Nov.06, 1998Michael is still in the hospital, hopefully he will be out by Sunday. He is feeling better and they are taking him off the morphine drip. MORE GOOD NEWS... Michael had an MRI this week and the results came back today...NO SIGNS OF TUMOR. Sunday is Michael's birthday, we will all be getting together to celebrate. I will post pictures as soon as I can. Nov.04, 1998 Michael was home for Halloween and made it around the neighborhood. He was accompanied by his sister Anna and his cousin Alyx. They made quite a haul. By the way Michael went as one the the Teletubbies, what ever that is, I guess it is one of his favorite TV shows. He was very tired by the time they finished and looking pale, the next day he had to go back into the hospital. They are trying to get his blood built back up and they have him on a morphine drip to help keep him comfortable. Thank you. Oct. 28, 1998 Michael finished this session of chemo and is doing well. His blood levels dropped faster this time than they did after the first dose of this series. They put some of his stem cells back and the levels are beginning to rise. He has been vomiting, which was expected. That's about it. Miss Nancy if you have a chance to read this before the cornea transplant, we are praying for you. It's been a hard year, the next year will look a lot better. Oct. 20, 1998 Michael is back home today. They took a Cat Scan while he was in the hospital and every thing still looks fine. He returns to the hospital on Friday to start the next dose of chemo. If things keep going well he will be done with the chemotherapy by the end of December. Then they remove the tubes and we wait and continue to pray. Oct. 15, 1998 Michael was in bad shape yesterday. He started to get sores all over his body again, and his blood levels remained low. I was told that the sores are one of the first signs of an approaching fungus outbreak. Apparently the only cure for fungus is surgery, which would be almost impossible in Michael's condition. Today Michael made one of his fantastic turn arounds. His blood levels shot up and everything else showed signs of improving. I don't understand what keeps these kids going, maybe when things take a turn for the worse there is an increase in prayers. For those who have been following Michael's page you know that Miss Nancy is a special person to Michael and our whole family. Miss Nancy's mother passed away on Oct. 12. If you would like to send her your best wishes her address is Here Oct. 13, 1998Just talked to Michael's mother. Michael started running a temperature of 104 degrees and is back in the hospital. His blood levels are low so they are giving him transfusions and they are trying to locate the infection that is causing the fever. They suspect that it is still coming from the site of the old tummy tube. That's about it, I will get back tomorrow if there is any more news. Oct. 12, 1998 Not much new on Michael. He had to go back to the hospital today for blood tests. He is starting to look a little paler than normal so he may also need a transfusion. His sister Anna is in town for the week. I should include more information about Anna, she has been stuck in the background. I haven't had an update on Emma for a while, I'm sure we will as soon as her parents get the time. If you haven't visited Emma, please do and let her know you care. Oct. 08, 1998 Michael and family just left our house. Michael is doing very well, his blood levels are staying up and he is in good humor. They doctors are baffled, his levels should be very low and he should be feeling lousy. They said for some reason Michael's body is tolerating the new drugs better than expected and they are still working on the cancer cells even though his blood levels are up. If he can keep up the good work he will be able to stay home for two weeks and then he starts the second round in the series. For you football fans, Michael is suppose to have a visit with Robert Smith of the Minnesota Vikings in a couple of weeks when he returns to the hospital. We hope to be able to take a few pictures to post on the page. Emma's Page Please visit Emma's page and sign her guestbook We are working with Emma's family to keep friends and well wishers informed on Emma's progress. We now have a picture and she's a real cutie. We hope to have more pictures soon. For those of you that are not familiar with Emma's story, she has the same type of cancer as Michael and Jonathan. We need lots of prayers for Emma and her family. Thanks to all. Oct. 03, 1998 Just got off the phone with Lisa and she said Michael is doing fine. They started Michael's new set of chemo this morning and the only side effect so far are the runs. Miss Nancy's kindergarten class sent Michael some original artwork. Tony and Lisa are going to try and bring them over tomorrow so I can scan them for the page. Lisa said Michael also received a autographed photo from World Wide Wille also known as, "The Phone Prankster". OK Lee, there's your update. Thank you. For those of you who check out the other cancer kids on the internet, I just received a message from Paul O'Rear, Ashley's father. His last update was in June. He said he is going to be updating Ashley's page soon, and that Ashley is doing very well, he can tell you the rest. Sep 28, 1998 Michael is home and is feeling better. Have an update on Emma, follow the Emma link on the main page. Just received a message from the parents of a little girl named Lisa who was diagnosed with a Rhabdoid tumor of the brain on July 23, 1998. Please pray for Lisa and her parents John and Ronda. If you haven't visited Michael's guestbook please do, this is truly the World Wide Web. Sep 27, 1998 Michael had his shunt installed. I will have to find out how it works. I just pictured a tube that drained into his stomach, apparently there is more to it than that. The doctors told Tony and Lisa that this shunt was a new design and had only been released by the FDA for use a couple of weeks ago. They said the program could