June 2003, Tyler 4 1/2, Rachel 9 months
UPDATES
September 20, 2003 Thursday evening Tyler got a fever so we headed to Carle hospital. His fever came down without Tylenol and he spiked one temp of 100.7 that evening and then it has been down ever since and he has been feeling good. He received blood and platelets yesterday. This morning (Saturday) we heard he has a blood infection so I imagine we will be in for a few days yet. September 17, 2003 Tyler had his chemo last week at Carle Clinic. He was able to go to preschool each morning then we headed to the clinic for chemo. It was a tiring week for me but it was great that Tyler got to go to school and we all got to sleep in our own beds! Tyler seems happy at Carle, he has learned his way around the Cancer Center, especially where the muffins are and "The Play Guy" (child life specialist - Gary). As usual he tolerated the chemo very well and was not sick. His Hg was already pretty low so we scheduled to go in Monday to get a transfusion. We will check his counts again on Thursday. I expect we are neutropenic already so we will hope for no fevers. We are scheduled for a CT scan at Carle on Thursday, September 25. We went to the "Light the Night" Leukemia and Lymphoma Societies fundraiser this past Saturday and Tyler had a blast. August 29, 2003 Last Friday, Tyler's temperature went up to 101 so we were admitted to the hospital for antibiotics. He received a blood transfusion on Saturday and platelets on Sunday. His temp stayed below 101 so we were released on Sunday and Tyler made it to his first day of preschool on Monday and rode the bus. Then Monday afternoon his temp went back to 101 so the home health nurse came out and drew blood for a culture and a CBC and he got an iv dose of antibiotics. His ANC was up to 700, so he was no longer neutropenic and we were able to stay out of the hospital. He hasn't had a fever since Tuesday morning and has been feeling good. Tyler's blood counts yesterday (Thursday) were Hg 8.3, platelets 37, WBC 8.4 and ANC 7560. So we will keep giving him the GCSF shots a couple more days and since his platelets are still pretty low we will hold off the next round of chemo till the week of September 8, (which is Rachel's 1st Birthday!). Another reason we decided to wait a week for the chemo is I am planning to switch our Health Insurance to Health Alliance (Carle Hospital) which is effective Monday and we might need some time to get it worked out to where we can now receive chemo in Champaign instead of Chicgao. I am really nervous about making this change in the middle of this but we don't know if Personal Care is going to let us keep going to our Dr.'s in Chicago anyway. We are hoping that Health Alliance will let us continue to follow with our Dr. in Chicago as long as we do any treatment down here that they can do (chemo, scans), which will be more convenient for us anyway. August 21, 2003 Tyler received his outpatient chemo last Tuesday - Friday. He felt fine all week and then Saturday we went to ride on the "real" Thomas the Train. Today, Thursday, his blood counts were Hg 6.7, platelets 36, WBC 0.15 and ANC 39. Next Monday is his first day of pre-school and this time he will ride the bus which he is very excited about. If his blood counts recover in time, he will have chemo again Sept. 2 - 5 and then is scheduled for a CT scan on Sept. 23. September is Childhood Cancer Awareness month, please consider wearing a gold ribbon, the symbol of childhood cancer during this time. You can get a free gold ribbon pin at http://www.childhoodcancerawareness.org/goldribbon.asp or be linked to the site to purchase more. Over the years lots of people have asked us about having a benefit for Tyler and we declined. We are now considering it and I thought I could also help do my part to raise awareness of childhood cancer at the same time. If you have any ideas for this, please e-mail me. August 8, 2003 On July 30th, Tyler had a CT of the head which came back clear. Then on the 31st he went in for surgery. The Dr. went in first with a scope and found out that the cancer had spread to the chest wall and diaphragm so he removed some of the tumor from the chest wall for pathology and stopped. Since they did not enter the lung to attempt to remove any of the tumors there, he did not have to have a chest tube and he recovered from the procedure very quickly and was released from the hospital the next day after a CT with contrast of his abdomen (which was clear). At this point, they feel all further treatment will not be to cure. We discussed the possibility of radiation but the Dr. does not want to do radiation at this time because currently, Tyler is having no symptoms and the radiation could cause complications with no chance of cure. We hope by continuing chemo we can keep the tumors mostly stable, let him enjoy life and continue to pray for a miracle. He tolerates the chemo very well and is seldom sick from it. Tyler is feeling fine and we are heading for some roller coasters this weekend! July 29, 2003 Tyler's blood counts today were Hg 7.1, platelets 197, WBC 9.3 and ANC 5859 so they are all good and we are set for surgery at 12:30 Thursday. We are going up tonight (Tuesday) because he is having a head CT Wednesday at 9am (just to make sure everything is still ok). I (or someone else) will try and post information after the surgery on the Discussion Board. To get to it, click on the "Rhabdoid Kids" button above and then click on "Rhabdoid Discussion Board". We will be staying at the Ronald McDonald House so if anyone wants to send a card it might be easier to send it there instead of the hospital in case we get released earlier than we think. The address and number is: 5736 South Drexel Avenue Chicago, IL 60637 (773) 324-5437 (773) 324-8029 - fax. July 23, 2003 We met with the surgeon at University of Chicago yesterday, Dr. Liu, regarding Tyler's surgery on July 31st. The plan is to first go in with a scope on the left side (the lung with the most tumors) and look around to make sure the tumors have not spread outside the lung to the chest wall or anywhere else. If they don't see anything unexpected, they will continue with the thoracotomy. The incision is made on his side, under the arm, between 2 ribs. The Dr. will then attempt to remove all the tumors he can find. With each tumor removal, some of the surrounding healthy lung tissue will also be taken, so that the margins are clear. If there are too many tumors that they can not remove them all and still leave him adequate functioning lung, then they may not remove them all but remove the largest ones to "debulk" the tumors. The Dr. said the hospital stay could be as short as 4 days but we will expect longer. Then they will examine whatever they remove and see if it is live tumor or dead tumor. Depending on what they find, they may or may not do the same surgery on the right side to remove the tumors there. If they decide to do it, it could be about 2 weeks after the first surgery. Tyler's blood counts yesterday were, Hg 6.6, platelets 12, WBC 5 and ANC 3000. So we decided to hold off on any transfusions because we think he is on the way back up and we will continue the GCSF shots a couple of more days. We will check his blood counts again on Thursday. July 19, 2003 Tyler is feeling good. We are 3 days past the point where he has ended up in the hospital with a fever the last 2 rounds so we are pretty happy about that. His blood counts Thursday were Hg 7.7, platelets 60, WBC 0.16 and ANC 20. So his ANC is pretty much 0 but the other counts were better than expected. We plan to skip the blood counts Monday morning and wait to have them checked Tuesday when we go up to meet with the surgeon. We don't know much more about the surgery other than they do plan to try and just take out the tumors (not the whole lung) and they usually do 1 lung at a time a few weeks apart. July 14, 2003 Tyler's CT scan showed "mild interval progression", in other words, the tumors grew a little. His Dr. decided to repeat the same chemo and have the surgeon look at the scans again. His blood counts recovered nicely and we went ahead with chemo last Monday through Friday. Tyler's oncologist spoke with the surgeon reviewing the scans on Monday but then left town before we got the chance to talk with him. All we know so far is that the surgeon thought there was something he could do for him and we have a meeting to discuss it with him on July 22 with a possible surgery date of the 31st. We should find out more about their thoughts this week. Tracy Wilson June 29, 2003 Wednesday afternoon, Tyler got a temp of 101 so we headed to the hospital. He was neutropenic and had a low Hg so he got a red blood cell transfusion. By Friday morning his Hg was under 7 again and his platelets were 8 so he got blood and platelets. His Hg on Saturday was 13! (were not sure how we got this great of a jump from 6.5) and his platelets were only 15. We decided to give him more platelets and it was determined later that he had only received half of the platelets he was suppose to get the day before and that is why we saw such a small gain. His ANC remained zero on Saturday. His temp got up to around 102.5 on Wednesday night and then his last 101 or higher was Thursday night so we were let out on Saturday night after all his cultures remained negative. He ate very little his entire stay and lost a few pounds. Right up till the time we were released he had never gotten out of