tea, and Herr’s barbecue chips. Peter thought it was the finest meal he’d ever seen. I am going back to RMH now to take a shower and do some laundry. Nancy will be spending the night in the big apple (that’s a big deal to me!)

When his doctor’s rounded this morning they indicated that Peter will most likely be here through the weekend. Yuck!

Thank you to the Freed’s of Ohio, Little Juliet, Missy & Ryan, Aunt Nanny, Albert & Janet, Grammy & Grampy, Tara and Jill. Thank you for signing the guest book!

Please pray for Peter’s friend Evan (from duPont), for Ryan’s scan results, for Peter’s new roommate Hazen a big boy that will soon turn 4! Please continue to pray for Peter’s miracle of complete healing and much better counts, a weekend at home, and some nice quality time with Da-Da.

Wednesday, January 5, 2005 4:49 PM CST

Peter had some issues with nausea and vomiting during the night: and once again spiked a fever. The morning blood counts were better (hemoglobin 9.5, platelets 49, white count 0.2). This morning he had bad diarrhea, which was sent to the lab for cultures.

There is no end in sight for this admission!

My Sister will be coming to NY tomorrow morning and she will spend the night (Thank you God!)

Please pray for Peters healing and for safe travel for Nancy.

Tuesday, January 4, 2005 12:25 AM CST

Peter and I spent the night inpatient at Sloan. Peter spiked very high fevers all night; some as high as 104! His blood transfusion yesterday did not do the trick, his hemoglobin was only 7.2 this morning and he has already been transfused today. We are waiting for his platelets to hit the floor because they are also too low and require transfusing. His white count is only 0.1 today so we are looking at a long hospital stay.

Dennis is traveling for work, he left NY this morning and he will return to Philadelphia Thursday night. I was hoping that Peter and I would be able to meet him at home Thursday night but it’s not likely.

Please pray that Peter’s transfusion will give him a much needed boost and that the fevers are over. Pray that his white count rebounds quickly so we can come home. Please sign the guest book I miss hearing from you.

Monday, January 3, 2005 12:10 AM CST

Happy New Year!

We decided to leave for NYC this morning so that we could have an extra night in our own bed. Peter’s night was a rough one. Dennis was walking the floor with him for hours. He cried and was unsettled. He did not have a fever and we treated him for nausea and pain but he was still unhappy. We are at Sloan now and Peter has a fever, his hemoglobin is very low and we are expecting that his platelet count is low as well.

We are waiting for the blood transfusion to start. His Broviac lines have been cultured and he will need a urine culture also. As soon as we know what his white count is like we will know if he is being admitted: we expect that he will be inpatient for several days.

Please pray for his healing, for his cultures to be normal and for a speedy end to this episode. Please pray for Don who has been experiencing back pain and found out today that he has a spinal mass.

Thank you to Auntie Lynn, The Metz Family, Grammy and Grand pop Freed, Ray & Sandy, Don & Nancy, Sue & John

Wednesday, December 29, 2004 7:29 PM CST

Peter has finished his last round of chemotherapy. Praise God; we are so thankful that this chapter in his life has come to a close. Chemo ran on Monday and Tuesday; today was a day of post-hydration and we left for home with our last backpack of hydration. I will disconnect Peter’s IV’s at about noon tomorrow.

We are very excited that chemo is over, however, that does not change that fact that Peter still has to tolerate this round just like all the others. This chemo is the one that can cause the sores in the mouth and throat, nausea and vomiting, and low white counts and the need for blood and platelets. It also comes with a high likelihood of fever and subsequent admission.

If all goes well this weekend we will return to Sloan on Monday morning. Peter and I will spend the week at the RMH just incase he spikes a fever. Dennis will be traveling for work. Peter will most likely require transfusions a couple of times next week

We had a wonderful Christmas. Pop-pop Zucca came for a visit the Sunday before and left for home Monday night with Aunt Sandy, Uncle Rick, Rebecca and Dan. Peter got his first presents Monday night from them. I think I told you before about the dinosaur piano (we will come back to that later). Wednesday night we had the Freed Family at our house for out Christmas gathering. Peter very quickly learned that under the wrapping paper you would find a toy. (He began tearing the paper off of the packages with glee)

Thursday night we went to Christmas Eve services at church. I was able to read my scripture reading without much difficulty. The service ended with candle lighting and singing. (Peter was very interested in the flame) Christmas Day Grammy and Grampy came for lunch and to watch Peter unwrap MORE gifts. Dennis and I were given the best gift of all, not only is our precious little boy still here with us but, while he was busy playing the piano for all of us he decieded to just stand up. Well we were very pleased with that and we have about 15 pictures of it. We took them from all angles just to be sure that the occasion was well documented. (YES PICTURES WILL FOLLOW)

Once again you have gone out of your way to continue to bless us. Peter received so many gifts from so many people that it was wonderfully obscene. Thank you to Face, the elves at Simoesland, The Crozier Family, Jill & Paul, the many Santa’s at Ronald McDonald House and Sloan Kettering, the students at St. Joe’s, Jan & Steve, Ken, James & Jamie, the Delaney family, the Knechel family, the Vernfield Deli, cousin Sandy & Ray, all of our brother’s, sister’s, and parents.

Please pray for Peter’s ability to tolerate this last round of chemo without nausea, vomiting, fever or sores. Please pray that every cancer cell has been destroyed and that Peter will never face this foe again! Please join us in praising God for the end of this chemotherapy and the wonderful light at the end of the tunnel!

Monday, December 27, 2004 2:20 PM CST

When Dennis, Peter and I left for Sloan this morning the sidewalks were covered in ice and snow, the wind was whistling. Peter was fast asleep in his stroller; it has a boot that fits over his feet and legs, and a clear plastic cover that keeps the elements out. We started with a blood draw in the infusion room and before we saw Dr. Wexler we found out that Peter’s platelets count was 66 (it needed to be 50 for chemo to run). We were so excited.

Dr Wexler said that they were going to run chemo at a 25ower dose, as they did on the previous round. The next neat thing is that this is a two day chemo not a five. Peter’s last day of chemo ever (we hope) will be tomorrow.

Peter is starting to cry, I need to go, more info to come…

Thursday, December 23, 2004 11:15 AM CST

December 21, 2004

Dear Family and Friends,

This has been a whirlwind of a year for us. Peter was diagnosis with cancer at Christmas time last year. He was given no chance for survival; his tumor we were told was inoperable. The surgical team at Sloan-Kettering felt they had something to offer Peter, so we quickly moved his care to NY. Peter’s surgery was a wonderful success. His surgeons were able to remove his entire tumor and leave his precious body intact.

We moved into the Ronald McDonald House of NYC. Peter has been undergoing radiation and chemotherapy in NY since August. He has one round of chemotherapy to go and it ends New Year’s Eve day. In January he will need 10 rounds (2 weeks) of radiation to his lungs. He has scans scheduled for January 10th & 12th. He will have another surgery to remove his Broviac cathater. We hope that all of this will take place by his second Birthday, February 4th, 2005.

Last week I received a phone call from our Pastor, Pastor Bob. He asked me to read some scripture during the Christmas Eve service at Church. Not much to read really just Luke 2:15-20.

And it came to pass, as the angels were gone away from them into heaven, the shepherds said one to another, Let us now go even unto Bethlehem, and see this thing which is come to pass, which the Lord hath made known unto us. And they came with haste, and found Mary, and Joseph, and the babe lying in a manger. And when they had seen it, they made known abroad the saying which was told them concerning this child. And all they that heard it wondered at those things, which were told them by the shepherds. But Mary kept all these things, and pondered them in her heart. And the shepherds returned, glorifying and praising God for all the things that they had heard and seen, as it was told unto them.

It has been a year of tremendous stress and fear, of exhaustion from lack of sleep and the burden of caring for a sick child. It has also been a year that has brought tremendous reflection and at times amazing peace. Never before has the miracle of Jesus’ birth, his suffering, crucifixion, and resurrection been so real. Never before have I so completely understood what it means for a Mother to ponder in her heart the future of her child. What an amazing gift God has given the world in his son, Jesus.

We are grateful for the many ways you have blessed our small family this year. You have greatly eased our burden and there are many of you whose kindness we cannot repay. We wish you a Very Merry Christmas, and a New Year that is full of blessings of your own.

Joy to the world!

Love,
Dawn, Dennis & Peter Zucca

Regular updates are available on Peter’s web page at (www.caringbridge.org/pa/peter)

Monday, December 20, 2004 11:11 PM CST

We are having a great time at home. We had lunch with Daddy on Friday and got to visit with his friends at work. Friday afternoon and evening we had cousins Grant and Ryan over at our house, we had dinner together and drove around town looking at Christmas lights. The boys have a very elaborate system in place for judging and scoring the homes; if you have any orange lights on your house Grant will give you an automatic deduction! Peter had a wonderful time playing with the boys and Aunt Nanny and Uncle Jamie got to do some Christmas shopping and have a date night.

We did get a Christmas tree on Saturday morning (pictures will follow). It is very pretty and we had fun picking it out, Uncle Jamie came along and took lots of pictures for us. The man who has the tree lot gave the tree to Peter. Then the most amazing thing happened… Aunt Nanny and Uncle Jamie kept Peter for the afternoon and evening and Mommy and Daddy did some Christmas shopping and had a date night complete with dinner at an Asian restaurant. It was so yummy and I didn’t have to eat any cold food because I was cutting someone’s dinner or feeding someone. (We almost didn’t know how to act. We were halfway to the mall when we realized that we had not feed the dog and we weren’t even sure if she was in the house or outside)

Sunday after church Dennis drove to NJ to pickup Pop-Pop Zucca. We actually got to watch the Eagles game in its entirety and have both of our Dads and my Sister’s family with us. It was really nice to be together with everyone. We received a special toy delivery Sunday from the Colleges Against Cancer Division at St Joseph’s University. Tonight Aunt Sandy, Uncle Rick, Rebecca and Dan came to the house for the kids to exchange their Christmas gifts. Peter got a very soft blanket and a wonderful crocodile piano. We will add this to his guitar and maracas and he will soon need a music room.

We are returning to Sloan tomorrow morning, we will leave the house at 5:00am. Dennis took some vacation time this week and he will be with Peter and I. We hope that Peter’s counts have all recovered and that he will not need any transfusions. We hope to see Missy & Ryan and Aliza & Nate. If time permits we will make a stop at RMH to wish Joanne a Merry Christmas.

Look at this post, it’s entire page of Blessings. God is so good. Thank you to St. Joe’s, Colleges against Cancer, Ken, Brian & Dee & Nicole, Great Uncle Frank & Great Aunt Mary, Kandace & Frank, Pop-Pop, Aunt Sandy & Uncle Rick & Rebecca & Dan, Sallie,
Tammy & Brad & Andi, Aunt Nanny & Uncle Jamie

Please continue to pray for Peter’s miracle. Pray for safe travel and good counts. Pray for wiggling toes and walking legs. Pray for my friend Marcy’s dad, Dick has cancer and has a lot to think about regarding care choices and treatment options. Being sick is no fun.

I think my cousin Stacey has a very BIG40thBIRTHDAY this week. If you see her please do not mention reading glasses or hair color. Thank you.

Friday, December 17, 2004 9:00 PM CST

Peter needed both a blood and a platelet transfusion on Thursday. That always makes for a long day. What makes it even longer is when you spike a fever during your transfusions. (This sends everyone into a tailspin) Peter had that kind of a day on Thursday; the cries went out through the day hospital that our little bald friend did indeed have a temperature. Blood cultures were ordered from both lines to be sure that he was having a transfusion reaction and not a line infection. He received a dose of Tylenol and we waited about 45 minutes for his vitals to be retaken. His temperature had returned to normal and since he was no longer neutropenic so we were able to return home. The discharge came at such a lovely time of day in NYC, 4:15pm. (YIKES!)

Grampy came a long for the ride and to be my back seat babysitter. Peter loves his company. They watched Baby Einstein’s Baby Santa DVD on the ride up to the city and Bob the Builder on the ride home. The two of them watched Bob the Builder so many times that my father can now lay bricks and use a spirit level. All the men in my life are getting the best education from those videos.

Peter needs to receive his GCSF injection through Saturday morning to be sure that his white blood count does not re-drop. I will remove his insuflon after his last injection. Dennis has some time off from work next week so he will return to Sloan with Peter and I on Tuesday morning. Peter has a clinic visit and he needs another blood draw. At this point he will not be able to have chemo next week and they are hoping that he will be able to make counts for chemo on the Monday after Christmas. We are very excited about this round of chemo starting on that day because it will finish on December 31. NO MORE CHEMO IN THE NEW YEAR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! And I mean!!!!!!!!!!!!!!!!!!!!!!!

Thank you to Central Schwenkfelder Church, Harold & Gladys, Grampy, Cousin Sandy & Ray, and someone else and I can’t remember who it is; I’m so sorry but I’m just so darn tired.

Please continue to pray for Peter’s miracle. (I love him so much) Pray that he will be healed and that he will be able to walk, run and have a normal happy and healthy life.

Tuesday, December 14, 2004 4:14 PM CST

My little bald friend is sleeping so I thought I’d better take this opportunity to update caring bridge. We did make it home on Friday. Aunt Nanny and Grampy made yet another trip to RMH for us. We had a short, quite weekend at home. Peter was neutropenic so we were not able to take him out of the house. Uncle Robert and Aunt Chris took us back to NY on Sunday evening. Dennis, Robert and Chris went out for dinner in the city and brought some yummy leftovers back for Peter and I. When Dennis returned Peter had fallen fast asleep from yet another long car ride back to the city.

Monday morning we headed back to Sloan for a clinic visit and blood draw. Peter needed another platelet transfusion, his electrolytes were good, and his white count remained very low. Since his counts were pretty good and he was not having any problems we do not have to return until Thursday morning.

I called my Sister immediately and said “come and get us before they change their minds”. Peter and I ran back to RMH and repacked our bags. Before we knew it we were on our way home. Dennis had to fly out of NY on Monday afternoon for a business trip. We had already expected to come home on Wednesday so he scheduled his return flight into Philadelphia.

I was able to clarify that our next round of chemo is the LAST! (Praise God the light is visible at the end of the tunnel once again) Peter is scheduled for scans on January 8th and 10th. Then he has 10 rounds of radiation to his lungs, when his counts rebound from the radiation he will be scheduled to have his broviac line removed and the Zucca’s will try to determine what a “normal” life is and try to live it!

Thank you to Great Aunt Dolly, Arlin & Nancy, Grammy & Grampy, Uncle Robert & Aunt Chris, Aunt Nanny, The Jagiela family especially Cassidy, Dr. Hilston, Nancy & Hank, Big George & Peg, and Abe & Betty.

Please continue to pray for Peter’s complete miracle of healing. Pray for his precious toes to wiggle and his legs to walk. Pray for rest for Dennis and I. Please thank God for Peter’s ability to tolerate his last round of chemo with very little side effects. Remember that there are so many children and their family’s who are hurting because of this disease and pray for a cure. Pray for safe travel for Peter’s friend Maggie, as her and Mom return to Michigan tomorrow morning.

I almost forgot, we had a very special treat on Friday night. Harold and Gladys and the entire Von Trappe-Knechel Family showed up on our front porch to sing Christmans Carols!

Thursday, December 9, 2004 8:28 PM CST

Wednesday did not go as planned; we went to Sloan had a good clinic visit, and then had a blood draw. Peter needed a blood and platelet transfusion, but (and it’s a big but) his electrolytes were a mess. He needed IV fluids with lots of extra stuff added to correct his imbalances. They redrew his blood in the middle of the day and made changes to his IV fluids. His electrolytes were still a mess and we left the clinic with a back pack of fluids and a pump. He is still connected to the backpack.

They were celebrating Hanuauk in the Child Life Room at Sloan so Peter and I joined in (this is our first year celebrating) Peter got a tube with 8 tubs of play dough and some tools for shaping and cutting the dough.

Uncle Mark and Aunt Sharon came to NY on Wednesday and we planned to look at the pretty store windows with them and to walk around the city until Dennis was finished working and then have an early dinner with them. Peter and I left the clinic at 5:00pm so time with Uncle Mark and Aunt Sharon was out of the question.

Peter must have been in serious need of all the fluids and electrolytes, because he awoke with a smile on his face and a spring in his crawl! He wanted to get down on the floor and play with his cars. He just laughed and laughed all morning. He never ceases to amaze me with all the joy he has in him.

We were able to walk to Daddy’s office and met Uncle Mark and Aunt Sharon for lunch. They treated us to a great lunch. Peter ate marinated mushrooms from the salad, shrimp from the shrimp marinara, and chicken from the chicken marsala. We got to see the store windows at Saks Fifth Ave and then it was time for Daddy to go back to work.

Uncle Mark and Aunt Sharon headed home and Peter and I went back to RMH. No sign of Santa tonight, but we are filing out our letter to “The real Santa” when I finish updating caring bridge.

We got a call from Missy, Ryan’s mom last night, she said “get down on your knees and praise God! They were able to remove Ryan’s entire tumor”. Thank you for praying for him.

Please pray that Peter has good blood results tomorrow and that the fever monster stays away. Please pray that we can come home for the weekend and for safe travel. We continue to ask God for Peter’s miracle of complete healing. I hate to be greedy but I really want to see this little boy walk!

Thank you for all your love and prayers.

Wednesday, December 8, 2004 6:09 AM CST

Peter’s Monday morning clinic visit went well. While we were in the waiting room at Sloan, I attempted to update Caring Bridge. Peter wanted no part of me ignoring him. I picked him up out of the stroller so he could help me type, he proceeded to stand on my lap with weight on both legs. This is the reason Caring Bridge did not get updated on Monday. I was so excited I called Dennis. By the time we got off the phone it was time to see the doctor. His lab work indicated that his counts had not dropped yet. We went back to RMH for the day, to play & watch movies.

Today, we went to music class. We played accordion, maracas castanets and the flute. Tonight we had dinner with Ann, Dawn, Gracie & Daniel from Ohio, as well as Missy & Dan from Nebraska. Their son Ryan’s surgery is tomorrow (www.caringbridge.org/ne/ryan ). Then Santa came to RMH for about the 5th time this month. (He is literally here almost every night through the kindness of many different organizations.) Peter already has so many toys that we will need to put an addition on to the house. When I came out of the shower tonight, Peter & Dada were sitting on the toy-covered bed; Peter crawled on top of Dennis & pulled himself into another stand (YEAH, it was Daddy’s turn to experience the thrill!). Later, Dennis was trying to convince Peter to go to sleep. Dennis asked him if he wanted to put the toys away & go to sleep. Peter shook his head no & said grunted a NO. At this rate, with this many toys, he may not sleep for the rest of the year.

We will return to Sloan in the morning for a clinic visit and a blood draw. They typed & crossed him on Monday, in anticipation that he will need blood & platelets by Wednesday. This past round of chemo Peter has tolerated far better than expected. Praise God, tonight was the first time that he vomited.

Thank you to the Ladies Sewing Circle at Towamencin Mennonite Church, Uncle Robert & Aunt Chris, Grammie & Grandpop Freed, cousin Trish, Sally, Doris, Missy & Dan, Aunt Nancy & Uncle Jamie, Sauter family, Barb & Williamson. If you name is not listed & should be, I may have forgotten your name, but not your kindness. (I need this disclaimer when I wait too long between posts, my brain is fried & I am tired.)

