UPDATES PAGE TWO

September 29, 2001 Well, for the first time in a while, Tyler did not spike a temperature while getting his transfusions on Thursday and we got to come home Thursday night! Of course I had packed a bag for a 2 day stay, that did the trick! Tyler amazed everyone with the energy he had while only having a Hg of 5.9. We could not keep him in bed and had to chase him around the room keeping him within reach of his iv pole. He wears me out at home as well and I have to remind myself what an absolute blessing that is! Tyler rode in the combine this afternoon which he loves. September 27, 2001 Tyler is still feeling well. I forgot to mention on my last update that they decided to cancel his doses of vincristine with the last round of chemo. On Monday, day 9 from the start of this round of chemo, his ANC was already down to zero, his platelets 57 and Hg 7.1 so we did not have to have any transfusions. Today, Thursday, his ANC is still zero although his WBC count was up slightly, not enough to be sure that he is on the way back up already, but I am hopeful. His platelets are down to 15 and Hg 5.9 so we are on the way to Covenant (local hospital) to get blood and platelets. Then we hope he does not spike a fever from the transfusions like he has done before. If that happens, we stay at the hospital a minimum of 2 days to check blood cultures. September 18, 2001 Tyler had a blast dancing (and running in circles) at his cousin's wedding Saturday night. He was full of energy and people who did not know him could not believe he was undergoing chemotherapy. We then headed to Chicago Sunday night for his last round of chemotherapy (Number 6 - VADRIAC). We got started earlier than usual and were ready to go home around 3 in the afternoon on Monday after receiving some wonderful gifts from the Child Life Department in celebration of his last chemo treatment. (Thomas the Train stuff, of course.) He continues to feel well and we will check his blood on Monday at which time I expect his counts will have dropped. Then we hope for no fevers or other complications over the next few weeks and hopefully not too many transfusions. September 13, 2001 We pulled Tyler's needle after checking his blood counts Monday morning and then he got a bath! He was happy to not be "hooked up" anymore. His platelets Monday were up to 100 and his WBC 19 so we stopped the neupogen. Today, (Thursday) his platelets are up to 150 and his WBC 1.28 with an ANC of 828 so he is ready for chemo again. His Hg has been climbing the past week and is up to 8.5. He is full of energy while we have been just sickened by watching the events since the attack on the East Coast Tuesday. Since Paul's niece is getting married this weekend we plan to wait until Sunday night to return to the hospital for his last round of chemo. We should be back home Monday night. September 7, 2001 Tyler is feeling great. His platelets were up to 27 yesterday (Thursday) and his WBC count is up to 7.3 but they want it over 10 before we stop giving him the neupogen. Since we already have his port accessed here at home to give him his antibiotics, we can give him his neupogen through the port instead of the shot in the thigh. We will continue the antibiotics and the neupogen through Sunday and then will check his blood counts again on Monday. It looks like the earliest we would start the next round of chemo (last round!) would be late next week. This round was the most difficult we have experienced so far with 3 platelet transfusions, 2 blood transfusions, 8 days with 0 ANC, 9 days in the hospital and a blood infection, and yet we realize how lucky we have been. September 3, 2001 We did get to come home Saturday even though Tyler's blood cultures taken on Wednesday and Thursday both turned positive just after 48 hours. His culture from Friday is still negative. After spending several days mostly in bed, Tyler's walking is looking very awkward again. They still believe this is a side effect from the Vincristine. Tyler came home with his port-a-cath accessed and we hook him up to his iv antibiotics (Vancomycin) 3 times a day. The first couple times went smoothly and then Sunday morning after the antibiotics were finished I was flushing the port with saline when Tyler screamed it hurt. I lifted his shirt to look at the port site and there was a bulge. The home health nurses came and apparently his needle had come out a little so they replaced it. Tyler has been feeling good and his ANC is now up around 900 which is great. August 