be changed from outside the body, so it has to be more than just a tube. Michael is still in the hospital and is receiving transfusions to get his blood levels up. The area around where they removed the tummy tube is improving. He is still having a little trouble keeping food down but it is improving. I haven't heard anything from Emma's parents. We received an e-mail from Jonathan's parents Gregg and Stacey and have written back and forth a couple of times. They are just super people. Jonathan is still amazing the doctors, please keep up the prayers for Jonathan and his family. Sep 24, 1998 Things change so fast it's hard to keep up. I guess I left off with Michael in the emergency room. The doctors checked the scan and felt that Michael had fluid on the brain again and put him back on the Decadron to reduce the swelling and sent him home. Michael was back in the hospital today, he was supposed to start the next round of chemo but his blood levels were too low. They took a complete set of tests, MRI's spinal taps,etc, they all looked ok but they decided that the fluid needed to be taken care of and they are going to put in a shunt tomorrow. The chemo is going to be put off until next week so Michael can have some time to rest and get his blood levels back up.That's where things stand at the moment. Sep 22, 1998 Michael went home but in a matter of hours he was back in the emergency room. His head was tilting and he was vomiting. His head seems to be swollen. They are hoping it is just a fluid build up. It is 8:45 P.M. here and as I type the doctors are doing a scan, I guess they should have gone ahead and put in the shunt on the 21st when they had the chance. If it is fluid they will probably have to install the shunt and the chemo may have to be put off for a while. I am waiting for an update from Michael's parents, if there is any change and it's not too late I will update the page tonight. Sep 21, 1998 Michael had surgery today to remove the tummy tube, and they installed a tummy button that will still allow him to be fed directly into his stomach. He is feeling better and they are going to let him go home until Thursday. Thursday he returns for the start of the next series of chemo treatments. This is the tough one and I believe that he has to remain in the hospital through the entire treatment. The doctors were thinking about installing a shunt in Michael's head while they had him under but since the leakage seems to be under control, they changed their minds. I would like to ask anyone reading this to do me a favor and also pray for Emma and her parents LeeAnn and Gary. Emma is a fourteen month old little girl who also has an "Atypical Teratoid Tumor" of the brain. Emma is being treated at the University of Minnesota. Sep 17, 1998 Since my update last night the doctors retested Michael's kidneys and the results came back OK. That's about the only good news right now. Michael's parents and the doctors have to decide what to do about the tummy tube. The tube is really infected and is causing Michael to run a fever most of the time, not to mention the discomfort. The choices are; (1)Removing the tube and letting it heal up, which will take about 6 to 7 weeks and may allow the cancer to reappear. (2) Just continue and start the next round of chemo and see what happens. (3) A nasal feeding tube was also mentioned. I'm not sure if this was an option, or something that would be needed while the tummy tube healed. The nasal tube doesn't work well with small children, it's too easy to pull out. That's where things stand. If there are any questions please e-mail me and I will try to get answers. I want to thank all the people who are praying for Michael and who have signed his guest book. I am trying to get back to everyone, it's hard to keep track of the guest book and my normal e-mail so if I miss anyone please forgive me. Sep 16, 1998 I don't know where to begin, things have sure took a turn today. First of all, they did a repeat of the hearing test that they took when Michael came into the hospital, it showed that he has lost all the hearing in one ear and half in the other. They have been taking hearing tests during the treatment but apparently there are two kinds of tests. One is just a simple test to get an idea of what is going on, the other is a more complete and expensive test. Next they tested his kidneys, it showed that they were only functioning at 35%. The doctors feel there may have been an error in this test and are going to repeat it either tomorrow or Friday. His tummy feeding tube is still infected and they may have to remove it, I have no idea where that leaves him as far as nourishment goes. They are also going take a look at Michael's lungs, the doctors are concerned with the sound when Michael breathes. Almost all of my information comes from Michael's parents and not the doctors so I try to allow for some selective hearing. Lisa calls almost every night to keep us posted and she is pretty good at keeping track of the facts. Lisa and Tony seem to be at one of their lowest points since starting the treatment. Michael is fighting to make it through this first round of chemo and the next round is a lot worse. The next round is so bad he can not leave the hospital at all. I have to turn in, I will read over what I have written and add some more tomorrow. Sep 14, 1998 Not much change in Michael. He finished the first series of chemotherapy and was supposed to have a couple of weeks to rest up before they started the next series of chemo. His rest was cut short by a fever and low blood levels. He had to go back into the hospital where they gave him a transfusion and put him on antibiotics for the infection. That's where we stand at the present. Sep 1, 1998 Michael just finished a round of CT's, MRI's, spinal taps, hearing tests, and probably some others that I cannot remember at the moment. The results came back great on all tests, no sign of tumor regrowth or spreading to any other parts of his body. Michael starts his