Hi everyone! We had a change of events this past week. Taylor came in for chemo and scans on Monday. He was fine when we brought him in, and pretty much over his cold from last week. He received anesthesia for his MRI and CT scan because he is too little to lay still for them. He was under for 2 hours. When he woke up, he was a totally different child. About an hour after his scans, I noticed that he was breathing very fast and hard. His color was pale and his lips were blue. He also wasn't responding to my voice or touch. Several doctors and nurses came in to check him out after his own nurse checked his oxygen level and it was very low. He was given a breathing treatment immediately. He was also put on oxygen. They didn't know exactly what was wrong with him. He had a chest x-ray done right there in his bed. They later determined that his lungs had collapsed during his scans because the respiratory system slows down with anesthesia and because he has RSV. This is a cold virus that can be very dangerous to small babies and those with immune deficiencies like Taylor has right now. He was cared for by the Critical Care Unit on Monday night. He was in ICU by Tuesday morning. He was getting a medication through his IV and a special breathing treatment in a tent each night.

I had to leave and couldn't be with him because this treatment could be dangerous to my baby! I've had to do a lot of difficult things these past 7 months. The most difficult by far was leaving my sick child in the hospital and not being there with him. It was a sad drive home for me. Matt is an awesome Dad. I felt very confident that Taylor was in great hands with both he and the terrific staff at MSK. Taylor loves his Daddy so much too.

By Wednesday afternoon, he was breathing on his own again without the help of oxygen. Praise the Lord for his amazing little body! He bounced back so quickly from being critically ill to our own little Taylor again! Taylor will be able to recover at home now because his counts are up and he no longer needs oxygen or breathing treatments. Surprisingly, he was discharged this afternoon! We are not sure if he will resume cycle 9 of chemo next week or the following week. It will depend on how his chest x-ray looks and if he tests negative for the RSV next Monday. He's still almost done. We will be finished in early February now if all goes well from here on out. The main thing is Taylor's health. Once his chemo is over, he will go back to being a normal, healthy, and now cancer free child. Thank you for your prayers! We love you all, Jen

Hi everyone! Taylor is doing well at home now and on his way to good, or should I say better health again. He is coughing quite a lot, but it's a productive cough now. He is not eating yet so we have his feeding tube running 24 hours a day with Pediasure, Pedialight, and water going through it at different intervals to keep him fed and well hydrated. He spent much of the day hanging out on the couch watching videos and playing with his toys from Christmas. Although he is sick, his spirits are up and he seems happy and comfortable. Each day should get better and better for him now that he is on the upswing from this RSV. I spoke to MSK today and they said that he will need to come in on Monday and have a swab done to see if he still has the RSV. He will also have another chest x-ray. They would like for him to have the week off next week to recover from this before cycle 9 of chemo. He will begin cycle 9 the following Monday (Jan. 12th) if all goes well. He will receive his last cycle the first week in February. After that, he is done. His broviac and feeding tube will be removed a few weeks later. We haven't had any setbacks until the RSV. We knew setbacks and illnesses were inevitable, so we are not surprised or disappointed. We are, however, very surprised that he hasn't had more setbacks along the way until now! Praise the Lord for that! Please keep him in your prayers as we are in prime season for illnesses and trying to get him through these last 2 cycles of chemo. We love you all, Jen

P.S. Taylor's little brother or sister is doing just fine and still kicking and moving all over in there all day...and night! I'm 19 weeks now and feeling good. We plan to find out the gender in a couple of weeks. I'll be happy to let you all know if we are having a boy or a girl as soon as we find out after the sonogram.

Hi everyone! Taylor is doing better every day! Your prayers are working tremendously! He slept well last night, with very little coughing. He was a little more active today than yesterday. He got up off the couch a few times today. In fact, while I vacuumed the house he followed behind me with his little toy vacuum. This is something he loves to do, so I know he has to be feeling better. We just look at him and can't believe how sick and in such terrible shape he was just days ago! He's amazing! God is amazing!

