Hello everyone! Taylor had an awesome day today! He has been fever free since last night! We’re just waiting for his counts to come up now. He was up and literally running up and down the halls this evening! This was fun for him but not for me since I have to chase after him with his gigantic IV pole! He was also pushing a wheelchair full of stuffed monkeys all over the inpatient floor! He really seems to be taking each round better and better. His nurse told me that their little bodies learn to tolerate the chemo more with each round. Each admission is less rough than the one before….on all three of us. I should say four of us. My mom has been there with Taylor and I at every chemo day and most inpatient days! There are many other girls here at MSK whose moms are not able to be there with them physically. I feel so blessed to have her there by my side. She’s not only been such a help to me with Taylor, but a source of strength and encouragement when the going gets rough. And believe me…it gets rough…you can ask her. (Thanks mom!)

Taylor is scheduled to have his new broviac put in next Friday. We hope that this one stays in! We love you all, Jen

Hello everyone. I didn’t get to update you yesterday because Matt and I spent the evening talking to Taylor’s new roommate’s parents. They just found out their 2 year old son has leukemia yesterday and he was rushed to MSK immediately to begin chemo last night! Please pray for them as they are in the very scary beginning of this…the same place Matt and I were only 2 months ago. This little boy has 3 1/2 years of chemo ahead of him! The Lord has already begun to use Matt and I…it’s so cool. We gave them a good idea of what it’s like here at MSK and some tips that we were glad to know when we first started. They are obviously very shocked! The mom kept saying, “But he’s so healthy and active…this has to be a mistake!” I said the same thing when we learned of Taylor’s cancer. Denial always comes before acceptance though. We told them that we’ve only been in this for 2 months, but we can say that it does get easier.

Taylor had a very good day yesterday. They close the playroom early on the weekends so that made him very upset last night. The little stinker stood outside the door for almost a half an hour trying to turn the knob to get in. He didn’t even want to go near the doorway, let alone inside the playroom, the first admission we were here! He’s coming such a long way in more ways than one… praise the Lord!

Taylor had a slight fever this afternoon (Sunday). It went down on its own without Tylenol. Dr. Wexler said that Taylor’s body is learning to tolerate the chemo very well! That is why he is stronger and feels better with each round! As for his tumor, Dr. Wexler said that the chemo did an awesome job of shrinking it down! I love to hear him say that! Hopefully, we should be able to go home in the next couple of days. Thanks to all who pray each day for our precious little boy! We love you all, Jen

We are home after 9 days in NYC! It was our shortest time yet! Taylor is doing awesome! As of this morning, his white blood cell count could be higher than yours or mine! I also found out that for Taylor to get the kind of chemo he is getting and his counts coming up as high and fast as they have been doing, is quite amazing! Most kids on any kind of chemo cannot stick to their chemo schedule because their counts very often take to long to rebound and it has to be postponed for another week. This little kid is strong! He also spent most of each day running up and down the halls and playing in the playroom. His surgery will be done in the first week in September.

Taylor and I met a celebrity yesterday! His roommate's aunt is Cathy Moriarty, an academy award nominee who was in more than a dozen movies and most recently costarred with Robert DiNiro in Analyze That. She gave Taylor a video of a children's movie that she starred in called Casper Meets Wendy. You never know where you're going to run into somebody famous, the last place being a hospital!

Please keep Taylor in your prayers as he will go into surgery on Friday morning to replace his broviac, which fell out last week. We Love You All, Jen

We put away his crib and set up his new twin size big boy bed with Thomas the Train sheets and comforter yesterday! He was so excited to see his new bed and to sleep in it last night. He did great! He only woke up twice, but actually stayed in it rather than get down and yell for us! He even slept in until 9:00 am!

