08/06/99 Hi everyone! We are all doing really well. Michael is finally going to start his speech therapy starting next Friday. I am very eager to start. Michael tries to talk but he is having a hard time getting it to come out of his mouth. At least he understands everything. I have been contacted by a family in Tennessee that has a 11 month old child who was diagnosed just a few days ago. His name is Dawson Kozimor. His parents names are Scott and Sandra. Dawson's tumor was also in the postier fossa, and had a complete resection. The similarities are unreal. They also have a 4 year old daughter who will be 5 this fall, same as Anna. Scott and Sandra are searching for the answers on what to do. They are scared and their world is turning upside down, and unfortunately I know exactly what they are going through. Please keep their family in your prayers. I firmly believe that because of all the prayer Michael received through all of you, that it is the reason we still have Michael with us today. This past year has been an extremely difficult time for our family. Our faith has been questioned from time to time. There have been so many families that have touched our lives who have children with Rhabdoid Cancer. Some have passed away, and others are still fighting. What I would like for you all to do is pray for all the little children who are fighting, and for the families that have lost their children. Thanks for the continued support, and PLEASE keep on praying for the children. Lisa August 1, 1999 Hi! All is well in the Woodroffe household. It's been a very hot and busy week. Last weekend we had a Graham Family Reunion at my parents home. It was great to see all the relatives. Michael had a great time swimming, and giving everybody lots of hugs and kisses! It was lots of fun, especially since last year we were in the hospital doing chemo. We did a TV interview for channel 9 news on Monday. It aired on Wednesday night. It went really well. Michael was a total ham! He loved the camera guy, and he had the best check up ever! DR Bendel was also in it, and looked absolutely adorable as usual. It was lots of fun, and helped get the word out about Rhabdoid Cancer. The benefit was on Thursday. We had a great turnout! First Ave was really impressed with all the support. DR Bendel, DR Nelson, Dawn, and Liz from Children's Hospital all came. It was great to have them come. Also, lots of friends and family were there too. My sister Stacey rounded up her CO workers and friends to come to the event. Thanks Stacey! Also, my sister in law Barb collected some money from her work and friends. Even Grandma Woodroffe collected some! We would like to thank everyone who attended the concert or who sent us a contribution. The money helps us pay off the medical bills, and that is one less worry! I would like to say a special thank you to Shane Kramer. He is the person who has worked hard putting the benefit together for Michael. He is a very kind hearted gentlemen who has touched our lives in a good positive way. His organization Pop for Charity has helped many people in the past, and has now helped Michael. Thanks Shane! I will update again soon. Please continue to pray for Emma. She is a good little fighter, but needs lots of prayers! Lisa July 20, 1999 Michael's MRI was perfect!!!!! We have been truly blessed with a miracle. I've said this before and I will keep on saying it...Thank you for all your prayers and support. Michael is beating the odds and is going to be an old man. Thanks again, God bless. Lisa July 19, 1999 Hello everyone, Michael is still doing good. He has had a sinus cold the past week or so, but hey, I can live with that anytime! We went to Duck Duck Days, which is a city carnival. Michael had a great time! He went on lots of rides, his favorite was probably the giant slide! He screamed yahoo as he slid down it! It was great! We also saw a fabulous fireworks display. Michael OOH AAHH'd the whole time. Of course seeing him so happy made me shed a few tears. I can't believe that last year at this time we didn't know if Michael would make it another week. Like I've said before...HE IS A MIRACLE! We have gotten everything finalized for his fund raiser. It is July 29th at First Ave 7th Street Entry. It starts at 8:00 p.m. and goes till 1:00 a.m. There are a total of 5 different bands that will be playing, and Robyn Robinson from channel 9 news will be the MC. The person who is putting this on for Michael is Shane Kramer, or Pop for Charities. He is an absolute life saver! We have good insurance, but even with good insurance we still owe a great amount of medical bills. This benefit will help us tremendously! Thanks Shane! I would like to also add that our good friend Miss Nancy from Tennessee had surgery last week on reconstructing her nasal passages. It is a very painful surgery and takes quite a long time to recover. Please keep her in your thoughts and prayers. Michael's next MRI is on Tuesday afternoon. I will update as soon I get the results. Also, Michael has a new friend named Leah. She is a 14 year old girl who writes Michael letters. Her goal in life is to help children live there life to the fullest. She is another blessing from God. Wow we sure are blessed! Thanks for the continued prayers and support! Love you all! Lisa July 07, 1999 This past week has been a good one for Michael. He has been a happy, playful little boy. He is doing the best I have seen him in months. We saw fireworks on the 4th and he really enjoyed them. Although, the firework display wasn't the greatest, for they had some technical difficulties. It has now been one year since Michael's brain surgery. We are very thankful to have Michael still with us in such great health! WE have been blessed with a miracle in our eyes. We are very saddened of the passing on of Jacob Hanood. Rebecca said he went very fast. The morning he died, his grandma brought their puppy to the hospital. Rebecca and Scott feel that Jacob waited to see his puppy once more. The visitation was today and the funeral is tomorrow. Please keep Scott and Rebecca in your prayers. Jacob was their only child, and I am sure they miss him dearly. I would like to say thank you to David. He has put in so much time into Michael's web page the past year. David's health hasn't been the greatest lately, yet he still finds the time and strength to work on Michael's page. Thanks David, we love you! Lisa June 24, 1999 Sorry it took me so long to write an update. Michael went to the doctor last Friday. We did a scan that afternoon. It didn't show anything too clear, except that we have noticed his skull has shifted. The skull shifting is a totally normal procedure after brain surgery. It can take up to several years until it settles in one place. We are going to do another MRI on July 20th. Michael has been doing well the past few days. We took him to get his first haircut since last year. It took two times trying to get him to cooperate, but hey, he did it! We've been enjoying having Tony's brothers and sister in law move back to Minnesota. We have missed them, and now Tony has someone to talk to when times are tough. Family is important, and support is what we need. I would also like to update you on Amy Schiller. Amy's tumor