bed and he felt ill and weak. It was amazing how after being home only a few minutes he was playing with the cat and the dog. We went to my Aunt's to watch fireworks that night and and even though he had eaten very little for 4 days, he was running around playing. Today (Sunday), he has felt good and ate well. Monday morning we head to Chicago for a CT scan. June 24, 2003 Tyler had his chemo in Chicago last week and all went well. The only time he got sick was in the car on the way up before we even got started! His blood counts yesterday (Monday) were Hg 7, platelets 104, WBC 3.9 and ANC 3705. So all his counts are still good except his hemoglobin, but he seems to have plenty of energy so we will wait to see what his blood counts are Thursday and I expect we will need a transfusion then. Hopefully, we will make it this week with no fevers so we can stay out of the hospital. Tyler is attending Vacation Bible School in the evenings and is really enjoying it. His next CT scan is scheduled for next Monday the 30th. They didn't reschedule it after we got a week behind with his chemo so we will go up just for that and they will have a week to get the results and decide what chemo to do the next week. I have a new picture of Tyler and Rachel taken the first of June, just days before Tyler started losing his hair again. (see top of page) June 11, 2003 Tyler's blood counts on Monday were hg 8.4, platelets 113, WBC 28 and ANC 27,700. His platelets really recovered well from last week and we probably could have done chemo this week, but too late now. So we will enjoy this week off and head to Chicago on Monday. He has very little hair left but it does not seem to bother him and he is feeling good. June 6, 2003 Yesterday morning after we did Tyler's blood draw, we headed out to do some fun things as I did not expect there to be any problems with his blood counts. After playing at the playground for about 30 minutes, I decided to call home and check for a message with his blood counts. His counts were Hg 8.2, WBC 4, ANC 3,000 and platelets only 10! Oops, the playground is not the ideal place to be with low platelets. So we went into the hospital (Champaign) to get a platelet transfusion and didn't get home till 10:30 at night. All his other blood counts are doing fine, we do still have to continue the shots in the leg every night. However, he will not be ready for chemo again on Monday, and since it is a 5 day outpatient course, we will plan on starting chemo the next Monday. So, we will enjoy the weekend at a family wedding. For those of you reading this who are local, if you go to the Showcase of Homes, be sure to look for our family pictures in one of the houses. Staske Photography took some absolutely wonderful black & white pictures of us and are displaying them in one of the homes. June 4, 2003 Tyler was released from the hospital on Saturday morning although his ANC was still 0. Sunday evening he had a temperature of 100.6, 101 means we have to go back to the hospital. It never went any higher and Monday morning it was around 99.5 when we checked his blood counts. His ANC was 224 so we are on the way back up and he hasn't had anymore fevers. We are still doing GCSF shots, hopefully his counts will be up enough on Thursday so that we can stop the shots. The past 2 mornings Tyler's pillow has been covered with hair and it is noticeably thinner. He has not commented on it yet. If his blood counts are ready, we will go back to Chicago on Monday for 5 days of chemo. May 30, 2003 On Wednesday afternoon, Tyler got a fever of 102 so we headed to the hospital for admission and iv antibiotics. His last fever (over 101) was Thursday morning and all his cultures are still negative so we are hoping to get to go home Saturday morning. His blood counts today were hg 6 and platelets 11 so he is getting blood and platelets today. His ANC is basically zero, we will check his counts again tomorrow morning and hope to see it climbing back up. May 23, 2003 Sorry so long between updates. I wrote the May 15 update below but never got it posted. (Sometimes I will post scan results on the Rhabdoid Discussion Board, so you can check there.) We just got back today from our 5 days of chemo and Tyler did very well. He got sick just 1 time on Tuesday afternoon. Since we were doing it outpatient and staying at the Ronald McDonald house we got to do some fun things too. We spent a few hours at the Field Museum Tuesday afternoon and the Museum of Science & Industry on Wednesday and then visited with his cousins on Thursday. Luckily, this gave him something to look forward to as each morning when we were heading to the clinic he would say, I am never, ever, ever going to the hospital again. He used to be so good about going, I guess it was time. I asked for a copy of the final written report on his CT and it says No Change. That certainly made us feel better that it has not grown much in this 6 week period. It does not change his Dr's overall opinion that it is growing and it was time to try a new chemo. The last scan, the Dr. felt was mostly unchanged but the final report listed certain areas as growing. The reading of these scans is not an exact science. Tyler had a chest x-ray this week so when we go back for the next round of chemo (we plan to repeat this same one) they will do an x-ray first to see if anything has changed significantly. He is scheduled for his next CT scan June 30th. His Hg had jumped back up to 10 so he did not need blood like I thought he would. We will have to start the GCSF shots tomorrow night and check blood counts twice a week again starting with this Thursday. He has had a cough this past week, but seems to be getting a little better. Last Saturday, we attended the Relay for Life and he walked the survivors lap hand-in-hand with a 9 year-old girl named Katy, it was so sweet. Tyler's little sister Rachel is doing fine. She is now 8 months old and was about 17 1/2 lbs last month. Tyler still only calls her "Sweetie" and tells people she is HIS baby. May 15, 2003 Tyler's Dr. looked at his CT scan Tuesday and says it has grown enough that he knows he wants to switch chemo plans. I have not seen the final report yet. We came home and the Dr. called us the next day with a new chemo plan. He wants to do a 4 drug, 5 day regimen. Vincristine (1.5 mg/m2) on day 1, Topotecan (.75 mg/m2) and Cytoxan (200 mg/m2) on days 1 through 5 and VP-16 (100 mg/m2) on day 5. Topotecan is the only drug he has not had before. We expect this will be pretty hard on him and we will do GCSF shots again and I expect he will lose his hair which might bother him a little more this time. We had our choice of doing it inpatient or out. We are going to try it outpatient starting Monday and we will stay at the Ronald McDonald house for the week. We hope to make it out to the Relay for Life this Saturday at Centennial HS, Tyler will be thrilled to get another "medal" and look for luminaria's with his name on it. For more information on the Relay for Life see http://www.acsevents.org/faf/home/default.asp?ievent=22288# Unfortunately, Tyler will miss his last week of preschool and their family party that is Thursday evening. So tomorrow will be his last day, he will miss it, he has really enjoyed the last few weeks. He has felt good these last few weeks since I updated and his counts stayed pretty high this round except that his Hg got down to 6.6 and was only up to 7.2 last week so we will get a blood transfusion while we are up there next week. April 26, 2003 Just 2 days after getting out of the hospital last week with neutropenia and fever, Tyler had a temp of 103. We called the Dr's and ended up having the home health nurse come to the house and get a blood culture and CBC. The results came back that he had an ANC of 990 so we didn't need to go to the hospital this time. We just treated it with tylenol and it went down. Over the next several days fevers came and went but seemed to get lower and less frequent as well as his cough. Saturday morning he was feeling ok and we made it to an Easter Egg hunt which he enjoyed, he had a little fever that Saturday night but then Easter Sunday he made it the whole day with no fevers and had a great time. He had another low grade fever Monday night before we headed back to Chicago for chemo on Tuesday. Tyler slept in the car on the way home and when we got there his temp was 103.5. It went down pretty quick by getting his coat off of him and some Tylenol. Tyler finally made it back to preschool on Wednesday and Thursday and then back to Chicago for chemo again on Friday. And once again, Friday evening his temp got to 102.7 but is fine today (Saturday morning). These past few rounds of chemo he has been consistently having fevers from the chemo again, there for a while they had stopped. Hopefully, he has gotten rid of the virus that caused the problems last round and these next few weeks will go smoother. He is scheduled for another CT scan in 3 weeks on May 13th. Tracy Wilson April 14, 2003 A lot to update since last time. First, we went back for chemo again on Friday the 4th. The final report of Tyler's chest CT listed some areas as unchanged, some as larger and some as slightly larger. Tyler got a fever again that night (while we were at Medieval Times!) but it went away with some Tylenol. He then had a fun weekend playing with his cousins in Chicago. The occupational therapist met with us this week to teach me how to "brush" him and other