Some of you inquired about him missing his front tooth. It was a little loose at because of a fall he had shortly before he was diagnosed. He had to be intibated (a breathing tube down his throat) during his big surgery in September. They were concerned that the tooth could fall out during surgery and that he might swallow it. It was pulled just before he was intibated for his surgery...so he lost a tumor and a tooth! We think he still looks so cute. He's our little jack-o-lantern. Please keep him in your prayers for continued recovery from RSV and a strong body to resume chemo in a week. We love you all, Jen

Hi everyone! I took Taylor into New York for his chest x-ray, a swab for RSV, and his counts. Before we got any of the results back, Dr. Meyers, who is Dr. Wexler's associate, came in to see him. We had to stay down in urgent care in a secluded room because of his illness. Both he and our sarcoma nurse were very impressed with how great he looked! They said that his nice pink hue looks a lot better than that shade of gray he was sporting last week! I asked Dr. Meyers if he thought we would be coming in for chemo next week or not. He said that his lungs were quite bad last week and it could take weeks before they would clear up enough for chemo. He also said that he felt that if he is going to require a few more weeks off, he would consider ending his treatment all together right now after the 8 cycles of chemo! He said that Taylor is clean and these cycles, especially the last couple, are not that necessary in Taylor's situation. I didn't know whether or not to be happy about that news or not! I'm a "by the books" kind of person...and his mother! His protocol (package) calls for 10 cycles because of the initial size of the tumor at diagnosis, regardless of how well it responds to chemo, or if it is operable. I want all 10 cycles...no matter what. If he is well enough, I want them all! Well, after we were done, we went home and waited for them to call with the results. Our sarcoma nurse called to tell us the wonderful news. She said that his chest x-ray was as clear as a bell and the radiologist said that it looks like he never had a thing wrong with him in there, let alone RSV pneumonia! The RSV test came back positive, but it takes a little while before it reveals a negative result. They were yet again amazed at this little boy and his spectacular tiny body! God just continues to show us miracles through this child! A week ago today, he was in critical condition and not able to breath on his own without oxygen. Today, his lungs are perfect! The plan is for us to bring him in next Monday morning for another RSV swab. We will know by late afternoon if it is negative or not. It will very likely be negative by then. If so, he will get cycle 9 on Tuesday through Friday. They can condense his chemo into four days because of the dosage he receives. He is actually neutropenic from that one day of chemo he received last week! His body is so beaten down from all the chemo, as well as from being so sick last week! His blood and platelets were very good though. He gets knocked down, and then pops right back up again every time! Praise God! Please pray for that negative swab for next Monday! Thank you for your prayers! Matt and I believe with all our hearts that the Lord hears your prayers and He has been faithful to answer them. We love you all, Jen

Hi everyone! Taylor is doing very well. In fact, he is pretty much acting like his old self again! He still gets tired every once in a while, but it's going to take some time to recover from... basically everything. We are so glad to find that our happy, smiley, and content little child had been in there all along during his treatment, and now we're seeing him slowly come back around! He is feeling better after the RSV and it's been over a month since his last full cycle of chemo. We are so excited (and ready) for a normal life again. People have been telling me to be prepared for how much more difficult it's going to be when the baby comes and I have two children to care for. I have no doubt that they are right about that. However, we welcome that kind of hard work in our house! It's natural! God created mothers for those tasks and that life. There is nothing natural about caring for your toddler who has cancer. It's been a very physically and emotionally exhausting journey for all three of us. When I'm up every two hours at night with our new little one...believe me, I will be reminding myself how good God is and how blessed we are to be finished with Taylor's illness and have two healthy children. Life is so fragile and precious. Each one is a gift from God...never to be taken for granted! Please pray for continued healing for Taylor as we wait to start cycle 9 next week. We love you all, Jen

Hi everyone! Taylor had another good day today. We were having such a good time playing that he wouldn't take his nap! I try to get him to at least lie down for a while in the afternoon. Lately he has been falling asleep. I guess his sleeping depends on how poor he's feeling. I kept asking him if he wanted to lie down and he would answer, "No thanks Mama...I not tired yet!" I take this as he's feeling well. He looks terrific too! He's filling out more and more now and his color is great. I hope these last 2 cycles don't knock him back all that much! The hospital called today with his counts. We had them done at Chilton yesterday and faxed to MSK. They were excellent! His white blood cell count was 0.7 on Monday. Yesterday it was 6.4! That's a huge jump in a short amount of time. His blood and platelets were also very good. All we need now is a negative result on his RSV swab and he'll be set for chemo on Tuesday. The end is in sight! Thanks to all of you who check our web site to find out how Taylor is doing and for praying for him regularly! It means the world to us! We love you all, Jen

