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Click here to go back to the main page. Friday, July 6, 2007 Hello everyone. Well, yesterday was Michael's birthday he would have been 7. Yesterday morning was rough, but then I started remembering all the good times that we have had through out the years. I know that he is feeling better this year he is not in any pain, he can see, and he is running around playing with the other angels. We had a little birthday party for him, and let balloons go. It was really nice, but hard at the same time. Friday, March 9, 2007 Hello all today is Alexsis 9th birthday. I can't believe that she is really 9 already. Her birthday wish list contained only two things this year #1 A brother #2 A dog. She did not ask for anything else everyone that asked her what she wanted she told them the same thing. The kids are all still doing pretty well. Alexsis and Ashlee are both doing really good in school both of them are doing really well in reading. Ashlee has to try a little harder, but she does really well. Adreanna is getting sooooo big she is trying to walk she has 5 teeth now. She is in everything and anything she wants to taste everything. She is going to be 1 next month oh my how time flies. Well, I am going to run I want to thank everyone for still coming by checking up, and continuing to pray for our family.
Sunday, October 15, 2006 Hello everyone sorry that it has been so long since the last update. The girls are doing really well in school. Ashlee's birthday was the 28th of last month and mine was the 29th. Those two days were really hard we have never had a birthday in the last 6 years without Michael. Christmas is coming I know that is going to be really hard. Michael is still coming every day to play with his toys. It is so nice to hear them go off the other day when I was sitting on the couch I smelled him it was like he was sitting on my lap. I know that it was him because no one in the world smells like him.
Thursday, August 31, 2006 Hello everyone the girls started school on Monday. They both love it Alexsis did not want to go the first day she asked me if she could stay home with me for just a couple more days. Ashlee was ready to go to school she was ready to see her friends. I was not ready for either of them to go to school. The first day I cried I do not like to be at the house by myself yet plus Michael was going to start school this year. He would have had home school I just can not believe that he is really gone I miss him like crazy. Even though I know that he is still here he has been playing with his toys still. He has unlocked the door and locked it back twice now there is a lot of stuff going on around here. Wednesday, August 16, 2006 Hello everyone Michael has still been coming here and playing with his toys. It is not even close to the same, but It is so wonderful to know that he is still here with us. I just wish that we could touch him, hug him, and kiss him. I still look around the house for him the other day when we went out I put the girls in the car and turned around to come back in and get Michael. Not that I forgot that he was gone he just belongs with us were ever we go. The girls and I have been going to the cemetery every day. It is so hard looking at the ground knowing that your child is there. I would not wish this on anyone else. I wish that I could take his place and he could be here with the girls. Daddy Cruz has been taking it really hard as well. We got together a couple months before Michael got sick so he has been here through it all. When we leave and it is dark outside he makes me leave a light on for Michael. Sleeping is not the same I have a king size bed, and Michael has slept with us since he was 2 1/2. Now it is just us two in the bed it feels empty. Michael passed away on my side of the bed so I still sleep there and leave his side empty for him. He was such an awsome son, brother, and daddy...lol because as we all know the Adreanna is his baby not mine. I am really glad that I got as many pictures of them together as I did. The love that they shared him 3 months was really priceless.
Friday, August 11, 2006 Hello everyone we had the service yesterday it was so hard. When I walked in the funeral home and seen him laying there my legs gave out and I started screaming and crying. Cruz, my cousin, and my mom were holding me up so I did not fall on the floor. It was pretty rough I could not stop crying my legs were shaking like a leaf. I do not remember much of the funeral at all. There were 5 fire departments and 3 police departments there (I think that is all there might have been more, but I was not there mentally to remember anything). I was having such a hard time walking that when I came outside that they put me in a wheel chair and strapped me in (Talk about feeling like a retard later on). I felt like they should have been taking me to the nut house. They were all so scared that I was going to pass out. I didn’t though I stayed with him I wanted to go home, but no one would take me home. Now I am happy that I stayed with him. Cruz got there right after me and I cried and told him that if he loved me that he would take me home. He looked at me and said you have never left Michael do you really want to leave him now? I really did not want to leave I was just really scared and did not want to see him that way. I did touch him, and I was not scared so that was really nice it made me feel better to touch him again. It was not the same but it was nice to feel him again, and see him laying there peacefully not in ANY PAIN. I would NEVER wish that on my worst enemy. When they carried him out they took him to the cemetery on the fire truck I was screaming and crying again. When we got to the cemetery there were two fire trucks making an arch way we all rode under it. I was up until 3:30 this morning crying I still do not want to believe that he is really gone. I want to thank everyone that came to the funeral yesterday. I am sure you all understand why I did not talk to anyone. I really want to thank my mom for supporting us so that I could stay home, and take care of Michael. Without her I would not have all the wonderful memories that I have. He will always be a part of our lives. He is still here we have been getting signs that he is here. In the toy room we have an angel on the ceiling that was never there before. You can only see it from the door way in the dinning room when you walk closer it is gone. You can walk underneath it and there is nothing there you can't see anything at all. During the day it is not there only at night you can see it how awesome. His toys have been going off they have never done it before. They are the toys that you have to push the button for it turn on. It is not the same because we can not touch him, and he does not talk back when we talk to him, but just knowing that he is here is a really nice feeling. I miss him like crazy and I always will. He was my world and now I am so lost. I feel like this little person in this big world. I am so scared of everything and anything now.
