Hi All. Just a quick note. Taylor had a great day today. His blood counts are really doing well too. Please keep praying that he can hold these numbers throughout the remainder of the treatment till January. The above pictures were taken last week. He is really looking great. Thanks for all your continued prayers. Matt

Hello everyone! Taylor is all done with his first maintenance round! Only five more to go! Thank you for praying him through it! He weighs 29 pounds now! He's gained 6 pounds since mid August! He did fantastic this week. I thought for sure it would be a rough week being there with him while getting chemo for 10 hours every day all week long. He is getting Etoposide for one hour each of those 5 days and Ifosfomide for one hour each day as well. However, he needs Mesna to protect his bladder and hydration for 24 hours a day. We stay all day to get mega doses of fluid, then go home with it on a lower setting (he's hooked up to the pumps in a small backpack) and come back in the next morning. He had a wonderful time at MSK this week as well. His friend Riley was his roommate again, so the two boys kept each other company and played in the playroom together every day. He had a ton of energy all week long! I think he thought he was there to play and didn't even know he was getting chemo! This round was nothing like the powerful chemo rounds! He spent many hours pushing his stroller all over the unit and running people over since he can't see over the top of it. I bought him a little ride-on car that has a bar on the back so he can push it around instead. It will be coming with us every round. He is walking completely normal now!

Tomorrow we take him to MSK for his simulation. This is where he will be put to sleep while the radiologist maps out exactly where he will need radiation. It will take 2-3 hours to do this! We will also find out exactly how many days of radiation he will need. We know it will be no less than 7 and no more than 20 days. Please pray that all goes well. Please pray that he stays healthy and able to be neutropenic at home with these rounds as well.

We have some FUN fund raisers planned for the coming months ahead! We will keep you posted with the details very soon! We love you all, Jen

Oct. 6, 2003

Hello everyone! Taylor made out great today at the hospital! He had his simulation. It's where they map out the exact area to receive radiation. It only took a half an hour. Basically they perform a CAT scan on the affected area. We also talked to Dr. Wolden, his radiologist. She told us that the lab reports on the samples taken during Taylor's surgery revealed that the only the tumor had a very small area of live cancer cells deep in the center of it. The majority of it was dead! The lymph nods and the surrounding area were completely clean and cancer free! The tumor is out and the rest is clean PRAISE GOD! His blood counts are dropping and he needed a blood transfusion today, but he is otherwise looking terrific!

He will begin his 20 days of radiation in 2 weeks. He will receive a very low grade ray to the entire area. The side effect of radiation, where Taylor is going to be getting it, is possibly a future problem with his bones and hip joint. It could be as simple as needing a lift in his shoe when he gets older or as complicated as needing surgery to correct the possible damage to his growth plate (a steel rod inserted in his bone and/or hip) Since he is getting a low grade ray, Dr. Wolden expects him to do well and not have too many issues as time goes by. He may have a weakness in his hip and/or left leg as a result of the radiation to the area. She said that she had to let us know about all the possible side effects of his radiation whether they come to be or not.

The other news we learned is that Taylor will likely be infertile due to the Cytoxin (chemo) and radiation near that area. She said that it's not out of the question, but quite possible. She also said that by the time Taylor is ready to have children and with the advancement of technology, they may be able to swab his mouth to get DNA to fertilize an egg, or something to that affect. Dr. Wolden told us that she is extremely optimistic that Taylor will be cured! Please pray that Taylor will be able to be home and feeling good during the next week or so while he is neutropenic! Thanks everyone! I'll keep you posted every day or two. We love you all, Jen

Hi everyone! Taylor's counts are 0.0 and we are home! I love these light rounds! Thanks for your prayers...so far so good! We went to Chilton Hospital for his CBC (blood counts) yesterday. We will be going there just to get his counts while we are home and neutropenic until he is finished with chemo. It's close to home and they can fax the numbers to MSK in 10 minutes! If he needs a transfusion, we will leave right from Chilton and go into the city. If he doesn't need one, we can go home and will not have wasted a trip into New York. Yesterday his platelets were a little low so they had us come in today for a transfusion. Today was a day that I really needed an extra measure of patience from above! Taylor vomited all over the back seat of our SUV, his car seat, his favorite blankie, and himself! (He gets car sick.) We were going down the FDR drive at the time where there are no shoulders to pull off onto, so I had to wait about 15 minutes until we got to the parking garage in Manhattan to clean it all up. When we got there, they proceeded to tell me they were full. I think the guy felt sorry for me, so he made an exception and he fit me in. Then, what was supposed to take 2 hours in the hospital took 6 for some reason today. Finally, we left for home and sat in traffic for two hours in rush hour traffic. It was just one of those days! Those kinds of days just help me appreciate the regular days all the more.