Hi everyone! Taylor continues to do well each day. We are really praying for a negative result after his swab for RSV tomorrow morning. Please pray hard everyone! We just want to resume chemo A.S.A.P. and get these last 2 cycles over with! It's been great spending this time at home though. Taylor is speaking very well now. He counts to 20 on his own and speaks in clear sentences now! He still has some cute names for certain things. We went to Sears today and as we walked through the yard equipment area he exclaimed, "Look Dada...I see lawnmummers!" We were concerned about his speech for a while there. He wasn't feeling well, and therefore wasn't progressing in his language skills. The other area we need to work on with him is his muscle tone. His legs give out and he falls from time to time. He has spent 95% of the past 8 months laying in bed or sitting on the couch. He needs to build up strength and tone in his legs again. The more he is up and moving, climbing, and playing, the stronger his legs will be. I'll let you know what the RSV swab result is tomorrow night. Thanks for your prayers! We love you all, Jen

Hi everyone! Taylor had a terrific day today! We went to MSK for his RSV swab this morning. He played all day long and didn't sit down on the couch at all! This has not happened since before he began his first cycle of chemo 8 months ago! I discussed the issue we are having concerning the strength (or lack there of) in his legs and they suggested that he should have some physical therapy. Early Intervention is an organization that helps children under the age of 3 with any physical issues they might be having. They will asses him and what they will most likely do in his case is suggest some activities that we can do with him at home to help him have better muscle tone in his legs. Our nurse told us that swimming lessons would be a great activity for him and a lot of fun as well! We are planning to do a session of 10 lessons at Spa 23 after he is all done. Well, I guess I need to find a maternity bathing suit...or possibly a tarp! I'm 20 weeks along, but I've had a couple of people ask me if the baby is due in February!

Taylor will be starting cycle 9 tomorrow (Tuesday)! His RSV swab result will not be back until morning because the lab was backed up today. Dr. Wexler wants him to start regardless of the results because even if it he does still have it, he will be over it before he is neutropenic next week. They're pretty sure it will be negative though. I'll let you know how it turns out tomorrow. Please keep him in your prayers this week everyone! Thanks! We love you all, Jen

Hi everyone! Taylor finally restarted cycle 9 today! The day went very well. There was not enough on the RSV swab for the lab to sample for the correct result so they did it again this morning. They're not really concerned about the result and it should be negative by now anyway. He is getting his chemo on the inpatient floor and we have a private isolation room for these four days that he gets cycle 9. They just want to be safe rather than have him with the other kids, just in case. We are in a beautiful, quiet room all to ourselves. I'm not going to argue with that! Please pray specifically for strength for his body and that he remains healthy until his counts come back up. We love you all, Jen

Hi everyone! Taylor is almost done with cycle 9 and everything is going great this time! Thanks for all the prayers! He is feeling good and his counts are still up as of today (Thursday). His blood and platelets are terrific as well. I actually got the day off today. Daddy and grandma took him in for chemo and I was able to get a break. I think it was the third time in almost 3 years that I had the day to myself! My terrific friends all chipped in and treated me to my first ever professional massage and I went today! It was so nice to be pampered for a change...instead of me changing pampers. Thank you Karen, Patty, Nichole, Heidy, Robin, and Michelle! You guys are the best! We love you all, Jen

P.S. The baby is doing just fine and still very active in there. I am going for my sonogram on Monday, January 26th. We are hoping to be able to find out the gender that day. If it's a boy the name will be Cameron Richard (Richard. after both mine and Matt's grandfathers). If it's a girl her name will be Jordyn Grace (Grace...Because of the grace God has shown us in healing our Taylor and blessing us with a new little life).