31, 2001 We are planning to go home Saturday morning. Tyler's blood culture was positive for gram positive cocci and was further determined to be coag negative staph. The first culture taken here in Chicago ended up turning positive but the one taken on Wednesday is still negative after 48 hours. We will be on iv antibiotics for a week at home. Tyler needed platelets again on Thursday. They put TPA in his port which cleared up the problem with it drawing properly. He is feeling fine and been able to play in the playroom today as his ANC is up to 200. August 29, 2001 Tyler enjoyed his day at home Sunday, then Monday after blood draws they called to say he needed platelets and blood again. We headed to Covenant Hospital in the afternoon and started the platelets. Tyler spiked a fever of 101 so they did a blood culture, started him on iv antibiotics and we were admitted. His temp hit 103 later in the evening and then in the morning they told us his blood culture came back positive. Tyler then got to ride in an ambulance to be transferred to Chicago. Tyler has not had a fever since last night and has been feeling well today. The blood culture they took when we got here last night (Tuesday) is still negative so far and they have added a second antibiotic. His ANC (infection fighting ability) has been 0 for about a week but is slowly starting to climb back up. His port is still not drawing properly but we hope we will be able to correct that. We don't know how long we will be here (at least 2 days) and when we go home Tyler will probably be on iv antibiotics for a while. August 26, 2001 As expected, Tyler needed platelets on Thursday so we took him to Covenant and decided to give him blood also since his hemoglobin was borderline and we were already there. Nearing the end of the blood transfusion, Tyler got a fever of 101.4 which meant we needed to do a blood culture and be admitted for 48 hours. Everything was negative, and we came home late Saturday night. Unfortunately, while we were there blood was left sitting in his line too long and it clotted. After a traumatic hour (for Tyler and mom) of replacing port needles and trying to flush the port, they got it flowing again, although slowly. We will have to wait and see if this continues to be a problem and if so what can be done to try and fix it other than surgery to replace the port-a-cath. Tyler has continued to feel good and we are hoping to see a rise in his white blood cell count this week. August 21, 2001 Tyler had his blood counts checked yesterday (Monday) and he is neutropenic already. He has an ANC of 0, platelets 38 and Hg 9.3. We will check them again on Thursday and I expect we will need to get platelets at that time. Hopefully, we can avoid any fevers until then. Tyler has now lost all his eyelashes, most of his eyebrows and more of his hair, he has some completely bald spots on top now. August 19, 2001 Tyler got out of the hospital in time Wednesday to go downtown and take a sightseeing boat ride on the Chicago river and out to the lake. Tyler had never been on a boat before and thought it was pretty neat. He kept calling it a tugboat, as in Theodore Tugboat from the Thomas the Train series. However, about 30 minutes into it, the boat rocked him to sleep. His stay at the hospital was pretty uneventful and he felt good most of the time. He did get sick a few times on Thursday when we got a little lax and didn't continue to give him his zofran (anti-nausea medicine) every 6 hours. Saturday was a very big day, we went to see Thomas the Train at the Illinois Railway Museum in Union, Illinois. Tyler was very excited to see this full size Thomas steam engine (& Mom and Dad thought it was pretty cool too) and he got to ride on one of Thomas's coaches. Thanks to the hospital Child Life staff and the museum who helped us get the tickets! Tracy Wilson August 12, 2001 We are heading to Chicago today (Sunday) for Tyler's 5th round of chemo (ICE). We will be there thru Wednesday. We received the results from Dr. Biegel of the Children's Hospital of Philadelphia who was doing the genetic testing on Tyler's tumor tissue. So far, all the cells they have looked at are negative for the chromosome 22 gene abnormality that has been identified in rhabdoid tumors. This does not mean this is not a rhabdoid, however it does eliminate the possibility that we were passing down a gene abnormality that increases the risk of rhabdoid. August 9, 2001 We went to the clinic Wednesday morning and Tyler was still not ready for