Friday, August 4, 2006 Hello everyone. When you look up at the sky tonight you will see a new angel. Michael passed away this afternoon around 12:30p.m. He is now pain free playing and running around in heaven. He passed peacefully thank GOD. Saturday, July 29, 2006 Hello everyone Things are going a lot better here. We came home from the hospital last Thursday. All 4 kids and I stayed with Michael, and the girls did such a great job. Michael is on IV morphine now so he is feeling a lot better not in pain most of the time. Sometimes he needs an extra dose, but not too often. He had an MRI done on Thursday before we came home. The MRI did not turn out very good at all. His tumor has doubled in size in 2 years. It goes all the way down his spine, and has taken over all the fluid spaces in his brain. The doctor told me that the tumor is so big that it is pushing his brain stem towards the back of his head. He is still kicking though (THANK GOD) he is so amazing. Tuesday, July 18, 2006 Hello everyone Michael is in the hospital. He has been there since Sunday he was having a hard time getting to sleep. He was in a lot of pain and nothing that I did was making him feel any better. He is starting to feel better though. He got up and took a walk today so that was an excellent change. One more time God has blessed us. THANK YOU GOD! He is going to have an MRI done Thursday morning to see if we can go through surgery again to take out some more of the tumor. The girls and I are all staying at the hospital with him so I will update again when we come home. Hopefully Thursday afternoon. Thank you for all of your prayers. Friday, July 14, 2006 Hello everyone I have added new pictures to the photo album. Michael is doing a little bit better. He has not gotten up and stayed awake for long, but he is atleast waking up now. I am going to run I just wanted to add pictures today. Tuesday, July 11, 2006 Hello everyone sorry that I have not updated in a while. Michael was doing pretty well until Friday he has not waken up a lot since. He was awake for his birthday which was really nice. Saturday we had family over for cake and it took everything that he had to wake up. He started having seizures Sunday and we finally got them under control yesterday so he has been sleeping peacefully since. He woke up a little bit today and had a couple bites of food, and a couple cups of soda. He is trying to get better he at least woke up on his own today and was talking a little. He had been doing pretty good until Friday. His sight had come back and was coming and going. He is still getting tube feeds so hopefully that will help him as well.
Sunday, June 11, 2006 Hello everyone things are still going ok here. Michael is still not eating a lot, but he is up and walking around the house all by himself. He is still not seeing so is does run into things from time to time, but he has gotten use to feeling around so that he does not run into anything or fall down as much. He lost his eye sight right after they did the surgery back in January 2003. God blessed him and one day out of the blue he could see again. Since he has been sick his eye sight has never been 20/20. When Michael first lost his eye sight it broke my heart it still does from time to time, but he is still here with us.
Wednesday, May 24, 2006 Hello everyone Michael is doing a little bit better. He has been waking up and eating a little everyday. His breathing is a lot better. He is still not seeing anything at all. He is an amazing little boy I cannot thank GOD enough for helping him get back up again. I want to that everyone for praying for Michael and my family. I will update again soon and hopefully I will have even better news next time. Friday, May 19, 2006 Hello everyone sorry that I have not updated in a while. Things are pretty bad with Michael now. He is not doing anything except sleeping. He was not holding anything down even through the tube. He finally started hold everything down the night before last after I gave him some medication. He is really weak and has lost so much weight even though he did not have any extra to loss. He is now noting except skin and bones it really breaks my heart watching him. He is not able to walk he has a hard time holding his head up unassisted. I put him back on oxygen last night to help him breath more and better. Because he is so weak he is having really hard time breathing. He still loves for his baby to lay with him. She loves it too the both go right to sleep most of the time when she is in his arms it is really amazing.