Jan.16, 2004

Hi everyone! Please pray for Taylor. He was in for his final day of chemo for round 9 and ended up with a fever of 103.2. They have admitted him and it looks like he will be there for about the next 10 to 12 days. This was unexpected. They did a chest X-Ray on him, but the results have not come back yet. Please pray for sanity for both Jen and I through this. As she is pregnant, the days that she does have to sleep there are uncomfortable and tough. I was planning to get her a 2" thick Thermarest pad this weekend, but now that's out the window. Please pray for Taylor as well. He is very sick and not feeling well. He has been throwing up today so the feeds going into his feeding tube has been stopped. The doctors feel that it is bacterial and that it is either the RSV or a cold flaring back up. If it is RSV, he has to go back under the tent at night. They pump a special substance called Riboviran into the tent so that he breathes it. Being that Jen is pregnant, she will not be able to be near him most of the time because it could cause birth defects. Thank you to everyone for praying for us during this tough time. We love you all, Matt

Hi everyone! Taylor is much better! He had just finished cycle 9 on Friday when he developed a high fever in the early part of the afternoon. He was vomiting because of the chemo, too much Pediasure in his belly, and some congestion he's been dealing with, post RSV. He is now over the RSV. He had another chest x-ray last night and it looked terrific! His lungs look and sound clear. He's in a private room again because of his recent bout with the RSV. They are very careful here with these kids…and I’m very glad for that! Taylor's fever had gone up to 104 degrees by 5:00 pm! By 9:00 pm, his fever had broken and he was back to himself again. Praise the Lord! The fever was from a broviac line infection. He's had a few of these since he began chemo. They are very common. Antibiotics kills the infection in a few days, however, he needs to receive IV antibiotics for a full 10 days. Unlike yesterday, today (Saturday) he is happy, and seemingly healthy. He will need to be here in the hospital until after he's neutropenic and his counts are up again. We hope to be able to come home on January 26th, ten days from now! His counts are usually up by the Monday after neutropenic week. We've been inpatient so often that we don't know where home is anymore! Tonight is his 82nd night at MSK since we began in June! I'm sure we'll break 100 by the time we are done four weeks from now! He's spent an additional 80 days or so on the outpatient floor getting chemo and transfusions.

It wasn't easy bringing him here for cycle 9 this past week. He was feeling so good at home during that break. After only 5 weeks, his eye lashes started growing back and he now has some fine brown hair coming in all over the back of his head. Yesterday, I told my mom while we were here for chemo and he was lying in that bed with fever, that there are many days that I feel like I'm going through chemo as well! When he hurts, I hurt. When he's down, I'm down. She said she's felt the same way about me, watching her own child go through this with her little one. I remember learning that our Heavenly Father feels the same way about us! He also hurts when we hurt and He knows the outcome! Now that's a parent! We'll keep you posted on his progress. Please pray him as he heals from the line infection and his counts recover over the next 10 days or so. Please also pray for patience for Matt and I as well. The end is near, but it's not over yet. We’re dealing with being pretty tired and beat up from the whole experience thus far. Taylor's really going out with a bang! Thanks everyone! We love you all, Jen

P.S. Happy 90th Birthday to Great Grandma Kramer. Love, Taylor.

Hi everyone! Taylor is doing very well. His last two RSV swabs came back negative so he is off isolation and free to move about the floor! He has been fever free since Friday night and his infection in his broviac line seems to be clearing up. He had another gram B negative infection. The cultures came back negative for a broviac line infection this morning. If it was positive again this morning, they were going to have to take his broviac out today! They were going to put a temporary single line in instead, since he's almost finished. Praise the Lord that it had cleared up with the antibiotics and he doesn't have to go through that for the 3rd time. (His first line fell out back in August!) This kid's been through enough already, more than most people do in a whole lifetime! He's really talking a lot now. In fact, he's learned the art of bossing us around. In general, he's very polite and he gets quite upset when we scold him, even in a mild tone. However, his new favorite line is, "No, I'm the boss!" We're trying to nip that in the bud before it becomes an issue. We're constantly reinforcing the fact that Mommy and Daddy are the bosses, not Taylor. Then we have certain nurses who come in and say to him, "Ok Taylor, you're the boss!" They let him help draw blood from his lines and choose which arm for blood pressure every few hours. He actually sticks the vile on the end of his line all by himself, and then pulls it off when it's full of blood. Here in the hospital, he's made to feel like he's in charge. Then we get to bring him home! He's doing really well though and he's very calm and content. He loves to "read" books and spend hours playing with his matchbox cars and Thomas trains like any other little boy his age. He will be 3 years old on March 31st! I can't believe how fast these three years have gone by. Thankfully, even the past 8 months of his treatment seemed to move along quickly. There are days that each minute feels like an hour though. Thanks for all your prayers. We’ve felt the power of your prayers, no matter how difficult and long the day might be for us. We love you all, Jen