therapies to help with his sensory defensiveness (mostly the clothing issue). We also visited a pre-school the therapist suggested for him. Since we are getting out of cold/flu season and his counts have been staying really high, we decided it would be good for him. He went Wednesday and really enjoyed it. Thursday morning we checked his blood counts and we were very surprised that his ANC was 0! He also had a temperature of 99 so we stayed home and watched him. By 3 pm, it climbed to 101 so off to the Dr.'s office and then we were admitted to the hospital. He continued to have fevers on Friday, sometimes as high as 103 but all his cultures remained negative. His fever broke Friday night and we were able to come home on Sunday morning. So why did his WBC count drop so much this time when we are still doing the same chemo? We don't know other than maybe whatever virus he had helped to suppress the WBC count also. We will check his blood counts again this Thursday. We did get one bit of good news this past week, our insurance company has approved us to continue going to the University of Chicago Hospitals! April 2, 2003 The Dr. looked at Tyler's CT scan yesterday and felt for the most part it was unchanged. There were a couple he thought might me a little bigger and possibly a new one but said it would have to be looked at in detail to know for sure, so we will wait to see what the final report says. We went ahead with the same chemo (navelbine & gemcitibine) so we will go back Friday for more chemo. On the way home last night Tyler got a fever of 101.6. We gave him a dose of Tylenol and 2 hours later the fever was gone and he was running around playing. Tracy Wilson Mom to Tyler dx Rhabdoid Tumor of the Kidney 3/01, lung relapse 2/02 also, Rachel Rosella Wilson "Sweetie", born 9/8/02 March 22, 2003 Tyler had his chemo on Tuesday and Friday of the week of March 9th. He had a little fever on that Friday and a few headaches since. His blood counts on Thursday (day 10) were Hg 8.4, platelets 64, WBC 2 and ANC 1420 - all good. A few weeks ago, we got Tyler a dog, a 1 year old beagle he named Lou. He stays outside and has jumped on Tyler a few times in his excitement so Tyler is a little scared to get too near him but loves to watch him. Last weekend we had Rachel baptized and had a nice gathering of family including Aunt Tammy (from Atlanta) and Uncle Doug (from New York) who were godparents. Tyler loves having all his family around for a "party". This past week Tyler had a pre-k evaluation of which he did well, we also met with an occupational therapist to discuss his sensory issues (mainly aversion to clothes). She though he might benefit from some therapy but we have not heard back on the details yet. Tyler's (and Rachel's) loved pediatrician, Dr. Miller has moved so we must switch and then we received a letter from our insurance that they no longer have an agreement with University of Chicago hospitals and we must switch by the end of April. This is very upsetting to us and we intend to try and fight it but the insurance company and local Dr's are telling us it is not likely we will win. Tyler's next CT scan is April 1st, we will also do an abdominal ultrasound at that time. March 3, 2003 Tyler had his chemo as planned the week of 2/17. His blood counts last Thursday (day 10) were Hg 9.1, platelets 62, WBC 1.4 and ANC 1022, which were really good. Then on Friday, he started getting low grade fevers and Friday night it hit 102. We called the on-call Dr. at Chicago and since his ANC was high on Thursday, they told us we could wait till morning to check his blood counts to make sure he wasn't neutopenic (ANC below 500 in which case he would have to be admitted for antibiotics). They said we could go ahead and give him a dose of tylenol which we did and his fever went down and by morning it was gone. I talked to his Dr. that morning and he said since the fever was completely gone we didn't need to check his blood counts and other than his cough and runny nose, he has been fine since. So we will check his blood counts again this Thursday and he is due for chemo again next week. He continues to do well, the most recent problem being that he has developed a real aversion to clothes - shoes, socks and underwear in particular. It is a real battle every day to get dressed, we have bought a lot of different underwear and socks trying to find something to make him happy and we regularly put his socks on inside out so he can't feel the "bumps". But as frustrating as it is, we are very happy this is the worst thing we are dealing with right now. February 15, 2003 We had a nice Valentine's Day yesterday, much better than last year when we got the call that they found several spots on Tyler's chest CT. So, here we are 1 year and 15 more rounds of chemo later. Tyler is doing very well compared to most children who relapse. Only 2 CT scans have shown growth, after the 2nd round last April and then in September after 4 rounds of Actinomycin D. None of the scans have ever shown shrinkage although we are hopeful that maybe the chemo has killed some of the cancer cells but they are calcifying and the CT scan can not tell the difference. He has tolerated the chemo he was on in the summer and the gemcitibine and navelbine he has been on since September very well. He has been sick very little, only needed a couple of transfusions and his ANC (immune system) has been staying pretty high lately. He seems to have good energy, continues to grow and even has his hair, although thin. His blood counts on Feb 6th (day 10 after chemo) were Hg 8.6, platelets 43, WBC 1.2 & ANC 780. This past Thursday, Feb. 13th they were Hg 9.1, platelets 205, WBC 2.45 & ANC 1330. So we will go back for chemo again twice this week. His next CT scan is scheduled for April 1st, we are going 3 rounds between scans now. January 29, 2003 Tyler's scan yesterday showed no significant change and we went ahead with the same chemo. The Dr. said he will have a definitive answer in 3 weeks on whether or not they think surgery is worth the risks involved. At the moment he feels we should continue with this chemo since it does not cause him any problems and he mentioned only scanning every 3 months, but I am not so sure I feel to good about that. Tyler gave me quite a scare the night before the scan, he woke up in the middle of the night having a hard time breathing, making alot of noise and had a croup like cough. Apparently, it's just the typical kid cold/croup and he was better last night. January 26, 2003 Tyler had his chemo (gemcitibine and navelbine) as planned on Jan 7th and 10th. We did end up checking his blood counts on the 15th because he had a nose bleed the day before. His counts were down, but still good and we did not need to check them again this round. Then we headed south on the 18th. We stopped in Atlanta to visit family for a few days and then headed to Disney World. We got in a couple of nice warm days at the parks before the big cold hit (I think the high Friday was only in the 40's). Tyler had a good time and we were able to "forget" for a few days. He rode his favorite ride, Goofy's Barnstormer (kiddie rollercoaster) 8 times! He also saw 3 different 3D movies and "Honey I Shrunk the Audience" twice. We just got home this evening (Sunday) and will head to Chicago tomorrow for his CT scan on Tuesday morning. January 3, 2003 Tyler had a great Christmas. He got lots of Thomas the Train and VeggieTales presents! We got several inches of snow on Christmas Eve and he went sledding twice that weekend. He has felt good and we are not doing the shots this round. He was only scheduled for blood draws twice because they don't expect his blood counts to go low. We never did get his blood drawn on Monday as the nurse was having a hard time accessing his port and he was getting hysterical during it. So, we will wait and just check them this coming Monday. If all is well, we will do the same chemo again (gemcitibine and navelbine) on Tuesday and Friday. We then have 3 weeks before the next CT scan on January 28th. We are thinking about going to Florida and Disney World before the scan. Check out the new pictures from Christmas. December 18, 2002 Tyler's oncologist looked at his CT scans yesterday and said there was no change. He decided to do gemcitibine and navelbine chemo again so we started that yesterday and he will have it again on Friday. The radiologist will look at the scans and give a final report and they are going to have the surgeon look at it again to see what he thinks about going in and removing the tumors. The Dr. mentioned that it could mean removing the entire left lung where most of the tumors are. There are 2 small tumors in the right lung that would have to be taken care of also. He has never yet had radiation to the lungs, the lungs can not handle much radiation so they wanted to shrink them with chemo or remove them surgically before they do radiation. Tyler should feel good over the holidays but we have a lot to think about in terms of the next step. His counts yesterday were Hg 9, platelets 392, WBC 4.5 and ANC 3735. So his counts are rebounding great! For those who are not familiar with blood counts (I wish I wasn't!), normal hemoglobin is 12 - 17 and we typically transfuse if Tyler falls below 7. Normal platelets are 150-350 and we typically transfuse when it is below 10 or if he has symptoms (bleeding). A normal white blood cell count is 3.5 - 10. When we expect his WBC count