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Friday, December 30, 2005 10:38 PM CST
Dear Family & Friends,
I have been having some restless nights lately. There is so much worrying and thinking going on in this head of mine. I hope this update sounds okay because I am tired tonight.
We headed in to Philadelphia on Wednesday night. We stay at a hotel in central Philadelphia called The Latham. It’s just like staying in New York City with all these great stores and restaurants everywhere. We always order room service for dinner. Timmy loves doing this. He gets to eat sitting in bed and watch the television. He also gets his own big bed to sleep in which he thinks is great. I call it our little adventure, it makes Timmy happy and it’s not all about the hospital.
Our morning did not start off to good. I was walking out the front door of the hotel with Timmy, holding onto his arm. He was going down a big step when his leg gave way and he fell face first onto the concrete sidewalk. I heard a thud as his head hit the concrete and I screamed. Everyone came running to help Timmy. Jay got to him first and picked him up. Timmy must have a guardian angel because all he got was a bump on his forehead. I was expecting to see lots of blood but something must have broken his fall. Timmy was crying so much, he was so scared. When we got him to the hospital our nurse Mindy checked him out to make sure he was okay. When she accessed his port she did a CBC to just make sure his platelets were okay. Low platelets can make you bleed a lot. We then headed over to the Clinical Research Lab where they took Timmy’s blood again. He then took his Lapatinib and a half hour later they took his blood again. They took his blood at least three more times that day with the last one at about 4PM. It is such a long, tiring day for all of us. Timmy is just so bored being there all day. While we were there we scheduled Timmy’s next MRI. It is on Thursday, January 19th. This will be just about two months since his last MRI. He will have done two full courses of Lapatinib and a definite decision can be made about its effectiveness. So all the worrying and thinking is about the next MRI and what it will show and what may be ahead of us.
Timmy went to physical therapy today. He worked hard stretching and strengthening his legs. It was nice to see that he is still able to use his right hand a little. He does have a weak grip, but he can still use that hand. It was Timmy’s physical therapists last day today. She is going on maternity leave. Jen, you are the best! Thank you so much for all you have done for Timmy. You will be a great, loving mom. Just make sure you come back to us someday soon.
Timmy is feeling good. In Timmy’s words “I feel fine Mom”. I think he is weaker on the left side now. I have noticed a slight tremor in his left hand. Timmy can come down the stairs still but going up is so difficult for him. Jay must carry him up most of the time. He continues to have short term memory problems and trouble understanding what is being said to him sometimes. When we talk to him he will say “a who”, “a what”. I poke fun at Timmy telling him they will have to add those words to the dictionary. I try to laugh with Timmy so as not to frustrate him, but seeing and hearing this is hurting me so much inside.
A friend of mine, Ginny Smith, did something wonderful for Timmy. Ginny’s cousin and his wife, Capt. Warren and Tatiana Rohlfs are in the Air force stationed in Okinawa, Japan. Ginny contacted them and told them all about Timmy. Tatiana put together a special package for Timmy with a USAF Combat Rescue hat, a patch, a coin with the Squadrons motto “That Others May Live” on it and best of all a picture of a helicopter called the HH-60G Pavehawk, also known as the Jolly Green Giant. In the picture the guys from the Squadron are holding up a sign for Timmy (see below). Thank you Ginny for thinking of Timmy. Thank you Warren and Tatiana for the letter you wrote to Timmy and for putting this all together. He was thrilled with everything, but the picture, well that put a big smile on his face!
I would also like to say thank you to the Groveland Fire Department in Holly, Michigan for thinking of Timmy. The wonderful people there heard about Timmy and sent him a box full of caps, shirts, patches, two firefighter badges, key rings, pencils, fun books and so much more. They told Timmy that in emergency services that their motto is “keep fighting and keep the faith”. They are also sending him another package from the White Lake Police Dept. Thanks so very much!
We are due back at Children’s Hospital next Thursday for a visit with the doctor and some blood tests
As always please keep Timmy, Justis, Genna, Gabbie and Kyle in your thoughts and prayers and I will update soon.
Happy New Year
With Love & Hope, Susan.
Tuesday, December 27, 2005 9:05 PM CST
Dear Everyone,
We started our Christmas celebrating on Christmas Eve. As we do every year, our family went across the street to Timmy's Godmother's house. Timmy's Godmother, Liz Fernandes happens to be my best friend. We have known each other for almost 20 years. Liz is the best Godmother anyone could ask for their child. She loves Timmy dearly as if he were her own. We spent the evening with our friends and some family talking, laughing and exchanging gifts. The absolute best part of the night was when Liz and her family gave Timmy one of his gifts. It took three people to carry it out from the garage (where it was hiding) to Timmy. Timmy just could not imagine what was in this huge box. He was so excited and needed help to open it up. Timmy got the biggest 4-wheel drive, remote-control Hummer I have ever seen. Timmy loves remote- control cars. He was speechless, stunned and so happy. This was by far his best Christmas present ever!
Christmas Day started off a little sad for me. When Timmy woke up and I asked him what day it was...he did not know. He thought we were going to the hospital. Once I told him it was Christmas, he remembered and got out of bed as fast as he could. All the boys went downstairs together and opened up their presents. Timmy got mostly everything that was on his Christmas list including another remote-control car, (one that climbs up my walls!) a 3D space projector, a playstation Madagascar game, a Hess truck, star wars toys, a slurpee machine, military figures and so much more. Below I have included a few pictures of Timmy opening his presents.
Later on in the day my family came over to spend the rest of Christmas Day with us. My mom and dad, my brother Michael and his wife Jackie, my brother Tom and his fiance Joanne and my neice and nephew Kristin and Derek. The boys all got a lot more gifts. My brother Tom thrilled Timmy by giving him a Roboraptor Dinsosaur. This is a big remote-controlled dinosaur that has touch, sound and vision sensors. He has a hunting mode where it starts biting and playing tug of war. It is quite unbelievable and was something Timmy really wanted.
Our family spent a very good day together. It was so good to have everyone together. I felt a calmness, a peace and I felt the love that only a family can share together. I enjoyed everyone so much. I watched Timmy closely all day. I watched as he played and laughed with his brothers and cousins. His cousins Kristin and Derek are so kind and loving towards him. It's hard not to wonder if this will be Timmy's last Christmas with us. I hate to think this way. I hate to write this way, but Timmy is so very sick. Don't get me wrong, I do have so much hope, but there is my reality too. We are fighting a horrible beast called brain cancer, that often is so difficult to cure.
Timmy has been having some good days and just okay days. Some days he is up and about, talks and thinks clearly and looks so good. There are also days where he just sits in front of the television all day and has no energy to do much at all. Today was a good day. I was so happy to get Timmy out of the house and to the movies with some of his friends.
Tomorrow night we will drive into Philadelphia and spend the night at a hotel. We are due at Children's Hospital at 8AM on Thursday. As part of the clinical trial, Timmy must once again have blood drawn, at different intervals during the day till probably 5PM. It will be a very long day.
I hope everyone had a wonderful Christmas with their families. As we approach a New Year, I look forward to the hope that new medicines, treatments, testing and a cure will be found for all tumors and cancer. This is my greatest hope for Timmy and all the children who fight this battle so bravely.
I will update soon.
With Love & Hope,
Susan
Friday, December 23, 2005 6:47 PM CST
Merry Christmas Everyone,
Our visit to Children's Hospital with Timmy went very well yesterday. We were in by 1PM and on the road home by 2:30PM. It was strangely quiet, and much to our surprise, we met with Timmy's doctor and not the nurse practitioner. Well we planned on doing something funny and funny it was. Timmy was given a blinking red Rudolf's nose which he put on in the nursing procedure room before having his port accessed. When our nurse Mindy came in and saw Timmy with the blinking red nose she laughed until she cried. Well she just had to bring everyone else in to see Timmy's blinking red nose. Before you knew it there were quite a few people in the room laughing with Timmy. All of the commotion brought Timmy's doctor into the room and the expression on this usually serious doctor's face was priceless. He looked at Timmy and broke out with such a hardy laugh. All of the laughter was so good for all of us. It's nice to bring some lighter moments into everyones day.
Timmy's bloodcounts were very good again. Timmy's doctor performed a very long neurological exam on him. He told us everything he found as he went along. Timmy's walking is a little better. His right hand continues to be very weak. Everything overall remained pretty stable, mostly because of the steroids. We agreed to keep Timmy on the 3mgs a day. We spoke about Timmy's next MRI. The doctor wants to get into the 2nd course of Lapatinib before doing an MRI. He wants to do the MRI sometime during the week of January 16th. I was hoping to do the MRI earlier, but he wants to give the Lapatinib enough time to know if it is working or not. He does not want to give up to soon. On the other hand I fear if the Lapatinib is not helping then we are wasting time. I understand his logic and will go with it. If Timmy clinically deteriorates in any way during the next few weeks, we can always move the MRI up. Next Thursday we are due at the Clinical Research Lab at 8AM for another round of all day blood draws.
On Wednesday, Timmy had a very special visitor. The visitor was Santa Claus, really it was Santa Claus! Okay we were thrilled and excited to have a local radio DJ, 101.5 Big Joe Henry come to our house as Santa Claus. It was all set up by my friend Laura Puck and myself. Laura arranged for Big Joe to come and I arranged for Timmy to have a few of his friends here to share in the moment with him. Big Joe Henry rang some bells outside our front door which got all the kids attention. When he came into our family room, the expression on Timmy's face and all of the other childrens faces was fantastic! I think it was a combination of shock and excitement. Big Joe Henry had a laugh just like Santa's. He ho ho ho'd alot and spoke with Timmy for a few minutes. He then gave out gifts to Timmy and his friends. Timmy got a Game Cube and a couple of video games to go with it. Santa did not stay long, he had lots of work to do. Thank you Laura, Erin, Ryan, MaryAlice, Sue and MaryAnn for making the time to be there with us. A special thank you to Timmy's friends Osiris, John, Maddie and Anthony for sharing in this special day with Timmy.
The Christmas gifts continue to come in. I continue to be overwhelmed with everyone's kindness and generosity. I could never thank everyone here personally for all their gifts for Timmy and our family. I know I would forget someones name and I would hate to do that. My friends, you all know who you are, thank you once again from the bottom of my heart for making this a very memorable, merry Christmas for our family.
I wish everyone a Christmas day filled with magic, joy, peace, love and happiness. Enjoy every moment with your children and families. I know that I will.
To my new friends Sonya, Kristin, Ori and Joan. I wish you and your families a love-filled Christmas together. Please give Justis, Genna, Gabbie and Kyle the biggest hug from me and tell them I think about them all the time. We have amazing children!
I will update soon.
With Love & Hope, Susan 
Tuesday, December 20, 2005 3:01 PM CST
Dear Everyone,
What a great weekend our family had together. It was so nice being out of the house and doing some fun things with Timmy.
Saturday was our ferry ride with Santa. This was a huge event. The ferry, which must hold at least 400 people was completely filled with families, children and volunteers from "Jason's Dreams for Kids". Timmy even met two of his friends, Jesse and Peter from school on board. He was so happy to see them. During the ferry ride they served some food, desserts and of course there was a visit from Santa. We enjoyed cruising the New York Harbor and relaxing a bit. Timmy, once again, was given many toys from "Jason's Dreams for Kids". Timmy and I have talked about donating some of the toys to Children's Hospital of Philadelphia or the Ronald McDonald House. He has happily agreed to this.
On Saturday night Jay and I actually got to go out alone to a Christmas party. I will tell you that this is a first in well over a year. Thank you to my friend Laura Puck for inviting us to your home and making us feel so comfortable. We had a wonderful time, so enjoyed the food and the company. I managed to unwind, relax and laugh after two glasses of wine. Jason and Andrew did a great job of watching Timmy and even gave him his chemo at bedtime.
On Sunday, Timmy, Jason, Jay and I went to a concert at a beautiful local theatre here in Red Bank. The performer was a country singer named Kevin Sharp. Kevin is a cancer survivor who through his music brings inspiration, hope and joy to people. Kevin's performance was great. Timmy was bopping his head back and forth in his seat to the music. Kevin spoke many times of hope, strength and never giving up. It was a message I so wanted Timmy to hear. At one point in the performance, Kevin brought the children onto the stage and presented them with HOPE and SURVIVOR dog tags. This concert was also sponsored by "Jason's Dreams for Kid's". There were many children there who are battling some kind of life-threatening illness.
Timmy is doing good. I believe the increase in steroids (and mom only increased it to 3mgs instead of 4mgs a day)have gotten him up and about more. I have not noticed anything else improving just yet. He is happy though and having a great time being silly with his brothers.
A few of Timmy's friends came over yesterday with Christmas presents for him. He had a good time and lots of laughs with his friends. Thank you Sarah, Claudia and J.J. for the great gifts and for coming over to visit Timmy. I try to invite Timmy's friends over as often as I can. He needs to stay connected to them. He misses his friends and school so much.
I am finished with my Christmas shopping and even got Christmas cards out this year. This all makes me very happy. I just did not think I could get it all done, but I did. My family will all be coming to our house for Christmas dinner. I am not cooking, we will be bringing food in this year.
I am feeling good, happy these last few days. The love and support from my family and friends has given me so much comfort and strength. The guestbook messages are so uplifting and I thank everyone for taking the time to write one.
I am enjoying the excitement of Christmas through the eyes of a nine year old child who still believes in Santa Claus. This will be a great Christmas for Timmy and our family. I will make sure of that.
We are off to Children's Hospital on Thursday for a follow-up visit and bloodcounts. I believe we will be seeing Cindy, the nurse practitioner again. I will do my best to update one more time before Christmas. I am sure there will so much more to share with you.
With Love, Thanks and Hope,
Susan
www.jasonsdreamsforkids.com
www.kevinsharp.com
Friday, December 16, 2005 9:18 PM CST
Dear Family & Friends,
Unfortunately, not the best visit to Children's Hospital yesterday. We had a 12:30PM appointment with Timmy's doctor. We were sitting in the waiting area to see the doctor when he came out and told us that he needed to go to a meeting. He told us that his nurse practitioner would be seeing Timmy. First off, Timmy's blood counts were good. The Lapatinib does not seem to affect them very much. Cindy who is my favorite nurse practitioner (there are a few of them) examined Timmy thoroughly. She has not seen Timmy in awhile and it was obvious that she was concerned (and saddened) with his increased weaknesses. Cindy checked Timmy's gag reflex, it was very weak. She noticed that he drooled a little. This all indicates that Timmy may eventually have swallowing problems. It is something to watch. Timmy's right hand is so weak that he could barely squeeze her fingers. I also found out that the tumor is affecting the cranial nerves/muscles to the right side of the face. This is causing the droopy eyelid and mouth. Cindy and I spoke for awhile when Jay and Timmy left the room. We went over the Lapatinib protocol and she told me that we could do an MRI in two weeks. If at this time there is more tumor progression, we could drop out of the trial. If this happens, it once again brings us to the same place where we have to decide what will be next. Maybe the more aggressive chemo protocol? I don't know, but we will make that decision when, and if we have to in two weeks. I really am tired of getting bad news, of taking steps backwards. I so want some good news, something to hold on to. It's so hard to constantly get knocked down, it takes so much out of me. But I have found that I get over it and pick myself up and go on.
Talk about a bad day. On our way home we almost got killed. There was a scrap metal truck in front of us and it had metal debris flying out of the back of it. A hub cap came flying at our windshield and Jay had to make a hard right onto the shoulder to avoid it. He was doing about 55 mph on a major road and dodged the hub cap so that it hit underneath our car. I called the police right away from my cellphone and reported the truck. Thankfully no one got hurt, just unbelievably shook up!
When we got home from the hospital there was a message on our answering machine from Cindy to call her back at the hospital. It seems Cindy spoke to Timmy's doctor after we left about the not so good neurological exam. Timmy's doctor wants Timmy on a higher dose of steroids, 2mgs two times a day. Dam, dam, from 0.5mgs a day to 4mg a day. I HATE STEROIDS!
Timmy went to physical therapy at Bayshore Rehabilitation today. The girls have been going easier on him and have added alot of silliness and laughter to his therapy. Jane you really out did yourself today, Timmy thinks you have "gone crazy". I love that he laughs so much when he is there. What do they say about laughter being the best medicine.
Timmy also had his friend Anthony over today. Anthony was the friend that went to the Yankee game with Timmy and had their picture taken with Bernie Williams. Today, Anthony gave Timmy a framed copy of the picture of the three of them and it had "friends forever" printed on it. Thank you so much MaryAnn and Anthony. It was such a special, sentimental gift to Timmy and me.
Well we saw Santa on a plane and now tomorrow we get to see Santa on a ferry boat. There is an organization called "Jason's Dreams for Kids" who is hosting a Holiday Boat Ride on the Seastreak Ferry. We will cruise the N.Y. Harbor. There will also be snacks, beverages and of course Santa. Our whole family is going, including Andrew who came home from college today for his winter break.
Timmy is doing okay right now. He is happy and does what he needs to do. He said to me yesterday that he knows he will beat this tumor because "kids don't die". I love that he feels that way. It is a great positive attitude that he needs to have to continue on with this battle.
I ask everyone to continue to pray for Timmy, Genna and Kyle. Our friend Justis is not doing so good right now and Gabbie's MRI showed tumor progression. My heart hurts for these families too.
It is Christmas time, a time for MIRACLES. I am holding onto the hope that there is one out there for Timmy.
I will update soon.
Love, Susan
Tuesday, December 13, 2005 8:21 PM CST
Dear Everyone,
Sorry it took so long to update. It's been such a busy time. There is so much to do to get ready for Christmas.
Our "flight to the North Pole" on Sunday was fantastic! Timmy and I boarded the plane at about 10AM for the flight. Timmy was lucky enough to go up to the cockpit and meet the Captain. They only allowed one parent with a child on the plane, but since the plane was not full, they allowed others to board. Jason happily came along with us. We were told to keep the window shades closed because Santa lived in a secret location. The pilot drove around the airport for awhile. He realistically revved up the engines making it feel like we were taking off. The flight attendants sang Christmas songs with everyone and took lots of pictures. The pilot announced that he saw Santa and his reindeers and we'd better tighten our seat belts. He told everyone that landing at the North Pole could be rough. We pulled up to another gate, and when we exited the plane the airport was decorated as a winter wonderland. They had pizza, hot dogs, subs, popcorn machines, cotton candy, Philly pretzels, cupcakes, cookies, brownies and more. There were games and craft tables. The whole time they had Christmas music blasting throughout the airport. The best part was getting to meet Santa. Santa gave out the biggest bag of gifts to each child and their families. Timmy was given board games, hot wheels cars, a Philadelphia Phillies baseball helmet and unbelievably a portable DVD player and The Polar Express DVD. He also got a big stocking stuffed with so much candy. Jason was also given a gift card to Best Buy and was thrilled to spend some time talking with our Captain. We all had a wonderful day together. US Airways gave so much to so many families. They created memories for Timmy and our family that will never be forgotten.
I received a phone call from Timmy's school principal yesterday asking if she and some teachers could stop by today to visit. I was surprised, overwhelmed and moved to tears when they came walking in with toys and a huge gift basket. The gift basket was filled with money and gift cards for restaurants, many different stores, movie theaters, blockbuster and more. I did not know, but most of the school got together to do something special for Timmy and our family for Christmas. After a year, we are still being remembered and cared for so much. Our family would like to say thank you to everyone at Middletown Village School for their thoughtfulness and generosity.
Also, a special thank you to Joy Rothman for coming by today to see me and Timmy. Joy brought Timmy an early Christmas present which was something that was on his Christmas list. Timmy loves the helicopter Joy and so does Jason! Thank you for thinking of Timmy. Thank you for the hugs and most of all for your friendship.
Timmy has been dealing with bouts of vomiting and gastrointestinal problems again. He has been taking his chemo pills daily with no problems. I have also been giving him Zofran for nausea. Timmy took 12 pills today, that’s a lot of pills. He continues to be my little engine that could and keeps pushing himself along.
I think that most people that have seen Timmy lately have noticed that he has gotten worse. In the past, I use to hold onto the hope that maybe it was the chemo that was making Timmy weaker, but I believe now that it is tumor progression. It is just a matter of time before he stops walking, his legs are so weak. He barely uses his right hand at all and has a slight tremor in his left hand. The right side of Timmy’s face is drooping. It is very noticeable in his pictures. The thing that hurts the most is his mental deterioration. He has no short-term memory and has of lower level of alertness. The look in his eyes has changed. I worry so much about his vision. I can’t even begin to tell everyone how angry and sick it makes me knowing that this tumor is growing inside my son’s head. I am his mom, I should be able to fix this and I can’t. I will never give up hope. I love Timmy too much to give up hope. Along with so many other people, we hope and pray for our miracle for Timmy.
We have a doctor’s appointment and blood tests at Children’s Hospital on Thursday. Once again there is snow in the forecast. Winter has hit New Jersey hard. It is 18 degrees right now.
Please continue to keep Timmy, Genna, Justis, Gabbie and Kyle in your thoughts and prayers and I will update soon.
With Love, Hope & Thanks,
Susan
Friday, December 9, 2005 7:53 PM CST
A quick update on our visit to Children's Hospital yesterday. We had a 1PM appointment with Timmy's doctor, and for the first time ever, he saw us at 1PM. I went in ahead of Jay and Timmy so I could speak with the doctor about some of my concerns. Timmy's neurological exam was not good. His right arm and leg are very weak. The doctor is amazed that Timmy does not have any headaches. He asked Timmy many questions to try and listen to him speak. He asked Timmy, what do you do all day besides watching TV? Timmy was quiet and looked to me to help him answer the question. I always rescue him lately so he does not become frustrated. This time I looked away from him and did not help him. I wanted the doctor to see what a difficult time he has speaking, remembering. Timmy just looked down at the floor and did not answer at all. We all see the changes, but we have to give the Lapatinib some more time. Timmy's right eye is also a little puffy and bloodshot. The doctor thinks it is just dry eye. I hope that is all it is.
Overall, Timmy is tolerating the Lapatinib very well. Even though Timmy is weaker, his doctor was confident enough to try to have us drop his steroids from 0.5mg every day to 0.5mg every other day. It may not work, but it's worth a try.
Since we saw the doctor first, Timmy did his bloodtests after our visit. The good news is Timmys bloodcounts are great. The best I have seen in a very long time. Hemoglobin 13.2, WBC 5.1, Platelets and ANC all within normal range.
We were out of the hospital in record-breaking time and home by 4:30PM. The doctor wants to see Timmy again next Thursday.
So we are all hanging in there, going full speed ahead planning for the best Christmas ever. We have our "flight to the North Pole" on Sunday. I must admit that Jason is very excited about this trip. It certainly is not about seeing Santa, but he gets to hang out at the airport for a couple of hours and watch all the planes come and go! There is no snow in the forecast for the next couple of days. The big snowstorm Thursday night into Friday turned into a slush storm here. My son Jason along with many other kids planned on a snow day and were very, very disappointed with a full day of school.
Time to give Timmy his chemo.
I will update soon.
With Love & Hope,
Susan
Wednesday, December 7, 2005 7:42 PM CST
Dear Family & Friends,
Well Christmas has come to the Pauxtis house in a big way. On Sunday, Jay, Jason, Timmy and I got into the car and went searching for the perfect Christmas tree. We picked out a 9 foot tree, beautiful and fresh. This is the biggest tree we have ever gotten for Christmas. I want this to be an amazing Christmas for Timmy and we are off to a very good start. This year, we will have all of our family back together for Christmas at our house. I certainly do hope I can pull it off. On top of the stress of the season, there is the added stress of hoping Timmy will be well to enjoy Christmas.
Timmy is doing good. This is his ninth day on Lapatinib. His gastrointestinal problems have resolved. I think he is tolerating this new chemo well so far. I had hoped so much that Timmy would just remain stable for awhile. I did not want to see any changes that might indicate tumor progression, but I have. He has been having trouble getting some words out. He will say a sentence, and half way through it, "trip" over the words and have to start over again. He has said he does not like this happening, it worries him. It worries me too. Otherwise, I believe there have been no other changes since we last saw the doctor two weeks ago.
Timmy is now getting physical therapy at home. Our school system is sending the therapist (Marie) to our house once a week on Tuesdays. Marie is a petite (almost as tall as Timmy) very energetic young women. She really pushes Timmy hard. Timmy does not like wearing his leg brace. Marie gets it on him and walks him all around the house and up and down the stairs with it on. The brace really does help stabilize his leg and make him walk better. I just need to be tougher on him and make him wear it.
We are off to Children's Hospital tomorrow for a 1PM vist with the doctor and bloodcounts. I am curious how Timmy's bloodcounts will be affected on Lapatinib. I am hopeful that it won't be a long day because we have a big snowstorm coming in later Thursday night.
Timmy has an exciting trip coming up on Sunday. US Airways at Philadelphia Airport has invited the Oncology patients at Children's Hospital on a Non-Stop "Flight" to the North Pole. A plane will taxi around the airport and arrive at "Gate Rudolf" and we will then enter a winter wonderland full of food, prizes, crafts and of course Santa! We are all looking forward to going.
Lately, I have had a lot of friends checking in on me to see how I am doing. I am doing good. I have learned lately to take each day and each moment with Timmy and treasure them. Lately, Timmy has been giving me so much love. He tells me "I love you momma" "I'll love you forever and ever". He gives me the best kisses and hugs me so tightly. Sometimes all his attention scares me because I wonder why, why is he being so attentive? Whatever the reason, he is filling my heart up, makes me so happy and that is why I am doing good.
Please keep Timmy and his friends, Genna, Justis, Gabbie and Kyle in your thoughts and prayers. Gabbie has an MRI coming up soon and we so want stable tumors or better!
I will update soon.
With Love & Hope,
Susan
Saturday, December 3, 2005 10:12 PM CST
Dear Everyone,
I have been having some problems with this Caringbridge website lately. Any changes that I have tried to make in my journal updates are getting lost in cyberspace. I will admit to not being very computer savvy and I do not save my updates. My last journal entry of Wednesday, November 30th is gone. I really need to learn more about using the computer. Hopefully Jay or Jason will be giving me lessons soon.
Timmy is doing well. He has been having some bad gastrointestinal problems lately. It is one of the other things that Timmy just hates. Let’s just say I’ve had to add an Imodium to his chemo pills lately. Otherwise, Timmy still continues to have a great deal of weakness in his right leg and some in his left. He has such a difficult time walking and is unbalanced at times. He barely uses his right hand anymore. I don’t even notice his arm tremor; his right arm pretty much just rests on his lap now. His short term memory and level of alertness remain the same. I don’t think they have gotten any worse. On the good side, Timmy is still having his friends over, laughing and pushing himself along. He is happy and there is no complaining from this child.
Timmy had physical and occupational therapy on Thursday at Bayshore Rehabilitation. He worked out for 1 hour and 45 minutes stretching and strengthening his legs. His occupational therapist made him a splint for his right hand to help immobilize his wrist. This helps make his right hand a little stronger. Of course, he got to play baseball which he still enjoys very much. He just has such a great time hitting that ball and having the girls run all over the place. I love to hear him laugh.
Today, we had some very special company. Timmy’s friend Gracie, and her parents, Peggy, Hugh and her sister Hannah came to visit. Kelley, her husband Chris and daughter Gracie Jo also came to visit. Gracie and Kelley are friends from Timmy’s radiation days. My brother Tom and his fiancée Joanne, my niece and nephew Kristin and Derek came too. We have all wanted to get together. We have been traveling so much so Peggy and Kelley decided to come to see us. I know they have been worried about me and Timmy and wanted to cheer us up. Well cheer us up they did. They came with so much food from Pennsylvania. They brought a tray full of delicious hoagies, fresh philly pretzels, chocolate ones too. We had homemade oatmeal-chocolate chip cookies and cheesecake. It was wonderful having them here. We talked, laughed, and reminisced. Kelley and Gracie are brain tumor survivors. They are both doing so well and look great! Their visit made Timmy very happy. I cherish their friendships so much.