Hi everyone! Taylor is doing well. He's slowing down a little more each day now that his counts are going down. He must be tired because he took a three hour nap today! He never does that! He had a platelet transfusion today. His blood is still in a good range for now. Dr. Meyers (Dr. Wexler's associate) came in today and checked him out. He said that he looks good and his line infection had cleared up very well. He also brought up the chemo issue again. He said that he knows how I feel about Taylor getting all 10 cycles, but he believes that Taylor can certainly do without this last cycle. He had said again that Taylor is clean and that the 9 cycles were very sufficient to treat him. He would rather not give him cycle 10 and run the risk of Taylor having yet another complication from it. His body has been so beaten down by all the chemo he's been receiving over the past 8 months. He has had the RSV and two serious blood infections during the last four cycles. I replied to Dr. Meyers, "If the recipe calls for 10, I would like all 10 cycles if Taylor is able to get them." He then answered, "Yes but sometimes the recipe calls for butter, and we can replace it with margarine." If Dr. Wexler agrees with this as well, then I'll be fine with it. I was also told that skipping the last cycle will not change his excellent prognosis. As he left the room, he said that we'll talk about this more over the next couple of days. I was talking to Taylor's nurse and she said that this happens quite a bit and it's often the last few cycles that are skipped in many children. We'll see what happens over the days ahead. I'll keep you posted as to what they decide. Please pray for Taylor as he recovers from this cycle and his counts come up. We hope to come home early next week. We love you all, Jen

Hi everyone! Taylor's counts are on their way up! He's very quiet and seems to be feeling yucky because of his low counts. We're hoping they will be up enough for him to go home by Tuesday...Wednesday the latest. It's been a long stay this time. Ten days today (Sunday) so far! Matt and I figured it out. It costs $5,000 dollars a day for Taylor to be inpatient. He's been here 90 days all together as of today. That equals $450,000! That doesn't include outpatient, doctors, chemo, transfusions, surgery, etc... This treatment will be well over a million dollars when it is all over! Taylor's only been up and out of his bed twice since he was admitted. Every time we ask him to get up out of his bed he says, "No, I can't walk...I not gonna do it!" He's really going to need those swim lessons and that physical therapy after this is all over now! Once he gets home and feels better, he'll start to perk up and be more active. As far as if he is going to get cycle ten or not...we don't know yet. We will find out this week for sure. Please pray for counts and strength for our little guy. We're so ready for this to be all over! We love you all, Jen

P.S. I was supposed to have my sonogram tomorrow (Monday 1/26). Since we are still in the city, I will be changing it to Thursday or Friday of this week. Im almost 23 weeks and the baby is getting bigger by the day. The best time to have a sonogram in order to tell the gender is 20-22 weeks. Matt and I are hoping that we will still be able to find out the gender when we go this week. If not, well,this baby was a complete surprise, so why not go all the way and have the gender be a surprise too! We're fine with that. We want a healthy baby. That's all that matters. I'll keep you posted!

Hi All. Taylor's counts were down to 0.0 again today. They are saying it is because he still has the RSV and his body is trying o fight that and recover from the chemo. Tomorrow will tie our record for the most continuous days at 13. It looks like the earliest we will be going home is Fri. That will be 15 days straight. The good news is that we are not going to be doing the last round. The doctors feel that his prognosis will be exactly the same and the risks are not worth it. Jen and I are fine with this decision. We trust these doctors and we trust the ultimate Physician, God.

Taylor was not doing so well this morning. He was very lathargic and wanted nothing to do with anyone or anything. He also received blood and platlets. Once the blood"kicked in" he was a new kid. Next week he will be getting his scans and then the broviac lie will be coming out next Fri.