Friday, May 5, 2006 Hello everyone things are still going pretty well here. Michael has been having more headaches again, but they might be from the heat. He has not been eating a lot and has been doing a lot of sleeping, but that could all be from the heat. He has to show everyone that comes over all the babies stuff. He loves her to death and gets really upset when the girls touch her. He is a really good big brother. Saturday, April 15, 2006 Hello everyone I want to welcome Adreanna to our family. She was born at 12:27 a.m. on April 14, 2006. She weighed in at 4 pounds 11 oz. 18 inches long. She has a head full of black hair. She has to stay in NICU for a couple of days until she can hold her own body temperature. She is doing really good she is not on any machines. Thursday, March 30, 2006 Hello everyone everything here is still going really good. Michael is up playing and eating he is still only 32 pounds, but he is eating on his own. Hopefully he will start to gain weight soon. My mom has been staying with us for almost 2 weeks now, and she has been making him eat three meals a day or he does not get soda. It is really working pretty well because Michael has to have soda. Plus he needs to eat like the girls, but I have not been able to tell him NO. If he wants chips and hot sauce that is what he gets until now. He is doing really well with eating he tries to get out of eating. He tells us that his baby is going to get sick or that he does not like it, but as soon as you say ok then you cannot have any soda he eats it gone. He is like any normal child he tries to get away with whatever he can.
Friday, March 10, 2006 Hello everyone. Things are still going really great with Michael. He has been eating on his own still, and up playing most of the day. It is so nice to see him up and having a really great time. He looks like he is finally gaining weight. We will probably be dropping hospice soon they are not doing anything when they come. We can have him put back on if we need to, but hopefully we will not need to. Michael will start school next year not sure where yet, but he needs to start school.
Monday, February 13, 2006 Hello everyone I have GREAT news. Michael has been up and playing full-time now. We had a snow storm here Saturday night. Michael went out side Sunday morning and helped my mom and the girls clean off the cars. He stayed out there for about 30-45 minutes. He has not had the feeding tube in for a little over a week. He has been eating on his own. He is doing really awesome GO MICHAEL!!
Sunday, January 29, 2006 Hello all sorry that it has been a while since the last update. Things are going really good here. Michael has been up playing with Alexsis and Ashlee. He is still getting the tube feeds because he is not eating a whole lot on his own. I am looking into a new treatment for him if the doctors in P.A. approve him he will start hopefully next month. He had his 3-year anniversary on the 22 we had cake and ice cream for him. I thank God for giving him the strength to keep going he is an amazing little guy. The girls are really amazing too they have done so well with everything. I am going to start potty training Michael tomorrow. He is not at all happy, but hopefully things will go smooth. Tuesday, January 3, 2006 Hello everyone sorry that it has taken me so long to update. Michael is still doing ok he took his tube out Christmas eve. We left it out for Christmas when I went to put it back in he could not stop sneezing. He has a sinus infection so the tube has been out. As soon as hospice brings another one we will put it back in because he has not been eating a lot. He slept the whole day after Christmas, and woke up with the sinus infection so he has only been up playing for 2 days now. Thursday, December 22, 2005 Hello everyone sorry that I am late on the update. Michael went and got the NG tube he has been doing a lot better. He has been up playing and running around it has been really wonderful. He has so much energy it is so wonderful to have him up running around and playing with the girls. I have not been in the Christmas spirit like usual until now. Now that Michael is up running around I cannot wait for Santa to come. Monday, December 12, 2005 Hello everyone things are still going ok here. Michael has been very tired lately. I am taking him in to A.I. tomorrow to have a feeding tube put back in. He has not been eating enough he is down to 31 pound with two layers of clothes on. He is not happy with the tube, but then again none of us are happy that it had to come down to the tube again. I just think that he needs a little bit of help to start eating again. He says that he is hungry, but he does not want to eat anything. He cannot wait for Santa to come so that is a good sign. Sunday, December 4, 2005 Hello all well we are moved in, and almost all the way unpacked. Michael is still doing pretty well. He still tells me that he wants to go home. He has been getting up and playing a little. He has not been eating like he needs too. I called the doctor Friday I am going to talk to him about putting a NJ tube in again. Saturday, November 19, 2005 Good morning all. Michael is doing better he is getting up and playing a little bit. I have been buggin him like always I do not let him sleep all day he has to get up and spend a little bit of time with us. We are going to be moving AGAIN today. When we get settled in and I get the computer hooked back up I will get on and update again, and put some pictures on. The girls are still doing well they are upset that we are going to move and leave their friends, but who can blame them. Well, I will update again soon.