Please pray that Peter continues to tolerate this chemo, that his blood transfusions will give him some much-needed energy and an appetite pick-me-up. Please pray that the fever monster will stay away & that there will not be a hospital admission. Please continue to pray that function continues to return to his right foot & leg & that he will be able to stand & walk on his own. Please remember Ryan, his family & his physicians during his very important surgery tomorrow.

(Dawn wrote this Tues PM, Caring Bridge was down at the time, I am posting it Wed AM. Trish)

Saturday, December 4, 2004 11:42 AM CST

We were released from Sloan Friday afternoon. It was 5:10pm when we left the parking garage. I drove because I’m the most aggressive one in the group (aggression is good when fighting for your child’s life and driving in NY). We made it home in one piece at about 9:00pm (this is not my personal best time).

Peter was attached to the IV pump when we left, so we had to stop for a diaper change along the way. He loves to watch the traffic in the city and the buses in the Lincoln tunnel after we left the tunnel he slept for the rest of the trip. We felt so bad waking him to go into the rest stop to change his diaper. It was a cold night and he couldn’t wear his pants because the waist band keep pinching his lines and causing an occlusion, which makes the pump alarm go off and the pump stops pumping.

Dennis got Peter out of the car, Chris and I dropped Nancy off at her house, and then Robert and Bethany picked up Chris back at our place. Peter was very tired and very happy to see his Da Da.

Dennis, Peter and the pump spent the night in our bed. Dennis had diaper and medication detail. The alarm went off every two hours. Bailey Jayne and I had a quiet easy night down stairs on the couch. We continue to dose Peter by the clock with 4 different drugs to keep the nausea away. So far he is doing very well.

We met Grampy, Aunt Nanny, Ryan and Grant for breakfast. Peter’s pump alarmed because his fluids were finished running. We disconnected him, changed his caps flushed his line with saline and then heparin, put his lines away and he was ready to go.

He ate very well for a little boy who just spent the week getting chemo. One of the teenage boys who got the same chemo had to be admitted this week for vomiting, and our little friend Peter was feeding himself bacon and pancakes. God is very good!

We will be returning to NY on Sunday.

Please continue to pray for Peter’s healing. Please pray that his right foot and toes will start to function, and that he will walk.

Thursday, December 2, 2004 3:38 PM CST

Chris made it to Sloan on Wednesday afternoon; the pediatric cancer unit is an eye opening experience. She brought with her the elixir of life, Rosenberger’s iced tea, and Herr’s barbecue chips. Peter continues to do well and as always he amazes me with his strength and joy. He was sleeping when we left the hospital last night. He slept through dinner and literally awoke on the ride into the hospital this morning.

There was a really nice dinner at RMH last night and frosty the snowman came with gifts for all the children. Peter was sleeping so we opened his toy today at the hospital.

The doctor’s are doing a great job controlling his nausea so far. This morning Chris made a McDonald’s run for Peter’s favorite breakfast, hot cakes and sausage. When his meds kicked in you couldn’t stop him from filling his sweet cheeks. He has had about 4-5 bottles so far today and we are planning on ordering Chinese food for his dinner. I want to get as many calories as possible into him before he has any nausea issues.

My sister Nancy arrived today. She brought another supply of Rosie’s and some chips. Peter is very spunky at the moment. He likes to climb the mountain (the raised head end of the bed) and slide down it backwards. He was also sitting on the bed holding his personal pan pizza like a steering wheel and biting off pieces of it. (This is probably not the best in table manners but he’s eating and I’m happy!)

We will be at Sloan early tomorrow morning. It is our last chemo day for the week. I will return to RMH after Peter is connected to his IV’s to clean, pack and do some laundry. We plan to leave for PA in the afternoon. Peter will be connected to the back pack of IV fluids so there will be lots of stops along the way home for diapers changes.

I hope that Dennis and I will be able to take Peter shopping for a Christmas tree on Saturday morning. We did buy one together last year but it hit the curb without ever hanging an ornament on it. We have great hope of Celebrating Christmas this year!

Thank you for praying for Nate, his bone marrow biopsies were clean and cancer free. His Mom was very happy when I saw her this morning. Please continue to keep Peter in your prayers. I know that he is tolerating his chemo well so far but that can change very quickly. We will return to NY on Sunday night. Peter’s counts will be low next week. Pray that the fever monster stay away and that he will not get admitted after this round of chemo.

Thank you to the clients and staff of American Beauty in Harleysville.

Tuesday, November 30, 2004 8:39 PM CST

Sunday night Dennis, Peter & I returned to NYC after fighting the holiday traffic for 4 hours. Dennis dropped Peter & I, along with our bags in our room at RMH. He fought the traffic & returned home to work in PA for the week.

Peter & I went to Sloan 7:15 Monday morning. We had a clinic visit & blood draw. Peter’s platelet count was not good enough to run chemo. He required & received a red blood transfusion, because his hemoglobin was low. The plan was to return to Sloan on Tues. AM to give Peter another shot at making counts. Peter’s platelet count was just high enough for chemo to run. His doctor’s decided to decrease his chemo dose by 25% because he was having so much difficulty rebounding.

Dennis & I have complete faith that this is God’s way of giving Peter enough chemo to kill his cancer while keeping the dose low enough to protect his hearing & kidneys. The day was uneventful for Peter, with no signs of nausea or vomiting so far. We were back at RMH by 6:00 PM.

The auction house, Christies, has their jewelry at RMH tonight for the children to wear & be photographed in. They were also handing out beautiful gift bags for the kids. And for our enjoyment while we waited in line, there was a supply of Belgian chocolates.

I ordered Chinese food for dinner tonight & had it delivered to the room. Praise God, He loves this child. Peter fought me for a Moo Goo Gai Pan, brown rice & the egg roll. Peter probably ate more than I did. In between courses, he cleansed his palate with Belgian chocolates.

Peter is attached to the IV backpack for post-hydration, so in order for me to shower, he has to be asleep in the stroller, with the backpack hanging on the handle. I finally got him quiet enough to wedge the stroller in the doorway & jumped into the shower. Just as the hot water hit my hair, some loving, concerned person called the room to see how we were doing, waking Peter & throwing him into a crying fit. I spent the next 5 minutes, literally hopping in & out of the shower to lie Peter back into the stroller. After the 3rd time, this produced an amazing temper tantrum. From the half open shower curtain, God gave me a beautiful view. When Peter is mad enough, his right leg kicks almost as strong as his left. If that was you on the phone, please sign the guestbook, so that I may remove you permanently from my Christmas card list.

Some highlights of Peter’s week so far: When we returned from RMH, there was a package waiting at the desk for Peter. The staff at “Hands-On” (his music class) left a beautiful card & a new guitar for Peter. Monday, while Peter was receiving his blood transfusion, an elf at Sloan delivered a shiny red BMW convertible that was donated for Peter (like the one he was previously pictured on). Since chemo did not run on Monday, & he was not connected to any IV lines, I called Lisa. Lisa is the woman whose Mom’s prayer group has been inviting us to Tuesday morning prayer meeting. We were able to get together at her home for a spaghetti dinner on Monday night. Lisa has 2 sons, one younger than Peter & one older than Peter. They have lots of toys & Peter came home exhausted.

Tomorrow is the Christmas luncheon where I used to work. Every year, we go out for lunch, exchange gifts with our pollyanna & participate in the office coloring contest. I love you all very much & I would miss any party to hold your hand while any of you would receive chemo. I’ll be with you all in spirit, but my heart belongs at Sloan with Peter. Jim, I picked your name in pollyanna & I am happy to report that I have a beautiful gift bag for you from Christies auction house. I will try to call your cell phone at 2:00 PM to wish you happy holidays.

Thank you to Martha, Loren & Eileen, Linford & Frances, the staff at Hands-On, the Elf at Sloan, Lisa & family and cousin Trish whose typing this for me.

When you say your prayers, remember to thank God for Khadijah. As you may recall, she is the 7-year-old girl who had bilateral masses that had to be biopsied. I saw her mom yesterday. The masses turned out to be scars from previous double pneumonia. Please pray for Nate, the little boy that Peter made friends with during radiation. His counts have not been rebounding & today, he underwent bone marrow biopsies to be sure his cancer has not spread. Please continue to pray for Peter’s complete healing, his ability to tolerate his chemo and my sister-in law, Chris’ safe travel to Sloan tomorrow morning.

Sunday, November 28, 2004 9:48 AM CST

Tuesday Peter and I went to Wal-mart so that Peter could buy Daddy a Birthday present. Dennis turned 44 on Wednesday. Peter decided on two packs of Twizzler’s, one for Daddy and one for himself.

Wednesday morning Peter and I picked-up Grampy, stopped at the bank for a roll of pennies, and headed to Ott’s greenhouse to make some wishes and throw them in the water there. Peter sat on a big rock at the edge of the pool, near the waterfall, surrounded by beautiful tropical plants. Grampy held onto him and handed him pennies, one by one. Peter threw 75 pennies into the water. Mommy made 75 wishes and they were all the same. I took some video and some pictures. We will add them to caring bridge later.

Wednesday night we went to church for the Thanksgiving Eve services. Mark Fly stood up and talked to the congregation about the many Blessings that we enjoy at Towamencin Mennonite Church. We were so incredibly thankful to be able to standup and show off the greatest little Blessing in the room, our precious little miracle boy, Peter!

We are keenly aware of how Blessed we are that Peter is still part of all of our lives. We thank God daily for all of the Blessing and miracles he has given to us and Peter.

Our Thanksgiving plans were busy, Lunch at my Sister’s house and dinner with my Brother and his family. We went to Nancy’s for lunch and Peter became very tired and irritable. We brought him home as soon as we finished eating. I lay down with Peter at 3:00pm, so him would nap before dinner. He was still asleep when it was time to join Robert’s family. Dennis left for dinner and Peter and I stayed home. At 5:30 Peter awoke, crying and hot. He had a fever of 102.4! We called his doctor at Sloan. His white count was high enough so we were able to give him Tylenol and wait to see them until the morning. We had a 7:30am appointment in the clinic at Sloan on Friday. My nephew Ryan spent the night and he and Peter and I left the house at 4:30am.

Peter’s blood counts were good; he did not need any blood transfusions. We ended up with another one of those little pee pee bags glued in place to check his urine for infection. We left with a prescription for antibiotics and a plan to return to the clinic at 7:00am on Monday morning. We got home in time to have lunch at the Vernfield Station with Grampy, Aunt Nanny, Ryan, Grant, Daddy and Uncle Robert. Dennis and I returned to Ott’s so that Dennis could enjoy some penny throwing.

The antibiotics were a nightmare! Peter vomited at every attempt I made at giving them to him. Dennis took the medicine back to the pharmacy to get it flavored; banana seemed like the best choice. It smelled so foul when I opened the bottle; I tasted it and thought; I wouldn’t swallow this stuff. Peter wanted no part of it either. Saturday morning we had to call Sloan again to get something different. They can’t work if you can’ keep them down (why does children medicine taste so bad that they vomit when it hits their tongue)

The doctor called the microbiology lab and Peter’s urinalysis and culture were normal. He stopped the antibiotics. He felt that his fever was viral related, not bacterial and there are no antibiotics for that. Aunt Sandy, Uncle Rick, Rebecca and Dan came to our house; they brought with them Pop pop Zucca and a birthday cake so Dennis and Rebecca could celebrate their birthdays together (this is a Zucca tradition started by Mom mom Zucca). Peter enjoyed playing with his cousins and eating the icing off the cake.

My parents took us out to dinner on Saturday night along with my Sister’s family. We had a great meal and Peter was in rare form. He ate many packs of bread sticks and lot of bread and butter. He spent lots of time performing for the table and flashing his winning smile and some waves at Grammy and Grampy.

Peter and I are returning to NY tonight; Dennis has to work in PA this week so we will be in NY alone. Monday, if he makes count we will start another round of chemo. If he does not make counts Nancy will pick us up Monday afternoon and we will be home for the week. This sounds nice but if chemo has to run the following week we will be in NY for Christmas. If we stay in NY this week my Sister in law, Chris will join Peter and I near the end of the week to help with diaper changes and all the lovely vomit laundry.

Thank you, to Towamencin Mennonite Church, Great Aunt Alice, Grammy and Grand pop Freed, Barb & Wayne, and Zane.

Please pray for safe travel to and from NY, Peter’s ability to tolerate his next round of chemo, and that he recovers from his current fever bug.

We just wanted to share something from our devotion book:
God is sovereign over all the events of our lives. Not one detail escapes His attention. The very hairs of our head are numbered. He knows everything about us. Furthermore, He is immutably faithful. And yet He deliberately surprises us with difficult assignments, premature or unexpected deaths, lost jobs, and disappointing circumstances along the journey. Let’s face it; it’s a mystery. The very hairs of your head are all numbered. Matthew 10:30. We have found these things to be true of our journey with Peter. We also found the verse ironic since Peter his just one lone strand of hair left on his precious head.

Monday, November 22, 2004 2:22 PM CST

We had a safe and uneventful ride to NY. Peter’s counts were good. His white count is now normal and we can stop the GCSF injections. He did not require any transfusions today.

My nephew Ryan rode with us to the city to lend a hand with Peter. We finished early in NY so we stopped and had lunch with Daddy on the way home. We went to Burger King. Peter ate onion rings and chili. Very strange food for a baby, but Peter’s friend Evan at Dupont told me that the spicier the food is the better it tastes. Apparently chemo can affect the taste buds.

Grampy came down to our farm today with his loader tractor, Peter climbed on board to help him use the bucket. We did some fall cleanup of our flowerbeds this weekend and Grampy took all the branches and leaves to his farm to dump them in the filed.

We will be returning to Sloan on Friday morning for repeat blood work.

Please pray for safe travel and for Peter’s continued healing.

Sunday, November 21, 2004 11:20 AM CST

Peter had a platelet transfusion on Friday morning. We returned home from Sloan at about 3:00pm. Aunt Nanny and Grampy went along for the ride. My cousin Arlin and his wife Nancy provided us with a wonderful dinner. May I suggest that you spend Thanksgiving with Arlin and Nancy; I know you would have a great meal!

Dennis returned from Canada late Friday night; he was sporting a lovely head cold. As a result of the head cold Dennis has to wear a mask to be in the house with Peter.

We skipped church today because Peter’s white count is still low. We will return to Sloan on Monday morning at 7:00am. Peter will need another platelet transfusion. We hope that Monday’s blood studies will show that his white count has rebounded and that we can stop the GCSF injections.

Thank you to Arlin & Nancy, The Senior choir and hand bell choir at Christ United Church of Christ in Kulpsville, Keila, Uncle Robert and Aunt Chris, Aunt Beth and Uncle Ralph and the little girls in Ohio, and a little boy named Zachary, who gave 4 quarters of the money he made selling eggs that his chickens laid to, Peter.

Please pray that Peter’s count will be stable on Monday. Please pray for safe travel and for continued healing.

Let us run the race that is before us and never give up.
Hebrews 12:1

Thursday, November 18, 2004 2:29 PM CST

Greetings from Beautiful Vernfield Pennsylvania, for those of you who have never had the privilege, Vernfield is a little slice of heaven tucked just behind Harleysville.

Peter did not make counts Wednesday morning; we had a second blood draw in the afternoon we were discharged at 3:00pm. Aunt Nancy and Grampy were anticipating our discharge and they had already left for NY. Peter and I hit the streets and went back to the RMH. We were all packed with our things on the luggage butler when they arrived. Peter was riding the butler on top of our bed pillows eating his barbecue chips.

We left RMH and picked up Daddy at work about 5:50pm and headed home in rush hour NYC traffic. We made good time getting home. The dog was happy to see us and we were so happy to be home again!

Dennis worked from home today because he had to travel this afternoon. Grampy came down on his golf cart and Peter and the dog and I went for a ride. We filled all the bird feeders; we hope to attract some of our feathered friends so we can watch them while we eat breakfast this week. Nancy watched Peter and I was able to get out for a much needed haircut.

Peter has a wonderful appetite since we got home. He is eating everything we put in front of him. He does share his cheerios with anyone who will take them, including Grammy, Grampy, Aunt Nanny, Mommy, Daddy and the dog!

We are returning to Sloan in the morning we have a 7:00am appointment, for a clinic visit and a platelet transfusion. Please pray that Peter does not spike a fever from his blood products.

Tuesday, November 16, 2004 5:25 PM CST

Peter continues to improve and his white count is now 0.3. He had a blood and platelet transfusion today. He slept through both transfusions because the pre transfusion mediations have the must wonderful side effect, sleepiness.

We have stopped all nausea medication and he is doing fine. They have decreased the amount of potassium in his IV fluids because his electrolytes are stabilizing. They have also decreased the amount of fluid he is receiving to 10ml per hour which is very low. But they need to keep these lines running to give his medications through them. He remains on two antibiotics and his regular daily medications of Fluconazole and Bactrim.

Daddy is here now and he and Peter are playing in bed. Peter likes to pat Daddy’s belly and hide his toys under Daddy’s shirt. This makes Peter squeal with delight! They have also been eating Twizzlers and watching the Wiggles.

We expect to be discharged tomorrow barring any unforeseen problems. I just learned from one of the other Moms that there is a flu outbreak at the RMH. I will go there tonight to pack and get ready to leave for home without having Peter enter the building (I’m not really up for any more hospital time). I have laundry going right now in the family laundry room on our hospital floor; they have a nice facility here with more washers and dryers than RMH.

Thanks for your prayers for Matt’s Family and for caring about all the children that you’ve never met.

Please continue to keep Peter’s healing in your prayers. Pray for safety in travel and a nice uneventful stay at home. We have a wonderful God and he continues to bless us.

Monday, November 15, 2004 5:46 PM CST

Peter’s white count is on the way up! We thought it was rebounding because his nausea and vomiting have ended and his diapers are returning to normal. His count was 0.2 this morning. The doctor hopes that he will hit 0.5 by Wednesday and if so we will be discharged. Peter will not make counts by November 22, so his next chemo will run on November 29th. We get to come home for Thanksgiving! We were also told that Peter will get only two more rounds of chemo not three because it is becoming more difficult for him to rebound. He has been under therapy for so long that his bone marrow is getting too tired.

Peter had his peripheral line placed this morning and Nurse Jen came through. She placed the line into his tiny little vein on the first try. Trust me; one try is more then enough when it’s your baby they’re sticking.

Then went down stairs to the nuclear medicine department and Peter received an injection of a radioactive isotope into the line. Next they scanned his arm to be sure that the injection went into his veins and didn’t infiltrate the skin around the line. Peter had his scan without sedation and he just lay on the table until it was finished. The nuclear medicine tech was very impressed with Peter’s patience. They were planning to skip the scan part of the test because Peter is too young to lie still for that long.

This afternoon Peter ate a container of sweet potatoes, Twizzlers, Herr’s Barbecue chips, cake and he washed it all down with some iced tea. Dennis is in his room right now feeding him some Haagen-Dazs. We are trying to help him gain back the weight that he lost since last week.

When I left Peter’s room to come to the playroom to use the computer I got to watch as the body of one of the children was removed from the floor. His name was Matt, he was 18 years old and he died today at 3:45pm. Please pray for peace and comfort for his family.