Jen and I both thank you for your continued prayers. We are having a fund raiser on Mar. 27th, 7 pm at the American Legion in Lincoln Park. It will be a Beefsteak dinner. I will be post more details in the near future. We love you all, Matt

Hi everyone! Taylor is doing very well now. His counts are on their way back up again. His white blood cell count was 0.3 today. He received platelets this morning. We will probably be able to go home tomorrow...Friday the latest! Dr. Meyers said that he looks great today! He received blood (my Dad's actually) yesterday and he is pink and happy today! Thank you again and again to all of you who gave blood and platelets for Taylor these past eight months! You all helped save and improve his life! Not only that but he's a little bit of all of you now.

Matt told you that he is not going to get cycle ten. Both Dr. Wexler and Dr. Meyers are in full agreement that he will do fine without it and that it's not worth putting him at risk for another line infection. His prognosis is still the same...excellent and a full recovery! No cancer cells could be found at all any where in his body when he was tested after his surgery. Initially, the only place in Taylor's body that showed that there were cancer cells was the tumor and two lymph nodes right next to it. They are now out of his body and they were dead when they were tested after surgery. When the area where the tumor existed was tested, the results came back clean. No cancer cells! That was even before radiation! Dr.Wexler told us not very long ago that since he was on a very aggressive protocol of chemo, it's highly unlikely that any cancer cells in his body, microscopic or not, could have survived even past the first few big cycles of chemo! They feel that this last cycle is just not necessary or worth putting him through it at all. He's had a rough past few cycles and his body has had it! Taylor tested negative for the RSV last week, however, now he is testing positive again. He has no RSV or cold symptoms, but there are traces of it in his blood stream. Now that he is done with chemo, his counts will stay up for good and it will get knocked out of his system in the next couple of weeks. Praise the Lord for that and all He's done in getting him through this and healed! We are so relieved that it's just about over! His suffering is over! There is nothing that can prepare you as a parent for something like this. And you never really get used to it either. We just do our best to try to make him comfortable each day, roll with the punches, be as patient as we can, and PRAY!!! In the grand scheme of the universe, God healed one tiny child. For Matt and I He moved a mountain!

I will let you know what his schedule is for next week concerning his post treatment scans and when his broviac is removed. I will continue to update the web site a couple of times a week over the next month or two to let you know how he is recovering and dealing with his physical therapy, as well as life after cancer treatment! Thank you to all of you who pray for him regularly! We love you all, Jen

P.S. I will finally be having my sonogram on Monday (2/2) at 3:30pm! I'm 23 weeks now so I hope we can still tell the gender! I'll keep you posted! Jen

P.S.S. Jen and I would personally like to thank Jerry Iannuzzi (our neighbor across the street) for clearing the snow in my driveway and the walkways while I was in the hospital with Jen and Taylor. Thank you very much.

Hi everyone! We finally came home yesterday (Friday) afternoon! It was a long 15 day admission, but the last one, praise God! His nurses came in and gave him plenty of kisses and hugs as we were leaving. He really bonded with them and he knows them by name! I'm going to miss them as well. They were more than nurses...they were my friends. These girls do a fantastic job caring for these little ones, and I could see how much they really love them! Taylor spent exactly 100 days and nights on the inpatient floor total! We are planning on visiting them on the floor next week to take some pictures of them with Taylor. I'll put some on the web site afterwards. It's quite possible that he has had the last transfusion he will ever receive this past week. His counts are excellent and they will stay up from now on. His platelets are taking there time, but he is manufacturing them slowly on his own. He is feeling terrific!

He pushed his stuffed monkey in his stroller all the way out to the hospital parking garage when we left yesterday! He spent the rest of the day playing with his toys as if he'd never seen them before! It's so great to see him happy and feeling good, especially knowing that he will now continue to feel good! He has eye lashes and eyebrows now! We are really looking forward to seeing his hair grow back in the weeks to come. He hasn't eaten a single thing in over three weeks! We hope he will start again now that he is recovering from this last cycle and is no longer feeling sick to his tummy. I am planning on keeping his feeding tube in for another month or two so that he can be weaned off of it and maintain his weight on his own. Please pray for him in reguards to his appetite. We will find out his schedule for next week on Monday. Thank you for all your prayers everyone! We love you all, Jen