Saturday, November 05, 2005 Hello everyone Michael has been down since Tuesday. I was not able to get the MRI done because he has not been feeling really well since I called and scheduled it. This week he has not been doing a whole lot of anything except sleeping. He has lost weight since he has been sick cause he does not want to do anything poor thing he was doing so great. He woke up in the middle of the night Wednesday night and had a hard time going back to sleep. When he woke up Thursday morning his legs were really wobbly when he was walking he was taken baby steps when he stopped walking he feel asleep. I am hopping that he will be better tomorrow he has been scaring me pretty good lately. He has been getting a lot of back pain what that is from I have no idea he has never complained of having back pain now it is full-time. He went to my moms house last night when I called her she said that the adivan is finally kicking in. She said that when he woke up he was standing and walking straight. She also said he woke up hungry and ate a little bit of chicken noodle soup. So maybe today he will be ready to get up and play a little bit.
Sunday, October 23, 2005 Hello everyone things are still going great. Michael has had a couple days down, but other then that he is doing really well. He is going to get an MRI done either this week or next week. He is strong enough now if the MRI shows improvement then we will watch it for a couple months and in a couple months if there is no change then we are going to look into new treatment options. my prayer is that when we go for the MRI that the tumor will be gone. I will let everyone know for sure when the MRI is.
Wednesday, October 12, 2005 Hello everyone things are still going pretty good. Michael, my mom, and I all have some kind of bug. I am not sure if the girls carried it home, but thankfully they have not gotten it. Both of the girls are still doing really good. I am going to the doctors tomorrow I have not been able to hold anything down again. I have also been having a lot of pain in my stomach and lower back. My mom said that she remembers that I have lots of trouble every time that I have been pregnent. Thank GOD I do not remember that.
Sunday, October 2, 2005 Hi everyone. Well, everything is still going pretty good. Michael has still been feeling pretty well. He still only needs morphine once in a while. He has been up and playing a lot lately. I have been thinking about home school for him so that he can go to kindergarten next year. The girls are also doing really well in school. Alexsis has a problem in reading, but other than that she is doing really good.
Sunday, October 2, 2005 Hi everyone. Well, everything is still going pretty good. Michael has still been feeling pretty well. He still only needs morphine once in a while. He has been up and playing a lot lately. I have been thinking about home school for him so that he can go to kindergarten next year. The girls are also doing really well in school. Alexsis has a problem in reading, but other than that she is doing really good.
Sunday, October 2, 2005 Hi everyone. Well, everything is still going pretty good. Michael has still been feeling pretty well. He still only needs morphine once in a while. He has been up and playing a lot lately. I have been thinking about home school for him so that he can go to kindergarten next year. The girls are also doing really well in school. Alexsis has a problem in reading, but other than that she is doing really good.
Sunday, October 2, 2005 Hi everyone. Well, everything is still going pretty good. Michael has still been feeling pretty well. He still only needs morphine once in a while. He has been up and playing a lot lately. I have been thinking about home school for him so that he can go to kindergarten next year. The girls are also doing really well in school. Alexsis has a problem in reading, but other than that she is doing really good.
Monday, September 26, 2005 Hello all things are going pretty well with everyone. Michael has been doing pretty well he is still only taking the morphine a couple times a week. The girls are still doing well in school. Ashlee had a lot of fun at her birthday party. My mom and I got the toy boxes done 2 hours before the party the kids liked them. There are pictures of them posted. Sorry that they are so big I could not make them any smaller. Sunday, September 18, 2005 Hello all. I want to thank everyone who checks up on Michael, and everyone that prays for him. January 22 will be three-years that Michael has been fighting. He is very strong and amazing little boy. He does get weak, but God gives him the strength to get up and keep going. The day after I wrote about him having such a great week he started sleeping again. He has still only needed the morphine a couple times. I am hoping that once it gets cooler here he will have an easier time. The heat really gets to him it just puts him to sleep. He is up for a couple hours a day playing. Monday, September 12, 2005 Hello everyone. Since the last update Michael has been awake every day almost all day long. GO MICHAEL!! He has take a couple naps a day, but nothing like he was doing. He has had morphine 4 times so far that is great I do not know if the increase in the patch is working or if his pain is just decreasing. It has been so wonderful he is eating more now, and playing with the girls. He is such a fighter he gets knocked down, and thank God some how he finds the strength to pick his self right back up. All three of the kids are just so wonderful. Even though they do not listen all the time, and they are always fighting I would be lost without them. I might be a stay home mom, but I can never honestly say that I had a boring day. Wednesday, September 7, 2005 Hello Everyone
Sunday, August 28, 2005 Hello everyone sorry that it has taken a while for an update. Hope that everyone enjoyed the pictures. Unfortunatly we did not get to take too many pictures on our trip since Michael was sleeping the whole time. Michael has had a couple good days since we have been back, but for the most part he has been sleeping and laying around. This afternoon he was feeling a little bit better. Yesterday he was having a lot of pain, and having seizures on and off until around 11. He has been waking up in the middle of the night again in pain. He started taking the morphine around the clock again when he is awake.;(
Wednesday, August 17, 2005 Hello everyone there are new pictures finally. I will update in a couple days. We went on vacation and now Michael and I both have a nasty cold thank God the girls do not have it yet. I will update as soon as I feel a little bit better.