to go low we do the shots of neupogen (GCSF) to help boost them and recover faster. We have had WBC counts of zero for a few weeks at a time before. WBC's are the infection fighters and an indication of how well he will be able to fight infection. The ANC (absolute neutrophil count) is a calculated number involving the WBC count and WBC differential (how many of what types of WBC's are present) which is a better indicator of infection fighting ability than the WBC count alone. Anything over 1000 is good. December 15, 2002 Tyler's blood counts on the 9th were Hg 7.8, platelets 180, WBC 4 and ANC 2800. At that point he was ready for chemo again so we have not had to check blood counts again since. He has felt good even though he has a runny nose and a little cough. He is scheduled for a CT scan on Tuesday, the 17th. We will have to wait for the results of that to determine what will happen next. Please pray for good results. December 5, 2002 Tyler's blood counts on Monday were Hg 7, platelets 44, WBC 7.7, ANC 7000. Today, Thursday they were Hg 7.8, platelets 68, WBC 4.7 and ANC 3000. So we are on the way back up without ever getting too low. His WBC and ANC are lower than Monday because we stopped the GCSF shots but the numbers are still high. For the first time with this chemo, Tyler did not get any fevers in the first few days after getting it. One time he felt sick and asked for his nausea medicine but other than that he has felt good. November 26, 2002 Tyler's blood counts were all good Thursday so we went ahead with chemo on Friday and Monday. He had navelbine and gemcitibine again. They still can not get the idarubicin. He is scheduled for his next CT scan on December 17. He has felt good and is playing with and watching "Veggie Tales". A nice break for Mom and Dad from the constant Thomas the Train videos. He still plays with his trains everyday and pretends to be a train, today he is "Salty". Mom, Dad and Rachel all get assigned train names too and he tells us what to say to act out certain scenes. He has quite an imagination! Rachel went to the Dr. last week and she weighed 11 lbs. 4 oz. She is growing fast just like her brother did. Tyler is still very affectionate toward her and loves to make her smile. He still only calls her "Sweetie". November 18, 2002 Tyler's blood counts last Thursday were Hg 7.9, platelets 23, WBC 9 and ANC 8281. We continued the GCSF shots for 2 more nights and then stopped. His counts today (Monday) were Hg 8.4, platelets 54, WBC 6 and ANC 4680. So he is on the way back up and should be ready for chemo on time. He is due to get it on Tuesday and Friday of next week but since that is Thanksgiving week we might move it up to this Friday and Monday. November 11, 2002 Happy 4th Birthday Tyler! Tyler had his second dose of gemcitibine last Friday, they were not able to get the idarubicin so we did not have that. He had a low fever that night and then again Sunday afternoon at his Birthday party. But he has felt fine since and been able to enjoy his friends and family and his new toys! The final report on Tyler's CT scan indicated slight increase. For the first time they gave a measurement of the larger tumor that is near the heart as 3.5 x 5 cm. We have been told that it was hard to measure because it is very irregular in shape. I believe all the other tumors are about 1 cm or smaller. We will check his blood counts on Thursday. November 6, 2002 The Dr. looked at Tyler's CT scans and saw no change. I have not heard the official report from the radiologist yet. So the Dr. decided to do 2 more rounds of the same chemo and scan again in 6 weeks. Tyler had the gemcitibine and navelbine yesterday. There was no idarubicin available so they will try to find some by Friday when we go back for the second dose of gemcitibine. Tyler has had no fevers so far this time and has felt fine. He weighed 37 3/4 lbs and was 38" tall. He had gained a pound and a half since 3 weeks ago, perhaps it's all the Halloween candy! Tyler was a gorilla for Halloween but he really didn't want to wear the costume so we only went to a few houses. Tyler's 4th birthday is on Monday so he is getting excited about that. October 24, 2002 Tyler's blood counts on Monday were Hg 6.6, platelets 18, WBC 0.7, ANC 490. So we headed to the hospital for a blood transfusion, we did platelets also since he had a nosebleed on Saturday night. We did not get done till 4:30am Tuesday, long story, lots of delays. Tyler's blood counts today, Thursday, were Hg 9.1, platelets 34, WBC 1.97, ANC 988. So, it looks like we are on the way up. October 18, 2002 Tyler received his chemo Friday (gemcitibine, navelbine & idarubicin). He did have a fever of 102 that night but it came down after a dose of tylenol and benadryl. We then spent Saturday and Sunday with family in the Chicago area and Monday at Great America. Tyler loves rollercoasters and rode the kiddie one 4 times! Tuesday we went back to the clinic for chemo (gemcitibine) and then home. Once again, I had car trouble but we made it home. The van is in the shop now getting about $500 worth of work to the transmission. It could have been alot worse had my brother-in-law not noticed the leak while we were up there. Tyler had a few more fevers after we got home, but nothing bad. He got sick once on Thursday and has complained quite a bit about his feet hurting (neuropathy from the chemo, I imagine) and some headaches but overall has felt pretty good. We will check his blood counts on Monday. His next CT scan is scheduled for Tuesday, November 5th. October 10, 2002 Tyler's blood counts had come up on October 3rd so we were able to stop giving him the shots and they were still good on Monday October 7th so he is ready for chemo again. We will repeat the same chemo as last time but this time we will be outpatient. My Mom and I are taking him up tomorrow, (Friday) and he will get the second dose on Tuesday October 2, 2002 Tyler's counts last Thursday were Hg 8.7, platelets 91, WBC 1.5 and ANC 1335. Monday they were Hg 7.4, platelets 17, WBC 0.5 and ANC 220. He has had a runny nose since Sunday and he had a fever of 100.6 Sunday evening but it went down and he has not had one again since then. September 24, 2002 Tyler enjoyed his day out of the hospital Saturday at the Shedd Aquarium. He got his second dose of gemcitibine on Sunday morning and we again gave him Tylenol and Benadryl for 24 hours. He did fine and did not develop any fevers so they discharged us from the hospital Sunday evening and we spent the rest of the 24 hours watching him at the Ronald McDonald house and then came home Monday. They plan to do a second round of this chemo in 3 weeks (probably outpatient since he did not have a reaction this time) and then a CT scan in 6 weeks. September 20, 2002 Tyler's chemo got started about 10pm last night (Thursday). He received tylenol and benadryl for the next 24 hours and so far has not had a fever. We got a pass out of the hospital tonight to go to the Ronald McDonald house and will get a pass out again tomorrow. Sunday morning he will get the next dose of chemo and hopefully we will be able to go home Monday morning if he does well. September 18, 2002 Tyler's scan results Thursday were not what we had hoped. The tumors have grown. So we will not be doing surgery at this time but more chemo. The plan is to give him gemcitibine and navelbine, the drugs he had the bad reaction to last May (fever of 105 and quit walking for over a week). They also will be giving him a new drug he has not had before, Idarubicin. Because of the reaction he had last time, he will be receiving this chemo inpatient. We plan to go to Chicago (all 4 of us) Thursday and he will be treated with Tylenol and Benadryl for 24 hours after the chemo to try and prevent a reaction. Then on Sunday, (day 4) he will get a second dose of gemcitibine and again be treated with Tylenol and Benadryl for 24 hours. Rachel was released from the hospital on Monday when she was 9 days old. She is doing well and Tyler is very excited to have his little sister and Mommy back home. September 11, 2002 Sunday evening, September 8th, Tyler's little sister Rachel Rosella Wilson "Sweetie" arrived! She weighted 5 lbs 14 oz and was 19 inches long. Because she was 4 1/2 weeks early, she needed a little help and had to go to neonatal intensive care. As of today, she is doing well, she is off the oxygen and has started bottle feeding. She is jaundice and will have to stay a few more days yet. Paul and Tyler are heading to Chicago this evening for his CT scan tomorrow morning. Please pray for good results. September 6, 2002 Tyler has had vincristine the last 2 Thursdays and has been feeling well and his counts have stayed pretty good this round. We will check his blood counts again on Monday and then he will have his CT scan on Thursday. I had a Dr's appt. today and am now dilated to 3cm and they decided to take me off the medicine to stop contractions so we expect this baby will probably be born this weekend. I am just a few days past 35 weeks, so she is still a month early and may have to stay in the hospital for a little while. Please pray for good scan results for Tyler, and for a healthy baby sister. August 24, 2002 When we checked Tyler's counts on Thursday 8/15, his ANC had fallen below 300 so his chemo was delayed. His counts on Monday 8/19 were Hg 8.3 platelets 231, WBC 1.6 and ANC 1050. So chemo (Actinomycin and vincristine) was scheduled for Thursday 8/22. Wednesday