Tomorrow we will be getting our Christmas tree. I look forward to the scent of fresh pine in the house. I am so anxious to start decorating and bring the excitement and joy of Christmas into this house. I want this to be the best Christmas ever for Timmy!
Our next appointment at Children’s Hospital is Thursday. It is wonderful to have a week off.
Please visit Timmy’s guestbook and leave him a message. The messages make him feel special knowing that people are thinking about him.
I have posted some Thanksgiving pictures below. A lot of you know my mom and dad. They are definitely much older now. I feel so lucky to still have them around.
I will update soon.
With Love & Hope, Susan 
Sunday, November 27, 2005 9:48 AM CST
Will update soon. Adding new pictures!
Sunday, November 27, 2005 9:48 AM CST
TUESDAY UPDATE
On Wednesday, November 30th at 7:30PM there will be a Mass for the sick at St. Mary’s Church in Middletown, NJ. I would like to invite my family and friends to join me in praying for Timmy’s complete healing. Timmy is fine right now and started his new chemotherapy yesterday. Let’s all get together and storm the heavens with the power of prayer for Timmy.
Dear Family & Friends,
One year ago today, November 27, 2004, Timmy was diagnosed with a brain tumor.
I remember the weeks and days leading up to the diagnosis so vividly. Early October, Timmy's teacher picking up that something was just not right. We all thought it was a learning disability, and were going forward with testing to determine what it was. Timmy complained infrequently of leg pains, headache, but it was always something that went away. The Wednesday before the diagnosis, Timmy was at karate, sparring with a partner. He could not get his legs up, he could barely punch. Thanksgiving Thursday we went to my mom's house for dinner. Timmy was riding his scooter in the street but later became pale and complained of a headache. On Friday, Timmy went to work with Jay, into New York City, like he always does the day after Thanksgiving. He seemed fine that day until the evening when he became somewhat disoriented. I thought he was tired after a busy day and put him to bed. Saturday morning, Timmy wakes up vomiting and having tremors on the right side of his body. I will never forget it. It was then I knew something was terribly wrong, but still never a brain tumor
I put a call into our pediatrician, she said with symptoms like that, get Timmy to an emergency room right away. We took Timmy to Monmouth Medical Center where the wonderful Dr. Todd examined Timmy and sent him for a CAT Scan. When Dr. Todd came back into the room with a nurse and asked us to come with him, I knew my whole world was about to collapse. We were brought into a private room and I was crying, asking what's wrong over and over again. Dr. Todd told us with tears in his eyes that Timmy had a brain tumor. I remember crying and yelling, No! not my Timmy! Jay calmly spoke with Dr. Todd about what we were going to do. It took me a while to pull myself together and go back to be with Timmy. It's so hard to put on a strong, brave face when you are so filled with fear. Dr. Todd then made arrangements for Timmy and I to be airlifted to Children's Hospital of Philadelphia.
It is now one year later and our family is still scared, hurting but hopeful and praying for that miracle.
It is one year later and my beautiful, skinny, 60 pound son weighs 90 pounds. He looks like a different child, but he is still my Timmy.
It is one year later and I have acquired a vast knowledge on brain tumors, chemotherapy's, blood tests, MRI's and radiation. A knowledge that I'd rather know nothing about!
It is one year later and Timmy continues to be strong, determined, brave and unrelenting in this battle. He is like the engine in the story "The Little Engine That Could". I think I can, I think I can. He has not run out of steam and he pulls the caboose along (Mom) with his fighting spirit. In all honesty, it is Timmy who gives me the strength to continue on.
It is one year later and I am so thankful for my brother-in-law Dr. Gregory Pauxtis. All the support, research, phone calls taken and made to us are so very much appreciated. We love you and are so lucky to have you.
It is one year later and our family and friends continue to love us, support us and be there for us. All the food brought, the gifts, the cards have meant and helped so much. There are way too many names to write, but without my good friends Maryalice, Sue, Laura, Aunt Liz, Tara, Maryann,I think I would have gone into hiding. The Pauxtis and Antonelle families have grown closer through this. I love and appreciate all of our family members so much for being there for us.
It is a year later and this little school called Middletown Village has become a wonderful, caring community of people to our family. The principal, teachers, moms and students have embraced our family and continue to help us and support us in anyway they can. I am in awe of all of you and deeply grateful.
It is a year later and Timmy has made so many new friends, especially the New Jersey State Troopers. These men have become such an important part of Timmy's life. They have given so much to Timmy, but most important, just being there for him. Thank you to Trooper Bob Shaugnessey and Sgt. Mike Ambrosia. You have all lifted Timmy's spirits and made him very happy over and over again.
It is one year later and I am so thankful to have met a wonderful, caring group of therapists at Bayshore Rehabilitation. They have gotten Timmy strong and back on his feet. They have made him laugh and have fun. Thank you Jen, Jyo and Jane for the kindness you have shown to Timmy and me.
It is one year later and I have met many other families whose children are battling brain tumors too. They have become good friends. We understand each other and can comfort each other. I have come to care very much for these strong, beautiful children and their families too.
It is one year later and a children's hospital has come to know and care about Timmy and our family too. We have met many dedicated, compassionate doctors, nurses, technicians, social workers and child-life specialists. I admire them for the special work they do with children everyday.
It is a year later and Jay is still optimistic and strong. He holds me and this family together and nothing can knock him down. He is Timmy's favorite playmate and can always make him laugh.
It is one year later and our family and many other families around us have come to realize what is truly important in life. Enjoy each moment with those you love, because life can change in a heartbeat.
It is a year later and I am fighting so hard to save my child's life. There is a t-shirt that says "cancer sucks" and it does. It's horrible in an adult but in a child, well like the t-shirt says, it sucks.
It is a year later and my son's Andrew and Jason are doing good. They have been on their own so much physically and emotionally this past year and have survived. I am proud of both of them for their strength and all their accomplishments this year.
It is one year later and I can't believe we are starting chemotherapy number three in the hopes of reaching "two years later" Just give me the year and I will continue to fight this battle with all the love, hope, strength and determination that I have in me.
Later today we are heading into Philadelphia to spend the night. We must be at the hospital at 7:30am to start our very long day. First we must have Timmy's port accessed in Oncology. We then go to the Oncology Pharmacy to pick up the Lapatinib. We will then be going to the General Research Center where Timmy will have his blood drawn all day, at different time intervals, for eight hours. We will come home tomorrow night. Timmy's PET Scan is scheduled for 10AM Wednesday morning.
Please continue to keep Timmy in your thoughts and prayers. Timmy talks so much about "when he grows up". He continues to dream of becoming a policeman, "just like on the show COPS". Right now he just wants to go back to school again and be with all his friends. He wants to go back to karate and get his black belt. He wants to go back to cub scouts and do fun things and go on trips. He wants to ride his bicycle again around the neighborhood with all the other kids.
I want these things and so much more for Timmy. He deserves them. I just hope and pray that our miracle, maybe Lapatinib, is out there waiting for us.
I will update soon.
With Love, Hope & Thanks, Susan & Family
Wednesday, November 23, 2005 8:10 AM CST
Dear Everyone,
We are home. It was a very busy day yesterday, but we were home by 10PM. When we got to the hospital Timmy had his port accessed without any problems and had a lot of blood taken. We then met with the doctor and went over the details of the Lapatinib clinical trial. We talked about side-effects, none any worse than Timmy has had before. The doctor told us that Lapatinib has been keeping a few children's tumors stable at the hospital. We consented to, as part of the trial, to give the researchers what is left of Timmy's tumor biopsy slide. We consented to an overnight hospital stay where they would draw Timmy's blood at different intervals. This is to determine the affect Lapatinib has in the blood at different times. We signed all the consent papers.
Timmy's doctor briefly examined him. I have learned an exam becomes brief when the doctor immediately notices change that is not good. Timmy is definitely weaker. He is unbalanced when he walks. The doctor also picked up on his memory and cognitive changes. Timmy's doctor talks so good to him. Timmy feels comfortable around him, which makes me feel good. For the first time yesterday we used a wheelchair all day to get Timmy around. My stubborn son did not want use one, but he eventually gave into his mom.
After we left Oncology we headed over the the Heart Lab. Timmy had an echocardiogram. It was a complete study which included his stomach, heart and neck. They put a cold gel on these areas and guided a probe around. Timmy, being quite ticklish jumped around a bit. He started coughing when they did his neck, it was very uncomfortable. Timmy did very well though and the procedure took about 45 minutes.
Next we headed over to MRI. They were running late so we waited about an hour. Timmy's port was left accessed from Oncology so the contrast dye needed with the MRI could be given. Timmy's MRI took 1 hour and 45 minutes! Since this is a clinical trial, the MRI needed to be done in a specific way. I cannot believe Timmy layed still that long. My son truly amazes me. He came out completely bewildered and bleary-eyed. Jay stayed with him the whole time and I nervously paced the hospital. I ran into Timmy's doctor while I was waiting and we spoke about Timmy a bit. He acknowledged Timmy was "worse". I knew that, but I cried anyway. He promised to call me in the morning with the MRI results.
We took Timmy to the McDonald's in the hospital for dinner. It was just what we all needed for the long ride home.
Timmy's doctor called at 9AM this morning. He said Timmy's MRI is "rock solid stable". His last MRI was just 3 weeks ago. He knew I was concerned that the tumor was progressing quickly, but it's not and I will take that as good news. He also said to me that this trial will not be the end of the road, we have other options. He is not giving up as long as we do not want to. I heard genuine caring and concern in his voice and that made me happy. We wished each other a Happy Thanksgiving.
We are back to Children's Hospital on Monday to get the chemo pills, and as part of the clinical trial, Timmy will have blood drawn eight hours apart. We will probably have to be there early Monday morning. It will be another long day. Timmy's PET scan is scheduled for next Wednesday.
Timmy is feeling pretty good this morning after a good nights sleep. We will start cooking for Thanksgiving later this evening. Timmy is looking forward to helping. His job is to make the stuffing (his favorite)!
Once again, I wish all my family and friends a wonderful Thanksgiving with their families. I will enjoy this day with my mom and dad, Jay and all my boys around me. I will be thankful for all I have, especially my Timmy.
Happy Thanksgiving to my new friends, Kristin, Sonya, Joan and Ori. I am thankful to have met you and your children. We all truly understand the meaning of giving thanks this holiday.
I will update soon.
With Love, Hope & Thanks, Susan
Monday, November 21, 2005 9:38 PM CST
TIMMY IS IN! I heard this morning that Timmy has been accepted into the Lapatinib clinical trial. I am cautiously happy, hopeful about this, because in some way, it gives us hope. It could be Timmy's miracle! I know the reality of the situation is serious, but I need to have hope. Right now, if just for today, some heavy weight has been lifted off me. It's been a good day, a better one than I have had in months.
Well they said everything would move along quickly and it is. We are off to Children's Hospital tomorrow for a marathon of appointments. At 1PM we meet with the doctor and go over and sign all the paperwork. Timmy will also have blood drawn to do all the required testing. At 3PM, Timmy has an EKG and pulmonary function test and at 4:30PM, another MRI with a spectroscopy, this usually takes well over an hour. Timmy had done this before and we plan to do it again without sedation.
They also need a PET Scan which we don't have details about yet. They are hopefully scheduling it for Wednesday or Friday. We will find out tomorrow. I have booked a hotel room in Philadelphia, just in case it is early Wednesday morning. I must mention that Timmy does need to pass all of this testing to get into the trial. I have no reason to believe he won't and hope it won't become a problem. I believe chemotherapy could start as early as next week.
Jay and I spoke to Timmy about all of this tonight. He listened, his eyes got wide. I know he's nervous but I believe he still has the strength in him to get through this again.
Timmy had a rough weekend. He fell a few times, his legs are getting weaker. He also has a distant look in his eyes and has poor short term memory. He is becoming frustrated with the changes in his body. He cried a few times out of frustration. This ugly tumor has really started to affect him. It breaks my heart to see the changes in him and to see him cry.
I don't have the time to update Timmy's journal before Thanksgiving the way I wanted to. I will post another update after Thanksgiving when there is time to sit and say what I really wanted to say.
WHAT THANKSGIVING MEANS TO ME
It's the time of year when we're reminded to give thanks.
Instead of waiting till next year to be reminded,
Let's make every day one of Thanksgiving.
After all, each day is a unique gift.
So, give a hug for no reason;
Say I love you, just because;
Share a smile with a stranger;
Take the time to count your blessings;
Don't take anyone or anything for granted;
End each day with no regrets.
Thank you my family and friends
For sharing, caring, laughing and crying with me.
I'm blessed to have each and every one of you in my life.
And I am thankful you have allowed me
To be a part of yours.
Have a safe, memorable Thanksgiving with your families.
Author Unknown but from my heart!
With Love & Hope, Susan
Friday, November 18, 2005 8:06 PM CST
Hi Everyone,
Heard from Timmy's doctor this morning. Timmy is number three in the "que"(in line) for the Lapatinib clinical trial. Every several weeks the researchers review the results from the trial and decide if, and how many, new patients will be added to the trial. Our doctor says they usually take three patients at a time. He is hoping this will happen next week. Once Timmy is accepted the pre-clinical trial testing will happen quickly. If for some reason the trial does not open up next week, Timmy's doctor says we will have to regroup. It will be three weeks that Timmy will have been off chemotherapy and the doctor does not want him to go much longer than that. Right now we do not have an appointment to see the doctor next week. If over the next few days we have any concerns, his doctor will see him on Tuesday. I believe Timmy is stable right now. I hope that by next week, we will get the good news, that Timmy has been accepted into this clinical trial. I really need everyone to hope and pray that nothing will get in the way of Timmy getting into this trial again. Our family is still holding on to "hope", the hope that this may be the drug that can stabilize Timmy's tumor.
A while ago, a group of Navy S.E.A.L.S from Virginia Beach, VA had invited Timmy to watch a demolition/training mission of a hotel in the Catskill Mountains in New York. This had been arranged through the NYC Police Department and the NJ State Troopers. It was planned for this past Tuesday night. We declined to go because it was at 6PM in the evening and just such a long ride. The NJ State Troopers were going to bring us there, but I was just worried it would be too much on Timmy. I got a phone call late Tuesday night from our friend, NJ State Trooper Bob Shaughnessy that four of the Navy S.E.A.L.S would like to stop by our house on Wednesday morning to meet Timmy. They also had something they wanted to give him. I couldn't believe that these guys wanted to go out of their way to meet Timmy. On Wednesday morning, Trooper Shaughnessy, two NYC police officers and the four Navy S.E.A.L.S all came to our house. These guys were great to Timmy. They brought along alot of equipment that they use, and showed it to Timmy. They had camoflauge outfits, helmets, night vision googles, tools, strobe lights, binoculars and so much more. They impressed me when they said that some of them were part of the team that rescued Jessica Lynch in Iraq. These guys were true professional, skilled soldiers. They told Timmy they were proud of him for the courage he displayed in fighting his own battle. They gave him a plaque honoring him and an American Flag. I have enclosed a picture below. Timmy was practically speechless while they were here, smiling and just taking it all in. Unfortunately, I did not get any names, but in case you guys read this some day, thank you once again for doing this for Timmy.
On Thursday, Timmy went into school for a while. Timmy had entered a "school spirit" tee shirt contest a few weeks ago. All the children had to design a tee shirt for their grades. I knew that Timmy had won the contest for the 4th grade. It was planned for him to go in to hear his name announced as the winner. When Timmy's name was called, all the children in his class yelled "Yeah" and Timmy was surprised, smiling and very happy. Thank you to our Principal, Beth Bournias and our school Co-Vice President, and my friend Sue Griffin for arranging this to happen when Timmy was able to come it. I have enclosed a picture of the tee shirt below.
Timmy also went into school today for a short while for the Math Olympics. He had a great time watching a math magic show with the entire school.
Over the last few days that I have been at Village School, I have run into a lot of moms, teachers and friends that I have not seen for a while. I want to say thank you so much to everyone that has come up to me to say hello, to give me a hug or just ask me how I am doing. It means so much to me. I know no one knows exactly what to say to me. I understand that. I don't know what to say either. Just know that your hello's and hugs are so welcomed and I really need them right now.
November 27th will be one year, one year since Timmy was diagnosed with a brain tumor. I remember the days that led up to that Saturday morning so vividly in my mind. It was a day that changed our family forever. I will write about that more in another update. This one has gotten much too long and I hope that you have all gotten to the end with me.
Well my Andrew is home safe and it is getting late. Please keep Timmy, Genna, Justis, Kyle and Gabbie (these children and their families are going through some tough times too) in your thoughts and prayers. I will update soon.
With Love, Thanks & Hope, Susan 
Tuesday, November 15, 2005 7:42 PM CST
Dear Everyone,
And the waiting begins...On Friday when we made our decision to enter the clinical trial "Lapatinib", we knew we would have to wait 2-3 weeks before starting chemotherapy again. Only four days have gone by and it seems like forever. We are so use to Timmy being on chemotherapy. The thought of him not being on anything for the next few weeks is weighing heavily on us. We don't want to give this tumor any time to continue to grow. Jay and I stay up late these nights talking, thinking, rethinking and worrying about our decision. Part of us wants to jump ship and get Timmy on chemo right away again. In the end, we have made a decision that we will stick with, as long as Timmy stays well.
We have not heard from the Hospital since Friday. I put a call in today to the Oncology Clinic asking for some details on Timmy's pre-clinical trial testing. I think once we know there is a plan in place, we will settle in and wait better.
Timmy had a good weekend. On Sunday he had three of his friends over to play. The boys all watched a movie together "Shark Boy and Lava Girl" in 3-D. They all had to wear 3D glasses while watching the movie. It was so funny to look in the room and see all these boys wearing these silly glasses and eating popcorn. After the movie, the boys all found some kind of weapon and started chasing each other around. Timmy wisely centered himself in the middle of the room, watching all the action and laughing hysterically. I can tell you that the sound of Timmy's laughter made Jay and I incredibly happy! Thanks for coming by Anthony, Osiris and TJ.
Timmy has been out of school now for a couple of weeks. He really misses going but tells me he's not up to it yet. Timmy is physically and mentally weaker than just a month ago. I hope to get some home tutoring going soon. I know some of his teachers will be coming by to visit and spend time with him. He really needs this. He still needs to feel connected to his school.
I took Timmy to physical and occupational therapy today at Bayshore Rehabilitation. We have not been there for a while, so it was great to see everyone again. Timmy got a good work out and of course got to play baseball. He can still hit that ball! Timmy's very pregnant physical therapist Jen had Timmy laughing so hard. Jen gave Timmy a target to aim for. Let's just say it wasn't her belly. Thank you Jen, Jyo, and Jane for working so hard to make Timmy strong and happy.
Well, Andrew will be home from college on Friday for the Thanksgiving break. It will be wonderful to have the whole family together again. I want all my boys together. I just want to love them, hug them and spend time with them. My three sons.
Sending love and get well wishes to Nanie and Grandpa in California. I'm sorry we don't talk much but I think of you often.
Please keep Timmy in your thoughts and prayers and I will update soon.
With Love, Thanks & Hope, Susan
Friday, November 11, 2005 6:58 PM CST
Dear Family & Friends,
It has been a very long two days with a lot of information to process and a decision to be made.
We had an appointment with Timmy's neuro-oncologist yesterday at Children's Hospital. The doctor examined Timmy quickly and then spoke with him. He asked Timmy how he was feeling. How is your head, your belly, your tremor, and how his walking was? My son bravely said that he was just fine, and that his hand just shook a little. The doctor smiled at him and sent him out of the room and spent the next hour speaking with Jay and I.
The doctor then brought up the pictures from Timmy's MRI and we reviewed them together. The original tumor in the left thalamus was stable, but what was so obvious was that it crossed over into the right thalamus. Small growth but obvious. The fact that it is now in the right thalamus indicates that Timmy will start to have tremors and weakness on his left side too. This tumor is being an aggressive, malignant glioma. The pictures were so difficult to look at and my heart just hurt for all that Timmy is going through.
Next we spoke about treatments. We told the doctor that we want to go ahead with chemo #3. We spoke about all standard brain tumor chemotherapy's, and ruled them out. He believes they will be ineffective against this aggressive glioma.
We spoke about two clinical trials. One being Lapatinib, the same trial Timmy was to enter about two months ago. It is still ongoing because it is proving to have some effectiveness in stopping or shrinking certain tumors. It is oral and generally well tolerated. The biggest drawback is the wait to get into the trial, maybe 2-3 weeks.
The next trial is new for children. It has only been tested in adults. The chemo is intravenous and aggressive. It came with many side-effects such as intra-cranial hemmorrhage, heart attack, and stomach bleeding.
Our choice is Lapatinib. We thought about the other, the let's be aggressive theory again. We don't want Timmy to suffer. We want Timmy to be able to live his life feeling as good and happy as he can. I don't know if Timmy has one year or 100 years left but we will certainly make the best of those years.
Surprisingly, Timmy's bloodcounts are solid and strong enough to go ahead with chemo next week. After 9 weeks of chemotherapy, my son's counts are strong like him. We must wait now and go through all the steps to enter the Lapatinib clinical trial. Another MRI, bloodwork, EKG and more I need to find out about. I just hope Timmy can get into the trial as soon as possible.
Timmy is feeling pretty good right now. Yes, his body is weak, he's forgetful, he limps and has an arm tremor, but his spirit and determination are strong.
Once again, my love and thanks to all my friends who continue to stand by me and keep their arms open to support me.
There are some children out there that are fighting this battle too, right along with Timmy. I have come to care about them and their families very much. Genna, Justis, Kyle and sweet Gabbie. My positive thoughts are prayers are with you.
Below is a link about the Lapatinib clinical trial again.
With Love & Hope, Susan
Tuesday, November 8, 2005 8:05 PM CST
Hi Everyone,
Yesterdays journal entry was just too sad. I needed to change it. I would like to share with all of you something good that happened today.
I had an idea this morning and I went with it. I wanted this to be a fun and exciting day for Timmy. As most of you know, my son Jason now has his private pilot's license. Well today, Jason took Timmy flying for the first time! Timmy had no hesitation at all and had a fantastic time flying with his brother. They flew over our house, Timmy's school and over the ocean. It's hard to believe, but I was not nervous at all. My boy's shared some very special time together. See the pictures below.
With Much Love, Thanks & Hope, Susan
Monday, November 7, 2005 5:09 PM CST
How I wish I could have good news to share with everyone.
It is with heavy heart that I tell you that Timmy has new tumor progression.
Our doctor, Dr. Peter Phillips, head neuro-oncologist of Children's Hospital of Philadelphia has told us that Timmy's tumor has new progression.
I will try to explain the best I can. Timmy's original tumor is located in the left thalamus. This tumor has stayed the same (stable). What is so grim and devastating is that the tumor has now gone into his right thalamus, which means it is now on both sides of his brain. The doctor said it was just a couple of millimeters growth, but growth is growth.
We have an appointment on Thursday with Dr. Phillips to review Timmy's scans and to talk about what is next. He is leaning towards clinical trials again. Jay and I have so much to talk about and so many decisions to make.
My wonderful family and friends, I love you all for being there for me. I need you all more now than ever. I love Timmy so much and my heart is just breaking. Please continue to pray and I will write another update soon.
With Love & Thanks, Susan
Saturday, November 5, 2005 5:50 PM CST
Just would like everyone to know that Timmy did a great job getting through his MRI today. Timmy had a brain MRI with contrast (dye) so his port needed to be accessed to inject the dye. The nurse had a difficult time accessing his port and poked him twice!(This is a big long needle). I was cringing and actually felt lightheaded watching her. Timmy got through it with no complaints or pain. The MRI took just 40 minutes. Jay always goes in with Timmy and I lurk outside the double doors trying to get a glimpse of the images on the monitor. Certainly can't miss this big tumor, but I am no radiologist, so I better just wait and let the professionals do their job and read it. I actually got in trouble once for peeking in.
Everything went smoothly until the ride home. Three hours to get home. Traffic out of Philadelphia was a nightmare.
Timmy is doing good tonight. He is just so much weaker and tired. Now the waiting begins for that phone call on Monday.
My deepest heartfelt thanks to everyone for continuing to be there for our family. The outpouring of love and concern for Timmy overwhelms me. I will update with the MRI results as soon as I can.
With Love & Hope, Susan
Friday, November 4, 2005 12:32 AM CST
Dear Family & Friends,
Not the best visit at Children's yesterday. The doctor is concerned with neurological changes he see's in Timmy. He has scheduled an MRI for tomorrow, Saturday at 1PM at Children's Hospital. The doctor will call us Monday with the results of the MRI.
Once again Timmy's bloodcounts were low but he did receive chemo and has now officially finished his "induction period".
Timmy is relaxing comfortably today and not complaining about a thing. In all honesty we are all so scared to hear what may be going on. I have heard the phrase "storm the heavens" with prayer. I have had a hard time with prayer lately, so many questions, so many doubts. Knowing people are praying for Timmy brings me alot of comfort. Thank you all so much.
Please understand if you call and I don't pick up the phone. I am so tired and am having a hard time talking right now.
I will update next week as soon as I can.
With Love & Hope, Susan
Tuesday, November 1, 2005 8:41 PM CST
Hi Everyone,
Very quiet weekend around here. Just me, Jay and Timmy spending some quiet time together and going out to dinner. With two older sons, who are busy with their own lives, sometimes it feels like just the three of us. It's kind of neat, someone my age (40ish) and a 50 year old husband, having a cool little 9 year old to play with.
So on with some of the good things. Timmy made it into school on Tuesday for the Halloween party with his class. He had a good time being there. He joined in with the Halloween parade and took lots of pictures. I hope to post some soon. The teachers filled up a big bag full of candy, toys, beanie babies, gift cards, and lots of Halloween cards. They all worried that Timmy would not be able to trick or treat so they all got together, our amazing Middletown Village School community and made sure Timmy's Halloween was great. Thank you all for doing such a wonderful thing for Timmy. It made him very happy!
Timmy did go trick or treating. I brought a wagon along for Timmy to rest and ride in if he needed to. He did get tired very quickly and used the wagon alot. We were quite a mob scene in the neighborhood. At least 20 moms and kids came to our house and walked the neighborhood with us. Timmy was not thrilled having to ride in the wagon and my heart just hurt for him. It was just last Halloween (before knowledge of brain tumor) that Timmy was running from door to door without a care in the world. Many of his friends carried his bag to each house to get treats for him. Thank you guys, you are such good friends to Timmy.
Timmy has not made it into school for class time this week. He tells me he is just not up to it. I believe him. He is so tired, and so much weaker than I have ever seen him. He has such a distant look in his eyes. I keep saying, it's just the chemo, it's just the chemo. I hope it is just the chemo.
We are off to Children's Hospital on Thursday. We have a 10AM appointment with Timmy's doctor. I hope so or they will hear me yelling back in Middletown! I was informed last week that this should be Timmy's last round of chemotherapy. A few weeks back Timmy had carboplatin when he was only suppose to get vincristine. Since his bloodcounts were good the doctor went ahead with both. Sounded great at the time, lets be aggressive, but could be why he crashed and needed that blood transfusion.
I would like to send positive thoughts, prayers and hope to some Caringbridge families that I have come to know and care about. Genna, Kyle and Justis, you are amazing kids with loving moms I admire so much.
Please keep Timmy in your thoughts and prayers. I need some good news, I really need some good news.....I will update soon.
Love, Susan
Friday, October 28, 2005 6:52 PM CDT
Dear Family & Friends,
Yesterday, we were back at Children's Hospital again. I was somewhat doubtful whether Timmy would be getting his chemotherapy. I just did not think his bloodcounts would recover in time. I am truly amazed at what a difference a blood transfusion can make. Timmy's hemoglobin jumped from 6.6 on Tuesday to 11.8 on Thursday! Most of his other bloodcounts are still very low but good enough to go forward with his chemo treatment. Chemo treatment #8 is now complete.