chemo. His platelets are over 100 now but his WBC and ANC (590) were not high enough, they want his ANC to be at least 750. Tyler's Hg (hemoglobin) was down to 6.1 so we went ahead and got blood before coming home since he had been showing some signs of increased tiredness. We will check his counts again on Friday and hope we can start chemo on Sunday or Monday. August 7, 2001 Tyler's blood counts were too low to start chemo on Monday. His platelets were up to 78 but his WBC was still a little low at 1.2 so we will check again on Wednesday. We went ahead and came up to Chicago so we could spend a few days doing some fun stuff (our vacation for the summer). Last night we went swimming and today we went to The Childrens Museum at Navy Pier, so Tyler is having fun. August 4, 2001 Tyler has felt good all week. By Monday, his WBC count was up a little and by Thursday it was high enough to stop the GCSF shots. His Hg was 6.7 both days but he appears to have plenty of energy so we won't transfuse at this time. His platelets are once again slow to recover and were at 32 on Thursday. His next round of chemo (#5 - ICE) is due to start on Monday but I expect we might be delayed due to low platelets. July 28, 2001 No sooner did I send in the update on Wednesday, July 25th, Tyler got a fever. About 8 pm I checked his temp and it was 101.5. A temp of 101 while he is neutropenic (low infection fighting ability) means admission to the hospital for a minimum of 48 hours. When we got to Covenant (our local hospital) they did a blood culture and CBC and a urine analysis and culture and started him on iv antibiotics. His temp was down to 100.8 and never did go over 101 while we were there so we got to go home after 48 hours and the blood culture was negative. The urine culture however, was positive so he is on antibiotics for 10 days. His Hg on Thursday was down to 5.2 and his platelets 6 so he did receive blood and platelets. The next day Hg was up to 7.4 and platelets 67. His WBC count has remained around 0.1 so he still has an ANC of 0. The day Tyler got the fever he was running around playing like normal and continued to be in pretty good spirits during the hospital stay although he stayed sitting in his bed all day Thursday, but with a Hg of 5.2 he should have been pretty fatigued. We have been very lucky that this is our first admission for fever and that we were able to go home after 2 days. Tracy Wilson July 25, 2001 Tyler has continued to feel good since his chemo other than one morning of getting sick. His blood counts had dropped really low by Monday just 7 days after chemo and we have noticed some mouth sores. ANC (infection fighting ability) 0, Platelets 47 & Hemoglobin 7.3. No transfusions needed yet, we will check his blood again on Thursday. After skipping his dose of Vincristine last week, we did give him half a dose on Monday. Tyler went to the County Fair last weekend and he loved it and rode lots of rides. His chest x-ray and abdominal ultrasound last week came back clear. Tracy Wilson July 17, 2001 Tyler's platelets were up to 133 yesterday so we headed to Chicago for Round 4 of chemo last night. Tyler is feeling fine and playing with Thomas the Train in the playroom this morning. We will stay at the hospital till about 4 to finish getting his Mesna, which is to help protect his bladder from the chemo. We also will be getting an abdominal ultrasound and chest x-ray today and we are trying to schedule a follow-up visit with radiology. Tyler's funny walk came back a while ago, at first we thought maybe it was due to the shots he was getting daily in the thigh but now we are back to believing it is a side effect from the Vincristine causing numbness in his feet. Due to this they cancelled his dose of Vincristine that he was supppose to get last night. And we will reevaluate next week to see if he gets his scheduled dose then. July 12, 2001 Well, immediately after saying "no delays due to low blood counts yet" we are delayed due to low blood counts. Tyler's WBC count and ANC were fine but his platelets were only 64 today and they want them at least 100 before they start chemo again. So, we will enjoy the weekend here at home and check his counts again Monday. July 8, 2001 Tyler has been doing well the past 2 weeks. He has had a few episodes of unexplained vomiting and low grade fever but it never seemed to slow him down much. Tyler started sounding hoarse last weekend and we were afraid he was getting sores in his throat but it never stopped him from eating