evening I was admitted to the hospital with contractions and was dilated to 2 cm so I spent 2 1/2 days there on Magnesium to stop the contractions and had a series of steroid shots to help in the baby's lung development. I was able to come home this morning (Saturday). Tyler has been feeling well since his chemo on Thursday and they have scheduled his CT scan for September 12. August 13, 2002 There are a couple of new pictures of Tyler on his picture page that were taken in early July but I'll have to get some newer ones put up soon because Tyler has grown his hair back! Right now it looks like he just has a really short cut. Apparently these "lighter" chemos Tyler has been on the past few months are allowing his hair to grow back. Tyler had his Actinomycin-D (chemo) on July 30th and then vincristine on Aug 5th and 12th. We started the GCSF shots after the actinomycin and when we checked his blood counts on day 10 his WBC count was 10.2 so we stopped the shots and on day 14 (Monday) his counts were Hg 8.7, platelets 124, WBC 1.02 and ANC 560. So his WBC count and ANC took quite a dive after we stopped the shots but he has had a cough the past few days also so he may be battling a virus that is keeping his WBC low. Tyler has felt really good these past weeks, no fevers or getting sick. We will check his counts again on Thursday and if they are good he will have actinomycin-D again on Monday. I am still on bedrest and am now at 32 weeks so only 4 more weeks of bedrest to go which will be about the time of Tyler's next CT scan. July 25, 2002 The preliminary results of Tyler's chest CT today was "no change". The Dr. was pleased with this. The plan is to do Actinomycin again (what he just had) with Vincristine also. We will be able to do this chemo here at home. We will do 2 rounds of this and then scan again in 6 weeks. He also had an abdominal ultrasound today and everything there looked fine. The Dr. is going to have the surgeon look at these scans to see if he thinks he can go in and remove the lesions, but this would not be until after these 2 round of chemo. July 18, 2002 Tyler's blood counts on Monday were good, Hg 9.2, platelets 136, WBC 35.5 and ANC 30,500. So we were able to stop the GCSF shots and they were successful in keeping us out of the hospital with a fever and low ANC. We will check his blood again on Monday before we go up Thursday for the scans. It looks like I may not be able to make the trip since I am on bedrest which will be really hard. We won't know what they plan to do next until they get the results of the scans which probably won't be until late in the day Thursday. Please keep Tyler and our family in your prayers. His baby sister is due October 8th, but I will be 36 weeks on September 10th and that is when they will take me off bedrest, 8 weeks to go. Tyler has named his sister "Sweetie" and is very excited about her. July 12, 2002 Tyler has felt pretty good this week. He did get sick one more time on Sunday morning but not since. He has had a couple of headaches, mostly in the afternoon at nap time. His counts Monday were Hg 9.4, platelets 63, WBC 8.5 and ANC 7344 and on Thursday Hg 8.5, platelets 66, WBC 8.8 and ANC 5092. So his counts have not really dropped yet this time, we did decide to do GCSF this time to help his WBC count since last round he dropped to zero and we had two admissions for fever. I went to the Dr. yesterday and have now been put on bedrest. I am 27 weeks (6 months) along. Tracy Wilson July 6, 2002 Tyler had his chemo on Monday, July 1. He did get a fever of 101 on Tuesday afternoon, we gave him some Tylenol and it stayed down after that. Then on Thursday, July 4th, he got sick 3 times throughout the day but still managed to enjoy some time with family and fireworks that night. He has complained of headaches in the afternoons a couple of times this week, but not too bad. He has gotten sick once today, Saturday, but is feeling ok now. We will check his blood counts Monday and we are currently scheduled for scans on July 25th. June 29, 2002 Tyler's counts on Monday the 22nd were Hg 8.3, platelets 243, WBC 1.15 and ANC 300. He had low grade fevers on Saturday and Sunday so I was not surprised that his ANC had not gone up much yet. That evening Tyler had a fever of 101 so we were admitted to the hospital for antibiotics. That night they did another CBC and his counts were Hg 8.7, platelets 265, WBC 2.77 and ANC 2100. Quite a difference on the WBC and ANC from 13 hours before. He did have an unusually high number of "bands" in his WBC count so they showed he was fighting something, probably viral. His fever went down and stayed down that night but we had to stay until Wednesday morning to make sure all his cultures were negative which they were. Tyler started with some diarrhea on Wednesday and is still having it today. He also got sick 3 times on Thursday but has felt good otherwise. Thursday's blood counts were good, a little higher that the last. We currently plan to do chemo at the house on Monday. June 21, 2002 Tyler's blood counts Monday were Hg 7.5, platelets 114, WBC .75 and ANC 140. So we were quite surprised that his ANC had gone back down after being 1500 on Saturday. (And we have not been using the GCSF this time.) The only thing they can tell me is that he might have something viral which is suprressing his WBC count which could be the same thing that caused his fever Saturday and he had a temp of 99 on Thursday. He appears to be feeling great. His blood counts on Thursday were Hg 8, platelets 173, WBC .8 and ANC 160. So his platelets are recovering wonderfully, it is just his WBC count that is lagging. We had planned on doing his next chemo on Monday, but we will hold off until his ANC has reached 750. We are going to be able to do this chemo, adriamycin again, at our house so we will not have to go to Chicago this time. June 16, 2002 Tyler's blood counts last Monday were Hg 8.8, platelets 51, WBC 1.35 and ANC 1162. His gums appeared better and were not bleeding much when we brushed his teeth although one morning he had blood spots on his sheets from his mouth bleeding a little during the night. He complained of headaches several times this week, mostly in the afternoon about nap time. Thursday's blood counts were Hg 8.5, platelets 62, WBC 1.04 and they said "quantity not sufficient" to do a differential on the WBC so we couldn't calculate an ANC and have to assume it is 0. Friday night Tyler cried for about 30 minutes saying something hurt but we couldn't figure out what. On Saturday morning Tyler woke with a fever of 101.8 so we had to be admitted to the hospital for iv antibiotics. His fever was around 100 all day Saturday but Sunday morning it was back to normal. His blood counts from Saturday were Hg 8.0, platelets 62, WBC 1.75 and ANC 1575. So, since he was no longer neutropenic (low ANC) we were able to come home Sunday at noon (instead of staying the usual 48 hours). Tyler has felt great today and we got to enjoy some nice family time together on Father's Day. June 8, 2002 We went to the clinic Tuesday for Tyler's chemo. That night he had a fever of 102 but was still running around playing like normal. We gave him some Tylenol and a bath and it went down. That night and the next day he had a couple of low grade fevers 100, 99 but we gave him nothing and they went away. He has felt pretty good since. The only problem we have had is that his gums are red and swollen and bleed and he has a sore on his tongue (and his breath is bad). We have been trying to brush his teeth with a sponge several times a day (a toothbrush makes them bleed) and make sure he gets his Nystatin 4 times a day. This problem started before we went back for chemo and his platelets and blood counts were good. We will check his blood counts again on Monday. May 31, 2002 The preliminary result of yesterday's CT was No Change. His blood pressure was fine yesterday and his weight is up to about 34 1/2 lbs which was good. I think his walking is improving and he doesn't complain of pain as much. The Dr. plans on giving him Actinomycin (chemo) as soon as his blood counts recover and then repeating it in 3 weeks and then doing the next CT scan in 6 weeks after he has had 2 doses. Tyler received this chemo once back in March of last year when he was still being treated as Wilms tumor. We don't expect it to be hard on him, but with the reaction he had last round, you never know. The Dr. also mentioned the possibility that the tumors that we see on the CT with no change could be scar tissue. This is when the cancer cells die but it calcifies and the dead tissue just stays there. The only way to tell would be to surgically remove them and look at them. (If I understand it correctly.) It is unlikely that that is all that is going on, but maybe the chemo is working some, we just can't see the results. His blood counts today (Friday) were Hg 8.4, platelets 195, WBC 1.2 and ANC 708. So we were surprised his ANC made quite a jump from 144 on Tuesday and we will probably do his outpatient chemo Monday or early next week. May 29, 2002 Tyler started walking again last Friday, which has been great. He is still not running and he says his feet still hurt a little but he seems to be improving. He has been in a pretty good mood these past few days other than he complained of a headache a couple of times and yesterday his blood pressure was kind of high so we will be watching that. His blood counts yesterday (Tuesday) were Hg 