We need some advice if you have any! This is the situation. Last week, I asked Dr. Wexler if it is unusual that there are at least three children in our area (within 5 miles of each other) to have this type of rare cancer. Rhabdo affects about 150 children a year worldwide! His exact answer to me was, "Contact your state senator...Lautenberg to be specific. It's more than a coincidence that these cases, and probably more, are in your area." This morning we found out through word of mouth that there is another little girl in our area who just finished treatment for Rhabdo at MSK! THAT MAKES FOUR! Matt and I want to pursue this, the best we can! We at least need to let the government know what's going on. We are planning to start by writing a letter to this senator, but we would like to do more! If anyone can help us in this area or knows of someone to contact who will help this go through successfully, please e-mail us at family@themarmets.com Thanks, Jen

Hello everyone! Taylor had his new broviac put in today and he did great! They even gave us a special dressing to put over it to keep it secure even better than the last one. When we came home he played outside a little and then actually put himself to bed! He said "Taylor tired...sleep bed." He climbed right up and tucked himself right in under his covers all by himself! He had quite a day.

I have to tell you all something really cool that's been happening to us! When we first met with Dr. Wexler, he told us to look at this 8x10 photo framed on his desk behind him. It was a picture of a ten year old boy in a hockey uniform out on the ice. Dr. Wexler said, "This boy's parents brought him in to me when he was Taylor's age with the same rhabdo tumor, even the same size, in the same exact spot in his leg as Taylor's tumor. Now here he is happy, healthy, cancer free and playing hockey every day!" He then said, "As you watch your son go through this horrible treatment, remember this boy...and remember me telling you that I expect to see Taylor's picture next to his in eight years or so as well."

God is awesome and let me tell you why. First, Karen and Jerry are our wonderful friends and neighbors. Karen is the one who organizes all the people who have been donating blood and platelets for Taylor every week. Jerry and their children eat, sleep, and breathe hockey! Even their e-mail is hockeyfam7! Then, one day after Taylor had a finger stick done; he was able to choose a prize from a box of odds and ends. What did he grab...a hockey trading card! When we sit for seemingly endless hours during chemo, I can see into the room across from ours. We have the same room almost every time. Every once in a while I'll be sitting in the chair feeling tired or stressed out and something will catch my eye at always the perfect moment. In that room is a framed picture on the wall. It is a painting of what else...a hockey player! I looked around the PDH and it is the only picture of a hockey player in sight. It just so happens to be in my sight, exactly when I need it. Lastly, the other night Taylor and I were in the playroom while he was admitted. He stood up from the little table where he was sitting and began making his way toward this huge cabinet full of videos. There must have been over a hundred videos all lined up for the kids to choose from. He selected one and made his way back to the table. As he sat down I joked with the volunteers and said, "What did he pick...The Shining or something like that?" I then took the video out of his hand and looked at the title written on the side. (There were no covers; they were just the plain videos). To my amazement he chose The Mighty Ducks...a movie all about hockey and these little boys who play on this team, just like the boy in Dr. Wexler's picture!

In the bible, God used a rainbow to remind Noah and his family that He will always keep His promise to protect them and be with them always. Whenever I see a rainbow I remember that story and how God is always faithful. At just the right moments, God has been reminding ME of His faithfulness. It's no coincidence that when I've felt down or in need of some hope that these "reminders" have been there. The Lord is amazing. I have never seen Him more clearly or evident in my life than these past three months! And you know what...hockey is my rainbow!

We love you all, Jen

Hello everyone! Taylor had a good weekend. His eating has improved and he has been drinking his Pediasure and other liquids. Taylor and I are off tomorrow and Tuesday. He will begin is last big round of chemo on Wednesday and will be done on Friday! Horray! We we see the last of the Doxorubicin and Cytocin this week! I do have a prayer request for you. This morning I took Taylor's shirt off and realized that the dressing that covers his broviac site on his chest was open a little on the top. You have to be careful that the site is not exposed to the air too long for fear that he can get an infection in his line. In fact, when I change his dressing I have to wear a mask, use steril gloves and pick up and clean everything with alcohol wipes to be sure that it stays clean! I may be worried for nothing, but if he gets a line infection it"s an automatic 6 week stay ay MSK on antibiotics and his surgery will have to be postponed until the infection clears! Everything is going so well so far. I'm just praying that his broviac line and site are fine and stay that way. Thank you everyone who carries us through this every day on the wings of your prayers! We love you all, Jen

Hi everyone! Taylor ate like crazy today! We love to see that because he needs to maintain at least 24 pounds and to do so without the feeding tube on 24 hours a day is great for him. He's very thin right now. He wears size 2T tops but needs 12-18 months pants for his tiny waist! His weight should improve on his maintenance rounds.