Tuesday, July 26, 2005 Hello everyone. Sorry that it has been a while since the last update. Things are still going pretty well. I took the girls to Dorney Park two weeks ago. They really enjoyed it, but Ashlee could not really get on anything. Other than that they had a great time especially in the wave pool. They kept asking to go in there all day. Last week I took all of the kids to Chuckie Cheese. Michael was very excited to go and play the games, but once we got there he did not want to play anything really he wanted a balloon. Once I bought him a balloon he started playing a little bit, but not a whole lot. He was much more interested in the balloon. He loves balloons especially yellow ones. Tuesday, July 5, 2005 HAPPY 5TH BIRTHDAY MICHAEL!
Sunday, June 26, 2005 Hello Everyone. Well, Michael started having seizures Wednesday night. They are pretty much under control now. He is still very tired, and does not feel all that great. He slept all day today except about an hour and a half. The girls went to stay with my mom on Wednesday. She kept them until Saturday afternoon so that they could get out of the house. Plus I do not want them to watch him when he is feeling the way that he was they have had to see too much already. The girls did not mind though they were in heaven. They got to play and make noise I was making them be quiet so that Michael could sleep. They missed karate this week because Michael was not feeling good. They both understand they were not mad for too long.
Friday, June 17, 2005 On Wednesday Sponge Bob came to our house. I want to thank everyone at seasons hospice they are the ones that brought Sponge Bob to our house. It was really nice Michael did not want anything to do with Sponge Bob. He tried really hard to stay away from him. He loves Sponge Bob on t.v, but when he came out of the t.v Michael was really shy did not want to talk to him or even get to close to him. Wednesday, June 15, 2005 Well, I signed the girls up for karate yesterday. They are both very excited Michael has a uniform, but he is not going to be going to karate. I have put some new pictures in the album some of them do not look that great, but that is because the girls could not stay still they were jumping around. Alexsis has her first practice tonight, and Ashlee has hers tomorrow night they go on Saturday. When we got home last night Alexsis was telling Ashlee that they had to practice karate. No one has showed them any moves, but they need to practice. I guess we will see if they like it, and want to stay with it. I will let everyone know Saturday night. They both will have gone twice by then so they will know if they like it, and want to keep going or not.
Tuesday, June 7, 2005 Today is the last day of school for Alexsis so I guess I better get ready to put up with the girls fighting all the time now. She can't wait she has been telling me that she is done school on Tuesday, and that after Tuesday she does not have school anymore. I told her that she has to go back in a couple of months and she was so upset. Friday, May 27, 2005 Hello there everyone. We have moved the new address is at the bottom. Michael is doing pretty good still he has had a couple of rough days, but he has also been outside playing a couple of time too. We had to switch hospice which was very hard since Michael and I both like the other nurse we will never find another nurse like her. The social worker from there was very cool as well I felt a conection with her right away.
Sunday, May 8, 2005 HAPPY MOTHER'S DAY!
Sunday, April 24, 2005 Hello there everyone. Sorry it has been a while since the last update. I do not internet at the house anymore. Plus Alexsis was sick last week so we did not leave the house. The kids are all still doing pretty well. Ashlee and Michael stayed at my mom’s Wednesday and Thursday night so that Michael did not catch what Alexsis had. I am not sure that it worked he had a fever of 99.9 not that it is a really high fever or anything, but for him it is. He has been fine though I guess it was just another scare. Ashlee now has a cough she has not had a fever yet knock on wood. Wednesday, April 13, 2005 Hello everyone. The Hospice nurse brought the doctor on Monday to look at Michael he said that things look as good as they are going to look to him. Michael was very uncomfortable Sunday and Monday he was having a hard time sleeping, and when he finally did get to sleep he was whining. The doctor increased his morphine to 2.5 every hour as needed. He has been feeling better his pain is not as strong, but it is still coming and he is still gasping. Thursday, March 31, 2005 Hello everyone Michael is doing ok his blood pressure was low for a while there. It is now up a little it is not
Monday, March 14, 2005 Hello there sorry that I have not updated in a while. I would like to start by asking everyone to say a prayer for my mom her friend passed on March 8th. My Aunt Belinda came from South Dakota to be with her, which was really nice. David’s sisters also came so it made things a little better for my mom because she was not alone she always had someone there. Which made me feel a lot better I know that it was very hard for my mom, but he passed before the pain got too bad.