8.4, platelets 174, WBC 0.6 and ANC 144. His Hg and platelets were great but we were a little disappointed that his ANC is still so low. We need it to be at least 750 before we do chemo again. So we will head up tonight for his CT scan tomorrow (Thursday) and then come back home to wait for the results. May 23, 2002 Tyler has felt pretty good this past week other than he still won't walk because he says it hurts. On Monday, his platelets were down to 8 and we went in for a transfusion. His ANC (infection fighting ability) was down to zero which we were not really expecting and that is why we were not doing the GCSF shots. His blood counts today, Thursday, showed an ANC of 90 still very low, but at least it is on the way back up. His platelets were 57 and Hg 8.1, so they were good. He did throw up a couple of times today, not sure why, he seemed to feel good otherwise. Our next blood draw will be Tuesday and we go Thursday for a CT. May 18, 2001 We went back to Chicago on Monday to receive the 2nd dose of gemcitibine. Tyler had a few more fevers on Friday and Saturday from the first round but the highest was 102.5. Tyler slept the whole drive home from Chicago on Monday (3 1/2 hours) and when we got home and checked his temperature, it was 105.3!! We were very shocked as he did not feel that warm. We went into the Emergency Room after giving him Tylenol and stripped his clothes off on the way. The fevers he had starting immediately after his chemo on Friday the Dr. said was a side effect of the chemo, but with a fever this high they did not know what to think. By the time we got to the ER, his fever was down around 102. They took blood cultures, did a chest x-ray and head CT (which was negative) and then admitted him. That night his 102 fever climbed up to over 103 even with Tylenol so we had to try cool washclothes over his body till his next dose of Tylenol was due, we also gave him a dose of Motrin. He continued to have fevers around 101 for the next few days, his last one on Wednesday afternoon. During these days he was pretty nonresponsive, we had to make him mad to get him to respond to us, and he slept alot. Finally on Thursday, he started being awake most of the day and started smiling and playing again. We were released from the hospital on Friday and he is eating and drinking well and back to himself other than he has pain when he tries to stand or walk. He can't tell us where it hurts but can crawl or walk on his knees to get around. Also, on Wednesday night, I had to be wheeled down to the ER because I was having contractions, I am 19 weeks pregnant. The contractions stopped by the time I got there, but a follow up visit to my Dr. the next day and an ultrasound of the cervix showed funneling, so it looks like it's going to be a difficult pregnancy. Tyler was born 7 weeks early so we were afraid this might happen. May 10, 2002 The Dr. looked at Tyler's CT scan and said it did not look like the tumors shrank any and probably grew a little more. The radiologist has not reviewed them yet. So he decided to try 2 new drugs that Tyler has never had before. He received 30 mg/m2 of Navelbine (vinorelbine) and 1000mg/m2 of gemcitabine (Gemzar) and he will receive a 2nd dose of gemcitabine on Monday (day 4). This was done outpatient and we came home last night. Within an hour of finishing the chemo, Tyler had a fever of 101.1. We called the Dr. and he said that was OK, it was a side effect of the drug and we could give him Tylenol and not worry about it since his counts are good right now. His fever came down and then went back to over 100 during the night but then came down this morning on its own without any more Tylenol. He is feeling fine so far this morning. They don't expect too many side effects with these drugs and we are not going to give him the GCSF shots to stimulate WBC this time. The Dr. said these drugs have been used in adults for some time, but that giving them in this combination is newer and not been done with children much. He gave this same combination to a patient with recurrent, resistant, solid tumor (rhabdomyosarcoma) just a few weeks ago and they saw a dramatic decrease in the size of the tumor in just 2 weeks. We are hoping for similar resutls! May 7, 2002 We finally got the final results of Tyler's last CT scan. It read "interval progression in both lungs" which means they determined it had grown since the CT scan 3 weeks before. There were no measurements of how much but we still assume it was not too much since on the preliminary report they were not sure that it had grown at all. The nurse was a little shocked to see it said both lungs since the previous CT's made no mention of the right lung. However, when we reviewed the previous CT scan with the Dr. there was a spot circled on the right lung, he said they were not sure if that was a tumor or not and it was not mentioned in the report. So apparently, they have now determined that it is another tumor. Tyler has continued to feel good these past 2 weeks. As we expected his WBC count did not go to low, the lowest it got was 1.8 (on GCSF shots). The lowest his platelets got was 19 before they started back up on their own. We did take Tyler for a blood transfusion last Wednesday. His counts have recovered and he is ready for chemo again. We go Thursday morning for his CT scan. Please pray for good results. Tracy Wilson April 22, 2002 We went to Chicago Friday for Tyler's outpatient chemo. He received adriamycin with zinecard (the cardio protectant). We then stayed up through Saturday and visited Tyler's cousins which he really enjoyed. We still have not heard the final results of his CT scan last week. Tyler continues to feel good and we are thinking that this chemo may not drop his counts too bad. We are scheduled for the next CT scan on May 9, please pray that this one shows the results we have been hoping for. April 17, 2002 The preliminary results from Tyler's CT Tuesday is unchanged or slightly bigger. We may not get the results from the final report till tomorrow. Since there is the possibility that the tumors are slightly bigger, the Dr. decided to switch Tyler's chemo to Adriamycin (doxorubicin). This is the drug that can cause heart damage and he received a little over half of what they consider the safe lifetime allowable dose with his treatment last year. It is known for being pretty successful with solid tumors so please pray that it works really well to shrink these tumors. We ended up coming home immediately after the CT since we didn't know how long it might take for a decision to be made on his chemo. The chemo will only take about an hour in the outpatient clinic to administer. We are not sure yet if we are going back on Thursday or Friday yet, this is Paul's busiest time of the year at work and we may have to go back up without him. April 15, 2002 Tyler continues to do great! His platelets had started back up last Friday and today they are 111 so he is ready for chemo again. We are going to drive to Chicago tonight for his 9:30 CT tomorrow. We will then wait for the results of the scan so they can decide what chemo to give him next. We are expecting it to be just a 1 night chemo so we will be coming back home on Wednesday. I forgot to mention that when we went to clinic last week, Tyler weighed 33 1/2 lbs so he has gained a couple pounds back from what he lost after the biopsy and first round of chemo when he was so sick. April 9, 2002 We went to the clinic in Chicago yesterday and the port worked just fine. His Hg was 8.8, platelets 13 and WBC 26.5! His WBC count is on the way back up and the lowest it ever got was 4, that is a first! We also can stop the GCSF shots in the thigh now which is really great, his legs were getting lots of sores on them. Apparently, the EMLA cream we put on the skin to numb it was reacting with the adhesive left over from previous band-aids and it was getting all red and sore. Tyler's platelets are pretty low at 13 but we normally don't transfuse till 10 and it hadn't dropped too much from the 17 he had on Friday so we figure it is pretty stable and will hopefully start going up on its own any day now. He continues to feel great and is full of energy. We are scheduled for a CT next Tuesday and as long as his platelet count has recovered by then he will probably be admitted for chemo the same day. For now we enjoy this next week and pray for good results on the CT Tuesday. April 6, 2002 Tyler has continued to feel great this past week. The Friday before Easter we checked his counts and they were still good so we made it to a few Easter Egg hunts, church and some family gatherings. Tyler's blood counts Monday were still good, WBC 8.7, ANC 8170, Hg 9.7 and platelets 67. Thursday when they came to draw his blood we could not get his port to work so we decided to wait and try again on Friday. Friday we still could not get it to work (not even flush) so we had to take the blood sample from Tyler's hand which he did not like too much. His counts were surprisingly still very good, WBC 4.14, ANC 3280, Hg 9 and platelets 17. They are still dropping, but normally the WBC's are about 0 by now. With his Hg so high at 9, I don't expect we will need any red blood cell transfusions next week, we transfuse platelets under 10 so we may need to do that on Monday if they don't start on their way back up by then. Because of the difficulties with his port, we are planning on going to Chicago on Monday to see if they can get his port