We met with the nurse practitioner yesterday. She spent a lot of time examining Timmy and answering my concerns and questions. She believes Timmy's neurological exam is still stable. Timmy's arm tremor and difficulty walking got so much worse this past weekend due to his weakened and fatigued body. I fear Timmy's tremor and difficulty walking are somewhat increased. He has memory problems and difficulty understanding what is being said to him at times. I was very happy that after the nurse finished examining Timmy, she brought in a neuro-oncologist to check Timmy over. Dr. Belasco is a brilliant, caring and sympathetic doctor whom I have admired in the past. She spent alot of time with us, answering my questions. What it really comes down to is the MRI. They can tell me that Timmy is stable, and I can worry about good and bad changes in Timmy and what they mean. The MRI is the only definitive answer to what is going on in Timmy's head. I just must wait 20 more days to get my answers. The waiting is so very difficult.
Timmy continues to gain weight and has such puffy cheeks. His weight gain concerns me and I have asked for endocrine testing. He is on such a low dose of steroids now, 0.5mg a day. He should be losing some weight, for he is not eating a great deal of food. I also try to be so careful with his calorie and sugar intake. This extra weight could be adding to his difficulty walking too.
My friend Maryalice Castaner came with me and Timmy to Children's Hospital yesterday. It is a whole new world for most people to see. You really never think about children with cancer much because you don't really see it much. When you do see it, it gets to you and it hurts. Maryalice is a caring, sensitive mom who had tears in her eyes many times during the day as she watched the sick children undergoing their treatments. One of the little boys reminded her so much of her own son. One thing I have learned is that cancer does not discriminate. These children are all different nationalities, ages and religions. They come from wealthy families and poor families. They are all of our children and you realize that when you are there. I will always question, why Timmy? I have met so many wonderful families and in some way it brings me comfort to know that there are other families, just like mine who question why too. Thank you to my friend Maryalice for being with us yesterday and for caring so much for me and Timmy.
This past week, Timmy has been receiving many gifts, candy, and cards, especially for Halloween. From the bottom of my heart I want to thank some people who are so very good to us. Tara Fleming (candy in the mailbox every chemo day), Liz Fernandes (the best Godmother in the world),Tom Antonelle (the best Godfather and caring brother), Laura Puck (a friend who truly understands all I am going through), MaryAnn Bonfiglio (all your supportive phone calls and for your son being Timmy's best friend), Michelle Mabry (gifts, cards, prayers) Cathy Chakamian (for the delicious meal last night),Rosemary Beck (for gifts, prayers, and dropping off homework), Sami & Matt Kennedy (gifts, cards, and always being there Lisa), Sue Griffin (my favorite nurse, and friend who can talk to me and always make me feel better), Kelley Maresca (for the positive thoughts, phone calls,and caring so much), Miss Diane, Susan Gibadlo, Vivian Palmer, MaryPat Harrington, Brenda Yeager,Angels Angela and Sandie, Jane Bagnano, Miss Colmorgen, Dina DelRusso, Filecci Family and to anyone I may have forgotten. Thank you so much!
We have heard from John Hopkins Hospital in Baltimore. The same again, inoperable. They would have done the same chemos. Must keep trying different chemo's, if one doesn't work another will.
Also, today Timmy received a package from Fort Hood in Texas. A Command Sergeant Major, and many other officers sent Timmy a certificate that said:
"For your courage, and determination through troubled times. In honor of your wish to be with Soldiers at Fort Hood, Texas, you are hereby granted an honorary membership in the 2nd "Black Jack" Brigade Combat Team, 1st Calvary Division. We are truly thankful to have a great American like you on our team"
A letter also encouraged Timmy to stay strong. They said they were proud to support Timmy through his treatments and look forward to meeting him. The best was at the end of the letter, it said: "We have a M1A2 tank waiting to take you for a ride!" Needless to say this made Timmy's day!
I am so hopeful that Timmy will be feeling good enough to go to school for a Halloween party on Monday. We also plan to have a few friends over to go trick or treating. Of course, Timmy is being an army guy for Halloween.
This has been a very long update. Tonight there was so much to say. I am so thankful for my family and friends. I am so thankful for all the people who have come into our lives. I am so thankful for my son who is so good, strong and brave. I love you so much Timmy, so many people do!
Good Night
Love, Susan
Wednesday, October 26, 2005 8:18 AM CDT
Hi Everyone,
Just want to let everyone know that Timmy did great with his transfusion yesterday. We arrived at the hospital at about 9:45 AM and Timmy had his port accessed right away. Blood was drawn for counts and a type match for the blood transfusion. Timmy's counts were once again the lowest I have ever seen, with his hemoglobin now at 6.6. We waited for about 1 1/2 hours for the blood to arrive and then were called back to the Day Hospital. Over the next three hours Timmy had two units of blood dripped in through his port. He did very well, no reactions at all, just some bright red cheeks which brought all his freckles back out on his cheeks.
We still have to return to Children's Hospital on Thursday. There is a good chance Timmy will still get his chemotherapy. He also has a check-up with the doctor, who suddenly turned into the nurse practitioner as of yesterday. Timmy's doctor, along with many other oncology doctors are going to a conference on Thursday. This really upsets me. Timmy should be being seen by his doctor right now (like I was told he would) through these difficult days.
The weather overall was not as bad as expected yesterday. It was windy and rainy but we had no major problems getting in and out of Philadelphia.
This morning, Timmy seems to be feeling good. He definitely has more color in his cheeks and his eyes look bright. He had a good nights sleep. Today we rest up and get ready for our next trip to the Hospital tomorrow.
Please everyone, think strong positive thoughts and pray that this next round of chemo will not be too hard on Timmy's body. We just have a few more to get through and the MRI is just 3 weeks away.
Thank you so much to all our friends and family for your love and support, and especially for continuing to come to Timmy's website to see how he is doing. I read him his messages all the time and they truly make him smile.
I will update soon.
With Love & Thanks, Susan
Monday, October 24, 2005 8:48 PM CDT
Dear Everyone,
It has been such a difficult couple of days for Timmy. He is not feeling well at all. His face and lips have no color at all and he is just so weak. This last round of chemo has been so hard on his body.
Today I took Timmy to our Pediatrician's office. I just felt something was not right. Timmy's Pediatrician, Dr. Harmady is a wonderful, caring woman who has stayed in touch with us since Timmy was diagnosed. She had us come to the office right away, using the back door so we could avoid all the other sick children. The nurse did a quick finger stick blood test on Timmy so we could get a complete blood count. Timmy's hemoglobin is now 7.4, very low, and he will need a blood transfusion tomorrow. His white and red blood cell counts were so low they did not register on the machine! That scared the life out of me!
When we got home I called the hospital's oncology phone nurse to ask her if we should come in right away. Since it was already afternoon, we were told by the time we got to the hospital, we would probably have to go to the emergency room to do the blood transfusion. She also said there would be a good chance they would keep Timmy overnight to watch him. She also said, after checking with a doctor, that we could come in first thing tomorrow morning. Since Timmy is not dizzy, vomiting or having headaches they thought he would be fine until morning. We have chosen to go in the morning.
Well for our family and friends not here in New Jersey, a Nor'Easter is on its way, starting tonight and continuing through tomorrow. They are saying 40-50mph winds and many inches of heavy rain and cold! I can't believe we have to drive to Philadelphia in this tomorrow. It's going to be a very long day.
I know the blood transfusion will make Timmy feel stronger. Hopefully he will be all right and still be able to stay on schedule and do chemo on Thursday. I guess I will find this out tomorrow.
Timmy is trying his best to be brave. He hardly ever complains and just does what he needs to do. I feel so bad for him because he is so bored. I am sure he will be out of school all week. Hopefully he will be stronger soon and be back in school with all his friends. That is the one thing that makes him very happy.
Please keep us in your thoughts and prayers that all goes well tomorrow, especially getting there in this horrible weather.
I will update soon.
With Love & Thanks, Susan
Friday, October 21, 2005 3:29 PM CDT
Hi Everyone,
What an unusual day at Children's Hospital yesterday. The hospital was strangely quiet and everything ran so smoothly. We were in and out in four hours and Timmy has now completed chemo #7.
Port access went great and Timmy has gained another pound. I am concerned about his weight gain. He has quite a belly and puffy cheeks. It's all because of the steroids, and unfortunately he is not ready to come off of them yet. Timmy's doctor was in the hospital on an emergency, so once again we met with the nurse practitioner. Timmy's neurological exam was stable. The nurse thought his arm tremor and walking were also stable. Timmy has no reflexes in his arms or legs, a side effect of his chemo vincristine. Bloodcounts were very low, the lowest I have ever seen them. Hemoglobin 8.5, this is a significant drop from 10.5 in one week. Timmy will probably need a packed red blood cell transfusion within the next week. I have to watch him for extreme fatigue, paleness, headache and nausea. I wish they could have done the transfusion yesterday but I was told that blood transfusions carry risks. They do not want to do one unless absolutely necessary. The nurse suggested if we are concerned we should go to our local hospital for blood tests. If his hemoglobin has dropped even more we will need to go back to Children's for the transfusion. The nurse practitioner did page Timmy's doctor to get the go ahead for chemo and the okay to drop his steroids just a little. Timmy did great with his chemo treatment and we were out of the hospital by 2PM.
We have a date. Wednesday, November 16th, Timmy will be having his next MRI. It will be at 6PM in the evening. We will spend the night in Philadelphia and meet with the doctor at 1PM on Thursday for the results. This is such an important MRI. It is 26 days away but the thought of it scares me already. I want so much to just hear the words STABLE. Stable gives Timmy a fighting chance!
Today was picture day at school. Timmy was not up to attending class today but really wanted to have his picture taken with his class. It amazes me the things that are important to him that he pushes himself to do. These are the normal things that keep him going and make him happy.
Thank you so much to my brother Tom for driving us to Philadelphia yesterday. It was great to spend time with you.
Thank you also to everyone for remembering Timmy with the great messages, cards and gifts. I appreciate your thoughtfulness very much.
Looking forward to a quiet weekend.
Love, Susan
Tuesday, October 18, 2005 8:25 AM CDT
Dear Everyone,
It is a beautiful, sunny Fall morning and Timmy is in school. As I drove him to school today his eyes looked bright and he was happy. My mind is like a camera sometimes, I hold on to a special look, a smile and I visualize it all day, until he comes home. Timmy is such a good boy and I love and need him so much.
It was a rough weekend for Timmy. He did not go to school Friday. He was just too weak and tired. This was his decision, he always wants to go. The chemo has finally hit him.
On Saturday, Jay and I took Timmy to a Harvest Party at Ocean Community College, NJ. Since my parents live down in Ocean we took them with us too. The Harvest Party was a celebration given by a family whose daughter is a brain tumor survivor. I think it was their 9th year doing this. Timmy gets invited to all kinds of wonderful events because his name in on a list with the American Cancer Society. Timmy was tired, very pale and he needed to sit alot. He had a difficult time walking. There was lots of food, desserts, (caramel apples)crafts, rides, a magician, an amazing balloon sculptor who made Timmy a cool man riding on a motorcycle. Timmy also walked away with a bag full of toys and pumpkins. It was a fun day, and it was so good for all of us to get out in the sunshine after a week of rain.
Timmy did go to school yesterday and had a great day. Timmy's aide, Susan Wallrabe is a wonderful mom who fills me in everyday on how Timmy did. She always makes me feel so good because she tells me all the positive things that happened in his day. To Timmy's teacher, Peggy Bauer, thank you for being there for my son and caring so much. Most of us know that cancer has caused heartache in your life. What you are giving back to Timmy and our family means more than words can ever say. Thank you both so much for being a part of Timmy's life.
Timmy also went to physical and occupational therapy yesterday. He worked hard for almost 1 1/2 hours and was quite exhausted when he was done. Thank you so much Jen, Jyo, Jane, and Delphine for doing such a great job with Timmy and for your patience with our annoying insurance company.
We are expecting to hear back from John Hopkins Tumor Board today with some recommendations on chemotherapy. We have also heard from Dr. Chu, a neurosurgeon at Cedar-Sinai Medical Center in Los Angeles. Once again the tumor is not surgical. This doctor was friendly and talkative but indeed stated that no neurosurgeon in the world would touch this tumor. It would cause severe neurological damage or worse to Timmy. He agreed with his current chemotherapy protocol. I guess I should just accept it now. I have heard it many times. This large tumor that does not belong in my son's head is not coming out with surgery. Chemotherapy is our one and only hope. I must believe that. I must have faith that someday chemotherapy will be what works for Timmy. "Faith is to believe what we do not see and the reward of faith is to see what we believe."
Thursday is chemo treatment #7. I hope Timmy's bloodcounts will be good so he can stay on schedule. I hope that his neurological exam will be stable. I hope we can come down on steroids (I am doubtful). I hope that the traffic will not be too terrible.
Please keep Timmy in your thoughts and prayers and I will update soon.
With Love & Faith, Susan
Friday, October 14, 2005 7:53 PM CDT
Dear Family & Friends,
It's still raining here in New Jersey. The rain yesterday made it so difficult to get to Philadelphia. We saw many car and truck accidents which created quite a bit of traffic for us on the way in.
The hospital was very busy yesterday. As usual our wait was long but everything went well. Timmy had his port accessed with no problems at all. His bloodcounts were good. It was wonderful to see Timmy's doctor again. He spent alot of time talking with us and examining Timmy. He acknowledged that Timmy's tremor has increased along with the weakness in his right leg. Based on his neurological exam, which he considered stable, he did not think an MRI was necessary right now. He could not tell us if it was tumor growth or chemo causing these changes in Timmy. What he did say was that even if an MRI showed growth right now, it is too soon to stop or change this chemo protocol. He does not want to abandon it prematurely because it could still be effective as we get near the end of this "induction period". I do understand the logic of this decision, but once again the waiting and uncertainty are so difficult. The doctor truly realizes how hard this waiting is for us, but he asked us to sit tight. He will see Timmy each week now and monitor him closely.
This was suppose to be a Vincristine week only for Timmy. Since his bloodcounts were good, the doctor decided to give him the Carboplatin too. Timmy did very well getting his chemo. It was flu shot time at the hospital, which Timmy did get yesterday too. It is very important for a child with a weakened immune system to get this. Now I just have to work on the rest of the family getting one too.
Timmy now has his Green Beret uniform. Much to Timmy's surprise and mine, Trooper Bob Shaughnessey came to Village School to present Timmy with his uniform. I was told that Timmy was so surprised and very excited. He showed everything off to his classmates. He was given an army jacket with the name Pauxtis on the pocket, pants and an official green beret that was worn by a soldier in battle. Thank you again Trooper Shaughnessey for going out of your way and making this a memorable day for him.
To Colonel Tom Herman, our family appreciates very much what you did for Timmy. Thank you for making a little boy you did not even know very happy. Just to let you know, Timmy is very proud of his green beret and showed it off to his doctor yesterday.
Thank you to Timmy's Chemo Angel Angela for always thinking of Timmy. The gifts and cards continue to surprise him and lift his spirits.
We have heard from John Hopkins in Maryland. Once again, Timmy's tumor is not considered to be surgical. They will be presenting it to their Brain Tumor Board this Tuesday with additional recommendations. After another phone call and e-mail, I have heard from a nurse at St. Judes. What she said is that Children's Hospital of Philadelphia and St. Judes both belong to the Brain Tumor Consortium and that they would do everything the same way. I appreciate her information, but, I really would have liked to hear from a doctor there and have Timmy's case presented to their Brain Tumor Board. I will continue to follow up on this.
I really do have complete confidence in our doctor at Children's Hospital. He truly is brilliant. It takes so much time and energy to pursue these other opinions, but it is something I feel needs to be done. If there is someone or something out there that can help Timmy, I just need to know.
I found a beautiful quote that I am dedicating to all my friends. "I believe that friends are quiet Angels that lift us to our feet when our wings have trouble remembering how to fly". Thank you all so much for continuing to be there for me and keeping me on my feet during these hard times.
With Love & Hope, Susan
Tuesday, October 11, 2005 7:01 PM CDT
Dear Everyone,
It was a very quiet weekend around here thanks to the very rainy weather. It's been raining for days and there's no end in sight. As much as Timmy likes to keep busy, I was happy for the quiet time we all spent together this weekend. Timmy's body is going through so much, he needs to rest and gain strength for the busy weeks ahead.
Overall Timmy is doing okay. He is tired, but has been going to school. He is easily irritated and grumpy, but he still tells me "I love you Mom" many times a day. (So it's okay to be grumpy with me :) The darn thrush just won't go away (even on medicine) and he has some sores on his lips. His arm tremor continues to worry me.
Today, Timmy started his physical and occupational therapy back up again at Bayshore Rehabilitation. He was thrilled to see all the girls again and I think they were just as happy to see him too. He was mostly re-evaluated today to determine his strengths and weaknesses. He did of course get to play baseball and hit the balls really good. For occupational therapy, Timmy needed to put pegs in and out of holes in a board. His right hand shook so much, it was so hard for him to do. It was heartbreaking for me to watch. I look forward to Timmy working very hard and rebuilding the strength in his arms and legs. I know it will make a positive difference.
Well most of you have read the message from Colonel Tom Herman, a Green Beret. Timmy's uniform is on its way and will be delivered tomorrow by our friend Trooper Bob Shaughnessey. What a thrill and honor this is for Timmy. Thank you Colonel Herman for doing this. Timmy will make you proud, he is one of the toughest soldiers I know. I will definitely take pictures and post them as soon as possible.
Thursday we are off to Children's Hospital for Timmy's 6th chemo treatment. We also have a 9:30AM appointment with Timmy's Oncologist, our first in five weeks. I am anxious for him to examine Timmy. I have many questions and will also be asking for an MRI as soon as possible. I don't know if he'll agree to one, but I know it's the only way to get definitive answers to whats been going on with Timmy.
I ask everyone, please support cancer research and help find a cure for childhood cancer. I have seen too many children fighting this battle. I have seen too many parent's going through the same heartache as our family. There are so many pioneering treatments out there. It takes support to make a difference. Any organization of your choice. We must protect our children, our children's children and find a cure! Thanks for listening.
As always, please keep Timmy in your thoughts and prayers and I will update soon.
With love, thanks and hope. Susan
Friday, October 7, 2005 7:50 PM CDT
Hi Everyone,
Chemo treatment #5 is complete and Timmy did great. It was a good day where everything moved along very quickly for a change.
Timmy gained only 1/2 pound and is now 4ft-71/2inches tall. He has grown two inches this past year! The nurse who accessed Timmy's port did a fantastic job and his blood was drawn quickly.
Timmy got a lot of attention at his check-up. Two nurse practitioners and a wonderful woman neuro-oncologist all spent alot time with us and examining Timmy. Allow me to brag a little about my son. Timmy was told by each of these women that he had the most beautiful blue eyes and long eyelashes. They asked Timmy if he hears this alot and he nonchalantly said "Yeah". He could care less. We all laughed at the innocence of a little boy. I said that when he's older, he will probably use those baby blues to get all the girls! It was a special, happy thought for me.
As for Timmy's right-sided weakness, it was obvious to everyone that he is slightly weaker. He does have more difficulty walking and his arm tremor has increased. Because of this, they will not be lowering his steroids. His increased weakness could be from long-term steroid use. It has a bad effect on the proximal muscles. Chemo is definitely causing him increased fatigue and weakening him. It could possibly be the tumor, but we did not discuss this in front of Timmy. Hopefully just five more weeks and another MRI will be done. Timmy's bloodcounts were low, but good enough to go ahead with chemo. The Vincristine was ordered and given very quickly and we amazingly were out of there in about 3 hours.
I had known ahead of time that our friends from our radiation days, Gracie (now 7 yrs old and healthy) and her Mom and Dad had an appointment the same day. We made arrangements to meet Kelley, Chris and their daughter Gracie Jo (Kelley also from our radiation days) for lunch. We all went to the cafeteria together and had such a great time. We have all been through so much together and we all understand the battle, the hope and the fears. It was so good to see all of you again. Our visit really lifted my spirits.
Timmy has been fitted for an orthotic foot brace (it will be made of some type of plastic and velcro) for his right leg. His physical therapist at school suggested that it would be helpful for Timmy. It will help stabilize his leg better. It will keep his toes lifted so his foot does not hit the floor so hard. It should help him walk better. The orthotics company actually came to the school and fitted Timmy during his physical therapy session. Timmy got to pick a design to go on the brace. Of course it will be army camoflauge.
I have decided to start Timmy back up with some physical and occupational therapy at Bayshore Rehabilitation again. I thought the school therapy would be enough, but it's not. Timmy is so excited about going back and seeing all his friends again. He really misses you alot Jen, Jyo and Jane! Get the bat and ball ready and we will see you on Tuesday.
A good friend sent this to me today. I think it's so special and I would like share it with all my friends and wonderful Moms out there. Thank you Jane!
"My Angel"
A baby asked God, "They tell me you are sending me to earth tomorrow, but how am I going to live there being so small and helpless?"
God said, "Your angel will be waiting for you and will take care of you"
The child further inquired, "But tell me, here in heaven I don't have to do anything but sing and smile to be happy."
God said, "Your angel will sing for you and will also smile for you, and you will feel your angel's love and be very happy."
Again the child asked, "And how am I going to be able to understand when people talk to me if I don't know the language?"
God said, "Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak."
"And what am I going to do when I want to talk to you?"
God said, "Your angel will place your hands together and will teach you how to pray."
"Who will protect me?"
God said, "Your angel will defend you even if it means risking its life."
"But I will always be sad because I will not see you anymore."
God said, "Your angel will talk to you about me and I will always be next to you."
At that moment there was much peace in Heaven, but voices from Earth could be heard and the child asked, "God, if I am to leave now, please tell me my angel's name?"
"You will simply call her, "Mom."
I will update soon. With Love & Hope, Susan
Tuesday, October 4, 2005 4:00 PM CDT
Dear Family & Friends,
I have had a hard time coming to Timmy's website to update today. I have been worried lately, watching changes in Timmy that I hope are just chemo related and not anything else. I want to try to be positive when I do my updates, but I am watching my son struggle and it hurts.
Timmy's weekend was good. He got to play with two of his friends, which always makes him happy. He is so very tired and it shows in his walking and his arm tremor. He has a hard time climbing up stairs again. He needs to pull himself up. He has been irritable and does not like to be touched. He has yelled at all of us a few times. I notice that his beautiful blue eyes are dark, he looks so weak and tired. I am sure this new chemo is responsible for alot of this. I just wish I knew what was going on in his head.
Timmy went to school the last two days. I am continually told by his teachers and aide that he thrives in school. I am so glad he has this escape and hope he continues to be able to go and be happy.
On Monday, Timmy's 2nd grade teacher, Susan Gibadlo had arranged to come over after school and take Timmy out. Timmy has always loved her red convertible car. Susan picked Timmy up and took him for a visit to the library and then for dinner at McDonalds. Thank you Susan for doing this with Timmy. He had a blast! (see new picture)
Back in late August, when we found out that the tumor was growing again, Jay, Andrew and I started searching again for other treatments. We searched for doctors, hospitals, clinical trials and even looked at different radiation treatments. I need a plan. I need a next step. I need to know what could possibly be out there that may help Timmy. Gamma-knife, proton beam radiation are all radiation no matter how it is delivered. Timmy has had his maximum cranial radiation. That will never be it. We have a cover letter made up with Timmy's complete brain tumor medical history. We have made multiple copies of his latest MRI. Copies of these have been sent to Boston Children's Hospital, John Hopkins and Cedars-Sinai Medical Center in Los Angeles. All of these are major brain tumor centers with some brilliant Oncologists and Neurosurgeons. Phone calls were made to Duke University in North Carolina and St. Judes.
We have heard from Boston Children's. They completely agree with everything Children's Hospital of Philadelphia is doing. The treatment Timmy is receiving would be exactly what they would have done and do. This wonderful doctor ended our phone call with "Never, Ever Give Up Hope". We are still waiting to hear from John Hopkins and Cedars-Sinai. Duke University said we must make an appointment to come and see them. They do a lot of clinical trials down there so they may be a "next step" someday. I hate to be harsh about St. Judes but two phone calls have never been returned.
Being at this place, in between MRI's and on a new treatment is very hard for all of us. I hope and pray that this new chemo will at least stabilize this tumor.
As usual, we are off to Children's Hospital on Thursday. We will meet with the nurse practitioner again. We finally have an appointment with Timmy's Neuro-Oncologist next Thursday, Oct.13th at 9:30AM. Seeing him usually calms me and settles my fears. It will be great to check in with him again.
Timmy's chemo will be different this time. He will only get the Vincristine which is pushed from a syringe right through his port. Carboplatin brings your blood counts very low, so he gets a break from it for two weeks. Just getting the one chemo will save us an hour or so and we should beat the rush hour traffic for the ride home.
I am sending love, hugs and many thank you's to all our friends and family. There are too many names to mention. Our family appreciates each and everyone of you and all you continue to do for Timmy and our family.
I will update soon.
Love, Susan
Friday, September 30, 2005 5:25 PM CDT
Dear Everyone,
Thankfully, Timmys visit to Children's Hospital went very well yesterday, and chemo treatment #4 is now complete. We started with our quickest stop in Triage where I learned Timmy had gained no weight this week. Good news, for we have been watching what he is eating. Next the port access, not as easy as last week. The nurse got the needle in and no blood. It took a few minutes of trying different tricks and finally an extra pair of hands from another nurse to get the blood. Thank goodness Timmy's skin was numb from the lidocaine cream and he did not feel a thing.
Our visit once again was with the nurse practitioner. I found out Timmy's doctor is away on some kind of sabbatical. He is a biking enthusiast and is biking across most of the country to raise money for brain tumor research. I don't know how these Pediatric Oncologist's do what they do. I know they save many lives but I am sure they see their share of heartache also. I am sure they just need to clear their minds and get away from it for awhile. Most of the Oncologists I have met at Children's Hospital are compassionate and deeply dedicated.
Timmy's exam was again stable or slightly improved. I have been concerned with Timmy's right-sided weakness, especially the arm tremor. The nurse did not think it has changed. Timmy's doctor once said that he only see's a small part in Timmy's day when he examines him and Timmy is always on his best behavior. I am with my child all the time and I know him best. The fatigue from the chemo may be causing this tremor. I hope that's all it is. We are dropping his steroids again in the hope of getting him off them again. Timmy has thrush, common in chemo. We were given medication for this. Timmy's bloodcounts were low, but good enough to get his chemotherapy. I am glad he is staying on schedule during what they call his "induction" period. Chemo went well, no problems at all.
We leave Philadelphia at such a bad time.(RUSH HOUR!!) It is such a long ride home.
Timmy slept 11 hours last night. I noticed he was losing some hair this morning. I hope it does not get too bad. He was very tired today, but wanted to go to school this afternoon.
I recently heard from a few of Timmy's NJ State Trooper friends that a visit to Fort Dix is being planned for the near future. They want Timmy to be able to do everything he would have done at Fort Hood in October. I will keep everyone updated on that.
As always, please keep Timmy in your thoughts and prayers and have a great weekend.
Love, Susan
Tuesday, September 27, 2005 8:10 AM CDT
Good Morning Everyone,
It's a beautiful, breezy Fall morning here in New Jersey. I just got back from dropping Timmy off at school. Today, I watched from the car as he walked down the school hallway and into his classroom. As he entered the classroom a big smile came to his face. He just loves to be there. That smile made me so happy and then made me cry. It was a happy cry though because it became a special moment to remember.
School continues to go well. Timmy goes half days everyday except Thursdays. We do homework everynight and are hopefully keeping up some. I want Timmy to keep writing, keep thinking. I want to keep control away from this horrible brain tumor. I hope that by using his mind, exercising his arms and legs and eating healthy, we can keep him strong. I want him to be as strong as he can be in the battle against this cancer.