did indeed grow back within a months time. Rob and Lisa still went ahead with the radiosurgery procedure. They did put in a shunt, and she is doing much better now. They went to the doctor today, and had the stitches taken out. They said she can go back to normal activity. They said they are planning on taking her swimming this weekend. She loves to swim! Please keep her in your prayers. The next few weeks are the big test. Please let the radiosurgery work. We are praying for you Amy! Also, Jacob Hanood was put on Jonathan's page. Please visit his site. Take care, and thanks for the support. Lisa June 14, 1999 I'm sorry it's been so long since an update. We have been enjoying being a family. We went to Craguns Resort last week for a family vacation. We enjoyed it thoroughly. We went to Paul Bunyon Land. Anna and Michael had the time of their lives. We took advantage of the helicopter rides that they have. Michael acted so serious during the ride. When we landed, he let out a big hurrah! Otherwise it was relaxing at the resort, boating, and just enjoying our time together. Michael is doing O.K. as far as his health. I am a bit worried about his balance. He is falling quite a bit again, and he is cocking his head to the left at times. I don't know if this is from the radiation or not. We made an appointment with DR Bendel for this next week. If it is from the radiation, it makes me wonder how bad his long term side effects will be. I wish we had some answers, but unfortunately, nobody really knows yet. Thank you as always for the continued support and prayers. Please keep Emma in your hearts. Amy, our friend who's tumor has come back, she is going to Boston to do a different type of radiation this week. Let us all pray that this works for her. We love you Amy! Keep on fighting! Then there is little baby Jacob. I haven't talked to his mother since last week before vacation. He was then still holding on. They were going to try DR Berzynski's treatment on him, but they decided it was best not to. We are still praying for a miracle for him. Take care, and I will update again after Michael's clinic appointment. Lisa May 28, 1999 Hi, I thought I would let you all know that Michael's spinal fluid was clear! Absolutely no cells at all. We have a lot to be thankful for. I received an email from Amy's parents saying that the surgery went well and that they were able to remove it all again. Remember to keep her in your prayers. Also, Jacob is hanging on. He is in a lot of pain due to the tumor growing so rapidly in his brain stem. Please pray for him to be peaceful, and pain free in his final days. This is a short one, I will update again next week. Have a great holiday weekend! Lisa May 24, 1999 Some more good news today. Michael's MRI was great! We won't know the results of the spinal tap until tomorrow or Wednesday. I am relieved once again and will be able to sleep well tonight. I would like to say a special thanks to Rev. Brian Brooks for his special prayer he gave Michael before the tests. Brian is the chaplain at Children's Hospital, and is from my home town of Fergus Falls. He has been absolutely wonderful to our family. He has many time kept me from going absolutely crazy during this past year. Michael is enjoying life to the fullest. He is wrestling with Tony, playing with Anna, and giving me lots of hugs and kisses. He is truly a miracle from God. We are enjoying Michael to the fullest. Anna has her playmate back! I have received some news about two other Rhabdoid Children. First Jacob Hanood, the 6 month old baby that I asked you to pray for. Rebecca, his mother, called me last Monday and they had brought Jacob into the hospital. Jacob's tumor is growing too fast and it is affecting his breathing. They told her that it would be only a matter of days until Jacob passes on. Please keep the Hanoods in your prayers, for they have become very special to me. Second, Amy Schiller, the little girl that is a few weeks ahead of Michael in all of this. She had the same protocol as Michael and also had radiation to the tumor bed. Her parents Rob and Lisa were told that Amy's tumor is back. They went to surgery today to remove it again. They are thinking of going to Boston to do a different type of radiation. Please keep her in your prayers also. This is her second chance at beating this terrible disease. Keep on fighting Amy, we love you! As always, thanks for all the prayers and support you have given. Thanks also to Miss Nancy for the help in buying the kids their summer clothes. She has been a wonderful friend to us. Take care, Lisa May 11, 1999 Mother's Day for me started with a phone call from the doctor. DR Oleary called and said that Michael's cultures that were drawn on Friday were positive. He had another blood infection! So, off we went to the hospital to start IV antibiotics. We decided to take out his central line and GT tube early. We went into surgery today and removed both, and put in a pic line. The reason for the pic line is so that we can give him IV antibiotics at home for a week. Michael's wasn't too happy to have an IV in his arm, but at least this way we are able to come home. We are still going to do the MRI and spinal tap on the 24th. I am thinking very positive about it. We are just enjoying every day with Michael. He is becoming such an independent child. It's fun to watch him grow up. It's sad how a tragedy makes you think differently. Meanwhile, my mother is doing well. She is at home with a monitor. She hasn't had any more spells yet, and that is a good sign. We are all praying that Emma's MRI comes out with wonderful results tomorrow. We are also saddened that this terrible disease has won over Lisa Fults. May her family feel comfort that she is finally in peace. Thanks for the prayers and concern from you all. Lisa May 07, 1999 Michael's MRI is scheduled for May 24th. We will also do a spinal tap and see what the spinal fluid is doing at this time also. We were planning to take out his central line and GT tube also at the same time while he is under, but Michael's central line is infected again. He is on more antibiotics and if it isn't better by Monday, we will remove the line next week instead. Michael has been up and down the past week. He still vomits at least once a day, but it doesn't seem to bother him too much. I guess that's the good thing about being 2. We went to the Minnesota Zoo last Sunday. Michael's favorite was the billy goats. He loved to feed them. It was a great family day for us. Michael's physical therapy is going great also. We are going to evaluate him in two weeks and will probably stop it at that time. It's amazing to see how far he has come in just a few months. (Remember, he had to learn how to walk all over again.) Also, on Wednesday afternoon, my mother collapsed at work. She sprained her ankle during this time, but that isn't what they are worried about. She has fallen several times in the past few weeks, so they did some tests. Her blood pressure was extremely high, and her pulse was also high, and her heart is beating irregular. So she was admitted to Fergus Falls Hospital for observation. They did a variety of tests, and they are find that something is going on with her heart. So, now more tests and