Last night Matt and I were talking about Taylor and the past few months. I told him how terrifying it was for me on the first day of chemo. The first drug he received was Doxorubicin. It's very strong chemo and it wrecks havoc on the body, as well as the cancer! It's also the color red. I knew what it was going to do to that tumor...but also what it would do to my baby! I remember sitting there watching my healthy, rosy cheeked, little angel playing with his toys on that hospital bed as the tube slowly filled with that powerful red fluid. I wanted to jump up and pinch the line so it couldn't enter his vein. I have to say that that was by far the most difficult thing I had to witness in my life thus far. It felt like I was allowing this horrible thing to happen to my own son. What I had to remind myself was that the something horrible had already happened to him and this treatment would help him. The thing about this cancer is that they have to almost kill him to cure him! However, I'm so glad some people paid attention in science class so we can have these drugs today!

We have a request for those who are willing and able to give blood and platelets! Taylor received 6 transfusions last round in one week (3 blood and 3 platelets)! We are in need of more donors, especially platelets, for next week when he will be neutropenic. We will also need more blood on reserve for Taylor's surgery and the recovery period. If you can help us in this area please call Karen Iannuzzi at (973) 283-1308 or e-mail at hockeyfam7@optonline.net THANKS!!!!!

We love you all, Jen

Hi everyone! Taylor had a wonderful day today! He asked for food and ate well all day long! He had a great time playing with his friend Olivia. I love to see him happy and feeling good! He begins his last big round tomorrow! Please be in prayer for him as he is hit one last time with the Doxorubicin and Cytocin before his surgery.

Taylor has learned very early the importance of prayer. Matt, Taylor, and I hold hands and pray before meals and Taylor's bed time. Last night, Matt was a little late getting home for dinner so Taylor and I started eating without him. I prayed silently. A short time later Matt came home and joined us. He began to pray silently. Just then, Taylor holds both arms out with one hand toward me and one toward Matt and exclaims, "Guys...ats pray!" It was so cute! We are so proud of our little prayer warrior. It just goes to show you that you are never too young (or too old for that matter) to begin your walk with the Lord! He's only 28 months old, but he's paying attention!

Thank you to all who have been bringing us meals, donating blood and platelets, helped us with donations for the daily costs during his treatments, and all who continue to be there for us and in prayer for us each day! We love you all, Jen

Hello everyone! We just returned home from MSK for chemo and Taylor had a great day! He was happy and feeling good. Tomorrow will be the last time Taylor will get the big chemo! What a milestone already! He will have a bone scan and an MRI on September 28th and 29th. His PET scan will be on September 3rd. We are looking forward to seeing and hearing about the results! We can see the results just by looking at his perfect size leg that he now has after only two months of treatment! His surgery will be very soon after the results are all in and discussed by the sarcoma team and the surgeon. We also received great news about Taylor's echocardiogram. His heart is perfect! The Doxorubicin can sometimes cause damage to the heart. That's just another answer to prayer! We love you all, Jen

Hello everyone. Yes...we were in the city when the lights went out! The hospital was pitch black for a very short time until the generators kicked on! Even then, only a few dim lights were on. The nurses were walking around with pen lights. Just after the power went out, all the kids' IV pumps turned on and started beeping! I got to drive through mid-town Manhattan with no traffic lights! It still only took an hour and a half to get home though. My mom is a riot. Forget the mass hysteria or how we were going to get out of the city. When they announced that there was a state of emergency in New Jersey my mom said, "Oh crud...there goes my meat!" (She has a freezer full of meat at home for vacation next week in L.B.I.!)