Please continue to pray for Peter’s healing and for his ability to recover from this last round of chemo. Please pray for wisdom for those who work in cancer research and for all of those involved in the care of these very sick children. Try to imagine what it feels like for all of the parents on this floor tonight who know that one of our children lost their fight today; and pray for strength for the children to continue to do battle.

Sunday, November 14, 2004 3:58 PM CST

Peter continues to improve slowly. His nausea and vomiting have been brought under control and he has not vomited today. The doctor’s have now lowered the amount of IV fluids that he is receiving. The number of dirty diapers is also on the decrease. He is drinking 4-6 ounces of formula at a time and today he ate half of a container of bananas.

His blood counts have not recovered. His white count remains at 0.1 and his platelets and hemoglobin are dropping once again. We hope that his white count will start to rebound now that the nausea and diarrhea are improving. I was talking to a Mom today on the floor and she told me that her son get a virus while he was neutropenic and they spent 3 weeks inpatient waiting for his white count to return (yikes)!

Dennis spent the night with Peter they watched Star Wars. Peter was engrossed for over 30 minutes. I think I will buy them light sabers’ for Christmas this year, although I fear for the dog. At 1:00am the two of them were eating barbecue potato chips and watching Baby Einstein.

I had the opportunity to go out for dinner with Aunt Beth and my cousin Trish. We had a blast. The girls had a slumber party and stayed up late talking and laughing. It was a wonderful break for me.

Please continue to pray for Peter’s healing and for his blood counts to rebound.

Saturday, November 13, 2004 1:12 PM CST

Peter continues to improve. When Grampy and Aunt Nanny left for home, we went to the playroom. We brought some nice toys back to our room and played and watched movies. After Daddy got home from work we went back to the playroom to play some more.

Peter’s nausea seems to be improving he is back to drinking 6 ounce bottles. He has not vomited since 5:00am yesterday. His diarrhea has not improved and the medical staff continues to adjust his IV fluids to correct his depleted electrolytes. The plan for today is to try to remove one of the nausea drugs and possibly increase the time between the doses of the second drug. Unfortunately his white count has not budged. It remains at 0.1 (I fear we will never go home again).

Sometimes when I’m trying to sleep I review in my head what I feel Peter’s needs will be over the next day or two. Last night was no exception. I feel asleep concerned about the changing of his insuflon and the insertion of his next peripheral line. You know God just does the best stuff! When I awoke Nurse Jen (the best nurse in the world) was standing in Peter’s doorway talking to someone in the hall. Jen normally works in the Pediatric Day Hospital and the infusion room. This weekend she took on an extra shift on the 9th floor taking care of inpatient kids. She took over Peter’s care and agreed to change his insuflon today. She will leave the clinic Monday morning and come to the floor to place his peripheral line.

Jen did change Peter’s insuflon this morning (the small subcutaneous catheter that allows us to give Peter’s neupogen injections without having to stick him each time) it was removed from his right leg and a new one placed in his left. The needle to place the insuflon is large but it gets removed and in its place a very small and pliable drinking straw type of hose stays in his leg for one week, so he gets one stick not seven.

I am still concerned about the placement of Peter’s peripheral line on Monday morning (an extra access for the isotope to be injected into in order to do the renal scan). Because the last time he got one it took me and one other nurse to hold him down while Jen placed it into his vein. The good news is that Jen’s nickname is “old one stick Jen”. He needs a renal scan again prior to starting the next round of chemo. The isotope cannot be put into his broviac catheter (the line in his chest) because he needs blood to be drawn back out of the broviac and the isotope could contaminate the blood.

Sitting to my right is my cousin Trish. She took the long ride to NYC today to watch me do laundry and clean the room at RMH. My sister in law Beth is flying in from Ohio today and I want everything to be just right for her stay! Dennis is at the hospital with Peter. They are watching Baby Einstein. Dennis now knows which animals live in the “Polar Region”.

Please continue to pray for Peter’s healing and for the swift rebound of his blood counts.

Friday, November 12, 2004 10:38 AM CST

Peter started to feel a little better late yesterday afternoon. When Daddy got home from work we took him into the halls for a walk. We were very fortunate because in the hallway we found the little blue BMW convertible that Peter like to ride. We took turns helping Peter drive and driving the IV pole. It was the first really happy smile that we’ve seen in awhile, with his tongue hanging out the side of the pacifier he steered first into the left wall and then into the right one. I have seen a similar look on Dennis' face when he drives the golf cart.

This morning at about 3:00am Peter wanted a bottle. He very quickly drank down 4 ounces (I was very proud). When his blood work came back we found out that he needed both blood and platelets once again. When I gave him the Tylenol to pre-medicate him for the blood products he got sick again and lost all four ounces. His diarrhea continues and is a bad as ever.

Just about the time his blood transfusion was finishing, Grampy and Aunt Nanny showed up to give me a break. Grammy sent along a new “Peter the Pick-up truck” toy for Peter to play with. The bed of it was just large enough to hold the cow that he received in a card this week from the Knechel Family. The blood gave him a burst of energy and he was very excited to see Grampy, in fact Grampy had to crawl in bed with Peter and watch Baby Noah with him. Grampy already knows his animals so he helped Peter learn a few. Aunt Nanny also had the wisdom to bring with her the elixir of life, Rosenberger’s Iced Tea.

Peter drank some ice tea and talked to Grampy about all of the things you talk to your Grampy about. It was wonderful to hear his sweet voice. Peter has not been able to go out on the streets to visit the banana man, so Aunt Nanny brought a few bananas’ with her. She gave him a quarter and he bought a banana from Grampy instead.

The Oncologist paid us a visit before I left for RMH. They feel that Peter is fighting a virus. The side effects from his chemo should be over by now. Peter’s nausea and vomiting was getting worse instead of better at the time when the chemo nausea and vomiting should have been ending. Peter’s white blood count is only 0.1, he lacks the ability to fight any kind of infection so he will remain in the hospital until it rebounds. I hope that will be on Monday or Tuesday, but it takes his body longer to rebound than it used to.

Someone donated Wiggles tickets to the RMH and we are the fortunate recipients of them. Peter loves the wiggles and we know all of the songs and the dances. I can’t wait to see his face when the curtain goes up and Captain Feather sword starts his pirate dance!

Please continue to pray for Peter’s complete healing from this cancer and for the rapid rebounding of his counts. We thank God for your continued love, support and prayers. We are very grateful for the kindness of strangers, like the person who donated these tickets, so we can have a special time away from doctors and hospitals.

Thursday, November 11, 2004 1:12 PM CST

Peter had a very hard night. We were not admitted to the floor until 11:00pm. Peter's nausea and vomiting continued inspite of the 3 nausea meds.

He is currently receiving IV fluids that have potassium and magnesium added to them, 2 different antibiotics and 3 different drugs for the nausea and vomiting. He has not had a fever since last night.

Today he has had 3 ounces of formula and has been able to keep it down. He sleeps most of the time. He awoke about 30 minutes ago so we are out of the room for a short walk to the play room.

Please continue to pray for Peter's healing.

Wednesday, November 10, 2004 5:09 PM CST

Peter's count were very low this morning and we were not able to leave for home as a result. He continues to have nausea and vomiting.

About mid-day I called his oncologist because he is no longer able to eat or drink. He ask us to come back to the clinic so that Peter could be hooked up to IV fluids via the back pack system we use after chemo.

I was able to get soon additional scripts for other drugs to help him battle the nausea. Dennis met us at the clinic when he got off the train.

We were just leaving with Peter when I noticed his face was flushed. While we were in the clinic he spiked a fever. We are now waiting to be admitted to the floor. We will remain inpatient until after his counts rebound. He will most liely rebound by Monday or Tuesday of next week.

Please pray that Peter does not have any type of infection brewing and that his counts rebound very quickly. Pray that his nausea and vomiting will be controled with his additional meds.

Tuesday, November 9, 2004 1:39 PM CST

We returned to NYC Sunday afternoon. I was wrong about Peter’s IV fluids being disconnected Sunday at 2:35pm; it was Monday at 2:35pm. We had a clinic visit and blood draw on Monday morning. Peter needed both a blood and platelet transfusion. He was also neutropenic when the labs came back, so the decision to stay home from church Sunday morning was the right one.

Peter continues to be at war with the chemo demons. His nausea and vomiting continues. Now that the IV has been disconnected he is a little more interested in his bottles. Today he had about 4 ounces of iced tea from the Sugar Loaf Café. His morning bottle was only 3 ounces, but he was able to keep it down so that was a break for him.

He was having some constipation problems last week. I started him back on medicine for that problem. Yesterday the damn broke. The dirty diapers haven’t stopped yet! The washer and dryer are running all the time.

I spoke to my Sister today, if Peter is able to fight the fever monster and all of his labs are good on Wednesday morning, her and my Dad will come to NY tomorrow to bring us home for a long weekend.

Monday Peter needs to have another kidney study done. This is to check his kidney function prior to starting the next round of “The Evil Chemo”. One of the women from the clinic told me that Peter is tolerating this chemo very well compared to the other children. I hate to think what they go though.

Dr Brown from Harleysville Veterinary Hospital just called me. Bailey Jayne’s pathology is back. The news was good (goods news is rare, we take what ever we can get) she was able to get clean margins on Bailey’s 2nd excision. The Bailey Jayne cancer sage has ended.

My little bald friend can no longer tolerate me ignoring him so I must go.

Please continue to pray for his ability to get through this round of chemo. Also join us in praising God for Ryan’s good PET scan (www.caringbridge.org/ne/ryan)

Saturday, November 6, 2004 11:48 PM CST

Thursday evening Peter became sick again. It started with crying and progressed to vomiting. He took no prisoners, the bed and floor and us were a mess. Unfortunately for Dennis I just can’t clean up vomit. It has become his job.

Friday morning my sister, Nancy arrived at RMH early enough to walk to the hospital with Peter and I. She spent the day with Peter so that I could clean our room and take care of the laundry and packing. Peter was discharged at 2:45pm. The car was packed and we waited for Dennis to return from work. The traffic was much better than we expected. We made a rest stop for diaper changes and made it home in good time.

Peter is till connected to his backpack of IV fluids and will remain that way until Sunday at about 2:35pm. The fluid bag is 5000ml and weighs a ton! Dennis is doing almost all of the carrying of Peter and the backpack. Peter does not have much of an appetite, this is not uncommon when he is being hydrated with IV fluids, but his Mom knows that it’s because of nausea. I decided not to be any laundry in PA this weekend. (I need a break, go figure.) Peter had a different idea of how my night should go and got sick in our bed; the dryer is running as I type.

This is by far the hardest that Peter has been hit with chemo side effects. I am in awe of him, he spent the whole week in the hospital getting chemo and has been feeling really bad since Wednesday evening, when we got home Friday night he wanted to climb the stairs. My Sister said, “This is Peter’s Mt Everest” and she right! It takes at least two of us to get him up the steps one to hold onto Peter and one to hold onto the backpack.

Peter’s next cycle of chemo is due the week of Thanksgiving, so we will be in NY that week. We will miss spending time with our families and friends. We hope that the Thanksgiving chemo will allow us to give thanks that Peter is still with us for many years to come.

We make a brief trip to Kohl’s today and ran into Sharon Moyer. It is so nice to be home and to have the opportunity to actually see someone that you know. My sister had us over for dinner tonight; Peter loves to go to her house to play with Ryan and Grant. Nancy walked around with the backpack so Peter could do some crawling around. This was a real joy for him and a nice break for us.

We are unsure if we will make church tomorrow. This was a new chemo for Peter and I don’t know when he will become neutropenic (low white count). The cold and flu season is here and we can’t risk exposing him to anything. Uncle Robert and Aunt Chris will be taking us back to NY on Sunday afternoon. We will miss another football game, GO EAGLES! I’m hoping for a short week in NY. If Peter can fight the fever monster one more time and we don’t get admitted to the hospital, I hope to return home on Wednesday night.

I’m looking forward to possibly taking a music class on Monday, after I find out what his blood counts are, and hopefully will get him back to physical therapy.

This morning I picked up Bailey Jayne at the Vet. Last Sunday after I removed her dressing she got a wound dehiscence. Dennis took her back to the Vet, she had to be anesthetized and re-sutured. We hope that things are healing well and that these sutures can be removed at the end of the week. No word on her last pathology. If her pathology shows clean margins then her cancer saga will be over.

I got the best phone call on Friday afternoon. It was from Elida Ruci, Reinalda’s Mom. She told me that her and Reinalda were waiting for her husband to pick them both up and take them home from the hospital. Praise God for his grace and healing!

Www.caringbridge.org/ne/ryan will get his scan results next week. Jan needs pray to get her through chemo side effects and back on her feet. The Brady’s www.caringbridge.org/de/haley and the Levine’s www.caringbridge.org/ma/coley need prayer to help them heal and find new a new “normal” as they adjust to life without their daughters.

Thanks to Great Aunt Dorothy & Great Uncle Russell, Uncle Ralph & Aunt Beth, Uncle Robert & Aunt Chris, Uncle Jamie & Aunt Nancy, Grammy & Grand pop.

Please pray for:
Safe travel
No fever
Successful physical therapy
Music class
Short week in NY
Toes that wiggle
No more nausea/vomiting
A baby that can walk
Strength for our marriage
God’s amazing gift of a full and complete miracle of healing for Peter

Thursday, November 4, 2004 7:14 AM CST

We left Sloan at about 5:30pm yesterday. Peter continues to be very tired. He started crying about 8:00pm because of nausea. He vomited once and we were able to get him to sleep without much trouble. I gave him zofran (for nausea) at 12:30am to help him make it though the morning.

We are waiting for our last dose of chemo to run. Tomorrow we will return for a day of hydration. We hope to make it home for the weekend.

I stopped at McDonald's on the way to the hospital to get Peter some pancakes. I hope that he will be hungry by the time his 3 nausea drugs run this morning.

Please pray for Ryan (www.caringbridge.org/ne/ryan) he has scans today and tomorrow. Also, a 6 year old girl named Kadesha who had a transplant of her leg bones and now has a spot on each lung. Her lung surgery is next week.

Thank you to Ann at home and Lisa in NY. Thanks for the cards we received at RMH yesterday, Russ, Ev and Charlene.

Please pray for Peter's continued healing

Wednesday, November 3, 2004 6:48 AM CST

We are half way done with this round of chemo. He gets two drugs today and one on Thursday. Friday is a day of post-hydration only.

The diaper changes have slowed to every two hours instead of every hour, this makes a big difference in the amount of sleep we get.

Dennis had a meeting last night and got back to our room at 11:00pm. He is traveling today and will return at 8:00pm. He will pick-up Peter's icecream and try to get him to eat it before he goes to bed.

Peter has stopped eating all foods again! We are back to formula bottles only and he's not very interested in them. Monday morning when he saw the banana man he yelled with joy and proudly bought his treat. Tuesday he didn't even look at him. Today I coaxed him into buying one but he won't eat it.

Please pray that these side effects pass quickly. Got to go they called our name.

Tuesday, November 2, 2004 8:56 AM CST

We were at the hospital by 7:00am today and back out tonight at 6:30pm. Peter had a clinic visit and blood draw. He made counts for his chemotherapy, but he did require a blood transfusion. His new chemo ran without any problems. He experienced hiccups a few times but no vomiting and he never appeared nauseous. He was able to drink his normal amount of formula bottles and he split an ice cream with Da Da. The post hydration fluids are running via the back with a pump in it.

He is on a diuretic to help move all the chemo out of his kidneys. The diaper changes are fast and furious. At the moment we are changing him every hour by the clock. The dirty laundry is already piling up. It’s Monday night and I already had a full load to wash.

As is the usual case here at RMH the laundry area is a waiting game. The washer stopped over an hour ago but someone else’s laundry is still in the dryer.

A massage school in NY was here tonight giving free 30 minute chair massages. I was able to get on the list and it felt great. They will be back here in two weeks and I will be on the list again.

We are very grateful to Peter’s doctors for the way they manage his care and control his nausea. Tomorrow he will have chemo again but we expect to leave the hospital by 5:30pm.

Thank you to Ruthann & Mark, Aunt Nanny, and Grammy.

Please pray for Peter’s ability to tolerate this chemo. No nausea or vomiting and a strong appetite. Please pray that we are able to meet his medical needs and for rest for Dennis and me.

Saturday, October 30, 2004 11:41 PM CDT

On Thursday afternoon I learned how to perform Peter’s blood draws from his line. The home healthcare company will no longer be able to provide that service to us. The local hospitals draw blood but not from pediatric lines. It looks like Mom will have to take over the blood draws or Peter will have to be stuck each time the doctor’s need labs. Peter’s blood was FedEx’d to a lab and the results called in to our doctors.

Friday morning while Cousin Trish and I were collecting some fall props (pumpkins, gourds etc) to take with us to The Picture People for Peter’s Halloween picture the phone rang. It was the lab letting me know that Peter needed a blood transfusion. We headed for the turnpike and NYC. While we were in route the phone rang again, it was the hospital letting me know that Peter’s transfusion could wait until Monday morning before his chemo ran.

So we turned around and headed for a quilting shop that Trish likes, Trish has been trying to get me there since I was pregnant with Peter. She will be making a patchwork quilt for Peter’s big boy room. She purchased some really neat flannel big boy material and a quilt pattern book.

From the quilt store we headed for the mall and The Picture People. We waited for Peter to wake up from his nap and dressed him in his frog costume. We sat him in front of a dark green background and surrounded him with all of Grampy Freed’s beautiful fall harvest. The crying was deafening. We couldn’t get a deceit picture of the poor little boy to save out lives. W left the mall with our “free” sheet of pictures of a very sad little frog.

We headed to Aunt Nanny’s house for a great dinner and to showoff our nice pictures. Peter was still proudly wearing his frog costume and he cleaned up trick or treating at Nanny’s. He scored a new Baby Einstein DVD. Stayed tuned to see what Dennis learns from Baby Noah.

Saturday morning we had breakfast with Grammy. Peter got to use his toddler fork again and he’s becoming a real pro. Kandace and Frank Pugh stopped by and restocked our freezer with more of Kandace’s wonderful home cooked meals. We had Grammy and Grand pop Freed over for dinner tonight. A small boy with a plastic pumpkin bucket turned upside down on his head provided our dining entertainment.

Somewhere in between all of this running around and eating we managed to squeeze all kinds of our homemade physical therapy into Peter’s days and nights. Peter has mastered the stair climb and decent. He can go over, through and around the couch cushion obstacle course. He can wave to Daddy through the storm door “no hands”, while he licks the glass. How many of us can say that! While all of this silliness goes on Peter is becoming stronger, happier and more independent. We are so happy for him and his accomplishments.

We will be leaving for NYC and the RMH on Sunday afternoon. Monday at 7:00am we will be at the clinic preparing for chemotherapy and a blood transfusion. This will be a very long week. This is a five-day chemo that causes severe nausea and vomiting. The round the clock diaper changes will also start on Monday.

Thank you Kandace & Frank, Aunt Nanny, Grammy & Grand pop, Trish, and James & Jamie.

Please pray for safe travel, controllable nausea, no vomiting and that this chemo will be an amazing success. Please pray the Peter will be able to eat and maintain his weight. Please pray for his continued strength and healing from his surgery, chemo and radiation. At this point he remains unable to wiggle his right toes, Please pray!