hopefully, we'll get an answer soon what is going on. Please keep her in your prayers. I love you mom! I have a more urgent prayer request. My friend Rebecca Hanood, who I met through Michael's page, her son has Rhabdoid cancer also. He is about 4 months old now. Jacob is his name. He has 2 tumors in his brain. One on his brain stem, which is quite large, and another small one in the middle of his brain. Jacob had been going through chemotherapy the past few weeks, and his tumor is still growing. Rebecca and her husband sat down with their doctors and decided to let Jacob go. They are going to continue to do chemotherapy, so they can have as much time as possible with him, but they are going to make him as comfortable as possible now. It was probably the hardest decision they ever had to make, but they thought of Jacob when they made this decision. Please pray for their comfort. I want to say a special thank you to Steph and Steve Baker. They sent Michael and Anna some stuffed animals, and lovely card of encouragement to Tony and I. Steph is from the same area as where I grew up. Thanks again I will update again soon. The on going prayers are greatly appreciated. Lisa April 27, 1999 Last night Michael was really sick again. He had a fever, vomiting and extreme diarrhea. We went straight to the clinic this morning after a long night. We did more blood cultures and are going to start him on a new antibiotic. Hopefully this will help him. I received a phone call today from Jackie Beigel. She is the doctor we gave Michael's tumor to. She has been doing lots of research on the Rhabdoid tumors. All the past research had shown that children with this kind of cancer had an abnormal chromosome 22. Well, Michael did not have this in his tumor. His chromosome 22 was normal. What does this mean? Yes, he still has Rhabdoid cancer, but they don't know why him. It could be a total fluke. We are now going to give her permission to do a complete DNA test on Michael. Maybe this is hereditary? Maybe he was born with this in his body? Lots of questions and no answers. I did give her permission to do whatever kind of research she wants to with our family. We need to know what is causing this terrible monster in our children. Also please note that St. Paul children's wants people with children who have this disease to register with them. It will help those children in the future. I must also add just quickly... Happy Anniversary Tony! I love you! April 26, 1999 Today we went to clinic for a follow up check up. His counts looked much better. Michael has still been irritable and has been running a low fever. They took more blood cultures and hopefully we'll get the results back tomorrow on those. In the meantime we have been enjoying the beautiful weather we are receiving. Michael loves the outdoors. The benefit concert is now changed to July 29th. They had a hard time with scheduling the bands for the same night. I will let you all know the exact details when it is all finalized. Speaking of fundraisers, Please keep Emma in mind. We are all hoping for the best with her treatment. By the way, thanks Grandma Clayton for the card and money. It will be used for a family day. I will update again soon. Lisa April 21, 1999 BACK TO THE HOSPITAL WE GO.... I am going to start from the beginning. Last Friday morning Michael was climbing as usual and he fell on a book shelf, smack dab on his shunt. We did the usual thing, ice ect. He was fine except he was a little bit crabbier than usual, but he has had a runny nose for a few weeks, so we thought it was just because of his cold. About 4:30 a.m. Michael woke up screaming and holding his head. He was like a little hot potato, and the vomiting starting and did not end. Off we were to the ER. CT scan was done and X-rays were done along with the usual blood work. The CT showed he had a concussion, from the fall. It also showed that he has a severe sinus infection. The blood work came back with a strep pneumonia blood infection. This blood infection causes menengitis. So with all this in mind we had a very sick little boy again. So we were admitted and started 3 IV antibiotics. To tell you how sick he was, we were told that if we didn't bring him in when we did he probably would have had full blown meningitis. It is now Wednesday afternoon and we are able to go home now. I still have to give him 2 weeks of IV antibiotics at home and then another 3 weeks of oral antibiotics. Michael is doing much better now but it was very scary. I would like to thank everyone for the emails and cards you have sent Michael. He is getting letters and cards quite often. Thank You. Keep the prayers going for Emma, we want her and Michael to be playing together soon. Lisa April 15, 1999 Some good news!!! July 8th, 1999 a group called Pop for Charities is doing a benefit for Michael. It's going to be at First Ave nightclub. They have 6 bands so far that are going to play for it. They are going to do lots of publicity for this event, which is exactly what we want. We want as many people as possible to know about this terrible disease and how it is killing our children. I cannot express the way I quite feel about this, but it is definitely good. No matter what Michael's future holds, I want people to learn about this disease, and most of all remember Michael and how brave of a boy he has been. Michael has been doing well the past few days. Last week he had about 5 days where he was vomiting quite a bit, but it has since passed. Michael has been receiving a lot of mail lately and I would again like to thank everyone for the cards. A special person named Esther Lieggi from California sent Michael some puzzles. He loved them! Thank you. Also Michael's Great Uncle Bud and Great Aunt Nancy gave him some beautiful books and lots of Thomas the Tank trains. Thanks to you also!! I talked to Dr. Bendel last Friday. She would like to do some more chemo to the spine on Michael. Due to the fact of the Atypical cells in his spinal fluid, I told her we would think about it. It's so hard to make these decisions. When do we stop?? Michael got so sick from the last chemo to the spine, will this do him any good?? or will it just make him sick again? I wish there was an easy answer to it all. Otherwise, we are enjoying every day with him and praying for a miracle. We have beat the odds so far... Lisa April 6, 1999 Easter weekend was eventful as usual. Doesn't it seem like there is always something?? Friday night, which was Tony's birthday, we were supposed to head for my parents house for the weekend. Our plans changed. Michael started vomiting, so we stayed home to make sure that he was O.K. He was and on Saturday morning we left for Battle Lake. We arrived and had a nice time with my family. We had an Easter Egg Hunt with all the children and had a nice dinner. Anna was happy that we were there and everything seemed O.K. Around 1:00 a.m. Anna woke up unable to breathe. She had a high fever and was gasping for air. We rushed her to the Emergency Room in Fergus Falls which is 30 minutes away. Of course by the time we arrived she was breathing much better, but the fever was still present. The doctor listened to her and looked in her throat and said she is fine. Go home. I grew up in