I met with Dr.Wexler again today. Taylor's surgery will be the week of the 8th of September. I will let you know the exact day as time grows closer. He told me that Taylor will have his surgery in a new "state of the art" operating room. It has a built-in radiation machine that will allow the doctors to radiate the area during and after the surgery. He may have a period of low degree radiation in the weeks following the operation. Dr. Wexler told me that the radiation process will result in a 0% chance that the tumor will grow back!!! I couldn't believe my ears! He also said that Taylor will most likely only need to spend 5 or 6 days in the hospital following surgery and he will be up and walking 2 or 3 days after the surgery! They say little children bounce back from these things so fast! He may be left with a slight limp that may resolve over time. He fully expects him to be ambulatory for the rest of his life after this! What great news! God is awesome! Praise God that we are now officially done with the four big rounds of chemo. Four down...six to go! He will begin round six, which will be mild chemo, around September 22nd. So long Doxorubicin and Cytocin! Tomorrow we go in for the day to be hydrated. Thanks for all the prayers. We love you all, Jen

Hello all! Taylor had another great day today. It was his last day of regular chemo for a month! Thanks to everyone who had been e-mailing us information and contacts for allowing the government and general public know about this cancer in our area! We are using all of these helpful resources! We are leaving tomorrow for Long Beach Island, for a few days of rest, with our family. My parents are so kind to rent a house down there every year for all of us Kramer kids and our families to spend the week together. It is the highlight of our year! Taylor won't be neutropenic until Thursday, so we will be able to go for a few days. He received blood today and his counts are very good. His doctor said he is perfectly fine to go! Our plan is to come back home on Tuesday evening. We need to be back at MSK on Wednesday morning for counts, his weekly maintenance chemo, and a meeting with the radiologist. We hope everyone has a wonderful weekend and you will hear from me again on Tuesday night. We love you all, Jen

Hello everyone! Thanks to all who prayed for us the past few days. We had a terrific time down the shore with our family! Taylor was awesome! He ate very well and had so much fun playing and going to the beach. He slept beautifully as well. The fresh ocean air was great for him and it knocked him right out at bed and nap time. We all celebrated Taylor having completed his four big rounds. My mom made a cake and bought some cute animal shaped plates. I made a banner and hung balloons. We are all so proud of our brave little man! It was so nice to be outside, enjoying the beautiful weather on the island rather than the stale air in MSK. However, we are back here for our last big rounds’ neutropenic week. We were planning on leaving L.B.I. this afternoon, but Taylor had a slight fever this morning at 7:00 am. When we got here at 10:00 am his temperature was normal. We had to be admitted since he was neutropenic (.02 WBC). He is quiet and comfortable, but he wants to be back at the beach of course. Matt will have new pictures of Taylor and the family on the vacation picture page tomorrow. We love you all, Jen

Hi everyone! Taylor is doing well for being neutropenic and in the hospital. He received blood and platelets today so now he's a new man. His energy level always increases after a transfusion. THANKS TO ALL WHO GIVE BLOOD AND PLATELETS!!! There is a poster here at MSK that shows a picture of a little one Taylor's age and a caption under him saying, Your blood saved my baby's life! We really appreciate all those who make the trip into the city to donate for Taylor

We met with the radiologist yesterday. The resident who works with Dr. Wolden (the radiologist) examined Taylor's leg and he asked if we were sure if he was feeling the correct leg because he could feel no evidence of a tumor! Dr. Wolden later said that whatever is left after the chemo is very small and is hard to feel. She also said that his scans will probably look fantastic! We hope she's right! His scans are scheduled for next week. His surgery will be on September 16th. Dr. Wolden also said that he may not need the radiation during surgery if the tumor is removed with ease and all of it can be extracted. She said that it probably will work out that way, but they won't know for sure until the surgery is in progress. He will need 20 days of very low grade radiation after his surgery. This will begin around the first week in October and he will have it done while he is sedated for about 20 minutes a day, Monday through Friday, for four weeks. She said that kids who respond well to chemo usually respond well overall. Matt and I truly believe that Taylor is responding well to his treatment because of all the prayers for him! Matt says it must be loud in heaven these days with everyone praying for our little buddy. Thanks everyone! We love you all, Jen