Timmy had a good weekend. He was very tired and quiet. I have noticed that the first few days after his chemo, his right side becomes weaker. His right arm has gone from a hand tremor to arm tremor. Sometimes he has to grab his right arm to stop it from tremoring. I do hope it is just the effects from the chemo, because it does make me worry. Otherwise Timmy is handling this new chemo protocol well. Also, all the bandages are off from the port surgery. You can't even notice it in his chest.
Timmy got a very special gift this weekend. My friends son, Ryan Puck is junior at Plymouth State University in New Hampshire. Ryan is a Defensive Back on their football team there. Ryan, along with Plymouth State Coach Paul Castonia, and the entire team put a box of great things together for Timmy. He got a football autographed by the entire team. He also got a picture of the entire team holding a STAY STRONG sign. Ryan also gave Timmy his Plymouth #27 jersey along with a cap. This was such an incredible group effort that was put together to make Timmy happy. Thank you Ryan for doing this for Timmy. You did make him very happy. He is carrying that football with him everywhere he goes!
On Thursday, Jay, Timmy and I will be going to Children's Hospital for chemo treatment #4. I hope Timmy's bloodcounts will be good so he can get his treatment. I know it will be another long day, but this is the way it is just going to be. I have not booked Timmy's next MRI but I estimate it will be during the second week of November. The waiting and not knowing is always so difficult, but we continue to stay strong and hope for our miracle.
I will update soon.
With Love & Thanks, Susan
Friday, September 23, 2005 9:19 PM CDT
Dear Family & Friends,
Another very long day at Children's Hospital yesterday and Timmy's third chemo treatment went very well.
I must say that I have an amazing little boy. Timmy continues to be strong, determined and tough. All of his State Trooper friends would be so proud of him. We are proud of him too. He did everything he had to do yesterday and never complained.
We left the house at 8AM for our 10AM appointment at the hospital. At our first stop in Triage, I found out that Timmy has gained two pounds in one week. Oh those evil steroids, he has been so hungry lately. Next came the first official accessing of his port for his bloodcounts. The nurse cleaned off his skin and prepared the needle. She then had me hold Timmy's shoulders back, just in case he moved. She counted to three and then pushed the needle into the port. Timmy did not move, he did not make a sound. He said he did not feel a thing! I was so happy and so was Timmy. I think I was more worried then him. I also believe the lidocaine cream is remarkable and really numbed the area.
We found out after a while that Timmy's bloodcounts are low, but good enough to get his chemotherapy.
Next we met with the nurse practitioner (Timmy's doctor is away for three weeks). She did a good neurological exam and found the strength in Timmy's arms and legs to be good, even improved. Because she thinks he is stable we will continue to wean him off the steroids again. After the exam the chemo drugs were ordered. There is always so much wait time in between everything. It adds so much time on to the day.
A very special friend came down to the hospital to visit and have lunch with me and Timmy yesterday. Kelley is a wonderful, caring and strong young woman we were lucky to meet while Timmy was undergoing radiation. Kelley was also having radiation at the same time. Kelley always cared about everyone else so much. She listened, supported and gave us all positive, healing thoughts each day. Her wonderful husband Chris was always by her side. Kelley is a brain tumor "survivor" who today is beautiful and healthy. It was so good to see you Kelley and meet your precious daughter Gracie Jo. Thank you for our gifts and for caring enough to come visit us.
After lunch it was time to go back to the Day Hospital to start chemo. Timmy took his chair, turned on the TV and had his drugs administered. Once again, Timmy got through his chemo with no problems. We left the hospital at 4PM just in time for some rush hour traffic and were home by 6PM.
Much love and thanks to my brother Tom for driving us and being there for us all day yesterday. You are the best!
Timmy was very tired and pale this morning. He was up early and insisted on going to school. I managed to talk him into resting this morning and then go to school this afternoon. I really needed to see how he was feeling. He was very tired but pushed himself, determined to go to school. It really amazes me how important school and his friends have become to him.
Well I am very tired tonight. I was told by one of the nurses yesterday that I need to eat better and get some more sleep. Well it's true, but so difficult to do. The stress and worrying have gotten to me. But I will be okay, because no matter what, I will always do what I need to do for Timmy.
Once again, thank you so much to everyone for caring so much for Timmy. All the love, support and encouragement shown to our family in so many ways means alot to us.
As always, please keep Timmy in your thoughts and prayers and I will update soon.
Goodnight, Susan
Tuesday, September 20, 2005 8:16 PM CDT
Hello Everyone,
It was a good weekend for all of us around here. Timmy's side-effects from the chemo have not been too bad. He had the usual fatigue and increased right-sided weakness (very shakey in the arm and just a little harder to walk) but none of the dreaded side-effects we were warned about. The first ten weeks are the most aggressive part of the chemo. The chemo is cumulative and the side-effects can appear somewhere down the road. It is such a hard way to live, wondering how sick your child will get from these treatments each time.
As for the port, (which was put under the skin on the right side of Timmy's chest, between the nipple and collar bone) Timmy has not complained about it at all. I have not seen or felt it yet because it is bandaged, but on Thursday it will be accessed for the first time. Each Thursday morning, before we leave for the hospital, I must put LMX4 cream on the port. It has lidocaine in it to numb the area. There is a special needle they put into the port with a tube attached to it. I hope Timmy's first poke will go well. I think it should, he has been through much worse.
On Sunday, we were invited to a Make-A-Wish Family Cookout at the Bristol-Myers Recreation Area in New Brunswick. Timmy, Jay and I went and had a great time. There was catered food, music, magic, balloon makers, crafts and so much more. Timmy loves rock and roll music and was singing along with the music. He was happy and feeling good and that was just so good to see. It was one of those special moments where Timmy was like my old silly Timmy. There were no worries, there were no fears. It was wonderful! I have posted two new pictures from the day.
School has been very good these last two days. Timmy continues to go for just half-days. He still looks forward to going each day. I can see that sometimes he is tired, but he pushes himself to go. I love that school is making him so happy. It is truly the best medicine for him.
On Thursday we are off to Children's Hospital for the 3rd chemo treatment. Our appointment is for 10AM each Thursday. Timmy's Uncle Tom will be taking us this time. My brother adores Timmy and makes him laugh all the time. Timmy is looking forward to our day together. Hopefully, it won't be another long, busy day in Oncology.
A very special thank you to Mrs. Kelley for the Lego's and chocolates you sent Timmy. He loves them both. Thank you for thinking of him again. Many thanks to Timmy's Chemo Angels, Angela, Colleen and Sandie. These wonderful women make sure our mailbox is filled with cards and small gifts for Timmy each week. There are so many Angels in Timmy's life. Our family and friends, our school community, you all give Timmy so much all the time. Thank you for all you do. I will update soon.
With Love & Thanks, Susan
Friday, September 16, 2005 8:16 PM CDT
Dear Family & Friends,
Just a quick update to let everyone know that Timmy's port surgery and second chemo treatment went well yesterday.
This was probably one of our longest outpatient days at Children's Hospital. We started at 8AM in Radiology where Timmy changed into a hospital gown. A doctor gave him a good physical and his IV for sedation was started. At about 9:45AM Timmy was wheeled into the room where the port procedure was performed. Timmy was so nervous, his cheeks were bright red. I know he wanted to cry, but he didn't. This is the second time I have had to send my child into surgery and it is so hard to let him go.
The procedure took about 90 minutes, 30 minutes longer then I expected. When they were finished and brought Timmy out, he was curled up into a ball, sleeping very peacefully on the stretcher. Everything went well, no problems at all. Timmy woke up very groggy about 90 minutes later. We then got him dressed and into a wheelchair and made our way to the Oncology Floor.
For the first time Timmy had his blood drawn from his new port. It was so fast and painless. We waited forever to see the nurse practitioner, it was an incredibly busy day. The nurse was unable to do an accurate neurological exam because Timmy was just too sleepy. Since Timmy's symptoms seem to be stable, we were told to drop his steroids by 1 mg. Timmy's bloodcounts were very good so the chemo drugs were ordered from the Pharmacy. It took about an hour before the chemo drugs arrived.
Timmy started his chemo at about 4:30PM. The Vincristine was pushed through the port with a syringe. The Zofran and Carboplatin were given by an IV drip through his port, which took about one hour. About a half hour into his treatment Timmy took a look at both his arms, not seeing an IV he said to us "whats taking so long, when are they going to start my chemo?" We told him that he was getting his chemo through his port. It was like he just got it, he understood, no more needles. The chemo was being delivered through the port. I think he likes this idea and will get use to it. Timmy got through his second chemo treatment with no problems.
We left the hospital just after 6PM. We ran into a lot of rush hour traffic and didn't get home until 8:30PM. Thankfully, Timmy slept all the way home.
Today, Timmy is a little sore where his port was put in. He is weak, tired and a bit grumpy with his mom. I hope that he feels better and gets stronger over the weekend. He really looks forward to going back to school on Monday.
Thanks for all the wonderful messages. I read them to Timmy every day and they always make him laugh or put a big smile on his face. He feels very special knowing people are thinking about him.
Love, Susan
Tuesday, September 13, 2005 2:53 PM CDT
Dear Everyone,
Thanks to the beautiful New Jersey weather, our family was able to have a quiet, relaxing weekend. We took Timmy over to the Twin Light's Lighthouse, which overlooks Sandy Hook bay and the Atlantic Ocean. We watched all the boats, para-sailers and people enjoying their last days of summer fun in the ocean.
On Sunday, we went to Monmouth Executive Airport for a few hours to watch Jason land his plane, and complete his checkride,(the final FAA oral and flight test) for his private pilot's license. After two years and about 80 hours of flight time, my 17 year old son has a license to fly a small plane. He is so happy and we are so proud of him!
My 20 year old son Andrew is now a junior at Quinnipiac University in Connecticut. He has settled in well and is enjoying his classes. He is pursuing a degree in Communications. He constantly does research on Timmy's brain tumor. He emails me with new information all the time. He is looking for treatments, especially new ones that will help his brother Timmy. Thank you Andrew!
Timmy has been going to school from 9AM to 1PM so far and is enjoying school and doing well. The school has been wonderful to him, taking care of all his needs. It was felt that for Timmy's safety (especially walking, he is quite unsteady) that he would need a para professional. A wonderful, caring mom named Susan was hired to help Timmy, when he needs help, and just keep that extra eye on him to keep him safe.
Thank you Beth Bournias, our school principal, who has given Timmy everything he needs. Thank you for those daily 11AM phone calls to let me know how Timmy is doing. There are so many teachers, aides and moms in the school looking out for Timmy. I send my deepest, sincere thanks to all of you for taking care of my son.
Timmy is feeling good. The chemo made him weak and shaky this weekend. Unfortunately he is starting to get those puffy steroid cheeks and belly back again. His appetite has definitely increased. Timmy will never admit to feeling sick. He always tells me "I'm fine Mom, I'm fine". Its seems we have made it through the first week of the new chemotherapy.
On Thursday morning, we need to be at the Interventional Radiology Department in Children's Hospital at 8AM. Timmy is scheduled for 9AM port surgery. Timmy will receive heavy sedation and when he wakes up he will be taken to the Oncology Day Stay area where he will get his second chemo treatment. Timmy knows he is getting the port surgery. He has listened to me talk about it, but does not want to talk about it anymore. He tells me "it makes me worry". Too many worries for a nine year old boy. I reassured him that we would be there and take such good care of him. I think now is the time for some extra cheering up notes or cards please.
We are heading into Philadelphia tomorrow night. It is so much easier doing it this way. We don't have to get up so early in the morning and drive a long way in traffic.
Well, I have been reading alot about miracles lately. I believe they can happen. They have happened before and we need one to happen now. We have all been praying for one, right? I think it's just about time to show the Pauxtis family that miracles can happen!
I will do my best to update everyone by Friday.
With Love & Thanks, Susan
WE ARE SENDING LOTS OF LOVE TO GRANDMA PAUXTIS WHO IS RECOVERING WELL FROM HER STROKE OUT IN CALIFORNIA.
Friday, September 9, 2005 2:44 PM CDT
Hi Everyone,
As I write this update, Timmy is in school.(Yeah, he was feeling pretty good this morning!) He got through his first round of the new chemo-protocol yesterday very well.
We arrived at Children's Hospital at 9AM yesterday. We met with Timmy's Oncologist and he spent a lot of time with us going over the new treatment plan. First off, Timmy will have a "port" implanted under the skin in his chest wall. This "port" will enable the nurses to draw blood and infuse chemo drugs. The doctor also spoke to us about the chemos Vincristine and Carboplatin, their side-effects and the statistics on how they have worked. He was part of the team that developed this for clinical trial over ten years ago. The chemo is aggressive and it has been successful in shrinking and stabilizing some tumors. Of course, as we were told, each tumor reacts differently, but we felt and hoped that the statistics were in our favor. That made me feel a little more encouraged with this new protocol. I also asked for more frequent MRI's so we could see if the chemo was working. The most aggressive part of the schedule is the first ten weeks. The doctor said we must give the chemo at least that much time to see if it is working, before we do an MRI.
Timmy's doctor gave him a good neurological exam. He found his strength to be good. Timmy's tumor is having an effect on his body though. He still has the arm tremor, his right leg is so heavy when he walks, it also turns out a little. His memory is not very good at all. The doctor still decided to lower his steroids, just 1 mg.
Next it was time for Timmy to get his IV. Well, we got the nurse from hell who stuck Timmy many times in his hands to try to find a good vein. I know Timmy's veins are not good because of the steroids, but a half hour to get a vein! Timmy turned white, his eyes rolled in the back of his head and he looked like he was going to pass out. I told him to cry, just cry, and he did, alot and that helped him get through it. Timmy thinks he must always be brave but between learning about the "port" surgery and the needle sticks, it was just too much. It's time for Timmy to get it all out and cry!
Once the IV was in place we were taken to the Day Stay Hospital area where chemo is done. This is a room set up with big chairs and your own television set. We met our nurses and they explained every step of the way what they were doing and giving to Timmy. First it was the Vincristine which is given directly into the IV by a syringe. It was very quick. Next was the Carboplatin and Zofran (nausea medication) which took just a little over an hour to infuse in. They watched him carefully while the Carboplatin was infused because many children have reactions to it. Timmy breezed through both chemos with no problems.
It is not set up yet, but it is most likely that Timmy will have his "port" surgery next Thursday morning. After he wakes up, he will have his chemo later in the day. We will most likely have to go to Philadelphia the night before.
We are all mentally and physically exhausted around here. We look forward to a quiet weekend with our family.
Also, I spoke to Make-A-Wish and I put Timmy's trip to Fort Hood on hold. Chemo once a week and than maintenance chemo, I just don't see being able to go right now. We even have the option of changing the wish too, somewhere down the road.
Many thanks for all the love, support and prayers. Please keep them coming. I will update soon.
Love, Susan
Wednesday, September 7, 2005 12:27 AM CDT
Dear Family & Friends,
Our brain tumor journey has taken another turn. Late yesterday evening we received a phone call from Timmy's Oncologist telling us that the "Lapatinib" Clinical Trial has been temporarily closed. A child had a very toxic reaction to the drug and until they find out why, they are not accepting new patients. After all the research and heartwrenching decision-making this ray of hope, our possible "miracle" has been taken away from us.
Timmy's doctor wants to place him on another "standard" chemotherapy protocol of Carboplatin and Vincristine. The two drugs have been around for many years and have been effective in shrinking/stabilizing tumors. The problem with these drugs are they will make Timmy very sick, with side-effects that are terrifying. They would be administered intravenously once a week over a ten week period. We would need to travel to Children's Hospital once a week for treatments.
We have major decisions to make because Timmy's first treatment is scheduled for tomorrow morning. Timmy's doctor wants to start treatment right away because the tumor is growing. He also stated that we would still be able to enter a clinical trial down the road because this trial had difficulties.
We are waiting for return phone calls from the doctor or his nurses to answer many more questions that we have. This is such a difficult time. There really is no time and I am forcing myself to trust and have faith in Timmy's doctor's choices. I will update everyone as soon as I have more information.
One of the greatest things that have happened around here in a long time was Timmy's first day of school. He had a wonderful day, staying till 1PM. Everyone was so happy to see him, he felt like a superstar. He also stayed until 1PM today and had another wonderful day. His teachers told me his is doing very well. Being back in school is the best medicine for him. I love seeing him so happy and doing "normal" things again. I hope that he will be able to continue to go back as often as possible because I want him to be happy.
It is always so difficult writing the bad news. I wish so much that I always had good news to share. I know so many of you share in our pain and I am so sorry for that. Maybe the Clinical Trial was just not meant to be for some reason. Maybe something good will come from this change. I need to believe that.
Please continue to keep Timmy and our family in your thoughts and prayers. They are so needed right now.
With Love & Thanks, Susan
Sunday, September 4, 2005 9:50 PM CDT
Dear Everyone,
The reality of the past week has hit our whole family very hard. We know we have a tough battle ahead of us. Our emotions constantly change from fear, to hope, to uncertainty. Just when I thought I could not possibly hurt or cry anymore, the pain goes deeper and the tears flood from my eyes. I am so tired of waiting. I want and need to do something now. It's imperative that we start treatment soon. I love my son with all my heart. He is a beautiful gift that was given to me later on in my life. He has changed me. He has made me a better person with the love he has given me. I have learned so much from Timmy. I have learned about strength, courage, faith, sensitivity, kindness, innocence and genuine love.
On Thursday night we took Timmy to Children's Hospital for his MRI. We arrived at 6PM. The MRI was scheduled for 7:30PM but luckily Timmy got his IV and was on the table a little after 6:30 PM. Jay always goes in the room with him and sits in a rocking chair nearby. We were told that this would be a routine brain MRI beforehand, usually about 50 minutes long. Much to my surprise and annoyance, the MRI took 1 1/2 hours! The doctor also ordered a Spectroscopy and additional studies for the start of the clinical trial. Timmy layed in the MRI machine for the whole 1 1/2 hours without moving or any complaints. When the test was finally done and Timmy came out of the room, he looked totally shell-shocked. He was dazed and quite shaky. After the IV was removed, we dressed him, put him in a wheelchair and took him to McDonalds. Yes, they have a McDonalds in the hospital. Thankfully he slept all the way home.
This past Friday morning I had a meeting with all of Timmy's teachers at Middletown Village School to discuss school re-entry. Timmy will only be able to return to school on a limited basis(hopefully half days). He wants to go back, he is determined to go back to school. He misses all his friends so much. I want to try to make this work for him and give him some kind of "normalcy" back in his life.
I was overwhelmed with the support, deep concern and caring from all the teachers that attended this meeting. I feel confident that the Middletown Village School community will take great care of Timmy while he is in school and I cannot be with him.
My heartfelt thanks to Beth Bournias, Eileen Buonocore, Peggy Bauer, Judi Cetnar, Kerry Hill, Sharon Krellin, Monica Conrad, Kathy Roberts, Pat Pascale and my dear friend Sue Griffin. Thank you for helping me and working with me to make Timmy's re-entry into school the best that it can be.
I have a wonderful friend, Maryalice Castaner, who is so deeply connected to me and Timmy and all that we are going through. Maryalice knew that Timmy and I needed to be with friends, laugh and just get off the emotional roller-coaster ride for a while. Maryalice invited many of Timmy's and my friends over to her house Friday night for pizza, snacks, desserts and drinks. The best part of the night was the laughter. These girls made me laugh and forget the sadness for a few hours. Timmy had so much fun with all his friends. They are all so kind and good to him. He was totally exhausted by the end of the evening from having such a great time. Thank you Maryalice and all the special friends in my life for being there for us.
After much research and thought we are choosing to go ahead with a Clinical Trial Study of "Lapatinib". This trial is being conducted at many of the major Children's Hospitals in the country. I found the protocol on the St. Jude's website. I have included the link to it below if anyone would like to read up on it. It is just too much information for me to explain.
Children's Hospital wanted us there on Tuesday to start all the pre-clinical trial testing. Tuesday is also the first day of school. Everyone involved thought it was important for Timmy to start the first day of school. I agree! We will go to Children's Hospital on Wednesday. We will get all the testing done and hopefully start chemotherapy right away.
Thank you so much to everyone for all the messages, cards, phone calls and e-mails that you have sent. I apologize for not answering everyone, but please know that I do gain so much strength from your kind and encouraging words.
Please continue to pray for Timmy. Please pray for "Lapatinib" to be the one chemo that will work for Timmy. I will update soon.
With Love & Thanks, Susan
.
Wednesday, August 31, 2005 4:02 PM CDT
To Our Family and Friends,
The news continues to not be good. Jay and I met with Timmy's doctor alone yesterday to look over his MRI scans and to discuss the findings and treatments.
Timmy's tumor is indeed 20 percent larger and may be continuing to grow. His chemo has failed him. We spoke of possibilities. No more radiation, he has had the maximum cranial radiation. "CED" convection-enhanced delivery which delivers chemo directly into the brain, via small tubes, has only been used on adults. (I researched this one). New chemo drugs, clinical trials. Surgery is not possible, still to diffused and infiltrative. Three choices were presented to us.
1. Do nothing and make Timmy comfortable and pain free.
(This almost made me throw up!) He said he had to
offer this one.
2. More standard chemotherapy treatments.
3. Clinical trials. Lapatinib, or Cloretazine given
orally or intravenously. They show promise in phase 2
clinical trials for slowing down or stabilizing tumor
growth.
It seems if you do two standard treatments in a row you will be ineligible to participate in a clinical trial. You can always come back to standard treatments if a clinical trial fails.
Jay and I have chosen to enter Timmy in a clinical trial. We choose the hope of new drugs to help Timmy. The clinical trial will take place at Children's Hospital. Many more details will be given to us very soon plus consent forms.
We are searching the internet for other clinical trials that offer hope and welcome any suggestions or ideas. The emotional burden of making a choice is unbearable. We must move quickly. Timmy will be having another MRI this Thursday at 7:30pm at Children's Hospital. The hope is to start the clinical trial next week.
Timmy's doctor spoke with him and told him his medications were not working and we would be changing them. Timmy's face was filled with worry as he looked to me, his mom, for reassurance. I smiled at him and told him it would be okay.
Timmy is also now back on Decadron (steroid) 2mg, two times a day to help with his right-sided weakness and hopefully help him think and speak clearer.
It has only been 9 months since we have begun the battle with the monster growing inside Timmy's head. Timmy is strong, Timmy's spirit has not been broken. We choose to continue, fight and hope for our miracle.
I will update as the information comes in. Please, as always keep Timmy in your thoughts and prayers.
Love, Susan & Family
"Even miracles take time"
"Where there is great love there are always miracles"
"Miracles happen to those who believe in them"
"The child must know he is a miracle, that since the
beginning of the world there hasn't been, and until the
end of the world there will not be another child like him"
"Out of difficulties grow miracles"
Saturday, August 27, 2005 6:48 PM CDT
To Our Family and Friends,
It has been a very long week filled with heartache and fear. The little news we do have is not good. Timmy's doctor has been on vacation this week, and the information we have gotten is from the nurse practitioner. Besides the original tumor increasing about 20 percent in size, it is also growing in the direction of the frontal lobe. Also noted are increased swelling and areas of necrosis. We must also watch out for hydrocephalus. The tumor has affected the ventricles and we must carefully watch Timmy for drowsiness, headache and vomiting. If a ventricle becomes blocked, Timmy will need to have a shunt put in.
We have an appointment this Tuesday at Children's Hospital with Timmy's doctor. This appointment cannot come fast enough! I am hopeful that the doctor will give us something good to hold on to. I need to know what the next step will be. I need to do something. Timmy would not have been able to start another chemotherapy again until his blood counts have recovered. Hopefully by next week his bloodcounts will be good. Hopefully there is a clinical trial or a new drug or combination of drugs that will stop this tumor from growing. I am not even sure how clinical trials work, or if they would be at Children's Hospital. I would travel anywhere if I had to. I have so many questions that I need answers to.
Timmy is in good spirits. He has continued right-sided weakness (arm and leg). His speech is somewhat slurry lately. The biggest change I notice is in his thought processing. He says "what" alot so that I must repeat myself. His memory is not good also. The physical changes were hard enough but these new ones frighten me.
On Monday, Timmy went to Yankee Stadium to watch the Yankees warm up and have batting practice. Troopers Bob Shaughnessy and Trooper Brian (so sorry I forgot your last name) of the New Jersey State Police took Timmy, his friend Anthony, myself, and my son Jason there for the afternoon. Timmy got to see most of the players come in. We saw Derek Jeter, Alex Rodriguez, Hidecki Matsui, Tino Martinez and Bernie Williams. Timmy was allowed to go into the Yankee dug out where he met and got an autographed baseball from Alex Rodriguez. He also got a picture with and autograph from Bernie Williams too. Thank you so much Troopers Bob and Brian for taking the time (and it did take alot of time to plan this) and for doing something so special and exciting for Timmy. It will be a day we will all remember! I will post some pictures soon.
I would just like to mention that we have not told Timmy anything about his tumor coming back. When I get more information, and I know exactly what he will need to do, I will tell him. To my friends, please do not say anything to your children. I would like to be the one to tell Timmy when the time is right.
Thank you once again to all our friends and family for your constant support, love and just being there when we need you. Thank you Maryalice, Sue, Maryann, Vivian, MaryPat, Jane and so many others for holding me up when I feel like I am falling down. A special thank you to an old dear friend Lisa and her daughter Sami who have been so good to me and Timmy. Sami, Timmy loves his military build-a-bear. What a wonderful surprise. Thank you for putting a smile on his face!
I think Tuesday's meeting with Timmy's doctor will be the hardest one ever. Please continue to pray for that miracle that will bring Timmy back to all of us.
We are sending our love to Timmy's grandmother Patricia Pauxtis. She suffered a stroke last week and is in intensive care in a hospital in California. Please keep her in your thoughts and prayers too.
I will update with more information next week.
With Love and Thanks, Susan & Family
Monday, August 22, 2005 9:38 PM CDT
Dear Everyone,
As many of you know already, the official MRI report is not good. Timmy's tumor is not stable. Timmy's tumor has grown back almost 20 percent. This is so hard to write and almost impossible to believe. We are numb and we are hurting.
Timmy's doctor calls it Temador failure. The miracle drug that was suppose to stop and shrink this tumor has not worked. The radiation was what most likely shrunk Timmy's tumor and he will not be able to have radiation again.
Timmy's case has been submitted to "data managers" at Children's Hospital. Their job is to research alternative protocols (also called clinical trials) that may be available to treat Timmy's tumor.
In the meantime we wait, cry, hope and pray for a miracle drug that will give Timmy a chance to live.
That's all I can write tonight. I will update soon.
Love, Susan
Thursday, August 18, 2005 9:00 PM CDT
Dear Family and Friends,
The tumor seems stable.
This is the best information we could get today from Timmy's doctor. The computer server that allows the radiologist to compare yesterdays MRI with May's MRI was down. No report has been written yet.
Of all the things I expected to hear, this was certainly not one of them. Timmy's doctor did review the current MRI with the Radiologist before speaking with us. Both being very familiar with Timmy's tumor agreed it seemed stable.
Timmy's doctor asked us to "sit tight" and hopefully they will have a more definitive answer by tomorrow or Monday. I will let everyone know as soon as I hear anything.
This is disappointing, but I will hold onto the fact that the tumor has not aggressively spread. There were no signs of fluid build-up causing hydrocephalus (this can always be a problem with brain tumors.) The doctor seemed confident enough that the tumor was stable.
We are all quite exhausted tonight. All the anxiety from all the waiting, just wears you out.
Thank you everyone for your prayers, love and concern for Timmy. He was just great these last two days. We love him so much and are so proud of him.
Love, Susan & Family
Friday, August 12, 2005 9:14 PM CDT
Hi Everyone,
Round #6 of chemotherapy is finished. Timmy did very well the first five days, but had it rough these last two days. Fatigue, increased right-sided weakness and some vomiting have hit him. Timmy is so brave about everything, but not the vomiting. It is the only part of all of this that he truly hates. He cries so much and it breaks my heart to see him so upset.