Fergus and I love the city but I have no faith in the hospital. So we gave her some Motrin and off we were to Battle Lake again. Frustrating!! Anna is doing much better now but it was very scary. So being that we were up all night and we lost an hour of sleep due to daylight savings time we missed sunrise church service. So Easter Sunday, which was MY birthday, we all slept and did not much of anything. On the bright side... I had my family all together and Michael is still with us. I hope everyone else's Easter weekend was better. Today we were invited to the Governor's mansion for a special spring celebration. Governor Ventura and his wife put this on for us. They had an Easter Egg Hunt and had a story time and did face painting. We took a picture of Tony and Michael with the Governor. I will give it to David to post when we get it developed. It was a fun day. How is Michael feeling?? He is doing well. He's been a little more irritable the past few days, but he is two years old. We will be doing another spinal tap probably in about a month to see what is going on with those Atypical cells they found. We just continue to pray and take each day and enjoy our time. I would like to say some thanks to the people who sent cards to Michael for Easter. Michael really enjoys reading them. A very special thanks to Miss Nancy for the birthday gift for Tony and I. Miss Nancy has become a very dear friend of ours and we thank God for her every day. My final thank you is for all of you who are keeping our family in your prayers, they have kept Michael fighting. Lisa March 29, 1999 Today we got the final pathology results of Michael's spinal fluid. It showed that he has Atypical cells in it. We will continue to monitor this closely, and see if they continue to grow and spread. We aren't sure what to think of this, all we can do is wait and see what happens. Keep the prayers coming, Michael needs them. Lisa March 29, 1999 Today we had Michael's MRI and spinal fluid checked. Everything looks great! What a relief!! Now the question is what do we do now?? Absolutely nothing!! We keep on praying and enjoy our days with Michael. We don't go back to clinic for a month, so hopefully we will have our new normal life. We will look at taking out his GT tube and central line in July. I would really like to thank everyone again for the prayers and support. It has been a long 9 months. To be totally in the clear from this disease Michael has to have no reoccurrence for the next 2 years at least, but we are on our way to recovery. Happy Easter and God Bless. Lisa March 24, 1999 ALL DONE WITH RADIATION!!!!! Today was his last day of radiation. It is such a good feeling to be finally done. We now have the MRI next Monday and if all is well, then we try and go back to a normal new life. Michael has beaten so many of the odds and we pray for many more years to come with him. I would again like to thank you all for the continuous support and prayers. I firmly believe Michael would not be here if it wasn't for all the prayers. Anna went to stay with my parents in Battle Lake this past weekend. She is needing so much extra TLC lately and I just haven't been able to give it to her, so Grandpa and Grandma are the best choice for her. Thanks mom and dad. Michael has been doing well except for since Friday evening he has been having some pain in his groin area. We did a urine test and it is all fine, so now we just keep an eye on it and if it persists then we will do some further checking into it. It always seems like something, doesn't it? I'll keep you updated on this also. A special reminder... Please keep Emma and her family in your prayers. They need all the strength they can get. Lisa March 17, 1999 Michael has been staying about the same the past few days. The MRI is scheduled for Monday, March 29th at 12:30 p.m. In the meantime we wait and hope that he gets better on his legs. On a good note we will be done with radiation on Tuesday! We will keep his GT tube and central line in until July and then remove them if all is well. So keep on praying and I'll update again soon. Lisa March 13, 1999 Things have been a little off this past week. First the colon test came back fine. He just has an extra sensitive little bottom. Michael started to get really clumsy and got progressively worse as the week went on. It has gotten to the point where he falls about 80% of the time. His head has been cocked to the right and a few times that I have seen his right eye has gone off in his head as he stumbles, and has been having extreme back pain. What does this mean? Well, we did a CT of the head on Friday to check if his shunt is working properly and if there is any swelling in his brain from radiation. They are both O.K. So now the question is then what is causing this. Is it late effects from the brain surgery? Or is it because of the anesthesia he receives every day? or the big question, is the cancer back? We are going to watch him over the weekend, and if this all continues or worsens then we will do a MRI of his head and spine and check his spinal fluid for any cancer. The reason we do a MRI is because a CT scan doesn't show tumor very well, so just because the CT didn't show anything on Friday, it doesn't mean that there is nothing there. Our hopes are that he is just very fatigued and this will go away on it's own. Meanwhile I have a little drunken sailor man. On an upper note our family is going to Little Mermaid on Ice this afternoon and looking forward to it. Anna's special friend that comes to play with her on Tuesdays won 4 tickets for the show along with a special lunch before with the characters. Thanks Jill for giving us a day of family fun! Emotionally it's been a hard week. Michael's hair has fallen out again in the areas where the radiation goes in. Something so petty, but it saddens me to see it happen for the second time. Then of course watching my son decrease so rapidly when he was doing so well. Most of all I'm scared that there is something brewing inside my beautiful babies little body. I know the prayers have been going strong and they are keeping Michael going, so thank you and please keep them coming. I will update again when we know something. Lisa March 10, 1999 This past week went great. Radiation went exceptionally well, he's a little bit sleepier, but hey, it gives me a little bit of sleep finally. His left side of his face droops a little bit, not very noticeable but being his mom I noticed. They say it is probably from the radiation and to keep an eye on it. His test on his bottom turned out good. Nothing seems to be blocking it so they did a strep test and a biopsy. We should know the result sometime this week. All in all it was a good week. Tony and I went to see the Titanic exhibit in St. Paul on Saturday. It was good to get out without the children, sometimes we really need that. As you know Emma needs lots of prayers right now. Please keep her in your heart and prayers. We love you Emma and keep strong! Unfortunately, we have found out of another child who has Rhabdoid Cancer. His name is Jacob. He is a 3 month old little boy who lives in Ohio. Please add him in your prayers also. This is very new to his family and quite scary. I would like to make sure that