Tuesday, October 26, 2004 8:14 PM CDT

It is wonderful having this extra time at home; I will really hate to leave. We had the opportunity to roast a turkey Sunday night and have some family and friends over for dinner. Monday evening Dennis’ brother Mark and his wife Sharon brought Pop-pop Zucca to our home for a visit. Sharon brought all the ingredients for an awesome dinner and she prepared it for us. My parents, my sister Nancy and her son Ryan come down and we all enjoyed the meal and the time together.

Peter has been talking a lot more since we got home, when we are in NY his is very quiet and sometimes withdrawn. But, wouldn’t you know it when I wanted him to perform for Pop-pop he looked at me as if I was from Mars. He did eventually warm up and show everyone his left hand. I’m so proud.

Peter and I have been spending a lot of time climbing up and down the stairs and over the couch cushions. I also spend time massaging the muscles in his feet and legs and stretching his toes and ankles. We will not have the opportunity to work with the physical therapist for two weeks. That’s a long time without care so we do our own therapy here.

On Monday Nancy and I bathed Peter and changed his dressing and caps and flushed his lines. He was very tired by the time his bath was complete and he slept on the changing pad while we did his dressing change. The radiation has really worn him out.

The long break from chemo makes a big difference in his appetite. Today he ate great! He is much happier than he was last week, I can see the difference in his speech and his ability to learn new things. He knows which hand is his left and he is very proud of it. He claps and laughs when he gets it right. Today we spent time learning colors.

Thanks Aunt Sharon, Uncle Mark, Pop-pop and Aunt Nancy.

Please continue to keep Peter in your prayers; he still has a long journey of treatment and healing ahead of him.

Sunday, October 24, 2004 11:44 PM CDT

20 down 0 to go!
Peter has completed all 20 rounds of his pelvic radiation therapy. We are so very happy for him. He is also medicine free on Thursday – Sunday nights. He seems a little concerned when we go to bed without giving him any medicine. I hope he will soon be free of all of the oral medicine, injections, chemo, radiation and especially cancer for good.

Peter did not make counts on Friday morning so he will not receive chemotherapy on Monday. We were able to come home for the week! Peter will have a blood draw at our home on Thursday afternoon. If he needs any transfusions we will head to Sloan on Friday morning. If his counts are good we will return to Sloan on November 1, for 5 days of chemotherapy.

We continue to lift Peter before God’s throne for his full miracle of healing. Our lives have been so blessed by God’s amazing gift to us, Peter’s life. We have also been blessed by so many of our family, friends and by strangers who support us and lift us up in prayer for God’s blessings of healing, courage, strength and love for each other.

This morning during our church service the Pastor called Dennis, Peter and I into the center isle of the church where we were surrounded by the congregation who laid there hands on us and prayed. The pastor anointed the three of us with oil and asked the Lord’s blessing on us. It was awesome! It was just what we needed to start another week feeling refreshed, strengthened and loved by God and is amazing net of people.

This week we received a box at RMH inside it was a beautiful quilt. It was made for Peter by love quilts. They make quilts for sick children. There web address is, http://lovequilts2004children.homestead.com/PeterZ.html, if you would like to see Peter’s picture and a picture of his quilt.

One of the children that we met at Sloan and the RMH passed away this week. Her name is Nicole and she has a caring bridge also www.caringbridge.org/ma/coley. Please pray for her family as they go through this very difficult time.

Please join us in praising God for the end of Peter’s pelvic radiation and for this wonderful break in Peter’s care. Please pray for our ability to enjoy our time together at home and for good blood results on Thursday. A break is nice but we don’t want any long delays in his care.

Thursday, October 21, 2004 5:05 PM CDT

At1:30am Peter woke us with his crying.The urine bag had leaked and his bed was soaked and he was wet and cold. When we got to the hospital they decision was made to stop the urine collection because this type of collection does work on babies.

Then we went to the radiation therapy room, 19 down and 1 to go! Praise God! While Peter was asleep I had the urine bag removed. We were then sent to nuclear medicine to have his kidney’s tested. This was done because the urine collection didn’t work.

Peter had to be injected with a radioactive isotope. His broviac line could not be used for this part of the test because he had to have blood drawn from the broviac 1 ½ hours later and then 3 hours later and the blood could get contaminated by the isotope. The nurses in the infusion room placed a peripheral line in his arm,while he was awake. The nurse placed the line on the first try. But unfortunately it blew out and they had to place one in his other arm.

The amount of screaming and crying was just pitiful, and guess who got to hold him down. That’s right me! This was just one more special experience for us.

But there is very special news for Peter. Tonight is the 1st night since December of last year that Peter does not have any medicine to take before he goes to bed. His oral medications once numbered up to 28 per day and now they number only 3! We are so happy for him.

There is a barbeque tonight at RMH and it smells great. We will be having our dinner here. Daddy and Peter are playing on the Sesame Street web page Dennis can now count to six. We have laundry in the dryer and I need to go get it.

Thanks to Juan, Joanne, Sally and Zane.

Please continue to pray for Peter. If he does not make counts tomorrow we maybe home for a full week. If he makes counts he will have chemo on Monday.

Wednesday, October 20, 2004 3:38 PM CDT

Peter has now completed 18/20 of his radiation treatments. He continues to be tired and a little cranky. He also has a bag glued to his little pee pee. They are trying to perform a 24 hour urine collection on him. We are already on the second bag. The first one did not stay glued so urine leaked everywhere, in the diaper, his clothes and the stroller. He’s not too pleased with this situation and I sure can’t blame him.

There was a rather silly attempt made today to test Peter’s hearing. Just imagine they put ear pieces in his ears and then sent high pitched noises through them. Well, Peter cried and wanted no part of that one. The lady performing the test said to me “can’t you make him go to sleep so I can run the tests on him”? Who is sillier the doctor who ordered it or the one performing it. If any of you Moms out there knows how to “make” your child go to sleep on command PLEASE SIGN IN!

We had an appointment with the radiation oncologist today. They are now considering adding 10 rounds of radiation therapy to Peter’s lungs after he completes his pelvic radiation and the 4 rounds of chemotherapy. Will this nightmare ever end?

Thank you for your lovely posts. They always lift my spirits and renew my faith. We got a very special card today. One of the young men who attend our church sent Peter some stickers and sent us some very wise words of encouragement. Neal, Peter likes to put stickers on his little bald head. He is very happily covered in them right now.

We hope to add new pictures to caring bridge today or tomorrow. They are being resized for us to better fit your screens. As always we thank all of you for your love, prayers and support.

Please continue to hold Peter in your hearts and prayers.

I just finished typing and Peter started to cry, the tube came off his bag and his socks are now wet from the urine running in them.

Tuesday, October 19, 2004 4:37 PM CDT

Peter completed radiation 17/20 today. He continues to be very tired and has started taking 3 hour naps following his treatments. His physical therapist was sick today so we rescheduled for tomorrow afternoon instead of taking any chances of Peter catching what she has.

Our clinic visit this morning was very disappointing, Peter will not be finished with his chemotherapy when we expected. They will be adding a new drug to his chemo starting on Monday morning. He will get 2 rounds of this new chemo followed by 2 rounds of his old chemo. His lines will not be pulled in time for us to finish his treatments and be home by Christmas as we had planned for. FA LA LA LA LA!

We met Daddy for lunch today. It rained all day so we covered Peter’s stroller with a clear plastic tent style cover to keep him dry and mobile.

We went to music class today. The new instrument was the slide trombone. Peter isn’t very found of loud noises so this was not his favorite class. Yesterday we went to Gymboree and he had lots of fun crawling, climbing, and sliding.

Peter was on the Jane Pauley show today. He was on a clip with Brooke Shields. Dennis and Peter are sitting next to me playing a Sesame Street Elmo game on the computer. Peter will be a frog this year for Halloween. Please don't tell anyone. If he comes to your house he wants you to be surprised.

The Vet called today Bailey Jayne does have cancer and they did not get clean margins on her excision. She will need another surgery to try to remove it. It is not likely that she will be able to remove it completely without an amputation, which we will not put her through. It is a slow growing cancer and the hope is that it will not bother her for a very long time.

Thank you to Tiffany, Charlene, The Ladies sewing Circle at Towamencin and To Marcy for taking Jayner to the vet.

Please pray for Peter’s continued healing and his ability to tolerate his care. Please pray for a quick and successful end to this journey. Please ask for strength and rest for Dennis and I. Also some days I'm so sick and tired of this grind that my faith feels so weak.

Sunday, October 17, 2004 5:54 PM CDT

Thursday night Peter fell out of bed and hit his head. He had a very low platelet count and was developing a little bump. We ended up in the urgent care center at Sloan, Peter needed a neurological evaluation and a platelet transfusion to keep him from getting a brain bleed. He was doing fine from a neurological stand point so they chose not to do a CT of his head. We returned to our room at 1:00am on Friday morning. Peter was fine. We returned to Sloan at 7:00am for his radiation.

Peter has completed 15/20 of his radiation treatments. We will return tomorrow morning for number 16. He has physical therapy scheduled for Tuesday afternoon. I hope that his white blood count has rebounded and that his high risk for infections has now passed.

My brother Robert brought us back to NYC tonight. He and Dennis are out together at a very nice Italian market. Robert and his wife Chris like the fresh pasta and sauces that they sell. We were able to leave home a little later today and spent some time at my sister’s house. My nephew Grant’s 9th birthday party was today. Peter had a great time playing with the kids.

Thank you to Aunt Nancy, Uncle Robert & Aunt Chris, Grammy & Grand pop Freed, and Cousin Trish.

Please continue to pray for Peter’s ability to tolerate his treatments and for God’s complete and precious miracle of healing.

Thursday, October 14, 2004 8:49 AM CDT

As I write today my little man is next to me in the stroller, he’s sound asleep. His days are very hard. We just finished round 14 out of 20 of his radiation. His little tummy is getting very pink, he is very tired and is sometimes cranky. We continue to give him Zofran, which is nausea medicine to counter the side effects from last week’s chemotherapy. His appetite has taken another nosedive, although he does continue to eat and drink, we sometimes struggle to get even Haagen dasz ice cream into him. While the work is hard, I would have to say that his life and the way that he handles all of his care his truly miraculous!

I’m able to give Peter’s GCSF shot while he is under anesthesia so he never feels them. (They burn). Today after he was done in the radiation room, and still asleep, I changed his broviac dressings so he never had to go through that either. The hospital here has the nicest little gadget for giving children injections, it’s called an insufon. It’s a very small catheter that is placed in the subcutaneous tissue via a needle. The injection is then placed into the insufon instead of the child’s leg or arm. That means only one needle stick per week instead of seven.

Yesterday we had lunch with Daddy we walked to the outback steakhouse. Thanks Carlene. Last night we dined alfresco at Tony di Napoli’s. Thanks Robert and Chris. Peter’s white blood count is still very low and outdoor dining is the safest for him.

Peter had his physical therapy consultation yesterday. The therapist does not think that he will need occupational therapy. His abdominal muscles are very weak (he gets this from me) and so is the muscle that was grafted into his buttock. So for now they will play lots of fun games with balls and Elmo to help Peter to get stronger. We will return there on Tuesday afternoon. Peter also had another platelets transfusion yesterday following his radiation.

We did make it to music class on Tuesday. The instrument of the day, castanets! There are no words to describe this. We also revisited some of our old friends like the recorder and the guitar. I hope to get Peter back to class today. Music class remains one of his favorite activities.

If Peter is able to remain fever free we will be home for the weekend. I really want to get home to see the dog. Bailey Jayne had to have surgery today. She may have cancer too. I’m very sad and scared. I love her; she’s been my little girl for 7 years.

I spoke with Reinalda’s mom on Sunday night. She is doing very well. Her tracheotomy will be removed/ closed on Monday. She was also given a weekend pass to leave the rehabilitation facility for next weekend. She can walk with the help of a walker and speaks very well. She attends school at the hospital and has physical therapy almost the entire day. She appears to be making a miraculous recovery and we thank God for his gift!

Carol and Carl if you’re out there John will be in our hearts and prayers until his safe return from Iraq. He has been a wonderful friend to us helping with lawn care and repairing things at for us while we have been away from home.

Please continue to keep us in your prayers. Pray for Peter’s healing and for a quick rebound of his counts. Pray that he remains fever free. Ask God’s continued blessings on Reinalda and John’s families. Thank you for sharing your faith, love and encouragement with us via the guest book. It means so much!

Monday, October 11, 2004 3:21 PM CDT

We made it home late Friday night, Peter was still connected to two IV’s and pumps. We were able to disconnect him Saturday afternoon. This was his first taste of freedom since Monday at about 8:00am. He took off crawling all around the pumpkins at Grampy’s stand. Our time at home is much too brief!

We returned to RMH Sunday afternoon around 3:00pm. Dennis had to leave town for the night for a business trip. Peter and I ate take-out in the room, watched some Baby Einstein tapes and went to bed. We were back at Sloan this morning at 7:00am. Today was day 11/20 for Peter’s radiation. He tolerated everything well today. His blood counts were good today but we are anticipating a blood transfusion tomorrow after radiation.

When we left Sloan today we returned to RMH. We signed up for a bus trip to see the new movie Shark Tales tonight. Today is Columbus Day and NYC has a very large parade that runs along Central Park. Peter and I went to the parade it was several hours long. I bought Peter an Italian flag and a button that reads, “I’m proud to be Italian”. He looked very cute wearing his button and waving his flag. Regional News Network had the good sense to agree with me on that one and our little Peter was filmed for tonight’s news.

We will be returning to Sloan tomorrow morning at 7:00am for our next round of radiation. Wednesday afternoon is the consultation for physical and occupational therapy. I’m hoping that the occupational therapist can get Peter into the work force ASAP he’s costing us a fortune.

Hopefully Peter will remain fever free this week and we will avoid a hospital admission. I’m planning to return to music classes and maybe the zoo if Peter is able to handle it.

Please pray that Peter continues to gain weight remains fever free (so we can come home this weekend and have some fun in NYC this week), and that God continues to bless him with the full miracle of healing. Also my friend John is leaving for Iraq this week. Please pray for his safety and ask God to give peace to his parents.

Thursday, October 7, 2004 1:47 PM CDT

Peter has finished day 4 of his chemo and radiation. His blood work this morning was great! No transfusions needed. We are waiting for his IV fluids to finish running so we can be connected to the back pack of IV fluids and leave for the night.

Last night when we were leaving Sloan, Peter spotted a lady eating a banana, he made it very clear that there would be no peace until we found the Banana Man. Peter ate nearly the entire banana.

I was talking to another Mom today, her daughter got a feeding tube last week. We continue to pray for and work at feeding Peter the most high calorie foods we can get into him. His bedtime snack is vanilla Hagan Das. It has 170 calories in about 4 ounces. His weight is up to 23 pounds. I'd like to see him at 25-30 pounds.

Please pray that Peter continues to tolerate his treatments, that his weight continues to increase, and that he remains fever free when his white blood count drops.

Thank you to Bruce & Debbie, Russ & Ev, Linda, Charlene and God.

Thursday, October 7, 2004 1:47 PM CDT

Wednesday, October 6, 2004 2:07 PM CDT

Just 2 more days of this long week to go, Peter continues to amaze us. He is still eating well even with 3 doses of chemo and radiation. He's still laughing, playing and keeping me on my toes.

We saw his orthopedic surgeon today and he feels that Peter is doing well. Peter will need to be followed by a surgeon every 3 months, and have xrays every 6 months. He wrote a referral for physical and occupational therapy.

We have an appointment next week at a different hospital for therapy. They are better able to handle babies who need therapy.

We will be coming home on Friday. Peter will still be connected to his post-hydration IV fluids and pumps. I will be disconnecting him on Saturday morning.

Peter was on The View this morning. Brooke Shields was on the show and they showed a clip of her kissing Peter.

Please continue to pray for Peter's full recovery. I'm still waiting for his toes to wiggle and to watch him walk across the floor without any help. Please pray that Dennis and I are able to continue meet his needs.

Tuesday, October 5, 2004 4:12pm EDT

Peter did well with his radiation today. His blood counts were fine so no transfusions today. Chemo was also uneventful. We will be leaving Sloan today at 5:00pm.

Peter has a bright pink mark on his left cheek. Not to worry it's just a little lipstick from a kiss that Brooke Shields gave him today. She also feed him his afternoon bottle. We signed a release for the pictures and film to be on "Access Hollywood". We don't know when that will be, but Brooke is giving her time to the RMH.

7:08am EDT

Peter and I arrived at Sloan by 7:00am yesterday. He had a clinic visit, blood draw, anesthia, radiation, recovery room visit, chemotherapy, and blood transfusion, all by 5:00pm. We left we a back of IV fluids and pumps. I am very glad that Daddy is here with us to help carry that backpack!

Peter is tolerating his care very well and he continues to eat well.

We are back at Sloan for more of the same today.

Please pray that Peter is able to tolerate all of his care and that we are able to meet his medical needs.

Lloyd we are glad that you and Tim were not hurt in the car accident and that your son, Mark, is doing better. Praise God!

Sunday, October 3, 2004 8:29 PM CDT

We enjoyed our weekend at home. Since we requested prayer for Peter’s appetite, he has been eating very well. He's had chips & ice cream, pancakes with lots of butter & syrup & anything fattening we can get into him.

We’re back in New York; tomorrow starts a very long week for Peter with radiation & chemo everyday.

Thank you to Great Aunt Alice, Aunt Chris & Uncle Robert, Grammy & Grandpop Freed, Kim,Shirley, Kandace & Frank, and the Sauter's.

Please pray that Peter is able to tolerate everything he has to go through this week. All of Peter’s care will be on an outpatient basis, please pray that we are able to meet all of his medical needs while he is in our care.

Friday, October 1, 2004 6:00 AM CDT

Peter and I are st Sloan right now waiting for our clinic visit. He will have blood work this morning and I am hoping he doesn't need any transfusions. This is round 5 of 20 for his radiation. So far the only change I'm noticing is that he is naping again (not that naping breaks my heart).

I was told that his radtion would take about 2 weeks to catch up to him. So by next weekend he should be feeling any effects that he's going to. He will start chemo next Monday. Next week will be very tough! Chemo and radiation every day.

We had lunch with Daddy yesterday and later went to music class. There were only 5 little boys in class but they could put a hurting on those instruments. We revisited our old friends the accordian, the wave drum and the recorder. Peter crawled into the middle of the room and brought back a hand puppet for the old MacDonald song. That was a big step for him and the first time he did it by himself. He stood and helped with all clean up.

There is a toy mounted on the wall in the clinic waiting room (one of those things with all the curved wires that you push beads on) he stood on the couch for about 5 minutes yesterday to play with it.

Last night we were given tickets to see Barney live on stage at Radio City Music Hall. Peter likes Barney on television but not up close. We were in the 5th row. This was like watching a horror film for Peter, he was scared to death but he couldn't look away. We stayed for half the show. As long as the kids and Baby Bop were on stage he really liked it. Daddy bought Peter a Mister Softee before the show.

We hope to be returning home for the weekend and are looking forward to seeing everyone. Please pray for safe travel, good blood work, and no issues with todays radiation. Please continue to pray for Peter's weight gain.

Wednesday, September 29, 2004 7:39 PM CDT

Peter’s clinic visit went well, all counts were good, although he is losing too much weight. He weighed 25 lbs at 9 months of age. He is now 19 months old & weighs 20 lbs. We need to get some weight back on him or he will be a candidate for another NG tube or a gastric tube for TPN feeding. We’re not interested in either of those options, so tonight Dennis made the ultimate sacrifice of sharing Ben & Jerry’s Cherry Garcia ice cream (3.6 ozs. for $2. I love NY!) Peter got about 110 calories worth. We also paid a visit to the banana man.