Timmy had his tutoring every day this week, plus two days of physical therapy. Thank you Mrs. Lettieri, Mrs. Gibadlo and Mrs. Silverstein for being so kind and understanding when he is not feeling well. Timmy also had some friends over to visit and went to see Charlie and the Chocolate Factory. He did push himself all week. I love his incredible spirit!
Timmy has been adopted by a Chemo Angel. Chemo Angels are volunteers dedicated to adding sunshine to the lives of anyone undergoing treatment for cancer. Hello and welcome to Angel Angela! Timmy received your card, letter and stickers today. Thank you for coming into Timmy's life. I know he will love the cards and goodies you will mail to him from time to time. This is a very special organization made up of wonderful people. Check out their website at www.chemoangels.com
Thank you so much to Mrs. Kelley for thinking of Timmy again. He received your gift and card today. He loves the Garfield books but especially the candy you always send him.
Some upcoming events for Timmy are: A visit from the NJSP Motorcycle Unit on Tuesday. A Yankee game on Monday, August 22nd. We have not heard from Make-A-Wish yet about Timmy's wish to go to Fort Hood, Texas. We are all anxiously awaiting the details!
Well as everyone knows, Timmy's MRI is on Wednesday. Between this and the start of school just about three weeks away, my nerves are shot. Going back to school is such a good thing for Timmy. Letting him go after almost nine months constantly together is going to be hard for me.
Please remember those prayers and positive thoughts especially this week for good MRI results.
With love and thanks, Susan
Sunday, August 7, 2005 6:39 PM CDT
Dear Family and Friends,
Just a quick update to let everyone know that we did go to Children's Hospital on Thursday. It was another very long day. Because Timmy's doctor was out of town on a family emergency, we waited and met with another neuro-oncologist. First, I am happy to say that Timmy's bloodcounts were very good. They were the best I have seen them since coming off a round of chemotherapy. Being that the doctor did not know Timmy, he really did not comment on any of the changes I have noticed with Timmy. His neurological assessment of Timmy was very good. He basically said we will get more answers on August 17th when Timmy has his MRI. It was hard seeing another doctor. He did not leave me feeling as positive and secure as I do with Timmy's doctor. Now the anxiety starts as we await the MRI on August 17th. We will stay in Philadelphia and meet with Timmy's doctor on August 18th for bloodcounts, and the MRI results.
Timmy started his chemotherapy on Friday night. He will continue through Tuesday night. So far he is doing very well. I hope it won't hit him to hard this time.
The last few days Timmy has been busy swimming in our pool and went to a friends birthday party. Happy Birthday Osiris!! He is really feeling good. He use to be so funny and do such silly things to make us laugh. I have seen that in him these last few days and it has been wonderful!
I know it is summer and everyone is very busy. Please continue to pray for Timmy. I have seen how the power of prayer and positive thoughts brought us great MRI results three months ago. I do believe this tumor is still shrinking but I really need to see and hear it too.
I will update soon.
Love, Susan & Family
Tuesday, August 2, 2005 8:25 PM CDT
Dear Everyone,
We are back from our vacation. To sum it all up, without even asking, Timmy told us "I had a great vacation!" Unfortunately, the weather in Ocean City, Maryland was not the greatest, mostly clouds and some rain. We did go to the beach everyday so Timmy could dig in the sand. He even got to ride his boogie-board one day. Timmy also enjoyed swimming in the hotel pool, which was half enclosed. He learned to float on his back which he thinks is the greatest thing to do. At night we would fly a kite or play frisbee on the beach. It was very calm and peaceful being by the ocean. Jay and I were able to unwind and relax a little.
Being by the ocean at night, I found myself praying and talking to God, or any powers that be out there, asking them to please let my Timmy be well. It felt so powerful being there with the waves crashing on the beach. It was the perfect place to think and dream of brighter, healthier days ahead for Timmy.
Timmy is feeling good and is in good spirits. He tires easily from walking and knows when he needs to rest. He has a slight tremor/shaking in his right arm, mostly when he uses it. It seems a little more then before. I can only hope it is the chemo attacking the tumor and that is why this is happening. Timmy is now seven weeks off steroids and has lost five pounds.
We had an appointment on Thursday at Children's Hospital for bloodwork and the go ahead for round #6 of Temador. I received a phone message today saying that the doctor had to cancel all appointments Thursday due to an out of town emergency. Timmy really needs to be seen in order to keep him on his chemo schedule. I am waiting for a return phone call to find out what they will do. Hopefully another doctor will be able to see Timmy.
Thank you so much Sami and Matt K, Miss Colmorgen, Elizabeth, Castaner family, Karen, Miss Diane, Anthony, Chris and Brian and every one else who continue to send Timmy wonderful cards and surprises in the mail. Thank you Elizabeth for the delicious dinner you brought us tonight. It was so good to see you and talk with you and your adorable son Christopher.
I will update in a few days, hopefully with information about how Timmy's visit to Children's Hospital went.
I have posted a few new pictures of Timmy at Ocean City.
Love, Susan & Family
Monday, July 25, 2005 8:50 PM CDT
Dear Family & Friends
Each month, around this time, I realize that another month has gone by that we have won this battle against this horrible brain tumor. It is almost eight months now since this tumor has invaded my Timmy's life. This tumor has changed him physically, but it has not changed the good, kind, strong and loving child that Timmy is. Timmy has been called a "trooper" and a "soldier" for all that he has been through. He continues to fight this tumor and I am so proud to be his mom and so very proud of him!
Timmy has been keeping up with his tutoring and physical therapy very well. He has homework to do almost every night and he willingly does it. We also try to keep his mind active by reading, doing mazes, puzzles and playing board games. He keeps physically active by swimming in the pool as much as possible.
Timmy's fatigue continues. It does not take much to wear him out lately. I wish I better understood what was going on in his body to weaken him so much. The right-sided weakness is very obvious. He has a droopiness on the right side of his face that mostly affects his smile. It is much more noticeable now that his cheeks have gone down. This all makes me very sad, mostly because it all just stinks that this has happened to Timmy. I do try to be optimistic. I do have so much hope, but sometimes I just get so mad. I just miss Timmy being a little boy. I miss him being able to jump on his bicycle and visit his friends. I know he will again someday, it will just take some time.
My good friends Laura and Erin Puck, founders of www.toyscalm.org have recently updated their website. It is an honor that they have included pictures of Timmy on their website. Laura and Erin have been so generous and supportive of Timmy and our family. Their foundation has helped calm the fears of so many children by the giving of toys. Please take a look at their website because I believe it is a wonderful foundation.
My next update will not be for a week or so. We are looking forward to a much needed vacation. I look forward to spending some time with my family and cherishing the "moments". I will take lots of pictures of Timmy being happy and having fun.
As always, please keep Timmy in your thoughts and prayers.
Take good care of each other,
Love, Susan
Wednesday, July 20, 2005 7:56 PM CDT
Dear Everyone,
Our visit to Children's Hospital went very well yesterday. I am happy to say that Timmy's blood counts were good. Timmy has been feeling very tired and weak lately, so I was expecting low counts. I was told by the doctor that doing chemotherapy in the summer can be much more draining. Timmy has also started to lose weight, three pounds in two weeks. His appetite is very poor since he came off the steroids. It is important that he has good nutrition to give him energy too. I have been reading and doing research trying to find healthy foods and different ways to help get him to eat again.
Timmy's strength in his right hand and leg remain stable. There has been a noticeable change in the way he walks. He tends to lead with the left side of his body since his right side is weaker. He seems to have a harder time moving his right leg forward causing him to swing his arms into the air. His Physical Therapist told me today that his balance is off. This is a problem unmasked by coming off the steroids. What it means is that Timmy just has to work harder at physical therapy and at home to regain more strength and balance.
This past Saturday we took Timmy to the beach. He has been asking to play in the sand and build sandcastles. Timmy had alot of fun and got some great exercise, too, by walking and digging in the sand. I have posted some new pictures of Timmy on the beach. He is looking so good and is losing alot of that puffiness in his face now.
I am sending big hugs out to my wonderful friends Maryalice, Sue and Laura. Thank you for listening, helping, and always being there for me and Timmy.
Thank you to all the awesome moms in Middletown who still bring food and special treats to our home. Your kindness and thoughtfulness is appreciated very much.
Timmy mail continues to arrive every day. He is loving this. It's amazing how the little things can make a difference and brighten up his day!
I will update soon.
Love, Susan
Friday, July 15, 2005 9:02 PM CDT
Dear Everyone,
Timmy continues to be tired, weak and sick to his stomach most of the week. His face has been so pale and he has dark circles under his eyes. I am sure his blood counts must be very low right now.
We had tutoring most of the week and went to physical therapy on Wednesday. Timmy worked as hard as he could. It was obvious to me that he was having a hard time. He sat down many times to rest, but got through his 1 1/2 hour session.
On Thursday, Timmy had a bowling birthday party to go to. He was very much looking forward to it. Being at the party with so many children was probably not the best place for him. When his bloodcounts are low, he can catch anything and get sick so easily. It's a tough decision between doing the right thing medically and the right thing emotionally for Timmy. Well Timmy went to the party and had a fantastic time. He bowled a whole game, laughed alot and had so much fun with his friends. Happy Birthday Peter and Jesse and thanks for inviting Timmy to your party.
I must say that the "magic" of getting mail is already working. Timmy has received at least ten postcards, cards and letters already. His eyes just light up and he is all smiles when he sees all this mail for him. I did not tell him anything about this. He really is very surprised! Thank you everyone for taking the time to do this for Timmy.
We are off to Children's Hospital on Tuesday. Timmy is just going for bloodwork. It is a long drive just for blood tests, but it is worth it. Everyone at Children's Hospital of Philadelphia has been so good to us. The nurses and technicians all know Timmy now and I trust them. It is a place I feel safe at when I am there with Timmy.
We are all looking forward to a short vacation in Ocean City, Maryland at the end of the month. It will be wonderful to get away for a few days. It will be wonderful to go to the beach and watch Timmy play in the sand and ocean. We all really need this vacation.
I will update next week after Timmy's hospital visit on Tuesday. Once again our address is: Timmy Pauxtis
12 Buttonwood Road
Middletown, NJ 07748
With Love and Thanks, Susan
Monday, July 11, 2005
Dear Family and Friends,
It was time to give Timmy’s website a new look. I am excited about it and I hope you like the new pictures.
The effects of the higher dose of chemotherapy have hit Timmy already. As of Sunday, he has had stomach pain, vomiting and is weak and very tired. I notice as his body weakens, his tremor returns. It’s so hard to watch him go through this again. Last night was his last dose of Temador. I hope the next few days will be better for him.
Timmy started his summer tutoring last week. He is just fine with doing school work during the summer. He is eager to learn. He wants to catch up on all his missed work. He looks forward to going back to school in September and being with all his friends.
On Friday, I took Timmy to have his eyes examined. I was pretty sure that his vision was good. This tumor is not affecting his vision. His eyesight is 20/25, which I was told was very good. The doctor also said his eyes are very healthy. He will have a Field Vision Test this Friday as an extra precaution.
Timmy’s next MRI is scheduled for Wednesday, August 17th at Children’s Hospital. I am trying not to think about it to much right now. I am sure as the day gets closer, it will be all I think about.
I have been trying to think of a way to make Timmy happy and give him something to look forward to. Timmy loves to get mail. He checks it everyday for anything for him. I have a request to all my family and friends. If you have the time, could you please send Timmy a postcard, or a small note, just to say hello. I know it would brighten up his days. Address it to Timmy Pauxtis , 12 Buttonwood Road, Middletown, NJ 07748. Thank you very much!
As always, please keep Timmy in your thoughts and prayers and I will update soon.
Love, Susan & Family
Monday, July 4, 2005 9:11 PM CDT
Dear Family & Friends,
Just a quick update to let everyone know how Timmy is doing. Timmy continues to be stable. His complexion continues to be pale and he fatigues more easily. His right-sided weakness continues. No headaches! He is now three weeks off steroids! The last time Timmy tried to come off steroids he made it to three weeks. All of his problems started coming back again and he had to go back on the steroids. I have been so worried and hoping he would make it past the three week mark this time.
I would like everyone to know that even though Timmy physically is weaker, emotionally he is strong. I am so lucky to have a such a special child. He is so positive and most of all loving. Timmy gives me so much love. He is a hugger and a kisser. I am so lucky to get so much affection from him. He keeps me strong and he makes me feel like I am such a good mom.
During the last few days, Timmy has kept quite busy. He has played with some friends, gone to a birthday party and worked very hard at physical therapy. He loves playing baseball there. He now purposely tries to hit the other patients there (with a soft ball) and thinks it's very funny. I just love to see him laugh! Timmy has also gotten some exercise by swimming in our pool. He has a great time playing and swimming under the water. He use to jump off the diving board but I am not ready to let him do that yet.
Well, we all went to the fireworks in Red Bank last night and had an amazing, unforgettable time! My friend Rosemary Beck and her husband Steve invited us to see the fireworks with them. Steve is a volunteer firefighter at Fire Department Station #8 in Middletown Township. Steve picked us up in the Fire Chiefs emergency vehicle and got us "quickly" to the waterfront. We joined all the other volunteer firefighters and their families and watched the fireworks from the best seats in town. Timmy got to sit in many of the fire trucks and met many of the wonderful firefighters. Thank you to Middletown Fire Chief Greg Papailiou, Deputy Chief Peter Lucyk and Red Bank Fire Marshall John Drucker for being so good to Timmy and allowing our family to join you. Especially thank you to Steve Beck who went out of his way to make this a special night for Timmy. Timmy loved the fireworks. He was so happy, and I loved watching his eyes light up as the fireworks went off in the sky.
Tomorrow we go to Children's Hospital for an appointment with Timmy's Oncologist. I hope the doctor agrees that Timmy is doing all right off the steroids and keeps him off. I hope Timmy's blood counts are good so he can start round #5 of Temador. I really am ready for some more good news to help get me through another few weeks. I will update in a few days.
Love, Susan & Family
Wednesday, June 29, 2005 9:09 PM CDT
Hi Everyone,
Timmy went to school last Friday for the last day of school. He enjoyed an ice cream party with all his classmates. He also got his yearbook and had it signed by his friends and teachers. The children are always so happy to see him. He misses them so much. Friends and school are such a big part of our children's life. He really needs to go back to school in September. He needs the routine and "normalcy" back in his life to help him be strong. His emotional well being will have so much to do with his physical recovery. We will all work hard this summer to help Timmy continue to catch up with his missed work. We are lucky and grateful to have three wonderful teachers (Mrs. Lettieri, Mrs. Gibadlo and Mrs. Silverstein) work with Timmy this summer. He will start tutoring again on July 6th.
Timmy has been off steroids now for 15 days. He has had good days and bad days. On the bad days he is tired, pale and has to work harder to use his right leg and hand. Monday was his worst day. He had a slight headache, stomachache and vomited. The headaches and vomiting worry me alot but it has not happened again. His appetite has decreased alot. The puffiness in his belly and face continue(slowly) to go down. I have started to give him PediaSure as a nutritional supplement. Hopefully it will help make him feel stronger.
On Saturday we all had a great day out at Uncle Tom's and Aunt Joanne's house. Happy Sweet 16th birthday to my neice Kristin and Happy 8th grade graduation to my nephew Derek. It was so good to see everyone again. Timmy had alot of fun playing with a wonderful girl named Kelly. Thank you Kelly for spending the whole day with Timmy and making him laugh. He has been asking for you everday! Connie and Marie, it was so good talking to you and I want you to know that you really lifted my spirits.
Timmy did well at physical therapy and occupational therapy this week. The girls believe his strength is still very good. It's been a long time since I have said thank you to Jen and Jyo for all you do for Timmy. You have seen him (and me) through all the ups and downs. You are and will continue to be an important part in Timmy's recovery.
Every July 3rd we head into Red Bank to watch the wonderful fireworks display by the Grucci family. Timmy looks forward to this every year. It is always so crowded and my concern this year is the amount of walking that Timmy will need to do. We usually have to walk a mile after we find a parking spot. The walk will be hard for Timmy. I am hopeful that we can still find a way to see the fireworks with Timmy. I want to continue to do all the things that will make Timmy happy.
We will be going to Children's Hospital on Tuesday, July 5th. I am anxious for Timmy's Oncologist to see him and assure me that he is doing good. I hope that his bloodcounts will be also be good so he can start his next round of chemotherapy. I will update again next week.
With Love & Thanks, Susan
Thursday, June 23, 2005 9:07 PM CDT
Dear Family and Friends,
Timmy has been off the steroids for nine days now. Unfortunately, I am noticing some changes in him. His right side has become weaker. He is limping a little more with his right leg and he is not using his right hand as much as before. He is also very tired. Physical therapy was difficult for him this week.
We were told that the chemotherapy would work better when not on steroids. It is so important that we try to get him off them. Timmy must get the full effects of the chemotherapy medication so we can continue to shrink this tumor. I hope that Timmy will rebound from the fatigue and weakness soon.
The kids party for children with cancer this weekend was a lot of fun. (see new pictures) It was like going to a fair, but everything was free. Rides, games, food, cotton candy, ice cream and more. Timmy did sand art, made a bracelet and had a beautiful potrait sketched. He kept really busy, but was not to interested in the rides. He did go down the "big slide" once with his dad. We noticed a lot of the other families brought friends along. I think Timmy would have had a lot more fun if he brought a friend along too.
Jay and I met with the Child Study Team at Middletown Village on Monday. I am happy to say that Timmy was given everything we felt necessary to make his school re-entry as easy as possible. Timmy will definitely be going into 4th grade. He will be with his friends and classmates at the very beginning of the day and for "specials". (art, music, computers, gym, etc.) He will then go to the Resource Room for math, grammar and reading. There will only be eight children, one teacher, and one teacher's-aide in Resource Room. This smaller class size will work well for Timmy. He can work at his own pace and will get the extra attention that he will need. After Resource Room I am hoping he will return to class and have lunch with his classmates. I think Timmy will probably only do half days for a while until he is stronger. Because of this, a tutor will be available to come to our home after school to help make up missed work. Timmy will also get physical therapy and occupational therapy once a week at school. Other items included are an extra set of school books at home, a spell check and no timing on tests.
One of my biggest concerns for Timmy once he returns to school is keeping him healthy. Timmy's immune system is very suppressed. Contagious diseases, especially chicken pox can be life-threatening to him. Mrs. Buonocore, our wonderful school nurse and I will work together to develop an organized disease notification plan. I hope to send out letters to all of Timmy's classmates parents asking them for their help in reporting any serious illnesses. I know with everyones help we can keep Timmy in good health.
Thank you Mrs. Lettieri, Mrs. Silverstein and the entire Child Study Team for putting together an IEP that will help Timmy succeed in school.
Also on Monday, Timmy had a visit from retired Colonel Jim Guerreri and his wife Barbara. Colonel Jim had heard about Timmy's love for the army and wanted to meet him. Colonel Jim came to our house dressed in full army uniform. He even surprised Timmy by giving him a uniform that he had worn while on active duty. On the uniform he had Timmy's name placed above the pocket. He also gave Timmy three different army hats and a US Army coin that said "Battle with confidence, honor and pride".
The Colonel told Timmy many stories about his life in the army and the places he has been to. He spoke about weapons and had fun playing with Timmy and his remote-control army tanks. He even gave us a few suggestions on things to see and do while at Fort Hood.
Thank you Colonel Jim and Barbara for everything you did for Timmy. You took the time to make a little boy you did not even know very happy. He enjoyed your visit very much and loves wearing his boonie hat. We hope to see you both again soon.
Timmy will be going to school again tomorrow for an ice cream party. I am really happy that he will be spending the last day of school with all his friends.
Timmy's next visit to Children's Hospital is not until July 6th. At this time, if his blood counts are good, he will start Round #5 of Temador.
As alway, please continue to keep Timmy in your thoughts and prayers and I will update soon.
Love, Susan & Family
Friday, June 17, 2005 10:05 PM CDT
Dear Everyone,
Timmy continues to do well. He had a few rough days after chemotherapy where he was nauseous, pale and very tired. His last dose of Decadron (steroid) was Tuesday. Once again, I am so hopeful that this time he will be able to come off of them completely. Each morning when he wakes up, I hope so much that there are no new symptoms like before. I tell myself that now, since the tumor is smaller, there should be more room for swelling and fluid build-up. Hopefully, he will not have the same problems again. Timmy has also lost two pounds. His appetite has decreased alot. His hair has also grown in quite a bit. It is still thin, but his scar is covered and he looks so much better.
Friday was Fun Day at Timmy's School. He was so excited about going. We went in at 9AM and joined up with all his classmates. Timmy played all the games and even went through a maze and down a slide. He laughed so much! Being with his friends, doing normal things is the best medicine for him. Everyone loved seeing him so happy. At 12PM he had lunch with his classmates and then we headed home. He was exhausted afterwards, but thankfully he was felt fine the next day.
Tomorrow we are going to a kids party for children with cancer. Cancer is a hard word for me to say and even write. I have not said it very often. There is a wonderful family in Rumson who every year opens their home to sick children. They have games, prizes, rides, food and swimming all free for the children and their families. What a generous thing to do! I am hoping that it will be another amazing day that will make Timmy happy.
I have heard from Make-A-Wish. They have contacted Fort Hood in Texas. They are in the process of putting together an army experience for Timmy. I am so excited for Timmy. He will love this! We are hoping to go in October or November. More details when I get them.
On Monday, Jay and I will be meeting with the Child Study Team at Timmy's school. They will be telling us what services they will be putting in place for Timmy for school re-entry in September. I am hopeful that with their help we can make this as easy as possible for Timmy.
Please keep Timmy in your thoughts and prayers. Especially now when his body is going through so many changes. I need him to be strong, to be healthy and get through this.
Happy Father's Day to Grandpa Pauxtis, Grandpa Antonelle, Uncle Tom and all the great dads out there who are a part of our lives. Happy Father's Day especially to Jay. I could never do any of this without you. I will update soon.
Love, Susan
Sunday, June 12, 2005 6:55 PM CDT
Dear Family and Friends,
I am happy to say that Timmy continues to do well. Tonight will be his fourth night on Temador. He has been a little tired but I think the intense heat and humidity has gotten to all of us. Tuesday will be Timmy's last day on Decadron. It's a day I look forward to. Everyone who knows me knows how much I miss my skinny Timmy. He has gained so much weight and looks so different. I truly hope that he can come off it this time.
Timmy continues to go to physical therapy twice a week. I believe that his right side is stronger. He walks much better, but he still has a slight tremor in his right hand. Tutoring is going well. We will soon be saying goodbye to one of Timmy's tutor's, Ms. Hoadley. Ms. Hoadley has been so good for Timmy. She is enthusiastic, encouraging and funny. She has made Timmy feel smart and so good about himself. Thank you Ms. Hoadley and we will miss you very much!
On Friday, Timmy went in to school for his pizza party. It was a wonderful day and Timmy had a great time being back in school again. The children made him a big sign that said "We're Glad Your Back Timothy" and lots of other pictures that decorated the classroom. They had pizza, brownies, popcorn and watched a movie all afternoon. Thank you Mrs. Lettieri for giving Timmy and his classmates this party. Thank you Maryalice and Maryann for coming in and helping out. It's great to share the good moments with my friends too.
Timmy had a special gift to give to all the children in the third grade. There is a TY Beanie Baby dog named "Courage" who was made to honor all the NYPD heroes of 9/11. Since Timmy wants to be a policeman and has shown a great deal of courage, he gave one to every child to remind them of him. The children were very excited to get them and Timmy was thrilled to give them out to each and every third grade student(at least 65 of them). The gift was his way of saying thank you for all the cards and gifts and for being Timmy's friend.
On Saturday we went to a High School Graduation Party. It was a very special Graduation because the party was for a special friend. Erin is a brain tumor survivor. Many years ago Erin went through three brain surgeries, two years of chemotherapy and radiation. Today she is a beautiful, healthy young woman who will being entering Villanova University in the Fall. Congratulations Erin, we are so proud of you!
Timmy and I would also like to say thank you and have a wonderful, safe summer to Mrs. Kurtz all our new friends at St. Pauls Interparochial School. Thank you for your cards, gifts, messages and especially prayers. We are so happy that you came into our lives and hope someday soon to meet all of you.
As always thank you for your messages, Timmy loves to read them. I will update soon.
Love, Susan, Timmy and Family
Wednesday, June 8, 2005 2:42 PM CDT
Dear Everyone,
I am happy to report that Timmy had very good follow-up visits with his Radiologist and Oncologist yesterday. We started out at 7AM and did not return home until 7PM. It was a very long day, and our first hot and steamy day in Philadelphia!
In the morning we met with Timmy's Radiologist. He had not seen Timmy in three months. He was so happy, "really smiling", to see how good Timmy was walking. He was impressed with the increase in his upper body strength too. We talked about all of Timmy's recent scans. I did not realize that he was the Radiologist who was involved in "reading" Timmy's many scans. He said that he did not believe that when Timmy had all the swelling and fluid build-up that this was an aggressively growing tumor. They needed to do all the scans to try to determine what was happening. He believes that the tumor has reacted positively to the radiation and chemotherapy and its shrinking is a good sign. He believes the major effects of radiation have already taken place and that the Temador will have to do the rest.
We also spoke about long-term problems caused by radiation. When Timmy received his radiation, he got a good deal directed at his hypothalamus. Radiation to the hypothalamus can cause a variety of hormonal abnormalities. Thyroid, impaired growth, reproduction and other important hormones will have to be closely monitored by his Oncologist. This was all very difficult to hear but the Radiologist assured us that there are hormonal supplements to help deal with this.
I had arranged ahead of time to have our visit with the Radiologist at the same time as Timmy's friend Gracie. Gracie was the little girl who had radiation at the same time as Timmy. Her Mom Peggy and I have stayed in touch. Gracie is doing fantastically. Her first MRI was clear, free from any signs of tumor! We all went to the cafeteria in Children's Hospital and had a great lunch together.
After lunch we went to our next appointment with Timmy's Oncologist. As usual it took so much time to find a good vein to get blood from. Timmy's arms and hands get tapped on so much, I'm surprised he's not black and blue. The people in the lab are very good and patient. They ended up getting blood from Timmy's hand.
Timmy's examination went well. His blood counts are good with just his white blood cell count low. Because of this his chemotherapy dose will be lowered to 175mgs in order to keep him on schedule. Timmy will start Round 4 of Temador on Thursday night. Unfortunately, the doctor wants him on steroids for another week while he is on chemotherapy. Coming off the steroids and doing chemotherapy at the same time will leave his body in a very weakened state.
I mentioned to Timmy's doctor about his visit from the Make-A-Wish people. When Timmy told him that he wanted to be an army guy his doctor just laughed. He thought it was great as long as Timmy doesn't want to go to Iraq!
On Friday, Timmy will finally be going in to school to have his pizza party with his classmates. We are both so excited and can't wait to go in. I think Timmy's teacher Mrs. Lettieri is even more excited than we are! She has a wonderful afternoon planned for him. Timmy has a special gift to give to all the children in 3rd grade. It's his way of saying thank you for being his friend. I will tell you about it in my next journal update.
As always, please keep Timmy in your thoughts and prayers. We have a very long road ahead of us and we will need them. Much love and thanks to everyone, Susan
Friday, June 3, 2005 3:41 PM CDT
Dear Family & Friends,
It has been almost a week since I have last updated Timmy's journal. I think that's a first for me. I haven't had much to write about. Timmy continues to feel good. He is happy and silly and that makes me happy. He is now on Decadron .5mg every other day. His last day will be Monday. I am so hopeful he will be able to come off the steroids completely this time. Hopefully, since the tumor is smaller, and if there is ever swelling or fluid build-up again, Timmy will be able to tolerate it without ever having to go on Decadron again. That is my hope.