they know that they are not alone. Thanks again and take care. Lisa March 03, 1999 Michael has been doing exceptionally well this past week. He's been playing like a 2 year old and is even starting to try and say some words. He said "thank you" really well. ( such a polite son I have) We now have 3 weeks of radiation left. We did have a GI doctor look at Michael last week, due to the fact that Michael has extreme pain when he passes gas and has bowel movements. This has been going on for the past 3 months at least. So we are going to do a look up his little bottom with a scope and do a biopsy on Thursday. We're sure it's nothing serious but we would like to make sure. We did see the oncologist on Thursday and he thought Michael looked the best he's ever seen him! Very encouraging!! As David let you all know that Amy's MRI was just perfect. Thank you for all your prayers sent her way. I talked to her parents last week and they were very happy. This gives us more hope for Michael, for Amy did the exact same treatment schedule as Michael. Please keep the prayers up for our friend Miss Nancy. She is going through extreme eye pain and the doctors have no idea what to do. Hang in there Nancy! Thanks for the continued prayers and support. Lisa Feb 16, 1999 The first week of radiation went really well. Michael seemed to handle things great. We now have 4 weeks and one day left. The only little problem that we have is that we all have terrible colds in our house, and that means Michael too. He has started to vomit the past 2 days which is probably due to the radiation, so we are giving him Zofran to help with that. Also my sweet boy still doesn't want to sleep at night, so we are going to try Melatonin (a natural drug) and see if that helps him sleep. You won't be getting another update until next week because lucky Grandpa and Grandma are going to Cozumel for a week. Also, remember to pray for our friend Amy on Monday for a clear MRI. Until next week, take care.... Lisa Feb 16, 1999 ONE RADIATION DOWN AND 24 TO GO... Today we started the radiation. Lots of mixed emotions went through our bodies. I shed some tears for my little sweet angel. It's so hard as a parent to watch my child go through all this terrible situation. I am asking for all of your prayers for total healing from the radiation side effects, your prayers have kept him going so far and I plan on keeping him going for another 75 years (at least). I will say that Michael was definitely a little trooper today though. Not too much fussing and all in all really wonderful. It did take it's toll on him though. When got home he slept for 6 hrs straight and was up for therapy and went back to sleep for the night. I have 2 prayer requests for some special people in our lives that we have met due to this horrible disease. First, our special teacher Miss Nancy. She had some major eye surgery a few months ago and it is just not healing correctly, which means that if doesn't heal soon she will have to go back and have surgery again. So Miss Nancy... We love you and pray for your recovery. Now second, we have become friends with a family who's little girl also has the Rhabdoid Brain cancer. Her name is Amy. Amy is about a month or so ahead of Michael in her treatment, and she has also had no reoccurrence. She has finished her radiation and is due for her MRI checkup on Monday. Please send lots of prayers in her way, she is part of our small Rhabdoid family and we want the very best for her. Good Luck Amy, we will be thinking of you at 12 noon on Monday. As Always, Lisa Feb 12, 1999 We finally got the results from Michael's EEG. They showed no seizure activity during the twitching episodes. He did see the movements and they are usually caused by trauma to a certain part of the brain, which was not where Michael's tumor was. It can also be caused by certain toxic medications, this is where all those nasty chemotherapy drugs come back and haunt us. So now we sit back and see if he can get used to them, or otherwise there is medication we can give him to help but it has bad side effects also, such as lethargy. So that's the scoop on that. We start the radiation on Tuesday at 7 am. I am not looking forward to it at all. We did try and do a simulation of radiation today with sedation instead of anesthesia, but Michael would not go to sleep for anything, so anesthesia is our only option. Michael has still been doing well, except for a small case of a cold. Thanks for all the continued support and HAPPY VALENTINE'S DAY!! Lisa Feb 5, 1999 Michael's scans are all just fine. They took forever to get us the results, so sorry for the delay in letting you know. The EEG went really well. Michael had enough twitching and seizer activity the first 2 hours so they let us go home early. The results we still don't know as of today. I will let you know as soon as we hear. I hope they can do something for him, the poor guy is up all night because he can't hold still. Otherwise he is still doing wonderful. He's got lots of bumps and bruises this past week, but that is good because he is acting like a typical 2 year old boy!! Takes lots of chances and climbs on everything, and all that teasing big sister Anna has done in the past, well it is payback time. My parents did come down and help with everything on Wednesday. Grandpa took Anna to Uncle Larry's garage in Anoka and Grandma helped me with Michael at the hospital. Thanks mom and dad I don't know what I would do without you. We are very glad to hear that Emma is doing much better. Please keep your prayers coming our special children need them. Lisa Jan 30, 1999 On Monday we met with the neurologist Dr. Burstein. He evaluated Michael and we found that Michael has no reflexes left. His reasoning is because of the Vincristine Chemotherapy drug. They might come back in time or might not either way he will still function O.K. as far as this goes. He is concerned about Michael's seizer activity and the way he twitches quite often, so in light of all this we are going to do a 8 hour EEG with video next Wednesday. This will be quite the challenge, wish us luck in our conquest! We did the CT scans of his head, chest and abdomen and the head mold for radiation. We do not have the final results of the scans yet and will hopefully know by Tuesday. Sometimes I don't think they realize how important for the parents it is to know that everything is O.K. in a timely matter. Today we spent part of the day in the ER because Michael's GT tube came out. So we ended up putting a new one in. It was much easier than I thought it would be, and might I add that Michael was quite the trooper during it all! All in all this week went really quite well. Michael seems to be feeling a little bit better and he plays much more. Therapy was good on Tuesday, she was impressed with how much he accomplished in a week. Thursday we had to cancel because Anna had the stomach flu, but I work with him every day anyway. We even got the little basketball hoop out and he is doing quite well at making the baskets. Now he can't wait to go outside and play like he used to. Only a couple more months!!! It's in the upper 30's today and they say it's going to be in the 40's over the weekend! AS ALWAYS...... Thanks for the