We have a fund raiser planned for next month! There will be a pancake breakfast/bake sale to benefit Taylor on November 16th from 7:30am until 12:30pm. It will be held in the Bloomingdale firehouse. We will have directions to the firehouse posted very soon. If anyone is interested in baking or helping set up tables for the event, please email Mark and Allison Lastfogel at alastfogel@mhco.com or email us at family@themarmets.com. We love you all, Jen

Hi everyone! Taylor had a great past few days...at home! So far there has been no fever and I think we made it past the danger point where he would need to be admitted! Praise the Lord! He's been active and feeling good the whole time as well! It's been strange being home for this length of time. We've really been splitting our time between home and MSK (more at MSK) the past five months! It's been so great for Taylor. Little ones especially need the normalcy and comfort of there own environment. And thank the Lord for his blankie! I don't know what we would do without that blue blanket of his. He'll probably be carrying it around with him until his wife tells him to get rid of it!

We received a call from the hospital on Friday letting us know that he will begin radiation on Monday. Tomorrow, on 10/13, he will have his first session. We will be leaving at 5:45 am in order to get to MSK at 7:00 am every weekday morning for four weeks. I can't think of a more worthy cause to wake up early for though! I'll update you tomorrow night to let you know how he does and give more details about this form of treatment. Thanks for praying for him! We love you all, Jen

Hello everyone! Taylor did great today at his first day of radiation! One down and 19 to go! We were in and out in a short amount of time. He is getting a 24 G-Ray on his leg. It's supposed to be a very low dose of radiation. He had a rough time while the anesthesia was wearing off though. It makes him very irritable. His counts are way up as well! He must have been 0.0 for a day, unlike the big rounds when he was 0.0 for over a week each time! It was such a beautiful autumn day today! Matt had off from work, so after the hospital we took Taylor to the Whippany Railway Museum to see all the old trains. He was in his little two year old glory! He's a little Choo Choo boy. We got some cute pictures of him on the trains! It's been so nice to be able to do some fun things with him during the past month or so since we pretty much missed out on the summer of 2003. It's strange, for the longest time I didn't want Matt to take any pictures of Taylor during this whole thing. I thought that in the future I would look at them in horror and be forever traumatized by the way he looked and the memories they would resurrect of Taylor going through all of this. I can't say for sure, but I don't think they'll have that effect on me down the road. I try to look at everything as one big picture, and not all the little moments that have gone by and made all these memories, both good and bad. As I see it now, honestly, the big picture is a beautiful portrait of God's goodness and power. Some in my position actually question God's goodness, and even His existence! It's a test of faith, that's for sure. In hard times, we can choose to turn away, or embrace Him and see His face more clearly. We are truly thankful for our merciful God who loves us and takes care of us. We love you all, Jen

Hello everyone! Taylor had a terrific week! He is having no side effects from his radiation and he is already used to the routine of going! It was a bit scary for him at first, especially going into the room where they house this huge, intimidating radiation machine. He then has to put his head down on my shoulder so that when the anesthesia hits, he won't fall right out of my arms. By Friday he was willingly putting his head down and not crying anymore. This is one brave little guy! He truly is my hero! He begins round 6 tomorrow morning. He only has 4 more after this week! Taylor is full of energy and eating on his own again! He's eating better and better every day. He is on his feeding tube for only 6-8 hours a day now. If it were not for his cute little bald head, you would look at him and think he was a regular kid...not one on chemo and recovering from all that he has gone through. God is so good! I will update you every day or two this week during cycle 6 of chemo. Please pray for strength and a good week for both Taylor and me. Thanks! We love you all, Jen

Hi everyone! Taylor is doing very well this week so far. He is feeling good and full of energy at chemo, as well as at home. These are very long days for us. He is getting radiation and chemo each day this week. He's happy and not acting like he doesn't feel well. Praise God! We also met another child with Rhabdo, but she lives in New York City, not the Wayne area. Her mom and I have been talking about our children’s treatment the past couple of days. I try to keep all of you informed as to how Taylor is doing and what goes on at MSK and in our home, but no amount of words can paint the full picture of what it's really been like for us...for Taylor! It's been a roller coaster ride, that's for sure. We (all three of us) couldn't do this without all of your prayers! The Lord has been our sole source of strength in all of this. Thank you everyone! We love you all, Jen