Tuesday, March 8, 2005 Hello everyone. Michael is still doing pretty well. We went bowling Sunday from 9 to 12. He did pretty well for the first hour and a half after that he started to get pretty whinny. He was ready to go but the girls were having too much fun they did not want to leave even at 12 they asked if they could stay there all day. The girls were pretty tired too. We went bowling for Alexsis’s birthday I told her that we were not going to have a party this year. She was pretty upset, but I explained to her that I did not think that Michael would be able to handle the noise for that long especially since he does not like to listen to the radio for that long. I told her that I would take cake to her school and she could have cake and ice cream with all of her friends at school. Once I told her that we would go bowling at that she could have the ice cream and cake at school she was fine. Michael slept all day yesterday the hospice nurse came, and Michael only sat up for her he did not get down and help her like he usually does. He was awake for about an hour yesterday and that was it he did not even wake up for his noodles and hot sauce like he usually does. I guess we will have to see how his day is today hopefully he is just very tired from yesterday. Wednesday, March 2, 2005 Well Michael went to the doctors on Monday and the he know weighs 29 pounds. He has been waking up in the middle of the night crying in pain. The doctor increased him morphine from .8 to 1.2 and his patch from 75mcg to 100mcg. He said that he is not sure that when he waking up that it is all caused by the pain he said that he thinks that he is having dreams, and that the dreams are scaring him. I am not sure if you really have dreams before you go, but I had a talk with him about it anyway just in case I do not want him to be scared. He said that Michael's immune system is very weak now he said that if he gets a cold that it will take him. Not at all what I wanted to hear, but I bundle him up very good now even inside if he sweats then he sweats as long as he does not get a cold. He is such a wonderful child I am really glad that I was chosen to be him mother.
Monday, February 21, 2005 Hello Everyone. Michael is doing pretty well at times. The last couple of days he has had a little bit of energy in the morning, and then in the afternoon he starts to get very whinny. Hospice came today and said that all of his signs are still the same they are low, but they are not any lower than they have been. We went outside yesterday to ride the power wheels and Michael stayed out there for a couple of minutes and told me that he was done that he did not want to play outside. The girls on the other hand did not want to come in until the batteries died and then they still were not ready. Well, we had a three-day weekend and mommy is surely ready for the girls to go back to school so that I can hopefully rest. Michael's energy ran out pretty early today so he just laid around, and I'll tell you what it looked so nice. I tried to lay down with him and as soon as I did the girls started wanting my attention, but that is nothing new they always want my attention when he lays down. Wednesday, February 16, 2005 Hello everyone sorry that I have not updated in two weeks. Cruz came back his brother Louis age 35 passed away on February 1st. So I have been busy helping him get all of the arrangements made and taking care of him. He went back to Mexico this morning for 20 days to make sure that his mom is ok.
Tuesday, February 1, 2005 Well Saturday was great. We went to Chuck E Cheese stayed there for four hours. Then we went to my uncles to take a nap, and eat dinner. We were all very tired when the kids woke up they seemed to be ok so we went to the fire house for three hours so we all had a very long day, but he still did not sleep all night. I put new pictures in the photo album.
Friday, January 28, 2005 Hello everyone. Well, last weekend was ruined we had lots of snow here. The girls enjoyed it but Michael did not want to go out in the snow he wanted to get dressed up to go out, but as soon as I went to put his coat on he would tell me that he did not want to go out. Unfortunately him feeling good did not last he started whining again all the time Monday night. He has not been sleeping very well again either. He went to the doctors on Wednesday the Dr. increased the patch from 25 micrograms every three days to 50 micrograms every other day. The name of the medication in the patch is Fentanyl. Friday, January 21, 2005 Well hospice came yesterday. I was talking to the nurse about what Dr. Walter wanted to do she decided that we should try the morphine at .6 every two hours and use a Duragesic patch first. Hey sounds better then being on an IV drip of morphine. We started yesterday it has seemed to help I am not sure about taking the pain away, but it has seemed to help. The really good thing about this medication is that it is not suppose to make him sleep all the time the liquid morphine helps him sleep some times, but not always which is a plus. Wednesday, January 19, 2005 Hello everyone well, a lot has been going on since our last update. Michael has been having a couple of good days here and there. He has been very whinny still the other night he started crying, and I asked what was wrong. He told me that his head hurt when I asked him to show me he would point to a spot on his head when I asked him right here his reply would be no here. He was then pointing to his arm every time that I would ask him if that is where it hurt he would point to another spot. I guess his whole body hurt. He has lost a lot of weight he is now the size of a toothpick. He now has two new bumps on the back of his head one is in the back by his shunt the hospice nurse said that she thinks that it is either fluid or the tumor. Wednesday, January 12, 2005 finally some good news. Michael has been eating pretty well for the last two days. He has been eating french onion dip, and a little bit of chips. He has been breaking off a little piece of chip and putting a mountain of onion dip on it. He is still pretty whinny his balance seems to be a little bit better he walks flat footed with his legs spread like his diaper is full all the time whatever works. He is still having tremors, but it does not seem like they are affecting him which is really nice.