prayers and support. Lisa Jan 25, 1999 I am writing this with warm fuzzies all over. We received a phone call last evening from my sister Stacey and her friend Krista. Krista's mother and step father are giving us their car. To make a long story short we've been having lots of trouble with the car we currently have and have been extremely frustrated because we only have one car and we don't have the funds to buy another or to fix the one we have. I talked to her parents this evening and they said that they feel that God had given them the opportunity to help us out in this way. Also to make this even more unbelievable their friend who owns a car dealership is fixing what is wrong with the car and will donate whatever needs to be done. I cannot express how much deep gratitude I feel. God works in such wonderful ways. I would like to thank Craig and Irene for coming into our life at this time and for caring about our family. God Bless. Me and Tony are very thankful for this gift. Lisa Jan 21, 1999 We met with the radiologist on Monday and he agrees that we need to start radiation as soon as possible, but unfortunately they are short a radiation machine so we cannot start until February 15th. That means that we will be done just in time for Easter if everything goes correctly. Next week we meet with Dr. Burstein a neurologist to evaluate Michael and hopefully he will be of some help to why Michael is acting a little bit different lately. On Tuesday we do a CT of his head chest and abdomen and do a head mold for the radiation. I would like to thank everyone again for all the support and love you have given our family. Please keep it up we need everything we can get. Lisa Jan 16, 1999 Another day another problem.... About 2:30 a.m. Michael started vomiting about every 20 minutes and kept it up until I finally called the hospital at 8:30 a.m. We rushed Michael there and they did another CT scan and of course it showed absolutely nothing. So we spent the day on IV fluids because of dehydration and are now home again. Let's hope Michael can be well enough to watch the Vikings game. The only nice thing about spending the day in the hospital was that we got to see all of Michael's wonderful special nurses. They are absolutely wonderful people and they all love Michael lots. Thanks to all the special people on the 8th floor. Lisa Jan 15, 1999 Today we had the EEG. It showed that his brain is functioning O.K. They do now believe that the brain has suffered brain damage due to the surgery. It's very hard to get only the tumor and unfortunately something around the tumor area was damaged. We now meet with a neurologist next Monday to see what we can do to fix the problem. Hopefully we will be able to do something. Emma really needs everybody's prayers right now, she is not doing very well this week and needs our strength to help her pull through. We love you Emma and Michael gives you a great big hug and says you can do it. Rhabdoid Kids are Tough!!! Take care- Lisa Jan 14, 1999 Today was definitely eventful. I woke up this morning to Michael having a seizer type activity. We went to the hospital right away, and we did a MRI of his head and spine. The MRI showed that nothing has reappeared as far as tumor goes, but that still doesn't explain why the seizer? We are going to do an EEG tomorrow and hopefully that will give us some answers. We did find out something today that was a little bit disturbing. On December 11th the spinal tap that they did showed a Rhabdoid cell in the fluid. They chose not to tell us because they didn't want to worry us. Well, why was it there???? We don't know. We just keep thanking God for giving us the good MRI's and try to think positive. It's all so confusing at times that I am going to try and relax and take things day by day. If it comes back, well then at least we've had our time with him and if stays away forever, then we have been blessed with a miracle. I will update again and let you know about the EEG. Thanks and God Bless. Lisa Jan 10, 1999 Disney World was magnificent! We arrived in Orlando on the 2nd of January and it was 80 degrees and humid. It felt wonderful compared to the cold snowy Minnesota we left behind. We checked into our hotel and went to sleep very early that evening. On Sunday we got up and headed for the Magic Kingdom. Michael and especially Anna were so excited. We went on rides and saw all of the characters. The main highlight was seeing Mickey Mouse of course. Anna adored him. Michael was O.K. from a distance, but close up was a definite NO WAY!!!! All in all Magic Kingdom was probably the best day of them all. On Monday we went to Epcot. It was absolutely beautiful! We didn't get into the scientific type of stuff too much because Michael just didn't care, so we went to all the different countries around the lagoon. It was so relaxing for us to just walk and look at all the different cultures. Every single one makes you feel like your actually in their country. This was probably me and Tony's favorite of all. On Tuesday we went to MGM Studios. It was cold and windy and not too much fun for everyone. Michael is just too little to enjoy it. So we decided to leave early and head up to Ocala to see Michael's Great Grandparents. We had a lovely time. Anna and Michael got spoiled beyond belief and absolutely loved it. Tony and I had a wonderful time visiting. Tony was very happy to see his grandparents, for it had been over 4 years since the last time he saw them. This ended up a great day also. Thanks grandma and grandpa for the dinner, it was great seeing you! On Wednesday we went to the new Animal Kingdom. This was beautiful! Lots of trees and greenery and ANIMALS! We went on a Safari and Michael loved it! He laughed and clapped his hands though the whole entire thing. It made you feel like you were on an actual Safari, Disney did such a great job on that. On Thursday we went to Universal Studios. Tony was in a making of Xena the Warrior Princess, and Michael met Hercules. Michael got to touch Hercules magic gem bracelet that gave him extra strength powers. Let's hope that they give him lots of strength!!! We also went to see the Nickelodeon stage. We participated in a show. It was lots of fun. By the end of this day we were exhausted, we were asleep by 7:30. On Friday we went to Sea World. This was definitely Michael's favorite place of all. He loved the dolphins and especially Shamu. The show's were absolutely magnificent! Michael squealed with delight!!! This was a great day, my son was the happiest I've seen him in months!!!!! On Saturday we got up a little early due to the fact this was our last day in Florida. I wanted to see the Ocean, so we drove to Cocoa Beach. There is something about the ocean that makes you get those warm fuzzies inside. Anna and me picked seashells and Tony and Michael played in the sand. Anna is the only one who went swimming, although I still got wet making sure she didn't go out too far. We ate at the Pier Cafe and off we were to the airport to go home. We arrived in Minneapolis at 7:15 p.m. and it was soooo cold!!!!!!! It's funny though because Anna was so thrilled to see the snow, children see things so differently sometimes. So Grandpa David picked us up and drove us home. Michael