working and if not, see what needs to be done about it. March 28, 2002 Tyler had his chemo Monday in the outpatient clinic (carboplatin, VP-16 and vincristine) and he got a blood transfusion before we left. Tyler's weight was only 31 3/4, I had hoped he had gained a little more back as he is eating better now. He has continued to feel great (no getting sick!) this week and is full of energy. Tyler's Dr. was not in on Monday, so we did not get to see the CT scans. We did however, get the written reports and went over them with Tyler's nurse. We are scheduled to be back in Chicago on April 16th for another CT scan and hope to meet with the Dr.'s then. We will check Tyler's blood counts on Friday and again on Monday. And although his counts may be dropping already, we hope to make it to some Easter Egg hunts on Saturday and Easter festivities on Sunday. We are hoping for a much smoother round of chemo this time with no fevers and hospital stays but lots of shrinkage on those tumors! Tracy Wilson March 22, 2002 Tyler's blood counts yesterday were WBC 13, ANC 7000, platelets 85 and Hg 7.2. So even though his platelets aren't quite the 100 they like, he is ready for the next round of chemo. We were planning on going tonight (Friday) but they called to say the hospital is full and we would have to wait till tomorrow. Since this chemo can be done oupatient we decided to wait and we will go to the clinic Monday. Hopefully, this will also give us a chance to talk to Tyler's Dr. more and see his CT scans. Tyler continues to feel good and had fun coloring Easter eggs yesterday. Check out Tyler's picure page, I added a couple of pictures we had taken the first part of February. And if you didn't see his pictures from his Disney trip yet, click on the captions. March 19, 2002 Tyler's blood counts Monday were WBC 12, platelets 60 and Hg 7.1. Because his WBC was over 10, we were able to stop the shots. We will check them again on Thursday and if they are good enough for chemo we plan to head to Chicago Friday for a one night chemo. The Dr. wants to continue with the 1 drug approach so that we can see what the tumors respond to. We plan to do carboplatin and vincristine and possibly VP-16 with it. The vincristine and VP-16 would be to enhance the performance of the carboplatin. These are all drugs he has had before. Tyler has continued to feel good this week. This Thursday will be the 1 year anniversary of his diagnosis. March 15, 2002 The preliminary result of Tyler's chest CT yesterday was "no change". Not the result we were hoping for of course but at least the tumors do not appear to have grown either. The Dr. will be working on a new plan of treatment and get back with us next week. Tyler is finally feeling really good, his last fever was a few days ago and his blood counts are on their way back up. Yesterdays counts were WBC 0.4, ANC 288, platelets 40 and Hg 7.2. Tyler only weighed 31.5 lbs yesterday, down quite a bit from 34 or 35 lbs just 3 1/2 weeks ago but the Dr. is not concerned about this yet. On our way to Chicago Wednesday night, our van broke down. Luckily, we were near Paul's Aunt and Uncle's house, they came to help us and loaned us their car to go on to the hospital. We thought it would be fixed the next day and only about $200, but it was worse than they originally thought and now they won't be able to get the parts till Monday and we are expecting it to be about $1000. March 13, 2002 Tyler's blood counts Monday were WBC 0.14, Hg 8, Platelets 4. So we went in for platelets that night and back home. Although his ANC is still zero, we are encouraged by the slightly higher WBC number and hope that it is on the way back up. Tyler has had some low grade fevers still, but they are getting better. All his stool tests came back negative so we stopped giving him the flagyl and we got his other antibiotic changed to one he could tolerate better. Tonight we are heading up to Chicago for tomorrows chest CT scan. So please pray that we see good results that the chemo is working to shrink the tumors. Tracy Wilson March 10, 2002 We finally made it home Saturday! Tyler continues to run a fever, 99 - 100 mostly, but all his blood cultures have been negative and they decided it was better to get us home than risk picking up something new in the hospital. Tyler continues to have an ANC of zero. His WBC count has been bouncing around from 0.02 - 0.05 the entire week. He has had an ANC of zero for at least 10 days (the first day we checked blood counts, a week after chemo, he was already at zero) this is the longest this has ever lasted for him. He has not needed any more transfusions since Wednesday but his Hg was 8.3 and Platelets 17 on Saturday, we will recheck his blood Monday morning and I would not be surprised if we were back in the hospital for transfusions. We just hope he starts to show a climb in WBC. Tyler's diarrhea started again on Thursday with bloody mucous, they are retesting it for infection but the Dr. went ahead and started him on flagyl, an antibiotic for c-diff and we will stop it if it turns out he does not have c-diff. They also sent him home on another antibiotic clindamycin, he has to take 2 tsp 3xday and it must taste awful. Tyler is still not eating very well and he has definitely lost a few pounds these past 3 weeks. He was walking very poorly yesterday, we don't know if it is from the vincristine (causing numbness) or just because he spent a week in bed. Tyler lost most of his hair this week, it went very fast this time. Tyler continues to have a cough and runny nose as he has had all week. We did receive another dose of vincristine (chemo) yesterday when we got home from the hospital, it was a few days late, but they are not chemo certified at this hospital so we could not do it there. March 07, 20002 By Thursday (2/28), Tyler's ANC was zero already and on Saturday he got a fever of 101 so we have been in the hospital (Covenant, in Champaign) on antibiotics since then. His incision from the lung biopsy had a staph infection but so far all the blood cultures have been negative. His fever has never gone over 101.5 but it jumps between 98 and 101 all the time. Tyler needed platelets on Sunday, blood on Monday and platelets again on Wednesday. Monday and Tuesday he was having diarrhea but that seems to have cleared up. He has started eating a little better the past 2 days and appears to feel good most of the day. His ANC continues at zero, we are hoping it will start climbing any day now. Tracy Wilson February 27, 2002 First of all, let me tell you that all of Tyler's other scans (brain, bone, abdominal) came back clear. We did the abdominal CT and bonescan without sedation and he did great, luckily he slept through the bonescan with a little help from Benadryl. They started his chemo on Thursday night. Vincristine and Cytoxan on Thursday and then Cytoxan again on Friday night. His dose of Cytoxan was 2.4 gms/m2 each night compared to 2.1 gms/m2 just 1 time that he received with his previous chemo. He had a few times at the hospital where he didn't feel to good but never got sick although he was not eating and not drinking very much. We came home Saturday afternoon and Sunday everything he ate or drank came back up but by Monday he was feeling better. Thursday the nurse comes to our house to give Tyler another dose of Vincristine and check his blood counts. We will go to Provena, the local hospital as needed for transfusions and fever. We will go back to Chicago on March 14 for a CT of the chest to see how well the chemo worked. They will decide then what to do next so please pray that the cytoxan is shrinking them everyday. February 20, 2002 On Monday morning, immediately after the lung biopsy, the surgeon told us what he removed was recurrent disease. Tyler had a chest tube for a day and a half and since he got that taken out last night he has been feeling pretty good. The Dr. met with us this afternoon (Wednesday) to tell us the results from pathology. The tumor looks like rhabdoid (as we expected). Over the next 2 days they will do a CT of the abdomen, brain MRI and bone scan. Then probably on Friday we will begin chemo. The plan is to give Tyler vincristine and high dose cytoxan (both drugs he has had before) and then scan again in 3 weeks to see what effect it has had on the tumors. We hope to be able to go home on Sunday. February 15, 2002 Yesterday we received the news that they found several spots on the left lung on Tyler's CT scan. We go to the hospital (University of Chicago) Monday for surgery. They will use a scope and a small incision and remove one for a biopsy. We are still hoping for some sort of infection and not a relapse. Please keep Tyler and our whole family in your thoughts and prayers. February 11, 2002 Tyler's appointment for the chest CT is set for this Wednesday at 2pm. Tyler has had a cold and ran a fever this weekend so I hope he is over that in time since they need to sedate him for this test. February 6, 2002 Today we received the results of Tyler's tests. His ultrasound of the abdomen looked fine. On his chest x-ray they saw 2 very small questionable spots so they want us to come back for a CAT scan of the chest to get a better picture. It is possible these are what they call "artifacts", a blur possibly caused by Tyler moving during the x-ray. We hope that the CAT scan will reveal nothing or something that can be determined to not be of concern. They have not called me back with a date for the scan