It's a rainy day and I am feeling emotional so I have some things that I would like to say to everyone. Our lives have changed so much over the last six months. Our family has grown closer. Grandparents, aunts, uncles, and cousins have come together with so much love and support for Timmy. Friends, our amazing friends have constantly and consistently been there for us. I am in awe of how we were just living our lives everyday. You never think anyone notices you or your family. We were noticed, we have been comforted and supported and continue to be by our wonderful friends, new and old. Thank you so much!
I believe we live our lives differently now. We are different people since Timmy was diagnosed with a brain tumor. Our lives are so busy, but I won't take my children for granted anymore. Our children are the most precious things on this earth. To see one of them so sick has caused so much hurt. We are thankful for each good and happy day we have with Timmy. I am thankful when Andrew and Jason are home safe at night.
I read something that has so much meaning to me.
Yesterday is the Past
Tomorrow is the Future
and Today is a Gift!
Our children are our gifts to treasure each day. Please hug your children extra close tonight.
Thank you very much to everyone who has been visiting Timmy's website. It means so much to me that he is thought about so frequently. I will update next Wednesday after our visit with Timmy's doctor.
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A SPECIAL REQUEST: A friend, Coleen suddenly lost her father Raymond Murray recently. It is such a difficult time for her and her family. Could everyone take a moment to say a prayer for comfort and strength for her family.
Love, Susan & Family....
Saturday, May 28, 2005 3:06 PM CDT
Dear Everyone,
Yesterday Timmy starting feeling better. He actually had a good day and seemed a bit like his old self. He was singing, talkative, and energetic, especially at physical therapy where his PT Jen took him outside to kick a ball around. She had him laughing by trying to race with him. All the people at Bayshore Rehabilitation have been so good to me and Timmy. If your reading this Jen, Jyo, Jane, Chelli, Delphine and the rest of the Staff, I want you to know we appreciate you all very much.
Timmy has been keeping up with his tutoring very well. His wonderful teachers Ms. Hoadley and Mrs. Silverstein are moving along nicely in all areas of his work. From the reports I get from the teachers, I can say that Timmy is doing very well in all of his subjects. He really needs to concentrate on reading comphrehension and has some problems with short-term memory. Plans are underway to continue tutoring during the summer. I believe we will have three teachers from Middletown Village who will be tutoring him during the summer. I am happy that Timmy will know all of his teachers and they all know him. This is such a perfect arrangement for him.
Onto the Make-A-Wish visit. On Thursday night we had a visit from Mary and Rita who were representatives from Make-A-Wish. They knew Timmy loved policemen and came with lots of gifts that were all cool police things. Timmy got a police baton that lights up, a police vest that glows in the dark, a fire/police hat, a police ID that you wear around your neck, a book on NJ Law and a big framed police picture.
We all spoke for a while answering many questions about our family. They also spoke to Timmy about what all his favorite things were. Than the big question came, "Timmy, what is your one true wish"? Timmy than proceeded to say "I want to be an army guy"! His response was not a surprise to me but it was to them. We were told that 90 percent of wishes are to go to Disney World and that Timmy's was definitely original.
I did some homework on Army bases before the meeting with Make-A-Wish. On a recommendation, I researched Fort Hood in Killeen, Texas. It is the largest military base in the United States. They have the largest armored training installation in the world. They also have the best trained and equipped soldiers in the US Army. They advertise it as "a great place to be a soldier". Well this just had to be the perfect place for Timmy to go to be an army guy. I presented all the information I had to Mary and Rita. They said it should not be a problem as long as they can get clearance to get on the Fort Hood Army Base. So we may be going to Texas! I will hopefully hear from the Make-A-Wish Main Office soon to get the go ahead. We then just have to give them a few dates, and they will arrange the whole thing. This is all very exciting for Timmy and our family. I will keep everyone updated when I get more information.
Our next visit with Timmy's doctor in on June 7th at Children's Hospital. He also has a follow-up visit with his Radiologist. Until then, I hope Timmy continues to feel good and be happy!
Love, Susan and Family
Wednesday, May 25, 2005 6:37 PM CDT
Dear Everyone,
Thankfully it has been a good couple of days for Timmy. Although, the effects of the chemotherapy started to show today. Timmy woke up pale and very tired after almost ten hours of sleep. He had a hard time moving around and just wanted to lay down most of the day. I cancelled his physical therapy today but he still wanted his tutor to come. Timmy is now on .5mgs of Decadron daily. I am so hopeful that we will be able to get him off the steroids completely now.
Monday night was a special night for Timmy. Because it was such a success the first time, Timmy's friends decided to cut their hair short again to show support for him. My friend Vivian Palmer had at least 16 boys over to her house. The boys ate, played and then got their hair cut again (really short this time).
I decided to bring Timmy this time. I wanted him to see how much all of his friends care about him. He was very nervous about going, but ended up having so much fun. He laughed and played kick-ball (thank you Sue), even stealing bases. Thank you Vivian and all the other parents for being there. Thank you Phyllis for all those great haircuts! Your continued support in so many different ways means so much to us.
The Make-A-Wish people will be here tomorrow night. They really just want to meet and talk to Timmy about his wish. I will update everyone on how it went this weekend.
As always, please continue to keep Timmy in your thoughts and prayers. They really are working!
Love, Susan and Family
Saturday, May 21, 2005 6:33 PM CDT
Dear Family and Friends,
It's been very good couple of days for all of us. Since getting the great results of Timmy's MRI Spectroscopy, we have all been happier, more content and full of hope. Timmy is doing very good right now. Tonight is Timmy's 4th night on chemotherapy and so far he is tolerating it well. He is still on 1 mg of Decadron (steroid). He really needs to start coming off, he has gained quite a bit of weight. We will start lowering the steroids next week.
Timmy went to the Museum of Natural History on Thursday with his 3rd grade class. He was so excited about going. He has missed school and his friends so much. When we walked into the Library at school to meet up with his classmates, they all yelled out a wonderful "Hi Timmy"! He was very happy and smiling so much.
The trip was perfect from beginning to end. Timmy's teacher Mrs. Lettieri took such good care of us. She made sure there was a wheelchair waiting for us when we got there. He hardly used it. He was determined to keep up with the other kids and he did very well. We visited the Dinosaur Exhibit and Rocks and Minerals Exhibit. The dinosaurs were fantastic! Towards the end of the trip, Timmy did become tired and used the wheelchair a few times. It was wonderful to see all the other parents again. Thank you for being so helpful. Everyone looked out for Timmy and helped push the empty wheelchair around. Your genuine concern and support for Timmy and our family is very much appreciated. Maryalice, it was so good to talk and spend some time with you again. I miss you so much. Timmy was very tired by the end of the trip. It was a good tired though, and he slept very well that night.
We are expecting a visit from the Make-A-Wish people hopefully this Thursday night. They want to meet with the whole family. So far, Timmy still wants to go to an Army base and be an Army guy. He wants to meet Army men, see tanks, and yes, lots of guns. We'll see what happens. I hope they can find a great Army base somewhere tropical!!!
Thank you everyone for the wonderful messages. We love sharing our great news with everyone and reading your heartfelt messages. Thank you for continuing to be there for us on this journey with Timmy.
Love, Susan and Family
Tuesday, May 17, 2005 6:55 PM CDT
Dear Family and Friends,
We have wonderful news! THE TUMOR HAS SHRUNK BY 35 PERCENT!!
A significant decrease in the circumference of the tumor has occurred. Necrosis has been confirmed in the tumor and more areas are showing signs of tumor deterioration.
Timmy's doctor was extremely happy with the results of the MRI Spectroscopy and the positive changes that have occurred in the last few weeks.
Our family is so overjoyed and relieved by these findings. I now have the good news I have needed to make me believe that we can defeat this tumor. I have seen it and I have heard it.
Timmy starts his chemotherapy again tomorrow night. The doctor has increased his Temador to 210mgs. I want you all to know that Timmy is an amazing boy. He was so strong and brave over these last two days. We are so proud of him!
Thank you everyone for all the prayers, support, love and positive thoughts you have given to Timmy and our family. We have been going to Church and praying so much lately. I believe God is listening to all of us who love and care for Timmy so much.
WITH LOVE AND THANKS, SUSAN & FAMILY
Sunday, May 15, 2005 12:36 AM CDT
Hi Everyone,
I am happy to say that Timmy continues to feel very good these last few days. We have dropped his steroid down to 1 1/2mgs and he is doing well on it. He is walking good, talking good and has good strength in his right hand. Timmy has also been spending some more time outdoors lately since the weather has been so warm. Many of his friends from the neighborhood have been coming by to say hello. He really loves seeing them and talking to them.
This past Wednesday and Thursday, Timmy completed his IEP testing at Middletown Village School. Timmy was so excited to be back in his school. Everyone was happy to see him walking through the hallways. We both got lots of hugs and big smiles!
Timmy's testing on Thursday took about three hours. He had an educational assessment and speech and occupational therapy evaluations. The initial feedback is that Timmy did very well. The Child Study Team said he was happy and cooperative and that he did very well on his testing. They believe he should have no problem going to 4th grade next year. Timmy will also receive physical and occupational therapy through the school district. Timmy will receive whatever services the Child Study Team feels will benefit his education. We will all meet again when they have all their recommendations complete.
I am so happy that Timmy did so well. My hope is that Timmy will be ready to go back to school in September. Everything he will need to make his return to school easier, will be in place for him. I would like to thank all the members of the Child Study Team at Village School for taking such good care of Timmy during his testing. Your encouraging words and kindness made him feel so good about himself. He really needs that.
On Monday, Timmy will be having his MRI Spectroscopy at 2:30PM at Children's Hospital of Philadelphia. He must fast for eight hours before because of the sedation. Afterwards we will spend the night in Philadelphia. We will return to see Timmy's doctor on Tuesday. When I spoke to the nurse practitioner last week she was pretty confident that the doctor would have the MRI test results for us. She also said that this test should show what is actually happening to Timmy's tumor. Tumor growth or swelling/fluid build-up. Hopefully confirmation of the areas of necrosis.
I need to hear positive results. I hope so much that this tumor is reacting positively to the radiation and chemotherapy. I hope that parts of this tumor are dying and the rest will follow. I have so much hope for Timmy but sometimes the fear can be so overwhelming. I will update everyone with the test results as soon as possible.
Love, Susan and Family
Tuesday, May 10, 2005 6:29 PM CDT
Dear Family & Friends,
It has been very quiet around here the last couple of days. Timmy has been feeling very good! Mother's Day was also peaceful with Timmy and his Dad making me breakfast and dinner. Timmy gave me a wonderful gift. He made me a birdhouse. There were two bluebirds on the house that he named Mom and Timmy. He also wrote on the roof of the birdhouse "Don't worry, be happy". Yes Timmy you do make me very happy, but the worrying, that will be now and forever. I will cherish this birdhouse forever.
I never talk much about my sons Jason and Andrew. Jason is 16 and Andrew is 20. Both of them have held up extremely well these last 5 1/2 months that Timmy has been sick. Jason is working on his private pilot's license as well as his driver's license. He has also maintained great grades at school. Andrew will be finishing up his second year at Quinnipiac University in Hamden, Ct. He is majoring in Communications and has also made Dean's List each semester. He has grown up so quickly and has taken good care of himself. Andrew will be coming home on Friday for the summer. It will be wonderful to have the whole family together again.
Timmy has a busy rest of the week ahead of him. On Wednesday, Thursday and Friday morning he will be going to his school to start his IEP testing (Individualized Education Plan). They will test and evaluate him in many areas in order to have everything he needs in place when he goes back to school in September. He is so excited about going back to his school and is not even worried about his tests. I will not be able to stay with him but will be anxiously waiting at home for them to call me.
Thank you again to everyone for the wonderful messages. Please keep them coming because Timmy loves to read them. I will update this weekend.
Love, Susan and Family
Friday, May 6, 2005 2:36 PM CDT
Dear Family and Friends,
Since I last posted, I have received many phone calls and e-mails with a lot of encouragement regarding the reading of Timmy's PET Scan. I have been told that "hot spots" do happen in the treatment of cancer. That chemotherapy and radiation will continue to work to destroy this tumor. I must also hold onto the positive and know that parts of this tumor are dying and the rest of it will too! Thank you everyone for your caring and support. It helps me continue to be strong for Timmy.
Timmy has had a good couple of days. He still goes to physical therapy and occupational therapy two times a week. He is working very hard and regaining his strength again. His home instruction is going great. He still looks forward to his teachers coming and loves to do homework. I am so proud to see that he always has a strong positive attitude and will try to do everything he use to. The steroids have made him so hungry all the time. He has definitely gained some weight. We lowered his steroids to 2mg a day. I hope that we will be able to get him off of them again soon.
This Tuesday was a special, emotional day for me at Timmy's School, Middletown Village. I had arranged for Dr. Todd from Monmouth Medical Center to speak to all of the 3rd graders about Timmy's brain tumor. Dr. Todd explained to the children about Timmy's chemotherapy and radiation treatments. He spoke about how the medications may have changed Timmy on the outside, but that he is still the same Timmy on the inside. He then answered many thoughtful questions from the children who were very concerned about Timmy. Thank you Dr. Todd for giving your time to do this for Timmy and his classmates. Our family along with many others appreciate your caring and genuine compassion towards children. Thank you to Sue Griffin and Laura Puck for your constant support and friendship. Thank you to our principal Mrs. Beth Bournias and Timmy's teacher Mrs. Kathy Lettieri for helping to make this happen.
Wednesday was an incredible day for Timmy. The NJSP Motorcycle Unit came to our home to visit with Timmy. Troopers Andrew Schibell, Rich Knochel, Mike Ambrosio, Rich Gilman, Brian Flaherty and Lt. Mike Cerisano gave Timmy his very own NJSP motorcycle helmet. He also got a shirt, hat, hat pin and tie tac. Timmy even got to go for a ride with Tpr. Mike Ambrosio on his motorcycle. The smile on his face was wonderful, he had a fantastic time (see new pictures). When the Troopers left they drove in formation up and down our block flashing their lights and blasting their sirens.
These visits from the Troopers and Police Officers really lift Timmy's spirits and make him feel special. Thank you all so much for continuing to think of ways to make Timmy happy.
Timmy is scheduled for an MRI Spectroscopy on Monday, May 16. This is a 2 1/2 hour detailed MRI that will be done under sedation. We will see his doctor the next day, hopefully for the results, blood tests and the okay to start Round 3 of Temador. I really hate that Timmy must go through this long MRI under sedation. I really hate having to wait for test results again. I know we have done this before and we will somehow do it again.
Please keep Timmy in your thoughts and prayers and I will update again soon.
Love, Susan and Family
Monday, May 2, 2005 8:17 PM CDT
Dear Family and Friends,
We spoke with Timmy's doctor today. The reason for the delay was that he was presenting Timmy's PET Scan for review to the radiologists at the Hospital of the University of Pennsylvannia.(this is where Timmy had is radiation treatments)
The radiologist at Jefferson Medical Imaging found necrosis (tumor dying) in some areas of Timmy's tumor. But he also found two areas of very hypermetabolic activity "hot spots". This could mean an agressively growing tumor.
Timmy's doctor wanted another opinion from the pediatric radiologists at the Hospital of the University of Pennsylvannia. His conclusion was that there were clear signs of necrosis but there were also signs of possible higher activity. He said the PET Scan is not always definitive and he would not make a call on the "hot spots" yet.
We are disappointed and hurting because the results are unfortunately inconclusive. Timmy's doctor wants him to have another MRI and an MRI SPECT in two weeks to follow this tumor more closely.
This is very difficult for us because its not the good news we were hoping for. It is still early in the treatments. Change can still happen, treatments can change. The test that was suppose to give us answers, gave us little and now we must wait again.
Timmy has been through so many tests and I dread him having to go through more so soon. We love Timmy so much and we will do everything possible to give him the strength to get through all of this.
Love, Susan and Family
Saturday, April 30, 2005 7:05 PM CDT
Hi Everyone,
The last two days have been frustrating. After many attempts to reach the doctor yesterday, we were told that he had not been in the hospital to read Timmy's PET Scan films. What we were told by his nurse practitioner was that his preliminary report showed nothing remarkable. Well that was not enough information and we need so much more detail! I was hopeful that maybe we would get a phone call today, but that has not happened. So we now wait till Monday.
On a better note, yesterday Timmy and I had lunch with four Police Officers from Oradell, NJ. Chief of Police, Ron Emanuel, Captain Joe Maggio and Police Officers Rich Liguori and Michael Bartlett. (See new pictures)
These great guys arrived with two boxes full of gifts for Timmy. Timmy now has 13 more hats! The hats were from different Police Departments in North Jersey, New York, the FBI and Boston. Many of the hats had pins on them. Timmy also got at least 20 more Police Patches. There were t-shirts, sweatshirts, sweatpants and one of the best was a jacket from the Oradell Police Dept. with Timmy's name embroidered on it.
I think Timmy's two favorite gifts were an Oradell Police Badge that had an ID card with Timmy's picture on it. The card made him an honorary junior police officer. The other was a real riot helmet!
Timmy and I rode in their police car to Applebee's for lunch. We really created quite a scene and got many looks from people. We all had a great lunch together.
Thank you Police Officer Rich Liguori for doing this for Timmy. You truly went out of your way to make Timmy happy and you did.
Well it has been a rainy Saturday and Timmy relaxed at home all day. He has been feeling very tired but otherwise is well. He is still on steroids, 4 1/2 mgs a day. We will drop it to 3 mgs on Monday.
Getting through this weekend with so little information is very hard. I hope to get all the answers to our questions on Monday. I will update soon.
Love, Susan and Family
Thursday, April 28, 2005 4:43 PM CDT
Dear Family and Friends,
I really do not have much information to share with everyone regarding Timmy's PET Scan results. Timmy's dad received a phone call this evening at about 5PM from the nurse practitioner with a message from Timmy's doctor. The doctor has the Radiologist report but has not yet seen the films. Once he has both, he will be able to form an opinion and tell us more.
I am hopeful that after the images are reviewed we will get a phone call from Timmy's doctor. I will also be putting in a call to the doctor tomorrow. I have so many questions.
The doctor did not have the films to review today because we were never told he needed them. We took the films home with us yesterday. I received a phone call while we were at physical therapy today that he needed them. After physical therapy we went right home to get the films and then to the UPS store to overnight them to him. He should have them in the morning.
We had a very long day yesterday with the PET Scan We arrived at Jefferson Imaging at 8:30AM. They took us to a room right away where the technician Brian (he took care of Timmy when he had his first PET Scan) started to look for a vein to start an IV to inject the radioctive glucose. Unfortunately, Timmy's veins have disappeared due to the steroids. He spoke about starting an IV in his foot and I pleaded with him to keep looking for a vein in his arm. I couldn't even imagine doing that to Timmy! After applying heat packs to Timmy's hands, he managed to find one he could work with. Timmy was in tears but sat quietly and did what he needed to do.
After being injected with the glucose, Timmy and his Dad had to stay in a dark room for two hours. I knew I wouldn't be able to sit still that long so I waited outside. After the wait in the dark room, Timmy was brought to the PET Scan. Its a big open machine, much better than a closed in MRI machine. We were able to sit in the room with him. The scan took about 30 minutes. Timmy did a great job and laid very still.
Much to our surprise the test was not over. We were told that Timmy's doctor wanted a "delayed uptake" and we would need to come back in two hours and repeat the scan again. We all went out for lunch to a nice restaurant called "Yogi's". The waitress was so kind to Timmy, talking to him and fussing over him. We have always found Philadelphia to be a great city with kind, caring people.
After lunch, we went back for the second part of the scan. They took us right in again and this time Timmy was only in the machine for 20 minutes.
I had promised Timmy that we would go visit the University of Pennsylvania's Museum of Archeology and Anthropolgy after the test. It was very late but we managed to walk around and see mummies, stone tombs and many ancient artifacts from around the world. It was fun, but we were all so tired. We ended the visit with a stop in the Gift Shop which made Timmy very happy.
Timmy was very tired today, but was happy and felt good. We have a great day to look forward to tomorrow. Tomorrow the Chief of Police and a few officers from Oradell, NJ are coming down to take Timmy and me out to lunch in their squad cars. Timmy is very excited and so am I!
I will update again when I have some more information to share with everyone. Thank you all again for your wonderful messages, they mean so much to us.
Love, Susan and Family
Monday, April 25, 2005 3:28 PM CDT
Hi Everyone,
It's been a good couple of days around here. Timmy has been feeling better back on the steroids. Unfortunately, all the side-effects are back too. (hunger, irritability, puffiness and some restless nights) His speech and strength in his right arm and leg are better. He has also not had any headaches. Everyone calls steroids an evil necessity, and they are!
Timmy had a good weekend spending time outdoors and having his friends Anthony and Christopher over to play and have pizza. He went without his hat for the first time in front of the boys. His hair is still short, and his scar still shows, but he felt comfortable enough to go without it. That made me happy.
Our family has not always been the best about going to Church. Timmy has been asking to go lately and we took him to the Sunday evening Mass at St. Mary's Church. He was thrilled to receive Communion again. We will definitely try to attend more often, especially for Timmy.
We also had a fun dinner with our friends the Palmers after Mass. Vivian, you are so wonderful and thank you for making us laugh. It was so good to be out with you and your family. Thank you so much for your love and support.
I have good news to share with everyone. Timmy has been granted a wish by the Make A Wish Foundation of New Jersey. A team of volunteers will be coming to our home in a few weeks to talk to Timmy. The Foundations mission is to enrich a childs life with hope, strength, and joy while fighting a serious illness. A wish gives a child something to look forward to. Timmy has expressed interest in a few things. He would like to be a policeman, an army man or go on a trip to a beautiful island to relax in the sun. He can also ask to meet someone famous or just to be given something that he has always wanted. I want Timmy's wish to come straight from his heart. We look forward to finding out what Timmy's one true wish will be. I will keep everyone updated.
Timmy's PET Scan is scheduled for this Wednesday at 8:30AM at Jefferson Medical Center in Philadelphia. Since it is such an early appointment we will be going into Philadelphia on Tuesday night. We have decided to stay at the Ronald McDonald House. We stayed there for a week when Timmy was first diagnosed. The House is nice, the people are wonderful and it costs just $15 a night.
I ask everyone to please continue to pray for Timmy. We are hopeful that the PET Scan will bring us some positive news. I hope Timmy's doctor will get a better idea of what is happening to this tumor. We need to know that his treatments are being effective, and continue to give this tumor everything medically possible to destroy it.
I will update by the end of the week.
With Love and Thanks, Susan & Family
Thursday, April 21, 2005 8:54 PM CDT
Dear Family and Friends,
It's late and we are tired and once again emotionally drained. I will try my best to explain what we have learned from Timmy's MRI.
First, Timmy was great getting through his MRI at 10:30PM last night. He had an IV put in because the doctor wanted the MRI done with contrast.
When we met with the doctor this afternoon in his office he had Timmy's MRI from 5 weeks ago and the new MRI side by side on his computer. The doctor had circled and measured the tumor on both so we could see the difference. There are many. The current MRI shows the tumor to be slightly bigger. The increase in size is due to swelling and fluid build-up in and around the tumor. This is happening due to the on going effects of the radiation and chemotherapy. There were two large areas of necrosis within the tumor. There were also indications of the blood supply to the tumor being closed off in many areas. There was alot of activity going on in this tumor that was not there before.
The doctor wants Timmy to have a PET Scan to determine what is still active tumor and what is necrosis. A PET scan measures the amount of radioactive glucose being used by a tumor. Cancerous cells use more glucose, healthy cells use less and necrotic areas use none. This test will confirm that that parts of the tumor are dying and the treatment is being effective.
Timmy's tumor is very big. Many of his new symptoms are due to increased pressure against his brain. He will stay on the steroids for awhile to help control the swelling and than hopefully be weaned off as tolerated.
I hope that the swelling and fluid build-up will resolve soon and that all the activity in this tumor will finally make it shrink, collapse or stabilize. We will take anything just so the pressure causing Timmy's problems will be alleviated.
I will be scheduling his PET Scan in the morning. In the meantime the tumor is doing what it is suppose to be doing in order to die. I must hold on to that and believe it will.
Tonight was Timmy's last night on his chemo medication. He seems to be tolerating it good so far.
Thank you so much to everyone for their messages of support. Timmy and I need them very much. Thank you Joy for every prayer said and candle lit for Timmy while you were in Italy. The beautiful rosary beads you gave Timmy are now hanging over his bed.
Good night and I will write again soon.
Love, Susan and Family
Tuesday, April 19, 2005 8:23 PM CDT
Hi Everyone,
I would like to let everyone know that Timmy's MRI and doctors appointment have been rescheduled. His MRI is now at 10PM tomorrow night (yes, they do them all night long and their schedule is quite booked). We will see the doctor Thursday afternoon for the results. We are going to spend Wednesday night in Philadelphia since it will be such a late night.
As of today, Timmy is doing good. Being back on a high dose of steroids has made him a little irritable. He has not had any more headaches and his speech is a little better. His right-sided weakness is much more noticeable. It is so disappointing that Timmy is back on steroids, he was doing so well. I can only hope that this will be temporary and he will be weaned off them soon. Also, tonight will be his third night on his chemo medication and so far so good.
Timmy managed to get out in the beautiful weather today and play a little. He just tries to do everything he use to do, even if it's difficult. I often try to help him but he gets mad when I do. I like that he is so tough and independent.
Well my nerves are rattled and I am anxious to find out what has caused this change in Timmy. I hold onto the hope that it is swelling from fluid build-up caused by cells dying in this tumor.
I will update by the end of the week.
Love, Susan & Family
Sunday, April 17, 2005 8:49 AM CDT
Dear Family and Friends,
We came home from Chldren's Hospital last night. The neuro-radiologist at the hospital read Timmy's CAT Scan and spoke with Timmy's doctor and concluded that: They believe there is fluid build-up within the tumor from dying cells that is causing swelling. The tumors increase in size could be from the swelling and it may be pressing on nerves that effect his speech, slight eye changes and increased weakness on the right side of his body.
Timmy was put back on IV steroid while in the hospital and it did help relieve some of his symptoms. We were given the choice to stay in the hospital for a few days so they could watch Timmy or bring him home. We decided to bring him home. We feel comfortable with the explanation of what happened to Timmy and will keep him on the steroids at home.
Timmy's doctor wants to see him and do an MRI on Tuesday. An MRI will give a much better picture of whats going on than a CAT Scan.
The reading of the CAT Scan sounds like something positive is happening within the tumor. I will reserve my feelings and opinion on it until we get the results of the MRI.
Because of the last few days we were not able to start Timmy's 2nd round of chemotherapy. We were given the okay to begin that tonight.
Timmy slept very good last night and is feeling good this morning. It has been such a stressful few days and being back at the hospital again brought back the feelings of intense fear of the unknown. Today I feel positive and hopeful that the MRI will bring us good news. Timmy is an amazing, beautiful little boy and we love him so much. I want and need him to be well. I know that he can grow up to be somebody special someday.
Thank you all for your messages, support and prayers. I will update after we see Timmy's doctor and get the results of the MRI.
Love, Susan & Family
Saturday, April 16, 2005 9:17 AM CDT
Dear Everyone,
Last night on the advise of the nurse practitioner at Children's Hospital we took Timmy for an evaluation to Monmouth Medical Center. Dr. Todd in the Pediatric Emergency Room saw some new neurological changes in Timmy and told us to go back to Children's Hospital right away.
We arrived at Children's Hospital at 10PM last night. After being evaluated in the Emergency Room and having a CAT Scan some concerns were noted about the size of Timmy's tumor. Timmy was admitted to the Hospital. He is currently back on decadron to help control his symptoms of slurred speech and difficulty walking with his right leg. We are awaiting to meet with the neuro-radiologist, who will most likely have an MRI done to get a better idea of what is happening.
Timmy is very frightened right now and hates being back in the hospital. I hope that we will get some answers soon and be able to head back home. Please keep Timmy and our family in your thoughts and prayers. We really need them right now. I will update as soon as I have more information.