Hello everyone! Taylor is hanging in there. It’s so hard being here when it’s so nice outside. We just keep reminding ourselves that this is the last big admission and then a week inpatient for the surgery. Kids on maintenance chemo are rarely admitted! Taylor has a line infection in his broviac! The pediatrician on the floor is certain that it is not a result of his bandage being slightly open after his new line was put in. He said that the line gets infected from natural bacteria in Taylor, not from what is in the air. He has been on antibiotics for it and will go home on them in a few days when his counts come up. He also has had a lot of blood in his urine the past few days. This is a result of his bladder being irritated by the cytoxin (his chemo). When his platelets are low, he bleeds easily and this is why his urine has been bright red. He received platelets on Thursday, Friday, and today so he’s doing better now. He’s up to 11 blood transfusions and 9 platelet transfusions. Taylor is weak, tired, feverish and feeling quite yucky this round in inpatient. He still wants to go to the playroom, but his heart is just not in it. His little body is trying so hard to fight this infection, but with no counts it’s pretty hard on him. Please pray for him. I’m just trying to keep him happy and comfortable as best as I can. This place is wonderful for doing that as well. This place is all about these kids! In fact, Taylor’s nurse was just telling me that in the past year that she has been here, she’s met Michael J. Fox, Ben Afleck, Jennifer Love Hewitt, and Jackie Chan! She says celebrities drop by and visit the kids all the time! I better start wearing make-up and clothes that match from now on! We love you all, Jen

Hello everyone! Taylor is doing so much better! He woke up this morning sitting up and ready to play. He was passing out stickers to all the nurses who came in our room today. You know he's feeling better when he shares his stickers. His fever has been gone since Sunday afternoon. He has much less blood in his urine today and it will be less and less as his counts come up. Taylor had a bone scan today and he did great! They are restaging his tumor now that the surgery is just around the corner (on 9/16). He just looks so bright and his color is so rosy and healthy now as we are coming out of his last big neutropenic period. That's the thing about him and chemo. It really knocks him down after he gets it, but he rebounds beautifully!

Some of you guys have commented that you get a good idea of how Taylor is doing from our web site, but want to know about Matt and I. Day to day, when Taylor has a good day, we do as well. Over all, we are doing very well, honestly. It's not an easy life right now for our little family. However, we daily remind ourselves that it's temporary. The first week was unbelievably horrible. The second week was painful and we were still numb and shell shocked. The weeks following were better and better as we became adjusted to the news and started our war on this tumor. We saw results on the tumor so soon that it was hard not to be happy day to day. There are so many kids who don't respond to chemo right away, or to any chemo for that matter! We could see his shrinking day by day. He also has a great prognosis. It is not like that for everyone here unfortunately. When I lay my head on my pillow at night, I thank the Lord for my child's progress and the healing He is granting Taylor. I also pray for all those little ones we get to know each day at that hospital that don't have a great outlook. What is hard for us is the daily grind of dealing with a two year old with cancer, the traffic in and out of the city, missing our normal lives and routines that we used to take for granted, and being in a life position that just never feels natural. No one is born ready to have a child with a potentially life threatening illness. Matt and I have assimilated to it as best as we can. I never in my wildest dreams imagined as I stood in my church and said my marriage vows to Matt that we would be faced with something like this.so soon at least. I thought it would be one of us when we were in our seventies, not our two year old seven years down the road. Matt and I believe strongly that the Lord has a huge plan for this for us for Taylor! He must know that we can handle this because He gives us no more than we can bear. Every once in a while I would just be sitting quietly and it would hit me out of nowhere. I would all of a sudden think, Oh no, my son has cancer!!! That doesn't happen quite so often anymore. God has been so good to us in all of this. It seems like every time we speak to the doctors it's good, often great news! It's so easy for us to be positive praise the Lord! It surly helps us through the little rough spots along the way, day to day.

Thank you for lifting us up to the Lord in your prayers! He's the One who is carrying us through each and every day and healing our little one. We love you all, Jen

Hi All, It's Matt. Jen and Taylor are still in the hospital. His counts are still at 0. Please pray that they come back up soon. This is normal, sometimes it takes a little longer. Praise God that his Broviac line infection has cleared up as well. He also has had blood in his urine for the past 6 days. Taylor has been getting platelets at least once a day sometimes twice a day. This is normal and once his blood counts come back up again, all of this will clear up. So please pray about that. Also, we are out of platelets from people we know. We are having to dip into the "public" pool of donors. God has really blessed us with all of you family and friends that faithfully read these updates and help us out in the various ways that you do. Also, thank you to those who bring food for us as well. It is greatly appreciated. God is really great.