or drinking and now it is better. By Monday (July 2) his blood counts were down and on Thursday his WBC count showed signs of rebounding but his platelets were down to 3 (3,000) so we went to our local hospital (Covenant) to receive platelets for the first time. Tyler had a great 4th of July holiday, he got to see fireworks but most importantly he got to play with his 2 cousins (Alec & Daria) who are the same age as Tyler and they had a ball. We are halfway through Tyler's treatment plan having completed 3 out of 6 rounds of chemo. And so far, no delays due to low blood counts!! We are planning to return to Chicago next Friday (7/13) to start Round 4 of chemo which will be the VADRIAC treatment done in one night. Tyler will also have another chest x-ray and abdominal ultrasound at that time. Tyler has been putting up with his daily neupogen shots pretty well this time thanks to a family friend who brought over her grandson's collection of Thomas the Train engines! (Thank you Matthew!) We wrap them up individually and he gets to open one with each shot and when the nurse comes to access his port for blood draws. (When he sees the nurse, he immediately asks for his present!) He will end up with a fairly complete set of the metal/plastic engines since we had previously received several others from my sister and her friends and a friend of my Aunt who gave her several engines along with several of the videos. Thank you all! June 26, 2001 Well it's Tuesday morning and Tyler is watching another new favorite show "Jay Jay the Jet Airplane". At least it is a nice relief from Rolie Polie Olie and Thomas the Train! We arrived to check in at the hospital around 11am Friday then we got a pass out to go spend the afternoon with Tyler's cousins at the Brookfield Zoo. This round (3) of ICE chemo went really well! Tyler never vomited once! Last time he had ICE he was really sick. There were a few times he fussed and did not feel good but we managed to keep it under control. Tyler got to go to the playroom on Saturday and Monday mornings, he spent most of the time playing with the Thomas the Train set and he went outside to ride on the tricycle (while Dad tried to keep up with the IV pole!) Tyler has really gotten used to moving around with an IV pole and was even pushing it down the hall himself! We were released from the hospital about 3pm yesterday after receiving a blood transfusion. Tyler's awkward walk from the Vincristine seems to have disappeared, yea! His fingertips look really dark which they say is from the adriamycin. Tyler still has a thin layer of hair (about the same as his Superman picture) and I think what was left has grown a little longer. He has lost lots of eyelashes but they were really thick so he has some left but some gaps. All in all, we are very happy with how he is doing! Tonight we have to start shots again. June 18, 2001 Tyler had a good weekend. On Friday & Saturday he went to the tractor pulls which he loved. This morning (Monday) the nurse came to access his port to check his blood counts and everything went fine. Then he started having terrible stomach pains. This had gone on for over an hour by the time we got him to the pediatrician. He threw up a few times on the car ride but no bowel movements and no fever. They sent us for an abdominal x-ray to check for a bowel obstruction, not an unusual occurrence after the surgery he had. About that time he started feeling better. The x-ray looked ok and by this time he was smiling and chatting away. Several Dr.'s and nurses stopped in to say Hi as it was Tyler's first trip back to the pediatrician since he was diagnosed in March. They sent us on our way and this evening we collected stool samples to see if the c-diff is back or something else is going on. The past several days we have noticed a definite progression in the awkwardness of Tyler's walking. This is a temporary side effect of Vincristine, one of his chemo drugs which can cause numbness in the hands and feet. He looks like he is trying to walk with shoes that are way too big but it does not seem to bother him much or slow him down. Tyler's blood counts were good, hemoglobin down a little, but still good, platelets up and WBC was way up at 116 (116,000) which was a little alarming to everyone here in Champaign but our nurse in Chicago assured everyone it was due to the GCSF shots which of course we can stop giving now. We will check Tyler's blood counts again on Thursday and if all goes well we will be admitted in Chicago on Friday (6/22) to