Love, Susan
Friday, April 15, 2005 10:46 AM CDT
Dear Family & Friends,
Timmy got the go ahead from the doctor to start Round #2 of Temador. His blood counts went up enough in a weeks time to make the difference. I found myself being quite happy when the doctor gave us the go ahead. It's strange how life has changed. Timmy can do chemotherapy and that makes me happy. I don't know if I will ever get use to our "new normal" way of life. Timmy's doctor again was very happy with his strength and progress. He said Timmy was his "patient of the day".
Unfortunately, our good day yesterday was short-lived. Timmy had a very restless night. He woke up with a headache and slurred speech. He had a hard time trying to tell me what he wanted to say. His right side also seems somewhat weaker. This all upset him very much. I put a phone call into the nurse practitioner at Children's Hospital. They told me to keep an eye on him and if his symptoms continue or his headaches get worse then we must bring him back in.
As the morning goes on Timmy seems to be feeling better. I will be checking in with the nurse practitioner later on in the day to give her a Timmy update. If all goes well Timmy will be starting his chemotherapy tonight.
All these ups and downs are so difficult for our family. We have so much hope for Timmy. We have just begun to fight this battle. I am hopeful that tomorrow will be a better day and we will all enjoy the sunny, beautiful weekend ahead. As always, please keep Timmy in your thoughts and prayers.
Love, Susan & Family
Tuesday, April 12, 2005 1:55 PM CDT
Dear Family and Friends,
I am happy to write that Timmy continues to do very good these last few days. Timmy's tutoring is going so well! He anxiously waits by the door each afternoon to greet his teachers Mrs. Silverstein or Mrs. Hoadley. He is handling the school work just fine with just a little short-term memory problem. I have tried to keep his activities low-keyed lately to try to keep him healthy, but he has been feeling good and just wants to play.
This weekend Timmy spent a lot of time playing outdoors. On Sunday, his teacher Mrs. Lettieri came to visit and brought him a cool dinosaur from Florida. He also got a great lesson on dinosaurs that day. Timmy also had his friends Marianna and Chloe over to play. Being outdoors is so good for him. He gets alot of exercise and some healthy color in his pale face. He always sleeps so well after a few hours outside.
Timmy went to physical therapy yesterday and did very well. He worked out on alot of machines and is definitely building up strength and endurance. He is now able to go up and down the stairs by himself.(with us always nearby) This is something he has not been able to do for a long time.
Last night I took Timmy to visit all his instructors and friends at Middletown Taekwondo. Timmy's friends were thrilled to see him and asked him so many questions. I was very happy to hear Timmy's answers because they were accurate and positive. Timmy understands whats going on with him and is looking to the future, to coming back to karate someday. I was also thrilled to see my friends whom I have missed very much. Thank you for all the hugs and words of support and encouragement.
Thank you to Mrs. Fitzgerald from Village School for the wonderful box of dinosaurs you gave to Timmy. He is enjoying playing with them. Also, thank you to the Deliso family for the Air Force One hat from Washington D.C. It was wonderful to see all of you. Thank you for thinking of Timmy.
The last few days Timmy has been in good spirits. He continues to slim down and get stronger. I have also noticed in the last few days that his right hand tremor has decreased alot. I am excited about this because it just has to be a good sign, a sign of healing.
We go back to Children's Hospital on Thursday for the usual blood tests. Hopefully Timmy's blood counts will be better and we can start the chemotherapy again. I will update in a few days.
Love, Susan and Family
Friday, April 8, 2005 3:35 PM CDT
Dear Family and Friends,
We took Timmy to see his Oncologist yesterday at Children's Hospital. Unfortunately, Timmy's blood counts (WBC, ANC and platelets) are still to low to start his chemotherapy. Timmy's doctor said that his blood counts are on their way up. His body must be strong enough going into this chemo round so the next recovery period will not be prolonged. He also is dropping his Temador dosage from 230mg to 170mg. We are very disappointed that he is not starting chemo again, but the doctor reassured us that he is not worried and is fine with this right now. We must have trust and faith in our doctor to get through this.
As for the rest of his visit, the doctor was still pleased with Timmy's progress. His overall strength is very good. Timmy was able to hop on his left foot, but not on his right. The tremor remains the same.
Timmy's doctor has always liked the different police hats that he has worn to see him. This visit Timmy picked out an NYPD hat from his collection and gave it to his doctor. Timmy's Oncologist is a wonderful man. He is always positive, kind and when need be sympathetic. He always talks directly to Timmy and asks him if he has any questions. When Timmy gave him the hat, he put it right on and wore it through the rest of our visit. He made Timmy very happy.
Otherwise, it has been a good week. The weather has been beautiful which has allowed Timmy to be outside more. He is playing baseball, basketball and scaring the heck out of me by riding his scooter down our driveway.
A special thank you to Middletown Taekwondo for sending Timmy a big box of treats from The Popcorn Factory. Thank you for thinking of him. He really misses all of his instructors and friends and plans on still becoming a black belt some day.
Also, thank you to Sargeant Eric Chappell of the NYPD for the awesome box full of different NYPD matchbox type vehicles and T-Shirt. MaryPat and TJ delivered them to us today and he is having alot of fun playing with them.
We go back to Children's Hospital next Thursday again for more blood tests. I hope to keep Timmy happy and healthy until then. I will update in a few days.
Lots of Love, Susan and Family
Monday, April 4, 2005 9:48 PM CDT
Hi Everyone,
It has been a very quiet couple of days around here and Timmy is feeling very good. I have kept Timmy's activities low-keyed in order to try to keep him healthy and allow his blood counts to recover. Hopefully when we see the doctor on Thursday, we will be given the okay to start his chemotherapy again.
As much as the chemotherapy makes Timmy sick, I want him to be on it as often as possible. I want the chemo to do its job and stop, shrink or destroy this ugly monster growing inside Timmy's head. When he's off the chemo to long I worry about what is going on inside his head. I don't want this tumor to have any time to grow. His treatment must be as aggressive as possible.
This weekend we had a visit from Timmy's cousin Cody. Cody is 23 yrs old and is a Seabee in the Navy. Cody grew up in Oregon and Timmy has never met him. Timmy loved having him around. They had fun playing with Timmy's remote-control army tanks, trying to run each other over. They were laughing alot and had so much fun. Thank you Cody for being so good to Timmy. You really made him happy. It was wonderful to see you again and please be safe in your travels around the world.
Today, Jay and I went to Timmy's school to meet with the Child Study Team. The Child Study Team is responsible for evaluating a child who may need special education and related services. I anticipate that Timmy will have home instruction for the rest of the school year and through the summer. It is so important that he stay with his friends at his grade level and go to 4th grade in September. Timmy's emotional well being will have a great impact on his physical recovery. He needs to be with friends and his friends need to be with him.
We have started the process of having a "Individual Education Plan" put into place for Timmy. We need to plan ahead so everything will be in place for Timmy when he returns to school. In the meantime, I hope to bring him in for some visits to his class and to a pizza party his teacher and classmates want to have for him.
We go back to Children's Hospital on Thursday for a follow-up visit and more blood tests. I will update everyone on how it went by the end of the week.
I am happy that Timmy is feeling good right now, but please continue to think good thoughts for Timmy and keep him in your prayers.
With Love and Thanks, Susan
Thursday, March 31, 2005 9:36 PM CST
Dear Family and Friends,
It's been a pretty good week for Timmy. He has been off the steroids for nine days now. I have noticed some of the puffiness in his stomach and face decrease. I have missed his skinny little face and body. He is even having some hair regrowth. Hopefully, pretty soon, he will be back to looking like his old self.
Physical therapy went very well this week. Timmy continues to work hard and get stronger. He was kicking soccer balls pretty hard and far. I was afraid for the safety of the other patients. I think that soon the therapists will have to take him outdoors to kick the ball. It's great seeing him do so well and have fun.
Speaking of fun, Timmy had four of his friends over on Wednesday. It was a beautiful day so the boys played outside for a long time. Timmy kept up with his friends very well with just a few sit down breaks once in awhile. Being with his friends is truly the best medicine for him.
We went to Children's Hospital today for our follow-up visit with Timmy's Oncologist. When you get to the Oncology Clinic you must register first. Timmy always gets an ID band on his arm. After you register you go right to triage where a nurse takes Timmy's blood pressure, temperature, weight and any complaints. After that he is sent to the laboratory for bloodwork. Usually, the technician manages to get blood from Timmy in his arm or hand. Sometimes they do a finger prick. Today, the technician had trouble getting blood from the vein in his arm. He kept jiggling the needle around in Timmy's arm, pushing it in and out. Jay and I were cringing but Timmy was quiet and made a brave face until finally the technician got his blood.
After everything is done we must wait in the waiting area for the doctor or nurse to come and get us. Timmy's doctor was very pleased with how well Timmy looks and walks. He was happy that he was now off the steroids. Timmy's leg strength has increased but the strength in his arms have "doubled" since the last time he saw him. This is such good news.
We spoke alot about Timmy's tremor. The doctor calls it a "movement disorder". The doctor does not think the tremor is very bad. He always asks Timmy if the tremor bothers him. Timmy always says no. The tremor is mainly in his right hand and leg and Timmy is left-handed. The doctor called a neurologist while we were there to discuss medication to help him control the tremor. Both doctors still agreed that it would be best not to medicate him because it does not bother him and most of the medicines have sedation as a side-effect. I can only hope that in time that this tremor will get better.
The only bad news is that Timmy's bloodcounts are extremely low. Because of this, he cannot start his chemotherapy now. We must return next Thursday for more bloodwork. If his counts are still low, the doctor will lower the strength of his chemotherapy medication. Overall it was a good visit. I hope that Timmy will be able to stay healthy this coming week and recover from his low bloodcounts. It's important that he continue on schedule with his chemotherapy treatments.
I will update in a few days.
Love, Susan and Family
Sunday, March 27, 2005 2:56 PM CST
Dear Family and Friends,
Timmy has been feeling good the last few days. He has been off the steroids for five days now. The tremor in his right hand and leg are definitely worse off the steroid. I notice and worry about the tremor all the time, but this sweet, easy-going child doesn't let it bother him or get in his way at all. He really amazes me!
Timmy worked very hard at physical therapy on Friday. His therapists always give him a good work-out but let him have some fun too. Timmy was a brown belt in karate before he became sick. The girls had him practicing his karate kicks against a huge ball. He was really enjoying himself. Thanks Jen, Jyo and Jane for all you do for Timmy. You are truly the best at what you do.
On Saturday, Timmy had his best friend Sarah over to play. Timmy and Sarah spent alot of time together in 2nd grade and through the summer. They played for about 3 hours inside and outside and had so much fun. Sarah worries about Timmy so much and watched out for him. Timmy's friends have been so good to him. They understand that he is sick and different now, but they still treat him the same. I thank all of their parents for doing such a great job raising their children with kindness and compassion.
We are enjoying a quiet Easter Sunday at home today. Because of spring break there will be no school or home-instruction this week. We have an appointment at Children's Hospital on Thursday for a follow-up visit and bloodcounts. If Timmy's bloodcounts are good, I expect he will be starting his chemotherapy again as soon as Friday.
Well Timmy got the biggest and best Police hat he could ever hope to get. A Policeman's motorcycle helmet!
Thank you so much to Karen Kurtz and her students at St. Paul's School. Thank you to Karen's friend, Police Officer Rich Liquori of Oradell, NJ who gathered together this helmet and at least ten more police hats, stickers, patches and a stuffed police bear for Timmy.
Timmy was shocked when he saw the helmet. He tried to put it on right away, but it was much too heavy. Timmy loves it and now probably has the biggest police hat collection in the world. (See new pictures)
Thank you also to my friends who sent cookies, candy and an Easter basket to Timmy. It occurred to me today that it has been four months since Timmy has become sick. The support and love from our family and friends continues to keep us strong and get us through each day. I have heard it a few times that it is Spring now, a time for new beginnings. I hope and pray for new beginnings of health and happiness for Timmy and our family.
Much Love and Happy Easter, Susan and Family
Wednesday, March 23, 2005 8:43 PM CST
Dear Everyone,
Timmy continues to feel very good these last few days. He even went outside yesterday to try to shoot some hoops and ride his scooter. He is one day off Decadron and was a bit more fatigued today. Hopefully Timmy will be able to handle coming off the steroids this time. He has been on them much to long.
Timmy's home schooling did not start until today. He was so excited that he greeted his teacher at the door. Mrs. Silverstein worked for an hour on reading, spelling and comprehension. He had some difficulty, but hopefully as he continues to work again, it will get easier for him. I am very happy because this is a step in the right direction to help bring some normalcy back into his life.
Well we have our second opinion and just as we hoped, it concurred with the doctors at Children's Hospital of Philadelphia.
Timmy's dad went to Memorial Sloan Kettering by himself today to meet with a prominent Pediatric Oncologist at 8:30am. I stayed home with Timmy so not to overwhelm him with more long trips, doctors and talk about his tumor.
I will sum up the important issues discussed:
- Our doctor at Children's Hospital is considered to be a
leading authority on pediatric brain tumors. Children's
Hospital is considered to be a leading, prestigious
institution for treatment of brain tumors.
- The doctor at Memorial Sloan Kettering had a
Pathologist and Radiologist review Timmy's biopsy
slides and MRI studies. Their diagnosis agrees with
Children's Hospital. Timmy has a grade 2 fibrillary
astrocytoma.
- Their treatment plan for this type of tumor is the same
as what is being doing done by the doctor at Children's
Hospital. Temador for the next 10 months. Five days
on and 23 days off.
- In his opinion, Temador has been shown to be clinically
effective in arresting the growth of this type of tumor.
- The tumor as stated by Children's Hospital is diffused.
The tumor is entwined within the nerves of the thalamus.
This makes surgery practically impossible because you
cannot remove this type of tumor without damaging
nerves. This would cause severe neurological problems.
- Other therapies and approaches that could be used would
not be introduced until after the one year regimen of
Temador.
- Timmy will need Neuropsychological testing. This assess-
ment will help determine what effect the tumor has had
on him (tremor, right-sided weakness) and how to deal
with it.
The second opinion has reassured us that what needs to be done is being done. We feel confident with the course of treatment that lies ahead for Timmy. It will be a roller coaster ride of up and downs. We will now focus on helping Timmy to be strong, happy and bring as much normalcy back to his life as possible. With the help and support of our family and friends we can do this. Please continue to keep Timmy in your thoughts and prayers.
With Love and Thanks, Susan and Family
Sunday, March 20, 2005 8:25 PM CST
Dear Family and Friends,
I am happy to write that Timmy had a good weekend. On Saturday, since it was a beautiful day, Timmy spent a lot of time outside. He helped his dad clean up the back yard by picking up sticks. Timmy also got to relax in front of a fire we built in our chiminea. He had fun throwing sticks into the fire. He was so happy to be outside. When he came in his cheeks were very red. He looked so healthy!
Today, I invited two of Timmy's friends over to play. Timmy was so excited to see his friends Osiris and Anthony. The boys played video games, played with remote control tanks, watched TV and just laughed. It was wonderful to hear Timmy's laughter coming from the room. He was so exhausted he fell asleep very early tonight.
Timmy has two more days on .5mg of Decadron (steroid), then he comes completely off again. Ever since he has been back on the steroid he has not been sleeping during the day. His tremor is a little better and he has been feeling good. I hope that he has gotten through the worst of the brain swelling and will do better this time off the steroids.
Timmy has been out of school now for almost 3 1/2 months. On Monday he will start having home instruction. A tutor will come to our house for one hour each day in the afternoon. Timmy seems to be excited about this. It will be so good for him to start working his mind again.
To all of Timmy's new friends at St. Paul's Interparochial School. Thank you for all the cards you made for him. He loved reading them. Please stay in touch, he would really like that.
Thank you Miss Diane from Village School for the birthday present you sent to Timmy. He loved the boxes of baseball cards. They will surely keep him busy. I appreciate your thoughtfulness and encouraging messages to Timmy.
To Connie Y. Thank you for your wonderful messages and words of support. They mean alot to me and Timmy. I think you are an amazing woman and we look forward to meeting you someday.
We have an appointment to meet with a pediatric neuro-oncologist on Wednesday at Sloane-Kettering in NYC. He will be our second opinion. He already has Timmy's MRI and pathology slides and reports to review. Timmy may not need to be at this appointment. Hopefully either Jay or I can just go to speak with the doctor. I will find this out tomorrow. We have complete confidence in our doctors at Children's Hospital, but we need to get a few more opinions. We need to know that we are doing everything possible and getting the best medical care there is for Timmy. I will update in a few days.
Love, Susan and Family
Thursday, March 17, 2005 8:28 PM CST
Dear Friends and Family,
Just a quick update. Timmy has been starting to feel better the last couple of days. He is up and walking around and going to physical therapy. He is still sleeping a few times a day. His physical therapists were truly saddened to see Timmy's strength decrease and his tremor get worse after he had made such progress.
We were told by Timmy's nurse practitioner that the swelling around the brain is at its greatest right now and this would cause his symptoms to worsen for a while. Being back on the steroid has helped a little.
Well I have learned now that Timmy's monthy chemotherapy treatments will make him very sick. The chemo is killing the cancer cells. Its a war against this cancer and we must help Timmy be strong and fight this. Seeing this for the first time was heartbreaking. We now know what to expect the next time. There are so many ups and downs we will have to deal with.
I would like to say thank you to Timmy's cousin Kelsey from Oregon. Kelsey sent Timmy a box full of police things from the Josephine County Sheriff's Dept. in Oregon. Timmy's story has now reached the Pacific NorthWest.
Thank you Michelle Mabry for always thinking of me and helping to take care of me. I appreciate all the prayers you continue to say for Timmy. Thank you Laura and Erin for the fantastic Vtech educational computer for Timmy's birthday. We are both enjoying it! Thank you Tina H. for the wonderful birthday gifts for Timmy and the gift card for our family. You are so sweet, kind and generous. Thank you Steve for the blown-up picture of all the boys with their short haircuts.
A special hug and thank you to all my friends who continue to be there for me when I need them. Sue, Maryalice, Laura, Cathy, Tara, Elizabeth, Aunt Liz (Timmy's wonderful Godmother). Thank you also to Mrs. Gibadlo, Mrs. Lettieri and Mrs. Silverstein for your caring and support.
I will update in a few days.
Love, Susan and Family
Monday, March 14, 2005 7:51 PM CST
Hi Everyone,
Well the emotional rollercoaster ride continues. On Friday the effects of the five days of chemotherapy hit Timmy very hard. He became so tired and weak he could barely walk or get out of the chair. He was very nauseous and vomited a few times. Timmy is also sleeping alot during the day. We were told that this could happen up to 12 weeks after radiation. It's called somnolence syndrome. It can last from a few days to a few weeks.
On Saturday he had a birthday party to go to at the movies. He really wanted to see his friends again and the movie "Robots". I managed to get him there but he was so tired and dozed through some of the movie. When he came home he slept for the rest of the day. Thank you Chris P for inviting Timmy to your birthday party. He really loved being with you and his friends again.
Well Sunday was not a good day. Timmy was weak and tired and later in the afternoon I found out that he had a fever of 102.3. Thats high for a child on chemotherapy. We called the Oncologist Fellow at CHOP and we were told to bring him the the Emergency Room right away for blood tests.
We took Timmy to Monmouth Medical Center and they immediately took him in. They put him in a private room to keep him away from all the other sick children.
The most wonderful, kind and compassionate doctors and nurses work in the Pediatric Emergency Room there. We were so fortunate to have Dr. Todd and Nurse Brenda again. I say again because on the night of November 27, 2004, Dr. Todd was the one who discovered Timmy's brain tumor. Nurse Brenda was also there that night and helped take great care of Timmy and us. They told us that they will never forget that night, they all cried for us and have always been thinking of Timmy.
A complete work-up was done on Timmy. Bloodwork, chest x-ray, and strep and influenza testing. All came out negative. Some of his bloodcounts are low though because of the chemotherapy. Timmy received an IV antibiotic for the fever and a virus he picked up. He was cleared to leave and we got home at 1 AM in the morning.
Thank you to all the staff at Monmouth Medical Center for caring so much and being there for us. It comforts us to know that great medical care is so close by when we need it for Timmy.
As of today, Timmy still has a low-grade fever but has been walking around a little. His doctors at CHOP have placed him back on a small dose of steroid for the next eight days to help control some the symptoms he has been experiencing.
Its so hard to make such good progress and than take steps backwards. I hope that Timmy will start feeling better over the next couple of days. He continues to be strong and brave through all of this. I will update at the end of the week.
Love, Susan and Family
Thursday, March 10, 2005 8:20 PM CST
Dear Family and Friends,
Well the news is good, it's a good start. Timmy's MRI revealed a great deal of swelling around the tumor. The swelling is caused by the radiation. It's difficult to get a good read this early after radiation because of the swelling. What we did find were signs of the tumor dying in three different areas. What we saw were white spots of different sizes (dime, quarter size) within the tumor. This is called necrosis. The doctor believes that the necrosis will continue over the next several months. He also said that this was a typical response of a tumor after the initial chemotherapy and radiation. Hopefully at his next MRI in 3 months there will be less swelling and continued necrosis within this tumor. Our hope is that the tumor will shrink. There were absolutely no signs of the tumor spreading.
Timmy's doctor was very pleased with his continued improvement in his walking and general body strength. He said that these improvements are a good indication that the tumor is responding to treatment.
Timmy is now completely off steroids. He also took his last dose of chemotherapy tonight. Timmy has tolerated the chemotherapy well this week only with slight morning nausea and general fatigue. We did not get his blood test results back from today. We will have them tomorrow.
Our next visit will be in three weeks. During this time Timmy's body gets a chance to recover from the chemotherapy before we start the next round. We will also take this time to show his current MRI to a few more doctors.
It has been such a tiring, stressful day for all of us. We are so glad to be home with Timmy. Thank you so much to everyone for your continued support of Timmy. He is so lucky to have so many wonderful, loving people care about him.
Love, Susan and Family
Wednesday, March 9, 2005 6:31 PM CST
Hi Everyone,
We are in our hotel room in Philadelphia unwinding after a long day. I would like to give everyone an update of our day.
Timmy's follow-up visit with his radiologist went well. Everyone, his technicians and doctors were thrilled to see Timmy walking. The doctor found Timmy's arm and leg strength to be stronger and said "clinically" he looked good. He also said we must wait to read the MRI to get a better indication of where Timmy stands.
As a precaution today we did not let Timmy eat, just in case he needed sedation for his MRI. There was alot of preparation involved in getting ready for the MRI. A complete history, EKG, listening to his heart and lungs and of course the IV in the hand for the contrast dye Timmy would get during the MRI. Timmy is so use to needles, he did not even flinch.
Timmy's dad went into the MRI room with him and I am proud to say that Timmy made it through the 45 minute MRI with no sedation. His dad thinks he even fell asleep. We were so proud of him for being so brave.
Much to our surprise when we got to our hotel room we had been upgraded to a suite. Two bedrooms, three TV's, two bathrooms, living room and kitchen. Timmy is thrilled to have his own bedroom and TV.
Well it really has been a good day. Everything has gone well. I hope and pray all the good will carry on into tomorrow.
To Karen and all her students at St.Pauls Interparochial School. Your message to Timmy and our family was so special and uplifting. The thought of 300 children praying for Timmy is amazing and gives us strength. Thank you so much. Maybe you can include him in morning prayer tomorrow too. That is the day we will get his test results. I will update on Friday.
Love, Susan, Jay and Timmy
Sunday, March 6, 2005 4:45 PM CST
Dear Family and Friends,
It has been a very busy week with so much going on and alot to write about. Timmy has been very tired this week but he still went to physical therapy all 3 days and worked very hard. He continues to have a tremor in his right hand and one I have recently noticed in his right leg. When we spoke to his doctor about this he said he expected there to be some neurological problems as Timmy came off the steroids. The steroids were controlling many symptoms that the tumor was causing. I hope to have a better understanding of all this after his MRI.
Timmy was very excited all week looking forward to his birthday party on Saturday. He has missed his friends so much and could not wait to see them.
Timmy's party was fantastic. There were so many wonderful moments and surprises for him. Timmy did not know that all the boys who came to his party cut their hair very short to show support for him. He was very surprised and the boys looked great! The love and support from all our friends continues to keep us going. Thank you Sue, Phyllis, Steve and all of the parents and boys (at least 15 of them) who took part in this. Thank you Maryalice for the photo album showing all the before and after pictures of each boys haircut. On the front of the album it read:
"I'm cutting my hair so it's plain to see
It's what's inside not outside that makes me me
I want you to know that it is what you do
Not the hair on your head that makes you you"
The next surprise at Timmy's party was the arrival of the New Jersey State Police's "Teams Unit Central". SFC Jeff Algor-SWAT Team Supervisor and a number of other Troopers. They arrived with two awesome vehicles to show to the children. One was a "BearCat" which was big bullet-proof armored truck. The other was a SCUBA truck. The Troopers showed the children all of the equipment and gave them tours of each vehicle. The children and the parents also got to do some target shooting in our backyard with different types of guns. It was a memorable experience for everyone. Thank you to all the Troopers from "Teams Unit Central" for doing this for Timmy. You made it such a special birthday for him.
My next thank you is for Lt. Anthony Sempkowski of the NJSP. Lt. Sempkowski is the person who made all of this happen for Timmy. He is a wonderful, kind man who has been very supportive of Timmy and our family. Lt. Sempkowski came to the party with incredible gifts for Timmy. The best was a baseball signed by every member of the 2004 Yankee Team. Also baseballs signed by Steve Karsay, Felix Heredia and Clete Boyer. He also gave Timmy a Trenton Thunders jersey signed by Kenny Lofton and a MOOSE baseball cap. Timmy and the other children sat there stunned with their mouths wide open as Timmy was given these gifts.
Thank you so much to all the children for the great birthday presents you gave Timmy. Thanks to all the moms who helped me make this party run smoothly. I could not have done it without all of you.
Thank you to the teachers at Middletown Village School for the gift basket with gift certificates to the movies and restaurants. We appreciate it so much.
Thank you MaryPat and T.J. for the beautiful, handmade personalized Yankee shelf you made for Timmy. Timmy loves it and I know alot of love went into making it.
Thank you Connie, Billy and family for the box full of gifts from the Cataret, NJ Police Dept. Timmy loves the toy police vehicles and now has more hats and patches to add to his collection.
Thank you to Jay's family and mine for always being there for us and for your love and support.
Tonight Timmy will start his higher dose of chemotherapy (Temador). I hope he will tolerate it well. He will also take nausea pills three times a day all over the next five days. I must admit to being anxious and somewhat scared as Wednesday's MRI approaches. I would give anything to know the results already and what Timmy's prognosis is. We will leave early Wednesday for Philadelphia. Timmy has a follow-up visit with his radiologist in the morning and his MRI in the afternoon. We plan on spending the night at a Marriott Residence Inn. We met wonderful people there last time who have invited us back at a "friends and family" rate of $79 a night. Thats a great rate in Philadelphia. On Thursday we will meet with Timmy's Oncologist at 2PM for a follow-up visit and the results of his MRI.
My next update will probably be on Friday. I will do my best to get the test results out to everyone as soon as possible.
As always, and especially this week, please keep Timmy in your thoughts and prayers.
Love, Susan and Family
P.S. I have posted some party pictures and will add more
when I get them.
Tuesday, March 1, 2005 1:57 PM CST
Hello Everyone,
It was a quiet weekend around here. Timmy has been practicing walking around the house alot. For months he would just sit in a chair all day. Now he is surprising us by getting out of the chair and showing up in different rooms. He thinks its so funny when we act surprised to see him. I am amazed at the progress he has made at physical therapy.
Timmy seems to be tolerating the steroid drop to .5mg every other day. He is much more fatigued lately and his appetite had decreased alot. The doctor said this would happen as he went down on the steroids. There is also the possibility of fatigue from the radiation, which can happen weeks to months after treatment. I am sure in a few weeks Timmy will drop those extra pounds he has put on from the steroids and start looking like his old self again.