Sunday, January 9, 2005 Hello everyone sorry it has been so long since our last update. We have had a lot going on Shaun came down to visit with the kids for a week. Michael’s has been having a rough time his balance is getting pretty unstable he has been very wobbly thankfully he has not fallen to many times. He has been sleeping most of the time especially during the day. He has still been whining a lot so the hospice nurse increased his morphine on Monday to .6 every two hours. He has not been talking very clear lately so we were not sure if he was in any pain or not. The morphine did not stop him from whining so she decreased it again on Friday to .6 every four hours. Wednesday, December 29, 2004 Hello everyone Michael has had a wonderful last couple of days his eating has even picked up. Yesterday the hospice nurse came and she increased his Keppra, and added Adavan to his list of medications. He was ok this morning, but when he woke up from his nap he was doing pretty rough. His balance was very poor he almost went headfirst into the wall. I called hospice and the nurse came out she said that there is nothing that she can do about his balance that it is the tumor making his balance poor. She called in a medication for his sinuses and said that she hopes that the pressure from his sinuses is what is making his balance poor. His blood pressure and respiration’s are low today. Let’s pray that it is just sinus pressure. I will try to write more tomorrow now is just not a good time. There is new pictures in the photo album. Saturday, December 25, 2004 Merry Christmas
Wednesday, December 22, 2004 I went to the doctors on Monday, and the scan was really bad I am still having a hard time believing it. The kids got a 12 foot trampoline for Christmas we are planning on putting it together Christmas eve. Anyone that wants to help us we plan on starting at 7:30 @ 241 Sycamore Rd Elkton, MD. Michael does not have his tube anymore the doctor said as long as he is eating at least every other day and drinking every day it is ok as long as he does not lose weight. Sorry about the pictures I lost the camera I have not been able to find it since Sunday night. I will post pictures as soon as posible.
Tuesday, December 21, 2004 Michael is still doing pretty well. He has still been sleeping about 20 hours a day and never the same hours. His eating has picked up a little bit he still has not taken his tube out Friday, December 17, 2004 Hello, everyone I heard form the doctor today and the previous entry was wrong. When I got the results from the MRI I talked to the nurse. The doctor called today and asked me how Michael was and I told him that he was still doing pretty well. He told me that the tumor has grown a lot since his last MRI, and that he was surprised that Michael was still doing well. He said that he wants me to come up Monday and look at the MRI so that I can see exactly how much tumor there is. Now I understand why it has taken him so long to call me back I told him that I do not want any bad news before Christmas. Thursday, December 16, 2004 Michael's MRI showed that there is growth and now has tumor in the third ventrical. He has been doing pretty good still sleeping about 20 hours a day. Sometimes I get him to stay awake longer I have to make him get up and do stuff. I will write more tomorrow and add new photos. Wednesday, December 1, 2004 Hello everything is still going pretty good here. Michael is still eating slim jim's and drinking soda. He ate the whole box of slim jim's that his pop pop bought him on Friday he finished them Monday morning. He is still getting up and playing he does not want to sleep in his own bed, but that is fine with me because I feel better when he sleeps with me. Alexsis has been sleeping in his bed and he does not like that one bit he crys and tells me that is his bed. Part of me is dying for christmas to come because he is so excited about santa coming so are the girls I am sure all kids are. He tells me that santa is going to bring him candy and a baloon. He is easy to please he wants a lot, but those are the two things that he tells me all the time that santa is bring for him. Monday, November 29, 2004 Michael has finally started to eat and drink. He is only eating Slim Jim’s and drinking soda, but it is a start. Each Slim Jim's has 50 calories and he has been eating about 25-30 a day. He started eating them Tuesday night, and has not stopped eating them since. That is the first thing he grabs when he wakes up. His pop-pop bought him a box of 100 Slim Jim’s so he tells me every time he gets one look mom I have a whole bunch. I figure it will last him until Monday morning with the way he is eating them now.