Peter had music class today. Clean up time at the music class is stimulating Peter to try to stand & walk, he wants to help clean up. Today was a special day; they added the accordion & tambourine to this class. Picture 8 1-year olds, playing the squeezebox. All of this makes me homesick for my former co-worker, Dottie, who is a master accordion player.

Thank you to Aunt Nancy & the Knechels. We hope to go to music class & Gymboree tomorrow if all goes well. Please continue to pray that Peter continues to tolerate the radiation, that tomorrow is another good day, & that he gains some weight.

Tuesday, September 28, 2004 5:49 PM CDT

We got to Sloan by 7:00am this morning, I put the baby bottles in the dishwasher, we saw the doctor, went to the infusion room to get the IV fluids hooked up and headed to radiation all by 7:45am. This morning Peter fell asleep in the stroller and I laid him on the table. Before I knew it he was back in the recovery area. He was still asleep when he got to recovery because his time in the radiation room was much shorter today.

While he was still sleeping I cut his finger nails and toe nails. His nurse helped me by removing a Band-Aid from the top of his foot. Peter got a very small cut over the weekend while crawling around the pumpkin wagon. Dennis cleaned it and put a Band-Aid on it. When the Band-Aid came off the cut was infected. We ended back to the clinic to have it looked at. It’s not too bad but it will require antibiotic ointment until it’s healed. Peter’s immune system is compromised from all of his treatments. We picked up the bottles and we were back on streets by 9:15. This was a much easier morning for us.

We went back to RMH. I cleaned the room and sorted our laundry (Peter likes to help with the laundry because he rides on top of the basket and holds the detergent bottle for me) the washer and dryer were being used so we took a much needed 2 hour nap. We went to the Sugar Loaf Café for a sandwich, the man who owns it makes a bid fuss over Peter and now it gets excited when we go there. While we were there we meet a nice lady she has 2 little boys and has invited Peter to come for swim in their building. She lives near RMH and I think we may call her for a rainy day play date.

Our next stop was at Hands On for another rousing round of 1 year old music lessons. Today they added guitar plucking and strumming. Imagine the sounds! Peter did very well, because he has Pop Pop Zucca’s long fingers. He is a good listener and likes to help cleanup. Clean up is very important because all of the other children can walk to the bins and put their instruments away by themselves. Peter and I talk about helping like the other children do; I stand him up and help him make his way to the bins to put away his instruments. He likes this very much and today he helped every time, sometimes standing for a minute or two at a time. Not much of an accomplishment for some children but a very special thrill for the Miracle Man and his Mama.

Tomorrow we need to be at Sloan by 7:00am. I’m tired. Peter seems to be doing well and we are grateful for that. We continue to fast and pray every time that Peter has to fast we hope you will consider joining us. I don’t think that I told you but on Sunday morning the children at Church gathered around Peter and laid hands on him to pray. Their faces were so sweet and sincere I know that God smiled.

Please continue to pray for Peter’s protection form the radiation and for his continued ability to tolerate all of his care and his time away from home. Thank you for all your love and support.

Monday, September 27, 2004 6:09 PM CDT

This turned out to be a very long and tiring day. We were at the hospital by 7:00am; we had a clinic visit then a blood draw. Peter’s lines were connected to some fluids so that the anesthesiologist could administer anesthesia through them. Peter fell asleep in the stroller before I could even get him into my arms. I placed him on the table and his lower body was placed into a form that was made for him during his radiation simulation. I left the room and ask God to hold Peter in his arms since I couldn’t hold him in mine.

Peter was in the room for about one hour, he underwent a series of x-rays and markings, and then he was radiated. He awoke from his anesthesia very quickly and I heard his cries as he was moved from the room and into the hallway.

We returned to the clinic area, and Peter got a bed there. The plan was to start chemotherapy today. Peter’s hemoglobin was too low and he ended up with a blood transfusion instead. This is the first time that Peter didn’t make count for chemotherapy since his care started.

Peter had some vomiting today and continues to have issues with diarrhea. I changed his clothes 4 times today and my own twice. We left the hospital by about 4:40. We need to be back by 7:00am tomorrow morning. Radiation will be at 8:00am, no x-rays or special setup so it should take about 15 minutes.

Dennis and Peter are watching Baby Einstein videos; Dennis now knows his shapes, colors, all the barnyard animals and the sounds they make. Do me a favor next time you see Dennis ask him what the cow says. Thanks!

Please continue to pray for God’s protection while Peter is radiated, that his GI tract recovers. Pray for good blood counts so that Peter can be given chemo next Monday. Pray that Peter’s energy level will remain high so he can go to music class tomorrow.

Thank you to Aunt Nancy, Grammy & Grampy Freed, Jill, The Towamencin MYF (you guys are amazing), Brad and Marcy. Thank you all for your prayers and especially to those of you who fasted.

Stacey, you got a puppy? Aren’t 9 children enough work for you? Peter will be very happy to see him and Dennis knows that the puppy says “woof woof”.

Saturday, September 25, 2004 11:10 PM CDT

We will be leaving for NYC on Sunday afternoon. Peter has his first round of radiation therapy on Monday morning. When I signed the consent forms for his chemotherapy, I cried. I told his doctors that I thought little league would be the first thing I signed him up for. I felt the same way signing his radiation consent forms.

Peter will need to be at the hospital early every day this week. He will need to fast each day because he will have anesthesia each morning. He must be completely asleep to be radiated any movement could potentially direct the radiation to the wrong place. Five days of radiation for Peter means that there will be five days that he falls asleep in my arms and I hand him over to strangers and walk out of the room.

The radiation to the front of Peter will be in a dose low enough to prevent damage to his growth plates. The radiation in the back is not low dose and the possibility exists that his growth plates will be in the radiation field, if that happens Peter will not grow normally in the future.

Please join us in prayer and consider fasting along with Peter and Dennis and I each morning of Peter’s radiation. Please ask God to protect Peter’s growth plates from harm. Pray that any and all microscopic disease left behind after surgery will be destroyed completely. Please continue to pray that God blesses Peter with the full miracle, a complete victory over his cancer with his entire body in tact and fully functioning.

God can you please listen to me… my heart is broken; I’m tired and weak.
The precious boy that you entrusted to me…he’s sick he’s hurting how can it be?
I pray without ceasing… through nights with no sleep.
I once was his Mother… now I’m a nurse and a doctor instead.
Each step of this journey is paved with my tears…you know it’s so true I must humbly confess.
But you have walked beside me each step of the way…you have sent your blessings and strength for each day.
God can you please listen to me…a son is a precious gift and yours died for me.

Friday, September 24, 2004 3:56 PM CDT

Peter’s clinic visit this morning went well. His blood counts were all high enough to avoid transfusions today. He will start radiation therapy on Monday morning. We need to be at the hospital each day by 7:00am. Peter will in all likelihood need at least one blood transfusion each week to keep his hemoglobin at 10 or above. Ten is the magic number for radiation treatments to work their best.

Peter will also be receiving chemotherapy in conjunction with the radiation. That means blood and platelet transfusions and GCSF injections will be going on as well. Don’t forget diaper changes round the clock at maximum intervals of every 2 hours, all this fun and 7:00am hospital appointments for 4 solid weeks. Is there enough caffeine in NYC to keep us going?

By the way Peter started taking music lessons. There is a wonderful little place on the corner near the RMH . We can easily walk there and the owner is kind enough to allow Peter to come any day that he feels well and join in the fun free of charge. Peter has met some very sweet children and I have met some very nice Mommy’s. Peter has a special gift with the bongo drums and maracas. Today they added the xylophone. You really can’t enjoy the xylophone until you have heard a dozen 1 year olds playing it at the same time. I will let you know when he cuts his first album.

We will be spending the weekend at home. We are looking forward to seeing everyone again. The pumpkins are ready to be picked and the golf cart is ready for Peter’s next ride. Lloyd and Maryanne are bringing us dinner tonight.

We are so thankful for all your love and support. Thank you for signing the guest book it really does mean a lot to me. By the way Great Aunt Dolly did very well with her surgery and I know that she appreciated your prayers just like we do. Thank you to Lloyd and Maryanne, Mark and Ruthann and as always my Sister, Nancy. God is so good!

Wednesday, September 22, 2004 5:27 PM CDT

Peter’s clinic visit today was very interesting. His white blood count has finally recovered and the high risk of fever and infection is now over. But, his platelet count is so low that even after today’s transfusion his surgery for Friday had to be postponed.

The surgeon, oncologist and radiation oncologist all spoke and they decided to proceed with radiation on Monday morning and remove the piece of drain after radiation is complete.

Today was Peter’s first normal bowel movement since his surgery 5 weeks ago. The next diaper was far from normal. It was basically all blood. You know it’s been awhile since I ran but with a diaper full of blood I’m still good for about a 7-minute mile down the street to Sloan-Kettering. Who knew that all those 5K & 10K runs were to train me to run to the hospital. Turns out that he is fine and the diaper is the result of a couple of things:

1. His low white count allowed his mucosa to thin and tear after his BM.

2. The low platelet count paved the way for bleeding.

We have a clinic visit early on Friday morning. Peter will have his platelet count checked again and he will most likely need to be transfused. I have made arrangement with the blood bank at Sloan to give platelets on Thursday of this week, Tuesday of next week and to give red blood next Thursday. If you come across any blood drives at your church or work, please give. The amount of blood products it takes to get one person through chemotherapy and radiation therapy is staggering.

On a happy note, Peter paid a visit to the banana man tonight.

Please continue to pray for Peter’s miracle of complete healing. Pray for wisdom for those who work in cancer research. Please thank God for the doctors and nurses and the care that they give to all the sick children. Peter’s Great Aunt Dolly underwent surgery today to repair a broken hip please pray for her recovery.

Thank you again for all your prayers, love and support.

Monday, September 20, 2004 10:00 PM EDT

Peter had a great day. His clinic visit was good and his doctor gave the approval to start weaning him off of his neurontin (a drug for nerve pain). This should be completed in about 3-4 weeks. His hemoglobin and platelet counts are still low but not low enough to necessitate transfusions. His white blood count is still very low at 0.2. Normal is 4-11. We are continuing the GCSF injections and he will have repeat lab work on Wednesday morning. If his white blood count does not rebound in time Peter’s surgery will need to be postponed.

The best part of Peter’s clinic visit took place in the waiting room. Peter’s friend Lynn and her parents, Sheila and Harvey, gave Peter a Raggedy Andy. Then it happened, Miss Vicky came out to the waiting room to call the next patient. Peter heard her voice and we decided to surprise her so we both stood up. When Vicky came to see Peter we each took one of his hands and he took SIX STEPS!!!

After the trip to the hospital we took a walk to gymboree. The owners and management there have been kind enough to offer Peter one free class a week for the length of our stay in NY. Thank you, Lois. After his workout at the Gym Peter likes to unwind at the local produce stand. Bananas are a quarter and Peter has a bag full of change from Grammy. He gives the banana man his quarter and then picks out his fruit. The banana man thinks Peter is cute. I think the banana man is one smart guy!

We headed back to the RMH and waited for Daddy to get back home. We were fortunate enough to be able to go on an outing with RMH tonight. It was a harbor tour of Manhatten on a FDNY fire boat the kind that put fires out from the water. They brought hoagies and drinks on board so we had a dinner cruise. We had a beautiful view of the Statute of Liberty and the Brooklyn Bridge.

Please pray that Peter’s white count rebounds in time for his surgery to take place. Please join us in praising God for our little man’s precious steps. Please continue to pray that Peter receives God complete miracle of healing. Peter still has a long way to go.

We thank you for your continued love, support and prayers. Please sign the guest book so we know that you’re still checking in and still praying for Peter.

Sunday, September 19, 2004 7:46 PM CDT

Friday morning Peter had a clinic visit & blood draw. He needed both platelets & red blood. The clinic was so filled with children that there were no beds available. Angel child that he is, Peter slept in his stroller through both transfusions. Peter never did get a fever & we were able to spend the weekend at home. Saturday morning, Janelle Knechel (21/2 years old) came to Peter’s house for a play date. They played with puzzles & balls & she impressed Peter by going down the sliding board headfirst!
Aunt Nancy & Ryan brought us back to New York today. WE walked through town & returned to our room for dinner from KFC. Later Peter had a dressing change, cap change & GCSF injection, along with the evening meds. When we were done with that, Peter checked Daddy’s pupils with his new flashlight from Grammy. Poor Daddy is still seeing spots. Peter is doing fine.

We have an early morning clinic visit with a blood draw. I am anticipating additional blood transfusions. Dennis will be traveling on business all day & night tomorrow. Tuesday evening we are going to travel to Sloan’s blood donor center. I am going to start donating blood & platelets for Peter. As far as we know, Peter’s surgery to remove the piece of drain from his leg is Thursday. If everything goes OK, we hope to come home Thursday night.

Please pray that Peter’s white blood count has rebounded, so we can stop his GCSF injections, and that he no longer requires platelets & blood transfusions. Please pray that Thursday’s surgery is uneventful & that Peter makes a quick recovery from it.

Thank you to Carol & Carl, Great Aunt Dolly, Grammy Freed, Ann & Curt, Linda & Harry, & Martha. A special thank you to Aunt Nancy for the Mister Softy money. I’m sorry if I missed you name & owe a thank you. I may have forgotten your name, but not your kindness. I will put in a more complete thank you list when I get home.

Thursday, September 16, 2004 4:47 PM CDT

Peter remains fever free! We had a great day together! We took the baby bottles to Sloan-Kettering so that we could put them in the dishwasher there. While they were washing we paid a brief visit to Reinalda.

She looks so good she was wearing her own clothing, a nice change from the hospital gown. If everything went as planned she should be in the rehab facility by now.

Our next stop was the Gymboree (about a 20 block walk from the hospital). Peter was allowed to join a class that was in session. He loved it. I asked him if he wanted to leave and he kept shaking his head no. He did a lot of crawling and spent some time climbing on and off of the mats. He chattered to himself and smiled, laughed and played for the full hour. They blew bubbles and sang songs. Peter made another new friend her name is Isabella. She is 2 years old and pretty as a princess. We hope to see her again. Hi to Julie.

After we picked up the bottles we stopped at St. Catherine’s Park and bought a Mister Softee. Peter thoroughly enjoyed himself and so did the people walking by. He had so much vanilla ice cream on his face that he looked like Burl Ives in the Rudolph the Red nosed Reindeer movie.

We have an early morning appointment at Sloan tomorrow, a clinic visit and blood draw. I am anticipating a blood transfusion. If all goes well Aunt Nancy will be picking us up tomorrow afternoon and we will be home in time for dinner. Yeah!

Please continue to keep Peter, Mom and Dad in your prayers. Please pray that Peter remains fever free until his white blood count rebounds early next week. Don’t forget he also has surgery on Wednesday to remove the drain.

We thank you for your continued love, support and prayers. Tristin, Peter sends a very big hi your way. Be on the look out for a new photo of Tristin and Peter at the Zoo coming this weekend.

Wednesday, September 15, 2004 9:40 PM CDT

Peter’s clinic visit went well today. His blood work showed that he needed a platelet transfusion. He received a platelet transfusion and some additional fluids. The extra fluids were given for 2 reasons, the first to make sure his hydration levels were ok, due to all the diarrhea as a result of the antibiotics. The other reason was to flood his kidneys so they could get a good urine specimen to see where the UTI is at. We stayed at the hospital several hours following the blood transfusion; just to be sure Peter didn’t get a blood reaction, followed by a fever. His temp at 3:30 was normal, so we left for the Ronald McDonald house. If he continues to do well, our next appt at Sloan is Friday morning. He will have a clinic visit & blood draw. They are anticipating his hemoglobin will be low enough that he will need a blood transfusion. The physician assistant said Peter is very strong to have received this type of chemo & still not be admitted for a fever.

Please continue to pray that Peter makes it through this week without fevers, mouth sores or any other problems related to his chemo. Pray that we are able to make it home this weekend and that things go well next Wednesday when Peter is scheduled to have the drain removed from his leg.

Bailey Jayne, Mommy is very sorry that cousin Trish does not know how to spell your name.

Thanks Trish for updating the Caring Bridge for me.

Tuesday, September 14, 2004 9:29 PM CDT

Peter had a rough night last night. He woke up frequently, crying. The amount of bottles that he was drinking dropped off drastically. He was coughing & crying like he did the last time he had sores in his throat. I thought we would need to be admitted today. Around 8:00 AM he drank a 4oz. bottle & fell asleep till 10:45. He woke up hungry & raring to go, with no sign of a fever & NO ADMISSION! (Praise the Lord, keep those prayers coming.)

We loaded up the stroller & headed out on the streets. Peter & I walked 60 blocks round trip to have lunch with Daddy. We met a lot of nice people at Daddy’s work, many who follow the Caring Bridge and pray for Peter. Hi to Alex, Julie, Michelle, Mike, Steve & Rita. It was nice to meet you all.

Tomorrow AM we have an early clinic visit with lab work. This will most likely result in a blood and/or platelet transfusion.

Please pray that Peter continues to tolerate this chemo, that he does not develop mouth sores or a fever. He continues to have issues with his stomach & bowels, due to the antibiotics needed to fight the urinary tract infection. He will continue on the antibiotics through Sat. evening. We’ve changed so many dirty diapers that Peter is starting to cry when he sees us get a clean diaper.

Thank you for your continued love, support & prayers. If Peter continues to do well, we hope to come home this weekend. We miss our family & friends, especially Bailey Jane. We hope to post new photos on the weekend.

Monday, September 13, 2004 7:22 PM CDT

We arrived in NY Sunday afternoon. There was a street fair within walking distance of the RMH. Peter, Daddy and I loaded up the stroller and headed out. Much to Peter’s delight there were free balloons, lots of people walking dogs, and lots of good people watching. When we came back to our room there was lots of time to play with Daddy. Peter’s giggles and laughter were so infectious and sweet that we had to call Pop Pop and Grammy and Grand Pop Freed to share it.

This morning Daddy headed to work and Peter and I got to sleep in. We had a clinic visit and blood draw at 10:00am at Sloan. The clinic visit was fine and Peter’s labs are still pretty good. His white blood count has dropped and he is now neutropenic. We need to be careful about being in close quarters with people who maybe sick and to keep him from touching dirty things. We will return to Sloan on Wednesday, early. Peter will definitely need blood and/or platelets by then. The doctor told us to keep a close eye on Peter because his chemo last week was very harsh. They are expecting a fever and admission this week. So far he is doing just great.

I took Peter to Central Park Zoo today. He made a very nice new friend. His name is Tristin and he is 21 months old. He likes to push and pull the stroller while Peter is in it. Peter thinks this is just the finest game ever (almost as good as playing with Daddy). Peter was laughing very hard at Tristin. Tristin is a good hugger and a good kisser this are very nice traits in a friend.

We spent some time in the children’ zoo this is the area where you put all of your money into a little machine and get back a very small amount of pellets so that your child can feed the animals. When your change runs out so does your Childs smile, great concept.

One of the highlights at the zoo was a very large polar bear that like to swim laps. He was adorable and Peter was very impressed with him. He also enjoyed the penguins and the monkeys. When we were leaving the zoo Tristin’s mom treated the boys to balloon animals.