begin ICE treatment, Tyler's 3rd round of chemo and be there till Monday. Tracy A. Wilson, P.E. June 14, 2001 Tyler has continued to have a great week. When they checked his blood counts last Friday, his white blood cells had dropped significantly and by Monday his ANC (ability to fight infections) was 0. However, no fevers! His blood counts this morning showed the white blood cells on their way back up and even though his hemoglobin and platelets were lower, we do not need any transfusions at this time. We are continuing with the daily shots but hopefully only till Monday. June 6, 2001 Tyler had a great weekend playing with his cousins and has continued to feel good. He has not been sick with this chemo. We started the GCSF shots on Monday and he is sure putting up a good fight over that. Unfortunately, it has been raining the past few days and late this afternoon is the first chance we had to go outside and play. Hopefully, he will have a few more good days before his blood counts go down. The nurse will be here Friday to give him a dose of Vincristine (one of his chemo drugs) and to check his blood counts. If they have not dropped on Friday I definitely expect they will by Monday when they are checked again. Then we pray for no fevers! June 2, 2001 Tyler got out of the hospital this afternoon and is having fun playing with his cousins Amber & Nick here in the Chicago area. So far Tyler has felt really well, the only problem being that Tyler stayed awake till 4am last night while he received his chemo, but at least he was in a good mood! Tyler did receive blood again since his hemoglobin was low. We will be staying in Chicago through tomorrow so Tyler can go see his cousins Alec & Kyle. May 29, 2001 On March 21st, Tyler had an abdominal CT scan after having flu like symptoms and a hard extended belly. When we got back to the pediatrician's office she told us he had a large abdominal mass and she already had called the University of Chicago Hospital and they were expecting us that night. That evening they told us what he had was most likely Wilms tumor which is malignant and they were going to do surgery to remove his right kidney first thing in the morning. Surgery was put off one day and on March 23rd, in a 4 1/2 hour procedure, they removed the kidney & tumor and 1 lymph node. Tyler went through the surgery pretty well but then took a while to recover. It took him 7 days to get his bowels moving again and then on the 8th day he finally smiled for us and started walking again. The pathology report came back Wilms Tumor Stage 3 because it had invaded the renal vein (the 1 lymph node was clear). We then started chemo based on the Wilms Stage 3 protocol which consisted of fairly light doses of Vincristine, Dactinomycin and Doxorubicin. This was done through weekly outpatient clinic visits. Tyler was discharged from the hospital 12 days after surgery. He then had 6 days of radiation to the right flank. Tyler went through 5 weeks of chemo treatments with no side effects, the only times he thru-up were days when he was sedated for radiation. Then on May 1st we got a call that the Wilms Tumor Study Group pathologist had determined that Tyler had Rhabdoid Tumor of the Kidney. Tyler had an MRI of the brain, it was clear. His treatment plan was then changed to consist of 6 cycles of aggressive inpatient chemo. The first treatment "ICE" was done over 3 nights and consisted of ifosfamide, carboplatin and VP-16. The next cycle will be "VADRIAC", over 1 night consisting of Vincristine, Cytoxan and Adriamycin (doxorubicin). Then he will repeat the cycles for a total of 6. Tyler was admitted May 8 -11 for his first ICE treatment, he was pretty sick for about a day and a half, but feeling better when we left the hospital. He received blood before we left. He also had a chest x-ray and abdominal ultrasound that were clear. We started GCSF shots to stimulate WBC's and we continue with Bactrim and Nystatin. About 1 week after chemo he got diarrhea followed by a fever for 5 days (luckily it stayed under 101 so we stayed home). His stool tested positive for C diff so we added another antibiotic. He had at least 1 sore in this mouth and blood in his stool which might indicate more sores in his gut. However, these did not seem to bother him too much. After 12 days of GCSF, his counts were up and we stopped the shots. His appetite has returned and other than one day of throwing up recently he is feeling good and we are scheduled to be admitted for the next round on June 1st.