and Anna went to sleep within 10 minutes and Tony unpacked all the souvineers and put them up around the house. Our trip to Florida was now over. All in all our trip was great. Michael had a few ups and downs but that was to be expected. Now we are back to reality and go on with our lives. Tomorrow I make an appointment with DR Bendel and make all the arrangements for the radiation. Please keep those prayers coming, for it has been six months since this has all began and now is the time that the tumor would return if it's going to. Thanks for all the continued support and God Bless. Lisa Jan 5, 1999 Lisa called last night to let us know how things were going. It seems that everyone was so excited about Michael going to Disney World that we all forgot one thing...he's only two years old and afraid of everything. I'm sure he is not feeling very well yet and that's part of the problem, also due to the chemo, he has lost a good portion of his hearing and that probably makes him feel uncomfortable. Hopefully before the week is over he will calm down enough to have some fun or a least let one of his parents out of his sight long enough to take Anna on some rides. We get visitors from all over the world, so I had part of Michael's page translated using one of the on-line translators... I have no idea if they are correct but they look like they might be. I am not responsible for any bad language. For all you Superman fans we received a message from Gary H. Grossman. He's the gentleman who wrote the book "Superman: Serial to Cereal", it's one of the main sources for Superman information used on the internet. He sent his prayers to Michael. I like to think this means that Superman is in there pulling for Michael...hey every kid needs a Superman. Finally, congratulations to the Tennessee Vol,#1 in the nation. Next up,Minnesota Vikings soon to be #1 pro football team in the nation. Jan 2, 1999 It's 5:30 am here in Mpls and it's snowing. In two hours I pick up Michael and the rest of his family to drive them to the airport where they will leave for Disney World, hope the roads are ok. Michael had bad headaches the night before last and almost had to go to the hospital, but he's ok now. Kent from the Miracle Kids web site lives in Florida about an hour away from Orlando and he said he would like to meet Michael and family. He has been trying to work out the details with Lisa. Tony's grandparents live in the same area but it would be nice to have someone in the area who is familiar with this cancer stuff and where to go for help. I would like to thank Kent for his continued support, he has been with us from the start. One of my son's who is currently living in Salt Lake City is on route to Nashville Tennessee with a friend to attend a managers school for "Cracker Barrel". I hope his wife Barb can stand to be without him for three weeks, the silence may be unbearable. He called last night from Nebraska and said he is in the middle of a snow storm but hopes to be able to make it to DesMoines before quitting for the night. I wrote to Miss Nancy, who lives in the area, and told her not to worry if she sees a redhead, around two hundred pounds, walking in circles, it's just my kid. She said that she would warn the music city that he is on the way. Well that's about it for Michael and family news. I hope everyone had a terrific Holiday. I have to go check the drive way, hope I don't have to shovel. Don't think the neighbors would appreciate the snow blower running this time of the morning. Bless you all Dave (Michael's grandpa) Dec.28, 1998 Christmas was hectic but wonderful for our family. We went to my parents house for Christmas Eve and all of my sisters and families were all there. Christmas Day was spent with Tony's family. It was a little bit different this year due to the fact that 2 of his brothers now live in Utah and were unable to come home. It's funny how you miss the commotion of a full house. Michael and Anna received lots of great gifts this year, but the best gift for me and Tony was that we were all together as a family. We are now getting ready for our trip to Disney World coming this Saturday. Anna is so excited that every night she prays for all of her Disney friends. Michael doesn't quite understand yet, but he will when we get there! Thank you Children's Wish Foundation for giving us the unbelievable trip. We really need a break from reality. I hope everyone had a wonderful Christmas and look forward to the New Year. Let's hope that this is a new beginning for our family. Again, thank you for all the prayers and keep them coming! I will update again after our trip. Lisa Dec.18, 1998 I have been told that my last update sounded like Michael was totally cured, I wish that were true. At this point Michael's cancer cells have not returned, that does not mean that it is gone for good. The fact the cancer cells have not reappeared does give a good indication to us that the treatments are working. We appreciate your prayers and feel very strongly that God is honoring the sincerity of your request We give Him praise and honor for Michael still being with us. We also feel that God is using the medicine and knowledge of the medical staff and physicians. Your continued prayerful support is necessary to help all of those involved in Michael and our family to continue keeping on this journey. The past few days Michael has not been feeling well, the nausea has been terrible which makes him extremely uncomfortable. We have decided to wait until the middle of January to give him any more chemo to the spine. We will then wait until the radiation is complete to do anymore. We meet with the radiologist on Monday to go over the plan. Jonathan Parker lost his battle to Rhabdoid cancer yesterday at 1:00 a.m. Please keep his family in your prayers. We are very saddened to hear of their families loss. I would like to give a special thank you to Miss Nancy and her class for sending Michael and Anna Christmas stockings that they made. They absolutely loved them!!!!!!!! I won't update until after Christmas unless something changes with Michael. I would like to wish everyone a Merry Christmas!!! Lisa Dec.12, 1998 MRI WAS PERFECT!!!!!!!!!! We have been blessed with a perfectly cancer free son. We are very thankful to have such wonderful news. We started Michael's intrathecal chemo to the spine today while he was under, it went well other than a little bit of nausea. We will be doing it every month for the next 6 months or so. Thanks for all the prayers they are still working!!!!! We will have a wonderful Christmas!!!! Lisa Dec.09, 1998 We had a meeting with Dr. Bendel today, we discussed our next step in Michael's treatment. We were told that Michael's cancer will be back within the next few months if we do not do radiation. The experimental chemo that he recieved has been found to not work by itself. Out of all the Rhabdoid children in history there have been only 5 survivors, all of which had radiation. So with all of this in mind we don't have a choice but to do radiation to his tumor bed, which is the spot where the tumor was. This is the hardest decision we have ever had to do, Michael will have permanent side effects from this, but if I can have my son, I am willing to take the chance. The main side effects are loss of short term memory, reading and math skills, and coordination. He wouldn't lose his personality and would hopefully function in this world like a normal person. If at any time the cancer does come back then at least we can say that we did all that we could do for him, and we can go on without guilt. I hope Michael will someday say " thank you" to us for making this difficult decision for him. I love my son, and I pray to the Lord for his healing touch. Till Friday........ Lisa Dec.08, 1998 Michael has been home from the hospital now for 10 days, the longest ever since the very beginning. He is becoming the Michael we once knew a long time ago. He is walking again by himself for the first time since the surgery and I might say he's doing very well. Eating, well that's one thing we have to work on a little bit, but he will eat some things, his favorite is Grandpa David's ice chips. The talking is also getting somewhat better also. He has said thank you, Anna, King (our dog), bye bye, uh oh, mama, bubble, ball, and car. Not too bad is it? We will be having Michael's MRI on Friday, it will be of his head, spine, lungs and stomach. We all pray that this will show that nothing has reappeared. If nothing has reappeared, we will then sit down with Dr Bendel and go over our next step. We will decide on the intrathecal chemo, which is chemo given directly to the spine. It does cause some long term side effects but it will give us some more insurance that the cancer will be gone for good. Please keep Michael in your prayers they seem to be working, I will update again on Friday evening with the results. Also, please remember Jonathan and his family in your prayers, for they are having a difficult time. Lisa Dec.1, 1998 It's over 60 degrees here in Minnesota, it should be below zero with a foot of snow. Normally people are putting their icehouses out on the lakes, this year they are still launching their boats. Go figure. Nothing new to report on Michael, he is home and doing about the same. The family did receive good news, Children's Wish Foundation out of Atlanta Georgia is sending Michael, his sister and parents to Disneyworld for a week, all expenses paid. They will be leaving sometime in January. We are hoping Michael will be strong enough to make and enjoy the trip. Children's Wish is not the same as Make a Wish. Make a Wish is only for children over two and a half years old. They want to make sure the wish is the childs idea and not the parents. There is a chance that 6 months from now Michael may not be able to make a trip like this one, so we are very grateful to Children's Wish. Besides what child wouldn't like to go to Disneyworld. For those of you who haven't visited Jonathan's page recently, he is in very bad shape and continues to lose ground rapidly. Please let Jonathan's family know that we are here and praying for them. Until next time. Dave (Michael's grandpa) Nov.26, 1998 Happy Thanksgiving to all. The doctors took a new look at Michael's head and believe that the lumps are being caused by his skull trying to rearrange itself and mesh that is under his skin. They do not feel that there is anything to worry about. We hope they are right. They are going to wait for a couple of weeks to do an MRI. We are going to eat our turkey today and watch the Vikings game, maybe at the same time. Michael is a big Viking fan and usually is wearing purple. Take care and have a great day. Nov.22, 1998 Lets see if I can get the facts straight this time. Some of my updates are second hand and lose something in the translation. The last update I stated that Michael had and MRI when he really had a CT scan. From what I have been told a CT scan is almost useless when it comes to finding brain tumors. Michael is in the hospital and receiving transfusions, his hemoglobin dropped to 6.5. The lump on his head has not increased in size, but he is starting to show signs of a new one growing. His coordination seems to be going downhill, and he has spells where he becomes a little spacey. He has sores inside, it is very painful to go potty, they have him on valium to help with this. They will probably do a spinal tap and MRI this week to see what is going on. I can't think of any good news, hopefully next time things will be looking up. Now that I think about it, I had a transfusion once because of low hemoglobin, probably not even as low as Michael's, and I was spacey and felt like the ground was moving under my feet. Maybe that's what's happening to Michael. On the brighter side, Miss Nancy had been having trouble with her cornea transplant taking hold. It now looks like things are going better and the transplant is healing. Keep it up, your class needs you. I have no new information on Tony, hopefully I will soon. For any of you who have not visited Jonathan's page lately, he is still going down hill and may have to cancel his birthday party. Jonathan's father, Gregg, was going to make up his mind today and post it on his page. Keep up the prayers for Jonathan and the other children as well. Nov.18, 1998 The night of Nov. 17 and the next day were rough. Michael developed a lump on the back of his head about the size of a half dollar and sticking out about one inch. The doctors thought it was a fluid build up at first and tried to draw fluid from it. The lump was not fluid and they decided to do an MRI the following day. About half way through the MRI Michael woke up which made it difficult to finish. After viewing the MRI the doctors determined that the lump looked like a cyst between Michael's skull and his skin. They have no idea what is causing it and they are going to keep a close eye on it. Hopefully this will correct itself and is not connected with the cancer. We will wait and see. We have a new little boy joining Michael and Emma. I do not know a lot about him yet but we are working on putting his story together. He is two years old and I believe he lives in Wisconsin. Like Michael and Emma he also has a Rhabdoid Tumor. I will have a guest book up and running for him as soon as I can. The page makes no difference, the important part is that he needs our prayers now. I want to thank everyone who wrote to me about Katie and had her in their hearts in her last days. Nov.16, 1998 Not much new on Michael. He is still the hospital and doing as well as can be expected. Michael's birthday party went great even though he was pretty tuckered out. The party had to be held in the hospital, we had a nice room so it worked out ok. Michael had friends and relatives from all over at his party, and a special appearance from Mickey Mouse. Mickey performed a few magic tricks and face painted anyone who wanted to be painted. I am still working on the pictures from the party and will get them posted as soon as I can. Tony and Lisa attended the funeral for Katie Flanders today. It was one of the hardest things they have had to do. Lisa said she will never forget the way Katie would blow you a kiss when you were about to leave her room, and in her tiny little voice would say Bye Bye. Katie touched a lot of people during her short time in this world. There were a number of people from the hospital who attended. We love you Katie!