Hi everyone! Taylor had a good day today. He has a hard time sleeping there though. I have to lie down on the bed with him and hold him tight as he screams and yells until he finally falls asleep. It's the only way to get him to rest. I think he thinks that if he lies down (and falls asleep), somebody is going to do something medical to him. I wish he could understand how safe he is, but he trusts nobody while at MSK...not even me. Other than the sleeping issue, he is doing very well. He hasn't vomitted at all so far this cycle. In fact, he eats all day long! This is such an answer to prayer! I was wondering if you would say a prayer for a child and her mother who we met at MSK this week. I mentioned them yesterday. The little girl (Tamara) has a Rhabdo tumor the size of a football in her abdomen and it has ruptured. She's on the same treatment protocall as Taylor and has just started a few weeks ago. Tamara's mom is not doing well at all. Today, she looked at my mom and said, "I just want to kill myself." We got to spend a lot of time talking to her and we even got to share with her where we receive our faith and strength from. Please pray that God will show himself to this mom and her little girl as they go down this rough road ahead for Tamara's recovery. Thanks! We love you all, Jen

Hello everyone! Taylor has finished cycle 6! He is doing awesome! He is not sick or in any pain. He is happy and energetic all day long. We will have to keep a close watch on him this week as his blood counts drop. He was only 0.0 for a day during his last cycle. I've been cleaning like crazy and washing his hands frequently. Everything we can do to keep germs away will help his immune system and hopefully keep him out of the hospital with these light cycles. Dr. LaQuaglia (his surgeon) took a look at Taylor's leg while he was still under anesthesia after his radiation yesterday. He said he looks terrific! Taylor woke up afterwards and was calm and mellow for the first time since we started radiation 2 weeks ago. He usually wakes up quickly and is very agitated and wild for quite some time afterwards. They give him Adavan (an anti-anxiety medication) when he wakes up, but it doesn't help him very much. We have to wait it out and then he is back to being happy Taylor again. He is now half way done with radiation. He has 10 more days left. His radiologist said that he is taking it very well and she doesn’t expect any side effects.

Praise the Lord!

One of Taylor's friends from MSK passed away this week. We spent the day of the blackout with little Michael Downing and his mom, and we have seen them quite often at MSK during the past few months. You may have heard about him on the news this week. His father was a fireman and he was killed in the famous New York City fire in 2001. Shortly after his father's death, Four year old Michael was diagnosed with neuroblastoma (cancer of the central nervous system). He's with the Lord now. During the blackout, my mom and I were talking with his mother and she told us their whole story. We asked her about her faith, and she said she had none. I can't imagine what she's going through! It has to be even more devastating to do it without the strength and grace of our Heavenly Father. If you could please say a prayer for her and her daughter, we would be so grateful. One of the hardest things about being there at MSK is getting to know some of these children and their parents. These are children who don't have a good outlook. Before Taylor's diagnosis, I knew that there were children with life threatening illnesses, but I never actually saw one in person. There are now faces attached to these ugly named cancers and now it's personal. I need to keep reminding myself that every story is different, and thankfully, at MSK, there are a lot of good stories. Children like mine are getting well there and many go on and never need to come back! That thought, along with the fact that God is the ultimate physician, is what keeps me positive every day at MSK! We love you all, Jen

Hello everyone! Taylor was admitted to the hospital today with a fever. We were there for radiation in the morning and he was fine. He had a fever by the time we arrived home, of course. It is always possible to get a fever, even on the light cycles of chemo. His counts are on their way up now so hopefully we will be out in a few days. Taylor is happy and comfortable. He says he has no boo boos. He seems to be fine other than this fever that they are treating with Tylenol and antibiotics, just in case there is an infection somewhere in him. He is almost finished with his radiation! He has only 5 days left next week. It seemed to go very quickly, thank the Lord. Taylor will be done with all of this in 2 ½ months if he stays on schedule with his remaining 4 cycles of chemo. So far he has not had to delay any cycles so far. God has been so good to us. Please pray for him as we wait for his counts to come up and for healing for what is causing his fever. Thanks everyone! We love you all, Jen

Hello everyone! We are still in the hospital. Taylor is doing just fine though. He has had no fever since shortly after we were admitted on Thursday afternoon. He’s not sick or in any pain. We are not able to come home until his counts are up and Dr. Wexler said that will most likely be sometime this weekend. He received blood and platelets on Wednesday, and then blood again today. Taylor had a fun Halloween at MSK. He saw a magic show and went to a big party in the playroom. He loved seeing everyone dressed up. Even Dr.Wexler dressed up for the day. They do a terrific job making it fun here for the children! Please keep in your prayers as his counts come up. Thanks! We love you all, Jen