Next we headed further into the park. We got to watch a beautiful Wedding and saw some big horses pulling carriages. We found an old carousel ride. If Peter does not have a fever or any other health problem tomorrow we will try to take a ride on it.

With Peter’s white count low we looked for another outdoor café. We had dinner at Cilantro’s a Mexican restaurant that has a $10.00 fajita night on Monday’s. Peter had his usual, a Rosenberger’s iced tea from home.

Last night we paid a visit to Reinalda’s room. Praise God for her healing! She is doing so much better it is truly a blessing from the Lord. She stays awake for the entire day now. She had family visit her and they ask her about a funny story from 10 years ago. She laughed so hard her whole body was shaking. She is unable to speak because of her tracheotomy, but she understands every thing you say or ask of her. She will be entering a rehab facility this week. I’m going to try to pull together a group of ladies who would be willing to call Reinalda’s mom and pray with her over the phone. The rehab facility will be a difficult step for her and I know that lifting Reinalda in pray with one of us each day would be a blessing to Mom.

Please pray that Peter’s continues to tolerate his chemo, that his UTI resolves and that his bowel movement will soon return to normal (the antibiotics are reeking havoc on his little GI tract. Please pray that Peter does not get a fever or require hospitalization this week. Also pray that he does not get the sores in his mouth and throat like he had the last time he had chemo.

Saturday, September 11, 2004 5:59 AM CDT

Aunt Nancy made it to NY yesterday at about 12:00 noon. She came armed with a carpet shampooer. Our room at RMH is not cleaned by anyone but us. The carpets were very dirty. Peter’s ability fight infection will be very low by Monday. Since he is crawling again we wanted to make sure his space is as clean as possible. Nancy had the carpet clean in no time. We headed out for lunch and to pick up a sandwich for Daddy. As soon as Daddy was home from work we headed home.

Boy, home sure looks good and feels even better. Mommy, Daddy, Peter and Bailey Jayne headed up to the produce stand and commandeered Grampy’s golf cart. We took our evening golf cart ride and headed out for dinner. We saw Uncle Robert and Aunt Chris they were at the table next to us at the Vernfield Station. They both thought that Peter looked great! He really does, his coloring is very good and his eye lashes and eyebrows have grown back so he just looks like a little boy with no hair.

Jim Hilston stopped at the house last night. He is a friend of ours and also our chiropractor. He has been adjusting Peter using a technique called Toftness ever since Peter was born. We have discovered that these adjustments have a huge impact on Peter’s ability to tolerate chemotherapy, specifically the nausea and vomiting. We have found that adjusting Peter as close to the end of his chemo as possible really keeps the nausea and vomiting down. Jim has made many late night visits tour home to help with Peter’s recovery. Thanks Jim!

When we woke up this morning we found that our grass had been cut for us. Thanks Darryl!

We are looking forward to a nice weekend at home.

Please continue to pray for Peter’s recovery from surgery, his ability to tolerate his chemotherapy and a complete healing from his cancer

Wednesday, September 8, 2004 7:32 PM CDT

Today was Peter’s final chemotherapy for the week; everything went fine. We asked for a urine culture yesterday, it came back that Peter has a urinary tract infection. He’s on another antibiotic 3 times a day for 10 days to combat this infection. They’re giving Peter mass quantities of fluid to flush the chemo from his system & he’s trying to pass all this fluid with a UTI, poor child. We returned to the Ronald McDonald house with the IV backpack of fluid once again. The nice thing about the last day of chemo is that it’s the last night of diaper changes every 2 hours, by the clock. We set 3 alarms in each cell phone, so we’ve got plenty of alarms to get us up.

Peter’s surgery to remove the drain from his buttock incision is scheduled for Sept. 23. Sept. 27 is the scheduled date for the start of radiation. Physical therapy should start late next week or early the following week.

Tomorrow is a full day at the hospital starting around 7:30 with a doctor visit, to the Pediatric Day hospital for post chemo hydration, till around 3:00 or 4:00 PM. As far as I know, Peter does not have any doctor visits scheduled for Friday. We hope to have Nancy pick us up Friday afternoon.

Tuesday, September 7, 2004 8:51 PM CDT

Mommy & Peter both caught a cold. We came to New York Monday, instead of Sunday. Peter went to the doctor this morning; he had a good checkup. He also had blood drawn all those results were good as well. Peter & I went to the Pediatric Day Hospital, where they ran chemotherapy. By 5:30 PM chemo was finished & they had Peter’s backpack filled with 2 IV’s & 2 pumps. We left the hospital & met Daddy on the street. We ate dinner at an outdoor café. Peter was given IV steroids as part of his chemo routine. The steroids made him very hungry. He ate veal parmesan, chicken marsala, green beans, carrots, bread and a lot of deep fried OLIVES! By the time we got back to the Ronald McDonald House, he was ready for a bottle.

They gave Peter Ativan before we left the hospital tonight to keep him relaxed following the chemo. It has had the opposite effect. He’s running us ragged. His activity level is so high, we’re afraid he’s going to pull his lines out. We return to the hospital tomorrow at 7:30 AM for another clinic visit and another round of chemo. Before we leave the hospital tomorrow, I’m going to request Peter’s Ativan for myself.

I visited & prayed with Reinalda and her mother. She looks well & remembers me. They are moving her to a rehabilitation facility soon. Please pray that Reinalda continues to improve and that the Lord will touch her family.

Please pray that Peter continues to tolerate his chemotherapy well and that this chemotherapy will completely destroy any cancerous cells that may have been left behind following his surgery.

(This is really Trish updating at Dawn’s request. The update is hers, I’m afraid I don’t have Dawn’s flair for writing. Peter was being crazy, so we had to be quick!)

Saturday, September 4, 2004 10:31 PM CDT

We will be leaving for NY tomorrow afternoon. Peter is scheduled for chemotherapy on Tuesday morning. At the moment he seems to have a pretty bad cold. We don’t know if this will delay his care in anyway or have no affect at all on the running of his chemo.

We really enjoyed our time at home and hate to return to NY tomorrow. But the best place for Peter to be right now is at Sloan-Kettering. His healing seems to be there and as the song goes…"I guess the Lord must be in New York City".

We are grateful to all of the doctor’s and nurses who have participated in his care both at AI duPont and at Sloan-Kettering.

Please pray for:

1. Safe travel.
2. Peter’s continued surgical recovery.
3. Wisdom for his doctor’s.
4. Wisdom for those who work in cancer research.
5. Peter’s ability to tolerate his upcoming round of chemotherapy.
6. Our ability to care for him and meet his needs.
7. The miracle of a complete cure for Peter’s cancer.

We are grateful for all of your love and support. Thank you to Ruthann & Mark and Kandace & Frank for your wonderful home cooked meals.

Friday, September 3, 2004 6:42 AM CDT

Peter’s surgical recovery continues to move in the right direction. He is crawling again and yesterday he pulled himself to a stand. Peter’s speech is slowly returning although he remains a little horse from the tube that was down his throat. All of the steri-strips have been removed from both incision and they look good.

Yesterday we surprised Pop-Pop Zucca and had lunch with him. We know we won’t have many opportunities to see him until Peter’s care ends in December. Peter’s cousins, Dan and Rebecca were there and the kids got to play ball.

Last night Peter’s evening medications included just one oral syringe. That’s down from about ten per night when we first started his care. We are so grateful that God has blessed Peter with excellent medical care and that we are near the end of this journey.

I don’t think that I mentioned it before but Peter will start physical therapy when we return to Sloan. They want to strengthen his leg and try to get him walking.

Please continue to pray for Peter’s healing and for his ability to tolerate al of his upcoming care. Please pray for safety as we travel.

Thank you to Great Aunt Lorraine and Great Uncle Bob, Lois and Lowell, Frances and Linford, Sallie, and Donna.

Tuesday, August 31, 2004 7:10 PM CDT

Aunt Sandy, Peter and I returned home from NY today about noon. The entire trip was very uneventful from a convention standpoint. There was very little traffic and we saw no signs of demonstrators or anything else related to the Republican convention on our route.

Peter’s clinic visit on Monday went well. The oncology team at Sloan has ordered the pathology slides of Peter’s first biopsy and lung biopsy from AI duPont. They would like to compare them to the slides they now have from his surgery two weeks ago at Sloan. They need to confirm that they are working with the correct diagnosis.

The radiation simulation went well. Peter was measured and tattooed so that he will be radiated at the exact same place each time. You may recall that we ask for specific prayer that Peter would be radiated at less than 2400 gray. Peter will be radiated at 2100 gray in the front of his body. This level of radiation will not damage growing bones. Praise God for that! The buttock area will need to be radiated at 3600 gray. This means that there is a possibility that bone growth could be damaged if his growth plates are hit by the radiation.

This morning’s visit was with the general surgeon, he is pleased with Peter’s progress so far. He removed the steri-strips from Peter’s right buttock/ leg incision and gave me some adhesive remover pads so that I can remove the strips from his abdominal incision. Peter got the “OK” to start crawling again.

There is now a plan in place for Peter’s upcoming care:

1. He will start chemotherapy next week on Tuesday & Wednesday, followed by post-hydration on Thursday. All of this care is done on an outpatient basis so Peter will return to the RMH with me at the end of each day. He will have a hydration back pack with him on Tuesday and Wednesday. This chemo will include a drug called Doxorubicin also known as Adriamycin or Adria. This drug is not given during radiation therapy. About one week after this chemo is administered Peter’s white blood cells and platelets will drop.

2. When Peter’s blood counts have rebounded the orthopedic group will reopen his right buttock area to remove the small phantom piece of drain that was left behind after his surgery. He will be given 2-3 days to recover from this procedure.

3. Once Peter has recovered from his surgery he will start his radiation therapy. Radiation will be daily Monday - Friday for a 4 week period. Each day radiation therapy will last approximately 15 minutes. But, because Peter is unable to hold still for 15 minutes he will need to fast each day so he can be sedated. He will still need chemotherapy while he is under going radiation but the drugs will change to ifosfamide and etopicide.

4. After the completion of radiation therapy Peter will receive 2 more rounds of the first chemo containing Doxorubicin.

5. When chemo is complete and his counts have rebounded he will undergo CAT scan and MRI. If the scans show that Peter remains cancer free, his broviac line will be removed from his chest.

6. Peter will be seen once monthly for one year with CAT scans and MRI’s every third month.

If Peter is able to handle all of this care without any delays we hope to be cancer and care free and back home by Christmas. This will be a nice change from the Christmas we endured last year.

We learned that Peter’s tumor is very rare, less than 100 reported cases in the world. The doctor’s at Sloan have treated about five of them and all have been long-term survivors. We pray that Peter’s case won’t tarnish their record and that God will continue to bless Peter with his miracle of healing.

Please continue to lift Peter to the Lord for recovery from his surgery, protection from his chemo and radiation, and the ultimate gift the full miracle of healing from his disease.

Thank you to Twyla, Harry & Linda, Aunt Sandy, Great-Aunt Dolly, Cousin Jean & Leidy, Charlene & Freddy, Stacey, Jan & Steve and Grammy & Grand pop Freed. If we missed your name we didn’t miss your love, I’m just sleep deprived and forgetful.

Tonight we were in the Wal-mart and were heard “Hey Peter’s home. It was a man from our church who recognized Peter in the aisle. We walked outside and from a parked car we heard “there’s the miracle baby”. It was a man that we see at the counter of the Vernfield Station Restaurant. His wife was in the car with him and said, “we keep praying for you”. A few weeks ago when we were at the Wal-mart a women said “is that baby Peter from the computer”? We had never met her before but she and her church pray regularly for Peter’s healing. God is so good, his love knows no bounds and the network of people who love God is endless. You have blessed us and we are so grateful. If I live to be 100 years old, it will not be long enough to praise God for the gifts he has given our son.

Monday, August 30, 2004 10:37AM EDT

Dawn and I decided it was best to travel Sunday evening to NY, hopefully, avoiding the Monday AM traffic. Dawn, Peter and Aunt Sandy left home around 8:00pm and arrived at the Ronald McDonald house around 11:30pm without incident.

I spoke with Dawn this morning and Peter was getting very hungry given he had to fast since midnight last evening until his appointment to be measured for radiation at 10:30am.

Please pray for continued safety of Dawn, Peter and Aunt Sandy during their stay in NY and travel home. Peter has a surgery follow-up appointment tomorrow at 9:00am that Dawn is trying to change to today to allow them to come home this evening versus tomorrow.

Saturday, August 28, 2004 7:55 PM CDT

We are due in NYC on Monday morning for a clinic visit and a radiation simulation. We planned to stay overnight, my sister and I, then go to an appointment on Tuesday morning then head for home until the following week.

I’m becoming very concerned about the republican convention and the attempts to blow up the subway, then there’s the 250K protestors expected on Monday morning and so on.

Peter had a great day we had lots of fun together. We took lots golf cart rides Peter did some very fine steering. We gave Bailey Jayne, the dog, a haircut and shampoo. Peter ate so much food ate dinner I just couldn’t believe it. He ate corn on the cob, spaghetti and garlic bread washed it all down with iced tea and had a peppermint patty for dessert. I thought who are you and what have you done with my son. Well done, God!

Please pray for guidance as I’m trying to decide if I really want to make that trip and for safety should we decide to go. Please continue to pray for Peter’s healing from the surgery.

Friday, August 27, 2004 8:53 PM CDT

We are home in Harleysville once again it’s wonderful to back. Peter did well on the ride home. We stopped twice to get him out of the car seat and let him stretch out a little bit. We dropped Aunt Nancy and Uncle Jamie off at home and had a brief visit with Grammy & Grand pop Freed. We borrowed Grand pop’s golf cart and took Peter and the dog for our usual late day ride. It was just the best!

Today we learned a little more about Peter’s new diagnosis. This tumor is very rare. When I spoke with the radiation oncology office today the nurses and secretaries had never heard of it. Peter’s radiation oncologist is on vacation. They paged a resident and she called me back about an hour later. She said they had fewer than 100 published cases and that there is no established protocol for the treatment of this tumor. Yikes!

The tumor will be reviewed next week and they will let us know their recommendations for treating it.

As for you Marcella, I recognize that accusatory tone in your guest book entry. This tumor can have elements of other tumors within it. One of those tumor elements is Rhabdomyosarcoma. The good doctors at AI duPont performed a needle biopsy on Peter’s abdomen. The needle biopsy yields a very small amount of tissue. It is conceivable that the section that they retrieved could have contained only tissue with a rabdo element in it. Thanks for your feistiness Marcy and thanks for praying.

Please continue to pray for Peter’s healing, this surgery was so big and he is so small. The incisions are large and painful. We also ask that you pray for wisdom for his doctors as they decide how to treat this new disease. We are still holding out hope that God will provide healing without any further radiation or at least radiation at does low enough to prevent damage to his growth plates.

Thank you for all your love, kindness and prayers. Thank you for your guest book entries. They give me such comfort when I have had all that I can take of this journey. Thank you for all the cards and prayers books we found waiting for us at home. You have been an amazingly support group of family friends and strangers. You don’t know this but there are so many times when we read the guest book that complete strangers are lifting Peter and our family in prayer. God’s love makes us all one family…He is so good. Thank you for loving our little miracle boy.

Friday, August 27, 2004 7:31 AM CDT

This was last nights update but we were experiencing technical difficulties and were not able to get online…Sorry.

We have bad news, good news and astounding news. First the bad news, Peter’s CAT scan is positive for a foreign body in his buttock surgical wound. The piece of drain that broke off showed up on the films and will need to be removed. This is a relatively simple procedure and is done on an outpatient basis. We do not know when that will be removed.

The good news is that Peter was discharged from the hospital today. Dennis picked us up this afternoon with the stroller instead of a car and we headed back to the room and out for dinner.

Now for the astounding news Peter’s surgeon pulled us aside today to go over his pathology. Interestingly enough his diagnosis is not Rhabdo its ECTOMESENCHYMOMA. This is a very rare tumor. From what we understand Sloan has seen about 100 of them. They have had a good success rate with them.

Peter’s new pathology will be reviewed in the tumor board meeting next Wednesday. I am hoping that this type of tumor does not require radiation therapy to stop it. We will know more about Peter’s care path next week.

We are hopeful that this is just one more piece in the puzzle of Peter’s miracle. Please pray the Peter will not need any further chemotherapy or radiation therapy and that he will be able to start his follow-up care and will start a new cancer free life. Please thank God that we are all together again.

Wednesday, August 25, 2004 7:34 PM CDT

Today Peter underwent a CAT scan of his right hip/buttock incision area to see if they can locate the possible missing piece of drain tube. They did not want to sedate him again so...we sang the La La song for 5 minutes and he lay perfectly still long enough to get the scan. He is such an amazing little boy.

The general surgery group rounded tonight and if they can get the drain tube issue resolved and if he does not have C-diff (diarrhea caused by antibiotic usage) and if he has better pain control tomorrow we will be discharged by Friday.

Last night Peter was so excited to see his Daddy after work. They watched TV in bed together. Peter had a hold of Daddy’s arm and had his face all snuggled into his shoulder. We took some pictures but haven’t had the time to add them to the caring bridge yet. I took some picture of Peter today and every time the camera came out he gave me a big smile. It’s so nice to see he’s on the way back. It’s also really nice to have Daddy near us when Peter is undergoing treatment.

Please pray that the drain issue is resolved by the morning and that the stool cultures are negative. Peter is still on Morphine every 3 hours for pain and he still really needs it. Pray for pain control. Thanks!

Tuesday, August 24, 2004 7:39 PM CDT

Peter was moved to the floor tonight. He is drinking well and starting to eat a little. We were told that the x-ray of his surgical wound was negative for foreign body, left behind by his drain removal. BUT....Then the doctor showed up and told us that they are not sure and that they would like to do a CAT scan and possibly probe the wound to see if they can feel the drain. The CAT scan will be tomorrow sometime but I don’t know when.

Forgive me but, I’m getting really tired of all this. Please God let the scan be okay so we can go home on schedule.

I prayed with Reinalda’s Mother today. She is doing better and is moving her right arm so much they had to put a restraint on it so that she doesn’t pull out any of her tubes. Way to go God.

Please pray for a clean scan for Peter, patience for his Mother and rest for us all. Please continue to thank and praise the Lord that Peter’s surgical result was so astounding.

Tuesday, August 24, 2004 8:57 AM CDT

Peter had a fair night last night. His pain level is increasing, this is not uncommon as he gets further from the surgery. He’s starting to move around more & is starting to feel the effects of all he’s been through.

Orthopedics did not remove his drain yesterday, they came in today to remove it. When they removed the drain, the tip stayed inside Peter’s body. We are waiting to go to x-ray in an attempt to locate the tip, hopefully it’s near the exit site. It may require another surgery to remove the tip.

I visited with Reinalda and her family last night. We all prayed together. She is now able to move both legs and 1 arm. Her neurologist came in while I was there & is pleased with her progress.

Please pray that they are able to locate the tip of the drain and able to remove it easily. Please pray that this will not have a big impact on Peter’s recovery.

Monday, August 23, 2004 2:01 PM CDT

Peter moved to the POU at Sloan last night around 10:00pm. He had a very good night. Our room is awesome! It’s very quiet and the care is very good. He slept well, like a baby.

Orthopedics rounded this morning and Peter’s drain will be removed this afternoon.