next round of chemo on Thursday, hopefully he will be out of the hospital Sunday in time to go to Camp Snoopy to help celebrate his sister Anna's birthday with the rest of the kids. I believe this is the last regular chemo treatment for Michael, the next treatment is a lot worse than the first. I will go into this treatment when I have a better grasp of just what is going to happen. Aug 29, 1998 P.M. Michael is feeling a lot better and is out of the hospital for a few days. His scans and MRI showed no tumor activity, but they did show the ventricles inside his head are swollen and they have put him on medication to reduce this. The medication must be working because he seems more like the old Michael, it's great to see the smiles and occasional laughter. On Monday the 31st Michael has to return to the hospital for a few hours to have a spinal tap and a follow up CT scan. The scan is to see how well the medication is working on Michael's ventricles. If the spinal tap turns out OK we are in good shape and all the prayers are doing there job. I have been told that there is an error in one of my updates. I referred to the cells that they collected to give Michael's bone marrow a jump start as "T" cells instead of "stem cells". I hope the nurses continue to monitor my work and help me keep the facts straight. I would like to keep this page as accurate as possible, maybe it will help someone in the future. Aug 29, 1998 Michael is feeling a little better. He is still in the hospital. His fever was caused partially by an infection under the rubber patch that was placed around his tummy feeding tube. They have been doing a whole series of tests and I will update the page again this weekend as soon as I get an accurate account of the results. Aug 21, 1998 Michael is back in the hospital with a temperature of 104. The sores in his mouth from the chemotherapy have traveled down his throat. The doctors said it was a bacterial infection. They have started giving him morphine again for the pain. This may be the reason Michael hasn't been able to keep anything down taken by mouth. Prior to discovering the throat sores the doctors did a CT scan on Michael to see if the tumor had returned and if that was causing him to vomit, the scan showed nothing. They are still going to do an MRI and a spinal tap sometime this week or the beginning of next week just to confirm the CT scan and to see if anything has spread to other parts of his body. Aug 18, 1998 Hopefully Michael will be home until the 20th of Aug. when he will have to go into the hospital for a blood checkup. Michael has been having a hard time keeping food down.If he eats through the tummy tube he is alright, but if he eats by mouth he throws it back up. They put him back on Decadron to help his upset stomach but it doesn't seem to help. He has been real ornery for the last couple of days, we hope it is just the medicine. Michael is supposed to have an MRI at the beginning of next week, we are anxious to see how things are going. Michael received another package from Miss Nancy,a stuffed bunny and a sea shell...Thank you Miss Nancy!! Michael's sister Anna is spending the week at bible school in northern Minnesota. Aug 15, 1998 This round of chemo didn't go as well as the first one did. I think Michael is getting wore out. He has been vomiting most of the day. His mother said that he has lost three pounds. We are still hoping that he will be able to come home Sunday. The subject of using radiation was brought up again by someone at the hospital, Michael's parents checked with the radiologist, or whatever he would be called, and they were told that radiation was not an option in someone Michael's age. Aug 14, 1998 Michael spent the 11th and 12th at the hospital collecting "T" cells for his next round of chemotherapy which was started on the 13th. He did get to come home for a few hours on Tuesday and Wednesday. He looks better than he has for a long time. He was smiling and laughing, he even took a few steps. His stomach around the feeding tube has improved, the rubber stopper acts as a buffer between the feeding tube and his skin so hopefully there will be no more problems. If all goes well Michael should be able to come home on Sunday for a few days. Aug 9, 1998 Michael is still in the hospital but he is feeling better. He is having trouble with the feeding tube in his tummy, the movement of the tube has worn a new hole next to the hole for the feeding tube. They put powder and something similar to a rubber stopper around the tube. His other grandparents, the Grahams, stayed at the hospital over the weekend with Michael and his parents. The doctors think Michael may be able to come home for one day in the middle of the week, but he has to be back on Thursday to start the next round of chemotherapy. Aug 4, 1998 Michael is still in the hospital. His fever must return to normal and remain there for 48 hrs. before he can go home. On Saturday Michael received a stuffed puppy dog from Miss Nancy, a very special kindergarten teacher who lives in Tennessee. On Monday he received Blackie, a Beanie Baby bear from Nikki and her Beanie Baby Heaven web page. Beanie Baby Heaven sends Beanie Babies and special hugs to sick children around the country. July 30, 1998 Michael went back into the hospital to have his blood checked. His levels were low and he was scheduled to undergo a transfusion on Saturday Aug 1, but Michael was showing signs of infection and the transfusion was moved up to Friday evening, the 31 of July. They discovered Michael has an intestinal infection and they changed the antibiotic Michael had been taking. Michael must stay in the hospital until his levels come up and the infection is under control. Week of July 20, 1998 Michael underwent his first round of chemotherapy. Everything went well. His hair started falling out almost immediately, and his head was shaved. Michael went home on July 27, his four year old sister Anna, who has been staying with relatives came home for a few days also.