Well I tried to get Timmy out to play in the new snow fall today, but he was not interested. He said it was too cold to go outside. Timmy likes warm weather and the beach much better.
Today is the day we officially celebrate Timmy's Leap Year birthday. Happy 9th Birthday Tim! We all love you so much and look forward to a lifetime of celebrating many more birthday's with you. I will update this weekend.
Love, Susan and Family
Friday, February 25, 2005 5:04 PM CST
Dear Family and Friends,
We saw Timmy's Oncologist at Children's Hospital yesterday. Timmy and I planned for a week his walk down the hall and into his doctors office. We were so excited about this and we were not disappointed. When his doctor saw him he said "HOW WONDERFUL" and Timmy was very proud and happy.
Overall, Timmy's strength in his arms and legs has improved. His neurological exam was good. The doctor has dropped his steroid to .5mg every other day with plans to be off of it in 2 weeks at our next visit. As for Timmy's hand tremor, the doctor does not want to put him on medication again. Since the tremor does not bother Timmy and he is using the hand, he prefers Timmy just work on strenghtening it right now.
Timmy's bloodcounts have recovered. Because his bloodcounts were good he will be starting chemotherapy again. This time the course of treatment is 230mg of Temador five nights a week and then off for 23 days. Timmy was on 90mg of Temador before, so this is a big increase. His treatment will go on like this for many months. Timmy's doctor said this is a standard course of treatment for his tumor type.
Timmy's MRI on Wed, March 9 will reveal how effective the Temador and radiation have been. Surgery may be considered this time if the tumor has shrunk enough and can be safely removed. It will be presented to the Neurosurgeon again for evaluation. We also plan on having a second and third opinion at Columbia Presbyterian and Sloan-Kettering in New York. We will meet with Timmy's Oncologist on Thurs, March 10 for the MRI results. Everyday I wonder how we will get through another day of waiting. But, we do and March 10 will soon be here.
I have been very fortunate to have met two wonderful women who have become a great source of help and inspiration to me. Laura and Erin Puck are a mother and daughter who created a foundation called Toys Calm. Erin is a brain tumor survivor. Toys Calm donates laptop computers, toys, videos, books and games to hospitals for children with serious illnesses.
Yesterday, Laura and Erin accompanied us to Children's Hospital with their SUV filled with large bags of toys for the pediatric oncology patients at the hospital. They also donated 3 brand new Dell laptop computers to the children's oncology floor so the children can stay connected to their worlds. These laptops were donated with a plaque on it saying "Toys Calm Honors With Love Timothy Pauxtis". (see new pictures)
Thank you Laura and Erin for honoring Timmy this way and for helping calm the fears of many children at the hospital. Their website is www.toyscalm.org.
Thank you to Elizabeth and Cathy W. for the wonderful dinners this week. Thank you to Sue Griffin who has come into my life with kindness, caring and support. I appreciate your friendship and all the help you are giving us. Also, thank you to the Middletown Village PFA for their generous donation to the Children's Hospital Foundation in Timmy's name.
Well as some of you may know already, Timmy has a Leap Year birthday. He will be turning 9 years old. (or 2 1/4 yrs old). Since his bloodcounts are good we are having a party for him. It will be the first time he will see some of his friends in many months. He really is excited and I have a lot of work to do.
I will update early next week.
Love, Susan and Family
Monday, February 21, 2005 8:58 PM CST
Hi Everyone,
Just a quick update. Timmy continues to do well. We were able to do two things on Timmy's "to do" list this weekend. We (Mom, Dad and Jason) took him to a movie and then out to dinner at his favorite restaurant Steak & Ale. Timmy had a great steak dinner followed by his favorite dessert, 1001 chocolate chip cake!. His doctor would not have approved of that cake, but it made Timmy very happy.
Timmy worked hard at physical therapy again today. His occupational therapist tested his arm strength and found a definite improvement since we have started.
We are going to Children's Hospital on Thursday. Its been two weeks since Timmy has seen his doctor and had his blood counts checked. I can't wait for his doctor to see the happier, stronger Timmy.
I am so thankful that I have this Caringbridge website as a place to thank so many people that have been so good to Timmy and our family.
Thank you to Bob, another friend from long ago back in Brooklyn. Bob lives in Texas now and sent Timmy a police tee shirt, sweatshirt, SWAT bear and a patch from the Bastrop County Sheriff's Office in Texas. Timmy's police collection continues to grow. What a great hobby this has become for him. Thank you also to Kathleen for our great dinner tonight. It was so good to see you and talk to you.
I will have much more to write about at the end of the week. Please continue to keep Timmy in your thoughts and prayers.
Love Susan and Family
Friday, February 18, 2005 7:18 PM CST
Hi Everyone,
Well it continues to be a good week around here. Timmy is working very hard at physical therapy and having some fun too. His therapists have him shooting baskets and kicking balls. He has hit quite a few other patients with the balls and keeps his therapists running. Timmy thinks all of this is so funny and laughs so much. I have not heard him laugh in so long. It's wonderful to see him happy and be a little boy again. I miss those days when Timmy could laugh and did not have any worries. His laugh was contagious. Everyone in the place was laughing too.
Timmy continues to tolerate the .5mg of Decadron daily. I hope he will be completely off the steroids after his next visit with his Oncologist. He is no longer taking medication for his tremor. The medication was causing him to throw up and have very bad dry mouth. I hope that in time, with strengthening of his arm muscles, his tremor will get better.
On Wednesday, Timmy had a planned visit from three New Jersey State Troopers and the Deputy Chief of Middletown. (see new picture) He was very nervous about seeing them. Lt. Anthony Sempkowski, Trooper Richard Gilman, Trooper Richard Knochel and Deputy Chief Joseph Braun came in full uniform and parked two police cars right outside our house. They introduced themselves to Timmy and made him feel very comfortable. Much to Timmy's surprise the Troopers gave Timmy two Yankee baseballs autographed by Derek Jeter and Alex Rodriguez. WOW, what a great gift. Timmy can't wait to show them off to his friends.
Thank you Lt. Sempkowski for arranging this visit for Timmy. Thank you also for the promise to be there for us 24/7 if we needed anything (including a ride to Children's Hospital). I look forward to Timmy spending more time with all of you. I must also thank Deputy Chief Joseph Braun for his help in obtaining a handicap parking permit.
Thank you to my friend Cathy for all your help in getting my parking permit. To Lori for the great dinner. Liz, Donna and Debbie for being there for me, listening to me and comforting me.
Thank you for all the wonderful messages, especially from all the New Jersey State Troopers. I continue to read them to Timmy everyday. I will update again early next week.
Love, Susan and Family
Tuesday, February 15, 2005 11:03 AM CST
Dear Family and Friends,
It's a beautiful Tuesday morning and Timmy is sitting at the computer playing games. He seems much happier and alert lately. I think the physical therapy is making him feel good about himself. His PT went great yesterday. It seems Timmy's right-handed tremor gets worse with fatigue. The therapist thinks if we build up his arm strength it may help lessen the tremor. Also, much to my surprise they let Timmy walk alone. It was wonderful! He is working so hard and is very sore, especially in his legs. He has four more sessions before he sees his Oncologist on February 24th. I can't wait for the doctor to see Timmy walk into his office. I know he will be thrilled too. I hope all these steps Timmy is taking continue to bring him to a stronger, healthier and happier place.
Valentines Day was wonderful for Timmy. It was a day of many surprises. Mrs. Gibadlo brought over a shopping bag full of Valentines Day cards, candy and balloons from the whole school. Thank you Vivian and MaryPat for the cookies and Valentine gift for me. Sharon, your chocolate treats from England were a wonderful gift. Chocolate definitely makes Timmy and me feel better. Monica, thank you for a delicious dinner. What a feast you cooked for us. We all enjoyed it very much and will have leftovers for days.
Timmy also received a package from the Buckingham, PA Police Department. It was filled with tee-shirts, a hat, a CD album, bumper stickers and photo cards of 18 members of the Buckingham Police Force. Thank you Corporal Rob, Detective Robert and Officer Tim for the gifts and the wonderful encouraging letter you wrote to Timmy. He loved everything. I look forward to my son growing up and becoming a dedicated, caring police officer someday.
I will update in a couple of days to let you know how Timmy is doing. I look forward to sharing some more good news with you.
Love, Susan and Family
Friday, February 11, 2005 9:29 PM CST
Dear Family and Friends,
I am happy to say that it has been a pretty good couple of days for Timmy. I am so excited with how well his physical therapy is going. Timmy has become very popular over at the Bayshore Wellness Center. His two therapist are wonderful with him. They are working him hard to loosen up and strengthen his arm and leg muscles. They use stretchy-bands, balls, putty for his hands. They are helping him start to write again which he is doing very well. He uses various machines too. One he especially likes called TRAZER. Its a juke-box size video game where Timmy must follow the movements of the cartoon figure on the screen. Its great for balance and coordination. As I sit there watching him I truly believe that with hard work,Timmy will be strong again.
After physical therapy today Timmy asked to go out to eat. I was worried about bringing him into a restaurant and exposing him to germs. Timmy has not been out to eat in over 2 months so I decided to take a chance and brought him to the Perkins next door. It was pretty quiet inside and we talked, laughed alot and ate. Timmy even left the restaurant with a box full of free muffins given to him by the manager. I have found so much kindness and compassion in people when they see a sick child. Timmy and I both left the restaurant with smiles on our face.
Well the yellow Childrens Hospital "HOPE" bracelets have become very popular. There are so many people wearing them to show their support for Timmy. Family, friends, teachers and Timmys whole class are wearing them. If anyone is interested in wearing one please e-mail me and I will get one to you.
Thank you again to my friend Maryalice for always being there when I need you. To Sue G. for the great dinner and support. Julie for my escape to take care of me. Thank you so much to Mrs. Lettieri and Mrs. Gibadlo, Timmy's teachers who come every week to spend some time with him.
Please continue to keep Timmy in your thoughts and prayers and I will update early next week.
Love, Susan and Family
Tuesday, February 8, 2005 9:23 PM CST
Hi Everyone,
We saw Timmy's Oncologist at Children's Hospital today. We have a date. Timmy's follow-up MRI is scheduled for Wednesday, March 9. Exactly one month from today we will find out how effective the chemotherapy and radiation treatments have been. I am so hopeful for good results. I want this tumor to shrink. Timmy's doctor is cautiously optimistic. As of today he says Timmy is doing well. In his words "stable". He has lowered his steroids to .05mg a day (good news that Timmy is tolerating this). He has found slight improvement in his arm and leg strength. His vision is good. He is increasing his tremor medication because there has been no change.
Timmy has had a cough for over a week now. The doctor has put him on Bactrim to help clear it up. We also found out the Timmy's ANC (absolute neutrophill count) is low. This indicates that his body is at risk for infection. For the first time the doctor has advised us to avoid large crowds and try to keep sick people from being too close to Timmy. This should be a challenge since we need to go out for physical therapy 3 times a week. Our next appointment is in 2 weeks. The doctor told Timmy to work hard at his physical therapy because he expects to see him stronger next time. Timmy said he would.
I would like to say thank you to Rose. Rose is a wonderful woman I knew over 25 years ago back in Brooklyn. She has been living in Arkansas for a long time now. Rose contacted her Police Department and Sheriff's Office and told them about Timmy. We received a box full of gifts from them. A Search and Rescue jacket with a real badge on it. A TY bear, a Sheriff's patch, mug and all kinds of kids things. Thank you Rose for caring so much and doing this for Timmy.
To the Benton, Arkansas Police Department and Saline County Sheriff's Office. You made a little boy you don't even know very happy. Thank you for your kindness.
I will update in a couple of days to let you know how Timmy is feeling and about his progress with physical therapy. Thank you for all your messages. Timmy and I look forward to reading them.
Love, Susan, Timmy and Family
Saturday, February 5, 2005 9:54 PM CST
Dear Family and Friends,
Just a quick update because thankfully things have been quiet around here.
On Thursday we took Timmy for his physical and occupational therapy evaluation at the Bayshore Wellness Center. Timmy's OT's name is Jyo. She spent alot of time talking with me and evaluating Timmy's needs. She will concentrate on strengthening his upper body including fine motor skills and working with his hand tremor. Timmy's PT's name is Jen. She will help Timmy regain muscle strength/balance, etc in his lower body. They seem to work with more adults there but took an interest and liking to Timmy. He was very cooperative and was tired after almost 2 hours of therapy. The therapists will work together next time in order to shorten his time there. They don't want to overwhelm him. We will return 3 times next week.
Today we took Timmy to visit his grandparents in Toms River. They have not seen him since before he was sick. It was hard for them to see the physical changes in him. But Timmy was still Timmy to them and easy to love. We all had a good day together. It was nice to do something "normal" again.
I hope to see some positive changes in Timmy over the next few weeks. His body is still so puffy from the steroids. His leg muscles are very weak and he cannot walk by himself. His tremor remains the same. I worry so much about his "spirit". He misses his friends, school and karate so much. He remembers the things he use to do. He has become so quiet and seems sad. I hope that soon, someday, that all he wants will come back to him. He just needs some more time to get stronger.
We will be back in Philadelphia to see Timmy's oncologist on Tuesday. I will update with more information next week.
Love, Susan and Family
Wednesday, February 2, 2005 1:47 PM CST
Hi Everyone,
For the first time in over 6 weeks we are home. Timmy completed his chemotherapy cycle and last radiation treatment yesterday. Timmy did great with his last treatment and he got to bring his mask home with him. I really did not want it, but Timmy did. I think bringing it home truly puts an end to the treatments for him. We also had to say goodbye to alot of people who had become good friends. We were a support system for each other and I will miss them very much.
I would like to tell you about Gracie. Gracie is 6 years old and did about 5 weeks of radiation with Timmy, also for a brain tumor. Her family and ours became friends. Gracie finished her treatment days before Timmy and we said our tearful goodbyes. Yesterday, on Timmy's last day, Gracie and her Mom surprised us by coming to be with us for Timmy's last treatment. Peggy,what you did meant so much to us. Thank you and we will never forget what you did for us. I know we will always be there for each other.
Timmy also saw his oncologist yesterday. He is pleased with how well Timmy has tolerated his treatments. He said Timmy went through 3 difficult treatments at one time. Steroids, Chemotherapy and Radiation. Timmy's bloodwork is on the low side. He now goes into a recovery period where his bloodcounts should get back to normal over the next few weeks. When they do, an MRI will be done and chemotherapy will start up again. Timmy is so weak and tired. He is happy about being home but nervous about starting up physical therapy. He will be going for an evaluation at the Bayshore Wellness Center tomorrow. They do pediatric rehabilitation and occupational therapy there. I hope it all works out well there because I like that they are so close to home and Timmy and I need to be close to home right now. We will return to Children's Hospital next Tuesday for a follow-up visit.
I would like to say thank you so much to Mrs. L and Mrs. C and all the children in Timmy's 3rd grade class at Middletown Village School. The class made a beautiful friendship quilt for Timmy. (See new picture) The children worked so hard on it and it was beautiful. They each personalized a patch on the quilt. Timmy loved it and so did I! Timmy knows that his friends are still thinking about him and he needs to feel that connection to them.
Well it is good to be home but I am anxious as we start this new phase of treatment for Timmy. The physical therapy will be 3 times a week to start. This is good because it will keep us busy as we get through this waiting period.
As always, thank you so much to my family and friends for all you do for us. Please keep Timmy in your thoughts and prayers and I will update Timmy's webpage as often as possible.
Love, Susan and Family
Friday, January 28, 2005 7:18 PM CST
Hi Everyone,
It's Friday evening and the end of Timmy's last full week of chemotherapy and radiation. It's hard to believe that Timmy has gone through almost 33 radiation treatments and almost 6 weeks of continuous chemotherapy. On Tuesday his body will finally get a rest. His blood counts will have a chance to recover. I hope that Timmy with the help of a good physical therapist will start to get stronger soon.
Timmy did have his blood transfusion on Wednesday. It took about 3 hours and everything went well. I watched as this pale little boy had color brought back into him. His face turned bright red which made his beautiful blue eyes shine like they use to.
We will spend Monday and Tuesday in Philadelphia. We will see Timmy's oncologist on Tuesday and then we will go home. It will be so different not getting up each morning and driving to Philadelphia. I hope that Timmy will do well off all the treatments. His doctor said he will go back on chemotherapy in a few weeks and will probably be on it for at least a year. There are new drugs coming out that he may use. All of this depends on Timmy's next scan results.
Thank you to my brother Tom who has been there for all of us and did his share of driving. Maryalice, thank you for the rides and for being such a good, caring friend. Gracie, we miss you! Kelley, thank you for coming into our lives and caring so much. Most of all thank you for the wonderful messages that keep coming in. I read them to Timmy and he loves hearing them, especially the ones from the Police Officers. He looks forward to the day that he can meet all of you and take a ride in your police vehicles! I will definitely call when Timmy is stronger.
Lots of Love, Susan and Family
Tuesday, January 25, 2005 7:10 PM CST
Dear Family and Friends,
Its Tuesday evening and it is hard to believe that this is our last full week commuting to Philadelphia. Timmy has 5 radiation treatments left. He is continuing to get through them well.
We saw Timmy's oncologist today. He is happy that Timmy is tolerating the lowering of his steroids (no headaches or nausea). He has dropped his dose again. We started at 12mg a day and are now down to 1 1/2mg a day. This is great, because hopefully soon Timmy will begin to lose some the puffiness and muscle weakness that was brought on by high steroids. We spoke of starting a good intensive physical and occupational therapy program for Timmy as soon as his chemotherapy and radiation end. He needs to gain back muscle strength in his arms and legs.
I had noticed the last few days that Timmy seemed tired and pale. I found out today with his bloodwork results that his hemoglobin in low. Hemoglobin are the red blood cells that carry oxygen in the blood. This happens during the most intensive part of chemotherapy. As a result of this, after his radiation treatment tomorrow Timmy will be having a blood transfusion. This will be done in the Day Stay Area at Childrens Hospital and will take a few hours. Timmy's hands and arms are so bruised from multiple blood tests. I hope they can find a place to start this IV without causing him to much pain. Timmy continues to be so good throughout all of this and sometimes I think it hurts me more just watching everything he must endure.
February 1st will be our last day of treatments. Timmy will then be given a few weeks to allow his blood counts to recover. The oncologist said he will plan a follow-up MRI about 5 weeks from the end of his treatments to see the effectiveness of his current chemotherapy and radiation.
Thank you Sarah and Marianna for thinking of Timmy this weekend and wanting him to go sleigh riding with you. Being able to play with his friends someday soon will help him get stronger mentally,which is just as important as physically. We hope to see some of you guys real soon.
With Love and Thanks,
Susan and Family
Friday, January 21, 2005 6:55 PM CST
Hi Everyone,
It's Friday and we are home from Philadelphia. It has been a long week for all of us. On Tuesday, Timmy went in for his early 7 AM radiaton treatment. Timmy had a terrible time getting through his treatment because his mask was just too tight. He was so upset and for the first time could not finish his treatment. We were told that it would take days to remake his mask and that would further delay his treatments. We were ready to leave the hospital when Timmy's radiologist came up to us and said they would make the mask right now. We were so happy and thankful. The whole team, the doctor and technicians took Timmy into the CAT Scan room and spent about 45 minutes making the new mask for him. They said Timmy was so good and laid very still. They were able to do a very good job.
Later that afternoon we met with Timmy's oncologist. He is continuing to lower his steroids and sees an improvement in his walking. He may put Timmy on a new medication to help with his tremors, but would like to lower his steroids more first. Timmy's platelets and hemoglobin levels have droppped. This was expected to happen due to the ongoing chemotherapy and radiation. We repeated the bloodwork on Thursday and his counts actually went up. We were so happy, no transfusions.
Tim's radiation treatments went great for the rest of the week. The new mask is so much better. Only 7 more treatments to go!
I am happy to say that although Timmy is very tired his mood is good. He is playing video games with his brother, talking about going out to dinner and planning his birthday party.
I am so grateful for the good days. The days he laughs, plays and thinks ahead. He has been through so much for a child and I hope to see him get stronger physically and emotionally every day.
My son Andrew went back to college today. Thank you so much for all the driving you did to Philadelphia while you were home. I love you and am so proud of you. Again, thank you to everyone for their continued support in so many ways. I will update early next week.
Love,
Susan and Family
Monday, January 17, 2005 2:57 PM CST
Dear Family and Friends,
I just wanted to give you a quick update. Timmy had a rough weekend. He has been running a low grade fever. He is very weak and his tremors concern us. He has come down quite a bit on his steroids so hopefully this is the reason why. We will see his doctor tomorrow for bloodwork and to get some answers. We are in Philadelphia right now and are staying till Wednesday. Timmys IMRT radiation treatment was cancelled today because the machine went down. They had a blackout this morning and his machine short-circuited! We are going in at 7 AM tomorrow morning to use another machine. The missed treatment will unfortunately add another day to his schedule.
I very much want and need to see some improvement in Timmy soon. I worry so much. They do not do any additional scans until 4-6 weeks after radiation. The doctor calls this the "dark period". It truly is the darkest period of our lives.
There has been so much support, prayers and love for Timmy. People we do not even know are sending him gifts and cards. We have also met so many wonderful people here at Children's Hospital. There are people here who have even given me gifts for comfort. You become a family here because you have a horrible illness in common.
I would like to say thank you and we love you to Uncle Greg. Uncle Greg is Timmy's uncle and also a neurologist. He came to us in our time of need and continues to be there for us daily. Greg, we could not do this without you. Love to Grandma and Grandpa in California. We know this is hard for you being so far away.
I will update everyone at the end of the week when we have some more information.
Love,
Susan and Family
Thursday, January 13, 2005 3:40 PM CST
Hi Everyone,
Its Thursday and we are home from Philadelphia. Timmy has just 13 more radiation treatments to go! Timmy wears a face mask during radiation to immobilize his head. The mask has been getting very tight on his face. The steroids have made his face puffy. At the beginning of the week he was upset and had a hard time getting through his treatment. At the end of Tuesday's treatment, Timmy tells us "the mask hurts alot, but I am going be strong and just get through it because I want it to be done". He continues to amaze us with his strength and bravery. I would also like to mention that he has three wonderful technicians who encourage him and take great care of him. Timmy has come to trust them. He knows they will come running if he needed them. Paul, Margaret and Angela, you do such a special job and I thank you for your kindness and compassion for my son.
On Tuesday we saw the oncologist. Timmy's bloodwork is still good. The doctor has now gradually reduced his steroids in half. As long as Timmy reacts well to this we will continue to go down. Unfortunately, Timmy still has a slight tremor in his right hand. His leg muscles are stiff and weak, which makes it hard for him to get around. We are hopeful that he will get stronger soon.
Timmy continues to get hats, shirts, pins, cards and phone calls from Police Officers everywhere. Thank you everyone. Our Police Officers have big hearts and your support and encouragement towards Timmy is so appreciated. Police Chief Pollinger of the Middletown Police Department has made Timmy an honorary member of the Police Department. Thank you Chief Pollinger for the big, beautiful plaque that you sent to Timmy (see new photo). I know someday soon when he is stronger he would love to meet you and all the other Police Officers that have been so kind to him.
Thank you again to my friends for the love, hugs, sharing my tears and encouragement to keep me going.
Love and Thanks to All,
Susan and Family
Friday, January 7, 2005 8:17 PM CST
Hello Everyone,
It's Friday evening and we are home from Philadelphia for the weekend. We had a scare Tuesday night when Timmy started having severe stomach pains. Timmy is on a very high dose of steroids. The steroids help control the swelling in the brain from the radiation treatments. It also helps control the pressure from the tumor that causes a tremor in his right hand. The steroids help-but unfortunately they also have many bad side effects too(weight gain, stiffness in his leg muscles, dry skin, major sleep disturbances and irritability). This weeks check-up revealed that the steroids have also caused an enlarged liver which is what was causing his stomach pain. Timmy's oncologist is beginning to lower his steroid dose to help alleviate some of these problems.
On the positive side, Timmy's bloodwork is good which means that he is still tolerating the chemotherapy and radiation. The current treatment cycle is about half way done, only 16 more radiation treatments left. At the end of the current chemo round(about 21 more days) two things will happen. First, right after this treatment round, Timmy will start a second more potent round of Chemotherapy for 5 days. We then go into a waiting period of 4-6 weeks after which the doctors will run a new MRI to evaluate the effectiveness of these treatments. The weeks cannot go by fast enough. We need to know something soon, something positive, something to give us hope to believe Timmy has a chance to beat this tumor.
The response to my police cap request was "amazing". Timmy will have the best cap collection in town. One for every day of the week and more. Thank you everyone for your quick response and kindness. This will surely put a smile on Timmy's face, and I need to see those smiles!
Lastly, I would like to say thank you to all my wonderful friends. Maryalice, Tara, Cathy, Liz, Esther, Joy, MaryAnn, Sharon, Allison, Vivian, MaryPat, Rosemary, Linda, Donna, Vicki, Grace, Lisa and so many more. Marianna M, we have not seen you for years, thank you for your kindness. Thank you to my brother Tom and Joanne for their love and support. To all the special teachers at Middletown Village, Mrs.L, Mrs.G and Nancy. You all have and continue to be there for us and Timmy. The food, gifts, cards and continuing support are appreciated more than words can say.
I will continue to keep this journal updated for all of you and I look forward to reading all your messages. They are so important to me.
Love, Susan and Family
Tuesday, January 4, 2005 8:38 PM EST
Hi Everyone,
Thank you so much for all your messages. I look forward to reading them for they give me strength and encouragement to be the best I can be for Timmy.
Timmy has had a rough 2 days. He is so weak and tired and experiencing many side effects from steroids, chemotherapy and radiation. We are going to stay in Philadelphia for the rest of the week to be close to the hospital. One of the expected side effects is hair loss which he is handling well right now. I have a favor to ask: Does anyone have a connection to the Police Dept. for some type of baseball type hat with a police emblem/logo on it? Timmy wants to be a policeman and I think a hat like this to wear would make him happy.
Thank you again for your continuing support in so many ways for our family. I will keep everyone updated as often as possible.
Love, Susan and Family
Friday, December 31, 2004 9:35 PM CST
This web page is for all our family and friends,the wonderful parents,students and teachers at Middletown Village School,Cub Scout Pack 142,Middletown Taekwondo and the community of Middletown,NJ. This web page is for all of you who have been so supportive,caring and generous to our family in our time of need. Thank you from the bottom of our hearts.
Our lives changed completely when our 8 yr.old son Timmy was suddenly diagnosed with a brain tumor on November 27,2004. He was airlifted from Monmouth Medical Center to Children's Hospital of Philadelphia and was in Pediatric Intensive Care for 7 days. After many tests and a biopsy it was determined that Timmy had a Grade 2 Thalamic Astrocytoma. The doctors said it was the size of a large egg. Because of its location, deep in the brain, it was inoperable.
Our pediatric oncologist at Childrens Hospital decided the best approach would be to try to stop its growth or shrink it. Timmy is now undergoing daily chemotherapy(Temador)and IMRT(radiation). As of today he has 21 IMRT treatments left. Timmy has so far been tolerating his treatments well. He has been strong,brave and never complains. We are so proud of his courage. He is a sweet, beautiful boy who is loved so much and gives so much love in return.
We currently are commuting to Philadelphia every day for radiation. Timmy seems to do much better coming home, eating,being with his brothers and sleeping in his own bed.
At the end of February, Timmy will have more scans to determine how effective his treatments have been. The uncertainty and waiting are so difficult.
I will update Timmy's web page as often as possible. Please keep Timmy in your thoughts and prayers.
Love, Susan and Family.
Friday, December 31, 2004 9:31 AM CST
Friday, December 31, 2004 7:34 AM CST
Thursday, December 30, 2004 8:26 PM CST
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Thursday, December 30, 2004 8:00 PM CST
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