He ate some banana and has been drinking his bottles. We will spend at least one more day in the POU and then will be transferred to the floor.

Aunt Sandy and Cousin Rebecca came for a visit and brought Peter’s favorite, balloons.

Please continue to pray for Peter’s recovery and his upcoming radiation therapy. Also to day is Reinalda’s 15th birthday.

Sunday, August 22, 2004 11:09 AM CDT

Peter had some respiration problems around 9-10pm last night. He was given a nebulizer treatment and they resolved.

General surgery rounded this morning and gave orders to remove his Foley catheter (urine).

Orthopedics rounded next just in time for Peter to fill his diaper and buttock dressing with an amazing amount of poo. When he was cleaned up the doctors had to remove all of his steri-strips (little pieces of tape that hold skin together) and clean the incision with beta dine and then reapply the steri-strips They advanced the drain in his buttock incision and will remove it tomorrow.

PICU team was last to round and they gave orders for his arterial line to be pulled. It is in his right forearm and his little arm is taped to a board to keep him from disturbing it.

When the nurses removed the Foley Peter promptly urinated on the steri-strips on his abdominal incision (oh little those little boys). The nurses then cleaned and changed them.

Peter drank some Rosenberger's iced tea and a 4oz bottle this morning. He is much more comfortable with his belly full and his Foley gone. He is fast asleep with his blanket over his head. As soon at there is a room available in Sloan’s POU (Pediatric observation area) Peter will be transferred across the street. That’s a very big step in his recovery.

He had a visit from Aunt Nanny, Uncle Jamie, Ryan & Grant.

Reinaldo opened her eyes yesterday and looked at her Mom. Today she squeezed her Moms hand. She will get MRI results back on Monday. Thank you for praying for her and for caring.

Please pray that Peter continues to recover. Also pray that his radiation and chemo will be as successful as his surgery.

Saturday, August 21, 2004 9:47 AM CDT

Somewhere in the night Peter took a turn for the good. The orthopedic group rounded and they removed his pressure dressing from the buttock incision. They said that his wound looks great.

Then the PICU team rounded and said his central line could be removed. The line was removed and while the doctor was doing that they made the decision to pull his NG tube and the ventilator at the same time. Thank you, God.

You’ll never guess who has a dirty diaper without any screaming or crying.

Peter is sound asleep right now with his old friend paci (the pacifier) hanging out of his mouth.

We are looking forward to hearing his little voice or at least a few goy goy’s.

Thanks for caring and for praying.

Friday, August 20, 2004 7:01 PM CDT

Peter’s day was basically uneventful both surgical teams stopped by to check on him. The dressing was removed from the abdomen and we can now see his incision, which is covered with steri-strips (small pieces of tape that hold the incision together). It is very long and runs from the bottom of his breast bone to his pelvic bone.

The drain is still in place in the buttock incision and was still putting out a lot of old blood and fluid this morning. It has almost stopped putting out fluid now. The buttock incision is covered with a pressure dressing (wide pieces of a foam like tape that applies pressure to the wound) this type of dressing will help to keep the incision as sterile as possible considering that it is in the diaper area. We hope that the drain will be removed when the orthopedic team rounds tomorrow morning.

The ventilator is also still in place. They are in the process of weaning him off of his sedation and off of his oxygen in order to remove it tomorrow hopefully by midday.

There was an item omitted from the list of things we learned about his surgery. There was a section of muscle in the buttock that was destroyed by the tumor the doctors graft muscle from another area to try to insure that he will walk.

Peter has been on a diuretic every 6 hours today to help remove all the extra fluids that he received during and after surgery. The puffiness in his face and body had gone done drastically and he looks more like our little boy.

Please pray that Peter’s recovery remains uneventful and that they are able to successfully wean him from the ventilator. And that his swelling continues to go down.

Peter’s roommate is in need of prayer. Her name is Reinalda. She is 14 years old and was struck by minivan while crossing the street. She has multiple head trauma with some facial fractures and a broken left ankle. She was placed into a chemical paralysis and put on heavy sedation. She was removed from sedation about 2 days ago. She should be responding more than she is. Her 15th birthday is on Monday. Please lift her and her family (especially her Mom who sent her to the store for a loaf of bread she never returned and Mom feels responsible). We prayed together last night for healing for our children. Tonight we are going to cover Reinalda with Peter’s pray shawl and pray for her healing once more.

Thursday, August 19, 2004 9:20pm EDT

Peter had a good day. He received some blood and ran some low fevers but other wise is doing well. His surgeon stopped today and spoke with Dennis. He said that Peter is right on track with his recovery. He still has a long way to go.

Here are something’s that we learned about his surgery:

1. Both Dr LaQuaglia (the general surgeon) and Dr. Healey (the orthopedic surgeon) prayed before they entered Peter’s OR

2. The tumor was very large. The part in the front of the pelvis was the size of a large orange the part in the back was the size of a lemon the two were joined in the middle by a section that made the entire mass resemble a barbell.

3. The center part of the tumor was growing through his foramen magnum, which are the small holes in the sacrum that the nerves grow through. Dr. Healey made the holes larger so they go work inside the holes to remove the tumor.

4. They feel that the primary site of his tumor was the muscle in his right thigh.

5. They removed 100f his gross tumor.

6. The sciatic nerve was compressed for so long that it is now the size on an adult’s sciatic nerve.

7. They can feel a small nodule in the sciatic nerve that they feel represents scar tissue from the injury the nerve received while it was compressed. They placed surgical clips all around it just in case it represents tumor.

8. Dr. Wolden (radiation oncology) will use the surgical clips to identify the mass in the nerve and hit it with some radiation just incase it is tumor.

9. Dr. Wolden informed us that Peter will be going through 4-5 weeks of radiation therapy everyday Monday – Friday for about 15 minutes.

10. The radiation will start right after Labor Day. We need to decide how we will handle our living and travel arrangements for all this.

Ladies (especially the Tuesday night picnic group) I need to hear from you. Can you help? Can you accompany Peter & me if we commute each day for this radiation? Can anyone stay with me if Peter and I stay in NY?

Please continue to pray for Peter his recovery is very long, while he is doing well he is not out of the woods yet as far as leaving the PICU is concerned. The period is still very critical with regard to post-op complications

James thank you for the sign.

Thursday, August 19, 2004 10:24 AM EDT

Good Morning,

Peter had a pretty good night. He had some issues with his blood pressure and his heart rate but they are all straightened out now. He continues to rest with the help of sedation and his old friend morphine. They have been lowering his oxygen levels in an attempt to wean him off of the ventilator. They hope to pull the breathing tube later today or early tomorrow morning. Once the breathing tube is removed the nasogastric tube can be pulled as well.

Last night at around 8:00pm he opened his eyes and held my hand. He is puffy from all the fluids he is receiving but he does look better this morning.

Please pray that Peter rests comfortably and that his breathing tube is removed soon and so is the NG tube. Thank you for all your love, support and prayers.

Wednesday, August 18, 2004 1:28 PM CDT

Here is the 6:00pm update

Peter is out of the OR all the gross tumor has been removed. They actually got clean margins in many areas, which is a surprise. The decision was made Not to radiate the back side because of hitting his growth plates in the hip and leg. These areas will be radiated with external beam radiation. The baby tolerated his surgery very well. We are on our way to recovery to go see him. The surgery took approx 8 hours. After we see Peter in recovery he will be transfered across the street. Thank you for all your prayers, your love and support.
Here is the 5:15pm update

ARE YOU READY FOR THIS?

The doctors have finished the surgery on the back side. They have successfully removed all the tumor and...the sciatic nerve IS INTACT! We are waiting for pathology results to come back from the lab and then the decision will be made regarding intraoperative radiation to the back side. Please join us in praising GOD for all of his gifts and please continue to pray that Peter can have this round of radiation in the OR

Here is the 2:30 update

They have completed radiating Peter, the front incision is closed and the rear incision has been made

Here is our very special 2:00 update

Praise God! We just heard from Peter’s surgeon. They have finished removing the tumor in the front of his pelvic bone. It was completely removed; there is no injury to his bladder/prostate or rectum/bowels. There are NO Ostomies!!!!!!!!!!!!!! All the identifiable nerves are intact and uninjured! He is currently being radiated intraoperatively. GOD IS SO GOOD! When they have completed radiation they will close the front incision and start on the rear approach.

Please continue to lift Peter up to God in prayer.

Wednesday, August 18, 2004 11:57 AM CDT

Hi Sorry this took so long but here is what we know:

At 8:00am the anesthesia department put Peter to sleep I was able to hold him from the time they started administering his medication until he fell asleep. Then we kissed him goodbye and handed him over to one of the nurses from the anesthesia department and they took him to the OR.

At 10:20am we received our 1st update. They told us that Peter’s incision was made at 9:55am. It took nearly 2 hours to place all the peripheral lines and they placed an arterial line (used to check blood pressure and draw blood samples) and to position Peter on the table.

At 12:45 we received our 2nd update. Peter is doing well, he is stable, they are still working and nothing is “out” yet.

We hope to have more info in the next couple of hours. Our social worker took us across the street to New York-Presbyterian Hospital to visit the pediatric intensive care unit (PICU). After Peter’s surgery he will be transported across the street for admission. This is the standard of care for a child of this age who undergoes such extensive surgery. The PICU was quite a sight for us to view. Each room has 3 beds and a nurse’s station in it. The nurse patient ratio is 2:3 or higher depending on the needs of the children. We got to see Peter’s room and his ventilator. What an overload for us.

The updates don’t come quick enough for us and the information is in very small amounts. It helps to know you are all out there waiting and praying. Thank you for all the guest book entries. Jean it was great to speak to you today I will call you again if there are any more Angel Haley sightings. I love you Jean.

Tuesday, August 17, 2004 7:52 PM CDT

Someone needs to tell the military about the nasogastric tube. It could be used as a secret weapon during interrogation....tell me everything you know or we will insert a nasogastric tube. After today’s events I would tell them anything.

Peter had a very long and very rough day. The 1st tube took 3 attempts to place in the correct spot. He cried and screamed so much that I almost couldn’t take it. After several rounds of vomiting he pulled it out of his nose and it had to be placed again. After the 2nd tube was placed he was given mediation to calm him down. He then slept for several hours and when he awoke he was fine again.

The bowel prep is working very well and praise God he is moving his bowels with very little or no pain. Tomorrow morning Peter’s day starts at 6:15am when they take him from his room to the pre-op area. He will be in the OR by 7:30am.

Please pray for God’s hand to guide the surgeons. Pray for the miracle of his tumor peeling out of his body and away from his sciatic nerve. Pray that he will indeed be a candidate for intraoperative radiation therapy. Ask for divine healing a very speedy recovery.

Thank you for all your love and support and thank you Russ and Ev for coming to NY to pray with us.

Monday, August 16, 2004 9:59 PM EDT

We got the results of Peter’s CAT scan today. It really is not much different in size then on previous scans. Like the MRI it confirms that his organs are not involved and his lungs remain clean. We met Dr. Healey, the orthopedic surgeon today he seems like a very caring and talented person. The general surgeon, Dr. LaQuaglia, prefers operating with him. The general consensus at Sloan is that they are a team that can’t be beat.

We have a 9:00am appointment with Dr. LaQuaglia tomorrow. He will go over the results of Peter’s pre-admission blood work which was taken today. He will discuss in more detail the upcoming surgery and have us sign consent forms. Peter will be admitted right after this appointment. Tomorrow is the day he gets the nasal-gastric tube placed in his nose. We understand from the children we have spoken to that “it hurts a lot”. We ask for something to make it more comfortable for him and found out that they cannot be sedated or the tube could go into his lungs instead of his esophagus. A tube into the lungs filling them with bowel prep would not be good.

Today was very long our appointment was for 11:00am and we left the hospital about 4:00pm. We stopped for dinner and then took off for Central Park and a walk down Park Ave. We took some new pictures which we will try to post on caring bridge by Wednesday.

Please pray that Peter’s NG tube insertion goes smoothly and that his Mother can bear it. The next problem is that passing his bowels is excruciating for him and the prep will make him go a lot. Please pray that he can tolerate the pain from all the bowel movements. Please pray for strength and peace for Dennis and me.

We are so grateful to all of you for signing the guest book it makes us feel so supported. We want to thank Marlene at State Farm and the ladies in her church, the Lutheran Church in Souderton for the prayer shawl. The prayer shawl is knitted by the ladies in her church, while they are knitting them they pray for the person who will be receiving it. Then when you receive it, you cover the person with it and they are blanketed in their prayers. We brought Peter’s with us to NY. Thank you for the blanket, your prayers and your love.

Sunday, August 15, 2004 7:23 PM CDT

We made it to New York. There was very little traffic, the trip only took 2 & 1/2 hours. My sister Nancy, her husband Jamie, Dennis & Peter unloaded the car & checked in at the Ronald McDonald house. While I parked the car, Nancy cleaned the room, Dennis & Jamie brought in the luggage & took care of Peter. We headed out for dinner & walked Nancy & Jamie to the parking garage, so they could go home. Dennis, Peter & I walked through the city, purchased a treat - NY cheesecake with strawberry topping. Baby Zucca ate the majority of it. When we were finished with our treat, we pushed a little, sticky strawberry faced baby back to the Ronald McDonald house. While I unpacked & settled in, Dennis & Peter watched Baby Einstein.

Tomorrow morning, Peter has an appointment with an orthopedic surgeon. He is just one of the many surgeons & doctors who will be present in the operating room on Wednesday. We hope to get the results of last week’s CAT scan tomorrow. That’s the only Dr. visit for tomorrow. Please pray for awesome CAT scan reports. Pray that Peter’s tumor has shrunk, pulled out of his leg & away from his sciatic nerve. Peter’s friend Haley’s viewing was today & her funeral & burial are tomorrow. www.caringbridge.org/de/haley. Please continue to lift up her family in prayer.

Thank you Linda & Jerry Forte and Nancy & Jamie Welby.

Friday, August 13, 2004 10:07 AM CDT

We mailed a Peter update letter yesterday. Incase you are not on our mailing list or e-mail list the letter follows. I also met a woman last night at my office she is a new cancer patient her name is Kristin. She shared a beautiful Hebrew pray with me for Peter. I shared with her some of what we have learned along the way. This journey is hard no matter how it ends. God is so good, he loves us, plan is perfect and so is his timing. There is so much love and support along the way that it restores your faith in humanity. Thank you for the love and support. Please pray for Kristin her surgery is August 24th.

Dear Family & Friends,

We wanted to bring you up to date on Peter’s health condition. As you are aware we were referred to a surgeon at Memorial Sloan-Kettering Cancer Center in NY. This doctor feels that he can remove Peter’s tumor and leave his leg in tact. The doctors at Sloan have put Peter through a series of tests with the following miraculous results:

1. MRI scan that showed his prostate/bladder and rectum/bowels are NOT attached to his tumor. We were originally told that they were involved and that they would need to be removed during surgery resulting in 2 separate ostomy’s, one for urine and 1 for stool.

2. PET scan that showed that Peter’s tumor is DEAD. His doctor told us that this is a true miracle from God!

3. CT scans done today that we are awaiting the results of.

Although Peter’s tumor is dead it is still very large. As a result of its size he has difficulty going to the bathroom. His bladder is displaced and his urethras are twisted. His rectum is displaced making it very painful for him to pass his bowels. His sciatic nerve runs right though the middle of the tumor compressing the nerve and affecting the use of his leg. He is unable to walk as a result of this compression.

Peter is scheduled for admission to Sloan on Tuesday August 17, 2004. He will undergo surgery on Wednesday August the 18th. The night of his admission he will have a nasal-gastric tube inserted into his nose, down his throat, and into his stomach. This will be done to allow the doctors to bowel prep Peter. We were told to expect Peter to be in the operating room approximately 10-12 hours on Wednesday. The doctors hope to remove 100f his tumor. They have told us to expect severe damage to his sciatic nerve, which will mostly likely make it impossible for him to walk. If the surgery goes well, they plan to radiate Peter while his in on the operating table. This is done while his body is open, with a shield in place to protect his healthy organs and tissue. After he is radiated they will remove the shields, put his organs back in place, and close his body. Peter will be placed on a ventilator, a machine that will breathe for him, for several days. He will spend about 5 days in the pediatric intensive care unit (PICU). After he leaves the PICU he will spend about 1 week on a regular floor in the hospital.

Please pray that Peter is able to tolerate all of this intense care, ask God to give his doctors wisdom and to guide their hands in the operating room. Please ask God to peel Peter’s tumor out of his leg so that his nerve is not damaged, and to grant him a speedy recovery.

Love,
Dawn, Dennis and Peter Zucca

Wednesday, August 11, 2004 7:17 PM CDT

Peter did great today. He drank about half of the iced tea/contrast drink. My sister and I were determined that he was not going to be put through the stress of a nasal-gastric tube insertion. So we ask for an oral syringe and gave him the rest of the tea through it. Peter is a champ at taking medication via oral syringes so in no time he had finished his prep.

His cat scan was uneventful and we are, as always, anxiously awaiting the results. There have been cases where the tumor shrinks as it dies and pulls out of the leg. If Peter’s tumor does that then his sciatic nerve would not be damaged during surgery next week. If his sciatic nerve is injured he may never walk.

Peter’s friend Haley passed away today she was 5 years old. Her caring bridge is www.caringbridge.org/de/haley. Her family would be very blessed by your prayers for them and are very uplifted by entries in her guest book. Peter and Haley were roommates at A.I. duPont; they have the same type of tumor.

Please pray that Peter’s tumor has already shrank enough to pull out of his leg and away from his sciatic nerve. Please pray for Haley’s family.

We thank you for all the love and support you have given us.

Wednesday, August 11, 2004 8:54 AM EDT

Dawn, Peter and Aunt Nancy made it safely to NYC. Peter will have a CAT scan of his abdomen and pelvic area to prepare the doctors for his surgery next Wednesday.

The Lord has answered another prayer! Dawn just called to let me know that Peter is drinking the oral contrast that was placed in a Rosenberger’s iced tea. If Peter did not drink the tea they would had to place a nasal-gastric tube, a tube in his nose that extends down into his stomach and administer the contrast that way.

Pray that all goes well with Peter’s scan and they have a safe trip home.

Monday, August 9, 2004 3:16 PM CDT

We returned from Sloan at about 4:00pm today. Peter’s clinic visit went great. His blood counts are all very good and his chemotherapy went off without a hitch. His doctor informed us today that Peter’s PET scan is a miracle and that “God can do many things that he cannot”. Praise God for Peter’s miracle and for the awesome care he receives.

We found out today that we need to return to Sloan on Wednesday for a CT scan. The surgeon wants a new one prior to operating next week. That means another round of fasting for Peter because he will have to be sedated for the scan to be performed. He will also need IV and oral contrast. IV contrast is no problem because it is administered directly into his lines. Oral contrasted has to be swallowed and it does not taste good. It can be added to clear liquids however Peter does not drink clear liquids. He has begun to show signs of an addiction to Rosenberger’s iced tea (I can't imagine where that came from.) His doctor has agreed to try to add the contrast to a bottle of tea. If Peter does not drink the tea they will have to place a nasal-gastric tube, a tube in his nose that extends down into his stomach and administer the contrast that way. This all translates into more stress on Peter and another long day for us. I’m very tried.