As of right now (9:43), Taylor is doing well. He is comfortable and talking with Jen as normal as can be. He has no fever (after having one for the past 5 days) and hopefully it will stay that way. It looks like they may finally come home on Fri. night or Sat. night. The house is quite empty without them. Anyway, thank you for your continued prayers and for everyone's support through this. Matt

Hello everyone. Yes, we are still in the hospital! We have been here for 11 days now. The total number of days spent in inpatient since June 17th is 42 as of today! Taylor is doing well, but still has no counts (0 blood counts). I spoke with one of the doctors on the floor and he said it’s normal for his counts to take longer each round to rebound. He told me that Taylor looks terrific and he should start rebounding tomorrow or Saturday.

He had a busy day today with a CAT scan this morning and an echocardiogram this afternoon. Both went well. Tomorrow morning he will have his PET scan. His doctor said he’s sure they will look good. This poor little guy has to go under general anesthesia for all of these scans so they can be sure he stays absolutely still for them. The MRI and Pet scans can last over an hour, so that would be a long time for anyone to remain perfectly still. Matt and I are doing well. He comes in once every three days or so since he is busy at work and keeping the ship afloat at home. Taylor and I miss him though. Once we are home again, things will be a bit more normal. Well, as normal as they get for us these days at least. Things are going smoothly though. God is so good to us. I see that so clearly now as we go through this. It’s hard to fully explain unless you’re riding in the front seat down this bumpy road that Taylor, Matt, and I are going down and actually seeing the chain of events of God’s goodness in so many different ways, but trust me…He’s there! And I’m just so glad that God’s in the driver’s seat and not me! My new motto for life is a quote I recently saw on a bumper sticker, believe it or not. It said, “Relax…God’s in Control.” I believe in and live those words in my heart every day now! Thankfully, there is nothing too big for Him. Please keep the prayers coming because there is power behind them! Thanks everyone! We love you all, Jen

Hello everyone. We are still in New York City, but his counts started coming up this morning! My guess is that he will be 0.5 by Sunday. Matt just got here and changed his diaper and he commented on how much less blood there was in his urine. He’s doing much better as far as his bladder is concerned. We’re really glad about that. Taylor finally stopped vomiting from the mucusitus that he got hit pretty hard with this round. It’s been a rough round for him, and Mommy! He had his PET scan this afternoon and he did very well. We have one more scan (an MRI) next Wednesday. Then he will be finished with the restaging. We will probably get the results by the end of next week. We know that they will be good by just looking at Taylor’s normal sized leg! Praise the Lord! The worst of this nightmare is almost over. After the surgery Taylor will have only 6 maintenance rounds of chemo and a short period of radiation in October. If all goes well, we hope to be completely done with everything by the end of January! He will need scans every year for 5 years after we finish in January. Taylor will be 8 years old when he will no longer need scans and be officially in remission! That seems like so far away to me.

Thank you to all who have sent us donations so far for Taylor’s treatment and our daily expenses! We so appreciate everyone’s thoughtfulness! We love you all, Jen

Hello everyone! Great news! We will be able to go home tomorrow morning (Sunday)! Thank you to all who prayed for his counts to go up because it worked…big time! He went from 0.0 to 1.2 overnight! That is a very big jump, believe it or not. Every time we ask you guys to pray about a particular concern, God answers your prayers overnight just about every time! Taylor received blood again today and a total of 7 platelet transfusions in order to help his bladder problem. More good news…there is no more blood in his urine. Thank you platelet donors! He only received one transfusion from the “public supply.” Taylor looks wonderful and is feeling good now that he is physically over his last big round of chemo! Now we wait for his surgery on 9/16. We will be coming back into the city for counts and more blood and platelets as needed over the next two weeks before his surgery and also for his MRI next Wednesday. We love you all, Jen