yet. Please keep Tyler in your thoughts and prayers that this will turn out to be nothing. February 1, 2002 Tyler had a wonderful time at Disney World (& the other parks)! He loved the rollercoasters! And of course meeting Mickey Mouse! Give Kids the World was a wonderful, magical place to stay. We go back to Chicago Monday for Tyler's 3 month off treatment scans. They are going to do an abdominal ultrasound and chest x-ray. I don't know if we will get the results the same day or not. Please keep him in your thoughts and prayers and I will let you know the results as soon as we know. January 6, 2002 Happy New Year everyone! Although we managed to avoid the ER at Christmas, no such luck on New Years Day. Tyler had been having episodes of abdominal pain (with no bm in 2 days but passing lots of gas) and they wanted him checked out. So, off to the Emergency Room for about 5 hours. They did x-ray's of the abdomen which showed a lot of gas in the stomach and a lot of stool backed up. So we began giving him simethicone for the gas and prune juice and within a few days he appeared back to normal. His foot also is fine, still bruised but the swelling has gone down and he is running on it. In just 3 weeks we leave for Disney World with Make A Wish! Tyler is so excited! December 30, 2001 Tyler had a wonderful Christmas, broken foot and all! Yes, on Christmas Eve Tyler was running through my Aunt's house and kicked a coffee table leg. We were afraid he might have broken something because he would not put any weight on it, but after talking to a couple of nurses we decided not to spend our Christmas Eve or Christmas Day in the Emergency Room and wait till the day after to take him in. By Christmas night he was walking on it some and the next morning we had it x-rayed. He had 2 broken bones (the 2 leading to his outer toes), is was obvious because they were slightly out of alignment. All they did for him was to give him a special shoe to strap on and he is back to running around already. All in all, we were very happy to deal with a "normal" kid problem! December 21, 2001 Tyler is continuing to do great. Tyler's walking has improved and he is even jumping up and down on both feet now so the nerve damage from the Vincristine (chemo) must be wearing off. His hair is coming in nicely. Check out the picture page and his new picture with Santa, you can even see his hair line! His Birthday and Halloween pictures are still on the picture page, just click on the caption to see the picture. Tyler is really enjoying the Christmas season. He is so into all the Christmas lights, music and movies. Last week he realized we did not have a chimney and was a little concerned how Santa was going to leave him presents! I assured him we would leave the door unlocked that night. Tyler had his hearing test a few weeks ago and it was normal. Our next scans at 3 months off treatment will be the first week of February, they plan to do just a chest x-ray and abdominal ultrasound, the next CT scan would not be until 6 months off treatment. Please continue to pray for his good health. Happy Holidays to everyone! November 14, 2001 Tyler went to his pediatrician today for his 3 year well check and a flu shot. He is around 34 lbs and 36 -37 inches tall. (He was not very cooperative today for that.) He has definitely put on a pound or two in the past 2 months since his last treatment. He weighed 32 lbs last year at 2, but was down to about 29 lbs after the surgery in March. His hair is growing back, you can't really see it on his head yet, but his eyelashes look great, they are thick, although not to their full length yet. Tyler has recently started in a new home daycare and I have gotten back to work on a more regular basis. Tyler enjoys having playmates and is adjusting to the new routine very well. Check out Tyler's new pictures from Halloween and his Birthday Party. November 11, 2001 Happy 3rd Birthday Tyler! Today was a very special day. Tyler had a big party with a Thomas the Train box to play in, a Thomas cake, a special visit from Blue from Blue's Clues, a ride on a fire truck and lots of family and friends to celebrate with. We love you Tyler and are very proud of you! You are an amazing boy! November 9, 2001 Tyler had a great time trick or treating! I will try to get some pictures posted soon of our little dragon. Our appointment in Chicago last Friday went fine. We did the chest x-ray's, Tyler was very good about it this time, he was not upset about it but just a little wiggly so it took several tries. The results came back normal. Tyler's oncologist was off this week, so we will be hearing from him next week as to what the plan is now. We also met with a genetic doctor because of some questions we had, no answers yet, but we will keep working on that. This past week has been a rough one emotionally for me, I lost an uncle to cancer, my cousin's wife was recently diagnosed and several of the children on the Rhabdoid Kids page are not doing so well. Please say an extra prayer for all of them. October 30, 2001 We went last Friday to Chicago for Tyler's off treatment echocardiogram and CT scan. We went to the clinic first because they had to put an iv in his hand (they don't like to use the port with the contrast dye for the CT scan). We had put EMLA cream on the tops of his hands to numb it and he didn't even flinch when they put it in. Of course we kept him distracted so he wouldn't watch. They took blood and urine samles which all came back fine. He did have a trace of blood in his urine but they said that is expected. His Hg had jumped to 10.4, platlets 241 and his ANC 1200, yea! We did the echo first and then we were suppose to report for the CT at 10am. The anesthia team was delayed so we didn't get started till 1 pm which is a long time for an almost 3 year old to go without food or drink! We came home Friday night and it seemed his throat might be a little sore from the tube they put down. Saturday afternoon while he was running around playing he really started making some loud noises while he breathed so we ended up taking him in to the ER to be checked. He was sleeping when we got there and they could not hear any wheezing, they did a chest x-ray, it looked normal and we went home. The ehcocardiogram came back normal and Monday evening we got the results of the CT, which were also normal! Except, they could not see 1 lung because when they put the tube down, it did not go down the center but entered 1 lung which explains the problems he was having breathing. They will do a 5 view chest x-ray this Friday to cover that. October 22, 2001 Tyler has been having a great time the past few weeks, still feeling good. He has had his blood checked 3 more times since I last updated and his Hg has gone up each time, at 9.4 on Thursday. His platelets are up to about 200. His ANC has been bouncing around the 700 - 800 mark, not the 1000 we would like, but they said it could stay this way for a while. They say he will continue to be immune compromised for about 6 months. During this time if he gets a cold, he will take longer to get over it, etc. Exposure to chicken pox is still a big concern during this 6 months also. Did you see? NEW PICTURES ON PICTURE PAGE! The first picture was taken at the beginning of September and you can see he has lost most of his hair, the little he had left then is gone now. Funny how he slowly lost it all the way thru treatment and now it looks like it is starting to grow back. There is a picture from when Tyler went to see Thomas the Train. There is also a picture with Uncle Doug who lives in New York City. We went to Chicago this weekend to see Uncle Doug "making movies", where he was taping an episode of "Trading Spaces" a decorating show on TLC. Tyler goes Friday for his off treatment CAT scans and for an echocardiogram, so please keep him in your prayers for good results. October 10, 2001 Tyler has continued to feel great. When they checked Tyler's blood last Thursday, his WBC was still pretty high (still from the neupogen) at 4. By Monday, his WBC count was down to 1 and ANC down to 700 (we want 1000 or higher). Tyler's platelets have recovered great and are at 125. His Hg is still good at 8.8, although still trending down, they do not expect it will go low enough to need a transfusion before it starts going up on its own. Since his WBC count & ANC is still a little low, they will check his blood again tomorrow (Thursday). After getting the good news on Monday Oct. 1 that his counts were recovering, we were able to get out and enjoy some beautiful weather at the playground! October 1, 2001 Tyler's blood counts were great today! Hg was 9.3 and his platelets were 39, so no transfusions needed. The most amazing thing was his WBC count was up to 17 with an ANC of 15,000! On Thursday, just 4 days ago, his WBC was 0.17 and ANC of 0. This means we can stop giving him the neupogen shots (14 days sooner than last round)! Since we have stopped the neupogen, his WBC count will drop and his ANC (infection fighting ability) could drop below the 1000 threshold but should stay high enough that Tyler can be around people again. They will check his blood on Thursday and Monday to monitor his WBC and make sure his platelets continue to recover, but if they look ok, we are done until we go for our follow up visits later this month. And now that he has recovered from this last round, we can celebrate the end of chemo!! Congratulations Tyler!! September 29, 2001 |