Please pray for safe travel; an easy scan prep and good scan results. Also please pray for rest and strength for Dennis and I.

Thanks for all your love and support. Thank you Harold and Gladys Knechel.

Sunday, August 8, 2004 8:42 PM CDT

We will be leaving for NY by 6:00am tomorrow morning. Peter has chemotherapy and a clinic visit.

Please pray for safe travel and an uneventful clinic visit. Please pray for Peter’s friend Haley (www.caringbridge.org/de/haley) and her family. She has the same type of tumor as Peter and will be going home to be with the Lord shortly. Haley is 5 years old and she introduced Peter to squirting nurses with water bottles while they were roommates at A.I. duPont.

Thursday, August 5, 2004 6:44 PM CDT

I hated to add a new journal entry because I just loved that last one so much. But we wanted to pass on new information on Peter’s journey. Dennis and Peter and the dog are outside blowing bubbles. Peter loves bubbles and Dennis likes to hear him say the word “Bubbbbles” so he blows them for him often.

Tonight we will be giving Peter his last methadone dose. Methadone is a narcotic that he has been on forever. We have been tapering his dose for months in hope of getting him off the drug without him going through withdraw.

We are very grateful to the pain management team at A.I. duPont. They did a fantastic job managing Peter’s pain control for us and gave us great instructions on tapering his drug dose. Thanks Sandy!

Thank you to Kandace and Frank Pugh for their gift and to Great Aunt Dolly for the picture book she made for Peter. Also special thanks to Shirley and Joe Michel for sharing their beloved son, Andrew’s toy with Peter. And Thanks to Aggie and Anna for the great meals!

Please continue to pray for Peter’s healing and for our ability to continue to meet his needs.

Tuesday, August 3, 2004 10:21 AM CDT

PRAISE GOD…

PETER ZUCCA’S TUMOR

IS DEAD!

I just received a phone call from Peter’s doctor at Sloan and he said that Peter’s PET scan was good. When I ask what that meant he said that there is NO VIABLE TUMOR IN PETER’S BODY, ANYWHERE!

Peter will still need to undergo surgery on August 18 to have his tumor removed. He will still need radiation therapy to be completely cured of his disease.

Please join with us in thanking and praising God for this wonderful news. Please continue to petition God for the full miracle of healing Peter with all his precious organs and limbs intact and functioning. Our next big concern with Peter’s care is his sciatic nerve and the strong likelihood of damage to it at the time of surgery. Please pray that Peter’s tumor peels away from his nerve and that there will be no damage to it. There is also a great risk of damage to his growth plates in his hip/pelvis and right leg from radiation therapy. We pray that God will shield these areas with his own hands and keep them from harm.

Thank you all for the prayers, love and support you continue to show us.

Psalm 40
I waited patiently for the Lord to help me, and he turned to me and heard my cry. He lifted me out of the pit of despair, out of the mud and the mire. He set my feet on solid ground and steadied me as I walked along. He has given me a new song to sing, a hymn of praise to our God. Many will see what he has done and be astounded. They will put their trust in the Lord.
Amen!

Monday, August 2, 2004 6:31 PM CDT

We returned home from Sloan at about 6:00pm tonight. Charlene Frederick, from church, pulled in right behind us we a nice hot meal. She made enough for four and my parents joined us for dinner. The people at Towamencin Mennonite Church have been an enormous blessing to us especially the ladies and their dinners. Peter’s sedation and scan went very well without any problems he awoke from his sedation before he left the scan room and was looking for his “Mama”. I LOVE WHEN HE SAYS THAT! We hope to have scan results in the next day or two and we will pass them on as soon as we receive them.

We will be returning to Sloan on Monday for another round of chemotherapy and blood work. We will not be staying over night this time just a brief half-day trip. My sister and her boys will accompany us again that means the Peter will be very entertained. He thinks that the boys are very funny and whenever they laugh, which is quit often, he laughs with them.

Please pray for safe travel and that Peter will be able to continue to tolerate his chemotherapy. Please ask God’s blessing on the people of NY during this heighten security alert. And please praise God with us because Peter will be 18 months old on Wednesday. We have had six more months them expected to love and enjoy him.

Friday, July 30, 2004 7:09 PM CDT

Peter’s blood counts have all rebounded. He should not need any transfusions or injections until after his surgery. Instead of going to NY today we met Daddy at work and had lunch with him.

Dennis’ boss made arrangements for him to work out of their NY office when Peter has his surgery. So our family will remain together during those difficult weeks that will follow his surgery. We will be living out of the Ronald McDonald house and the hospital.

We praise God for all of his many blessing during this difficult time. Thank you to the Heaven Bound Sunday school class at Towamencin Mennonite Church and for the meals from the ladies there and at Covenant Presbyterian Church in Vernfield. Thank you to Steve for the special work arrangements.

We will be returning to NY on Sunday afternoon Peter has chemotherapy on Monday followed by a PET scan. The PET scan results are very important because it will show how much of the tumor is still alive.

Please pray for safe travel, uneventful chemotherapy and most importantly ONE VERY DEAD TUMOR!

Thursday, July 29, 2004 7:24 PM CDT

Peter’s platelet count was only “9” the normal range is about 180-400. Because his count was so low he needed to be transfused. My cousin Stacey and I left for NY around 1:00pm. Peter slept for the whole ride to Sloan watched a couple of his Baby Einstein videos during his transfusion and slept the whole way home. His platelet transfusion lasted about 30 minutes.

The home infusion nurse is coming tomorrow morning at 9:00am. We hope his transfusion did the trick and that we will not be returning to NY tomorrow. Yesterday I learned that the platelets are the last to recover from chemotherapy. Typically once the white blood cells have rebounded the platelets will follow close behind. Tonight was his last GCSF injection (a white blood cell growth factor) so his white blood cells are back and hopefully his platelets have rebounded as well.

Please continue to petition God for the “whole miracle” for Peter a full recovery with all organs and limbs intact and functioning. Please pray that his counts have rebounded and that we will be staying home tomorrow.

Wednesday, July 28, 2004 7:45 AM CDT

Peter was awesome on the return trip he was busy watching people and trucks all the way to the Lincoln tunnel and then he slept until we reached the northeast extension of the Pa turnpike. When we got to our exit at Lansdale he pulled his pacifier out of his mouth and yelled “da da”. When we turned onto our street he got so excited. There really is no place like home even when you’re only seventeen months old. We drove up the hill toward my parents produce stand and there to his delight was Grammy. We took a golf cart ride through the fields and out to the general store for an iced tea. We got home in time to have dinner in our kitchen as a family once again.

I’m waiting for the home infusion nurse to arrive and do a blood draw on Peter. If his counts are okay we don’t need to return to NY until Sunday night. If his counts are low we will be heading back to NY this afternoon for a transfusion.

Please pray that Peter’s counts have remained at normal levels so we do not need this extra trip into the city. If they have not remained normal please pray for safe travel. Thanks for all the love and support you give us.

Monday, July 26, 2004 11:09 AM CDT

We are being discharged today...YEAH!!! The PET scan was rescheduled for Monday. Please pray for safe travel for Peter and I and of course the miracle of complete healing for Peter.

Sunday, July 25, 2004 2:29 PM CDT

Peter had a rough night; that made Dennis’ night rough as well. He woke up crying several times and was given morphine twice. He had a platelet transfusion this morning and will be having a blood transfusion this afternoon. His white blood count is just starting to rebound. I hope to leave for home on Monday or Tuesday.

Please pray that Peter’s counts continue to rebound and that the cause of his pain ends. His new chemotherapy can cause jaw and back pain but there is no way for Peter to tell us if that is the source of his pain. Please ask God for safe travel home for all of us. Dennis will be leaving for home shortly.

Saturday, July 24, 2004 1:27 PM CDT

Peter seems to be feeling better today. He slept well last night and woke up with a smile on his face. He is still eating very little and we feel that this because of the sores in his throat. The nurse just gave him some morphine and we will try to feed him again after it starts to work. His white count continues to be “0”. We are hoping it will recover on Monday or Tuesday so we can come home. His last fever spike was yesterday around 2:00pm. I hope that’s the end of the fevers for a while.

Dennis made it here safe and Peter was very happy to see his “Da da”. Mommy was glad to see him too. The Zucca men are busy watching Baby Einstein videos. Mom is headed to the Ronald McDonald House for a shower and nap.

Please pray that Peter’s count rebound soon and that he is able to eat again. Thanks for all the great guest book entries they are so nice to read especially when you are far from home. Thanks for the phone call Bob Petersheim we will continue to remember Jan in prayer.

Friday, July 23, 2004 7:23 PM CDT

Peter continued to spike fevers through out the day. He only drank 12 ounces of formula today; usually he has more than that by 9:00am. He was much less irritable today and has not had any morphine. He had another round of chemotherapy this afternoon. He will be receiving this type of chemotherapy as an out patient one day per week until his surgery. This type of chemotherapy does not affect his blood counts. The hope is that it will keep the tumor at bay without delaying surgery because his counts are too low.

Dennis will be coming to NY tomorrow morning. He will spend the night at the hospital with Peter while I stay at the Ronald McDonald house.

Please pray for safe travel for Dennis and higher blood counts for Peter. Please pray that the last round of chemotherapy works a miracle for Peter and that his tumor shrinks out of his leg and away from his sciatic nerve. If it does then there would be less damage to his sciatic nerve and that would increase his chances of being able to walk after surgery.

Thanks again for all of the love and support that you give to all of us. Mark Fly if you’re out there how is Colin doing? Cindy how is Jan doing? How were her lymph nodes? Please pray for Haley www.caringbridge.org/de/haley.

Thursday, July 22, 2004 8:45pm EDT

Praise God!! We just received the results from Peter’s MRI taken Tuesday and the doctor feels his colon/bladder/prostate are only being displaced by his tumor and will not be removed during his scheduled surgery on August 18th. The doctor advised that the tumor is still large but they are confident it can be remove.

The doctors do continue to express concern about Peter’s ability to walk after his surgery given that the tumor has pressed against his sciatic nerve for so long and the probable need to cut the nerve during surgery.

Peter continues to experience pain from the sores (side effect of his chemo) in his throat and this is causing difficulty for him to eat and rest comfortably. He's still receiving morphine to help with the pain. Peter spiked a fever late this afternoon and the doctors have decided to change his antibiotic.

Please continue to pray that Peter’s fever and the sores in his mouth go away quickly and also that his white blood count rebounds.

Peter’s contact information is as follows;

Room Number:911A Pediatric

Telephone Number:212-639-4061.

Memorial Sloan-Kettering Cancer Center
1275 York Ave
New York New York 10021

Thursday, July 22, 2004 1:17 PM CDT

Peter had a little bit of a rough night. They feel that he may have mucositis, which causes sores on his mucus membrane. Peter’s are in his throat, this makes it hard for him to swallow ven his bottles. He is on morphine now to allow him to eat and drink. We are in the family playroom now and Peter is helping me type. Dr Bovine, the clown doctor paid a visit this morning with his bubble blowing ice cream cone. The PET scan was canceled due to his fever and low white blood cell count. Please pray that Peter’s counts rebound quickly because that will help the sores to heal

Wednesday, July 21, 2004 6:12 PM CDT

Peter & I got admitted to Sloan today. Our room is on the 9th floor and has a beautiful view of the city and one of the bridges. Peter spiked a fever today of 102.9 it is back to normal now. But, unfortunately this buys us an admission until at least Tuesday. His white blood cells have to recover before we can leave. We still have a PET scan tomorrow. Please pray that Peter’s scan shows that is tumor is dead. Also pray that we get a good nights rest and that Peter feels better tomorrow. Thanks for all your support.

Tuesday, July 20, 2004 7:28 PM CDT

Peter had his clinic visit this morning. His physician assistant can’t understand why he still doesn’t have a fever. I told her he’s not going to get one, that this child is blanketed in prayers. So keep up the good work, continue to pray for no fever, it’s working.

He was in the MRI scanner for 1 hr. 15 min. He woke up from his sedation laughing, rip roaring giggling, laughing. There are no scan results at this point, please continue to pray for the miracle.

We just returned from an evening in Central Park. Ryan held Peter on his lap for many joyful trips down the sliding board while Grant & Aunt Dawn ran through the fountains. If Peter remains fever free we will have a free day in New York tomorrow. His PET scan is on Thursday. The PET scan shows how much of the tumor is alive. They’re planning a platelets transfusion following the scan because his counts are getting too low. Please pray that Peter will continue to tolerate the chemo well, remain fever free and that his tumor is dead.

Monday, July 19, 2004 6:10 PM CDT

We had a clinic visit and blood draw today at sloan. Peter's counts were low so he had a blood transfusion. We will be returning tomorrow morning for another clinic visit followed by a MRI scan. Everyone but Peter is very tired. He contiues to stay up late at night playing with the boys and watching his baby einstein videos. Today after his transfusion we went to the park. The ice cream truck stopped and the kids in the park flocked out to it. I took Peter for a soft serve and let him hold it himself. His eyes were like saucers. There was ice cream on both cheeks, his nose, and his chin. It was just the best! What joy I had just watching him cover himself and the stroller in ice cream. God is so good.

Please pray that Peter continues to tolerate his last chemo. Please ask God to astound his doctors with a MRI that shows no tumor. We really need this thing to pull out of his leg or his nerves will be damaged if the doctors have to remove it. We also need Peter to remain fever free or he will be admitted while we are here. A fever admission would most likely last until Tuesday.

Saturday, July 17, 2004 9:49 PM CDT

Nancy & I will be leaving for NY tomorrow afternoon. We will be taking her two boys with us. Peter loves Ryan (13) and Grant (8) and finds them very entertaining. Since Peter’s care is all done on an outpatient basis the boys can join us. They are looking forward to seeing the city and we are grateful to have them with us. They have given up a lot of time with their mom because she helps us so much. Nancy & the boys will stay until Tuesday after his MRI scan. Dennis’ sister Sandy and her daughter Rebecca (12) will join Peter and I on Wednesday. They will stay until his PET scan is over on Thursday. If Peter does well and does NOT get a fever from low white blood cells, we will come home with Sandy and Rebecca on Thursday afternoon. The doctor’s have Peter on the surgery schedule for August 18th. Please pray for safe travel for everyone and good scan results on Tuesday and Thursday. Please pray that Peter’s blood counts rebound and he does not need blood transfusions and that he does not get a fever, which would necessitate a hospital admission.

Thursday, July 15, 2004 7:33 PM CDT

Peter’s care today was uneventful. We left Sloan by 3:00pm, picked up the car, and our belongings from the Ronald McDonald house. It’s wonderful to be home. My cousin Stacey dropped off a nice hot meal at my sister’s house and our families sat down together for supper. Peter was very happy to see Grammy and Grand pop and especially Daddy. Nancy and I will be returning to NY on Sunday. Peter has a clinic visit Monday morning. He will have his blood drawn to check his counts and will most likely be getting a blood transfusion then. His hemoglobin is all ready dropping from his chemo. He is scheduled for a MRI on Tuesday morning and a PET scan on Thursday morning. The MRI scan is of his spine; because his tumor grew thru his sacrum (the lower part of the spine) the doctor’s need a new look to see where it’s at now and how it has responded to his chemo. The PET scan shows how much of his tumor is still alive. His doctor’s are anticipating that he will get a fever when his white blood cell count drops and that he will be admitted to the hospital as a result. Please pray that Peter’s counts rebound very quickly, that he does not spike a fever, that he is not admitted to the hospital and that his scans show that his tumor has pulled out of his sacrum and his right leg and is DEAD! Thank you to: Annette N., Ruthann at State Farm, and Stacey. We thank God for our safe trip, Peter’s great care, all of your prayers and especially my good sister, Nancy.

Thursday, July 15, 2004 7:38 AM CDT

Peter had another great night. He loves NY and I think he will probably be in charge of cancer research here at sloan someday. He had some pain issues yesterday after chemo ran. He was given morphine and responded very well. We left the hospital with our pumps again and had no problems. We have a doctor visit this morning and then we go to the clinic for post-chemo hydration. We expect to leave the city between 5-6pm. Nancy will stay in the clinic with Peter while I return to the Ronald McDonald house to clean our room and wash/dry our linens. Please pray for a safe trip home and that Peter's care today is uneventful. Daddy Peter misses you!

Wednesday, July 14, 2004 7:54 AM CDT

Good Morning, Peter had a great night. Praise God he had no issues with nausea, vomiting or diarrhea. We left the hospital with a large fanny pack (a type of back pack) it held 2 I.V. pumps and 2 bags of fluid. One bag of fluid was hydration and the other bag was called mesna, a drug used to protect his bladder/kidneys. We attached the fanny pack to his stroller and hit the streets. We found a nice little Italian restaurant. They had outdoor seating and Peter was able to feed his bread to the pigeons, that is a big plus to a little boy in the big apple. We are already back at the hospital. We checked in, had a doctor visit and were in Peter's private clinic room (with all chemo orders in the computer system)in less than 45 minutes. Wow, that's fast. Miss Lucille, if you're out there Peter misses you. We expect to leave the hospital by 6:00pm. We will have the fanny pack with us again. Please pray the the days and nights remain "uneventful" and that Peter contiues to be protected from the side effects of his chemo. Cindy we continue to pray Jan.

Tuesday, July 13, 2004 12:44 AM CDT

Peter loves the Ronald McDonald house. He was up past 12:00pm last night playing and talking. We are very tired. He also likes to watch street sweepers and trash trucks. His echocardiogram went well and his heart looks good. He played and ate lunch during his pre-chemo hydration. His chemo is running now and he is taking a nap. We expect to leave the clinic at about 6:00pm. We will be going back to our room with I.V. fluids still running. So Nancy and I will be taking care of his I.V. ourselves. Please pray that Peter continues to tolerate his treatment well, and that Nancy and I are able to rest well, and meet his medical needs.

Monday, July 12, 2004 2:20 PM CDT

Nancy (my sister), Peter and I will be spending our 1st night at the Ronald McDonald House in NY tonight. Peter has a very busy day tomorrow, 7:30am chemotherapy, 11:00am Echocardiogram, followed by a visit with his new oncologist. This will be Peter’s harshest chemo to date. Please pray for our safety traveling and ask God to protect Peter from the possible side affects of his chemo; nausea, vomiting, damage to kidneys, bladder and heart muscles.

Thursday, July 8, 2004 5:56 PM CDT

Praise God! We had a very positive trip to Sloan Kettering. The doctors there feel that Peter’s bladder/prostate and rectum/bowels are NOT involved in his tumor; therefore they will not need to be removed. His sciatic nerve will still in all probability be very damaged and this will cause him problems down the road with walking. We feel very confident that this is the beset possible prognosis that we can offer Peter. We are very grateful to his doctor’s at AI duPont for referring him to Sloan Kettering. Peter’s outpatient care will continue to be co-coordinated by his doctors at duPont. We will be returning to Sloan early next week for chemotherapy and a PET scan and MRI. If all goes well we hope to have his tumor removed sometime in August. Please continue to pray for Peter’s healing and for wisdom for his doctors, as well as, peace and rest for us.

Wednesday, July 7, 2004 12:34 AM CDT

Wednesday
We will be traveling to Sloan Kettering Hospital in New York City tomorrow, July 8, 2004. We are meeting with a team of doctors there to determine if they can help Peter from a surgical stand point. Please keep us in your thoughts and prayers.

Thursday, July 1, 2004 2:41 PM CDT

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