Monday, November 22, 2004 Michael Finally left his tube in over night. Michael loves it when we see fire trucks go down the road. I called today and talked to the Chief at Mill Creek. He said that I could bring Michael down there any time so we went last night. It was so amazing I cried a couple of times (Happy tears). Michael and the girls were all in heaven they were just running around playing with all of the guys there and having a blast. The guys at Mill Creek Fire Department are wonderful. They looked like they were having just as much fun and getting just as tired as the kids. This adventure will be a memory that will last forever. They showed the kids around and showed them some of the equipment and how it works. It was like we were in another world last night no stress no worries just having a good time. I really want to thank everyone at the fire station for letting us come last night it was amazing, and all of you guys were really great.
Sunday, November 21, 2004 Well it is very clear now Michael is rotten as crap. He had his first tube put in Friday his second Saturday, and his third one today. Last night I had it taped on his neck and safety pinned to his shirt, and he still took it out and took the safety pin out and threw it on the floor. If he takes this one out I am going to have a G tube put in (a G tube is where they do surgery and put the tube directly into his stomach). I did not consider this an option before only because I do not think that he is going to need it for too long. Now I am seriously thinking about having the G tube put in because I do not want to have to take him to the doctors every day to have this tube put back in. He has not lost a lot of weight yet, but he is not eating and not really drinking so he needs the tube in. There is no way that I will let him get down to 20 pounds again. Saturday, November 20, 2004 I decided to take Michael to get a NG tube yesterday. He was not very happy with me at all. It took him a little while to even look at me. I told him that I loved him and he just sat there quiet as could be looking in the other direction. I asked him do you love mommy and he said no. A little while later I asked him can mommy have a kiss, and again his reply was no. I gave him a kiss, and he did not even look at me. So of course I had to cry I felt so bad that I had made him that angry. He sat on the couch for a while and just looked at the wall the t.v. was on, and he did not even want to watch it. I was so upset I knew that he was not going to be happy that he had to get the tube, but I did not know that was going to be his reaction. I went back to the couch and tried to pick him up, and he squeezed his arms real tight to his sides so that I would not pick him up that did not work I won this time. I explained to him that I had the doctor put the tube in because I love him not because I was trying to be mean. I told him I love you and I want you to get big and strong again so that you can come and play with me. I reminded him that he was not eating or drinking very well and told him with the tube mommy could feed him. That made things a little bit better he at least looked at me. About a half-hour latter he got down off of the couch and went and played with the girls. When he was talking he was talking with his teeth closed and trying not to open his lips. Finally after he was playing for a couple minutes he came and gave me a kiss. Friday, November 19, 2004 Hello there everyone. Sorry I have not done an update in a while. Michael has not been feeling very well. He has still been throwing up, and now he is not eating. He is barely drinking he is drinking just enough to keep himself hydrated. Tuesday is when he started getting worse he came home early from preschool because his head was hurting. When I got there to pick him up he was sleeping. I asked him if he was ready to go home and he barely opened his eyes and then closed them back. He came home and I gave him some Advil and it did not really seem to help he was very restless. He was whining every time he rolled over. I called the doctor the next day to get to ask him to schedule a C.A.T. scan he asked me why did I need a scan done, and I told him that Michael was having really bad headaches. His reply was well you do not want to do radiation so the tumor is growing and that is the problem. He went in at 2p.m. for a scan. The scan showed that there is not anymore fluid then before. I was hopping that the fluid was making him have the headaches instead of the tumor growing that way we could just put a shunt in on the right side. The neurosurgeon came in, and said that the shunt is working fine and that it was the tumor growing. He said that the bottom part of the brain is covered with tumor. So that is what is causing the headaches they were so bad that he could not even hold his head up. I called hospice and the nurse called in Tylenol with codeine, and that has seemed to help he is at least sleeping for about 20 minutes, and feeling good enough to get up and play for a little while. I am going to take him to the doctors today Friday 11/19 to have another feeding tube put in. I was not going to continue to send him to preschool after he got the tube put in, but the coordinator and I talked and we decided that we will give it try. He does have fun there after the first couple of seconds. They are really good with him and Ashlee both so I know that they would make sure that the tube did not come out, and make sure that the other kids were careful around him as well. The teacher told me that the kids ask where he is the days that he stays home. I have known a couple of the people at their preschool for a couple of years now so I feel safe with him there. They all know his situation and try very hard to treat him like everyone else which is really nice, since he is a 4 year-old boy. I know that it is really hard at times to treat him like a normal 4 year-old, but he is going to be here for another 90 years so he needs to know that he is just like everyone else. Well, I will write again on Monday and let everyone know how the weekend went. Wednesday, November 10, 2004 Michael woke up today at 4a.m. around 5a.m. he started vomiting. He got sick twice that is one of the scariest things to me. I block the fact that he is sick most of the time, but as soon as he starts getting sick I get so scared. So needless to say he is staying home with me today. We dropped the girls off at school and went to Happy Harry's to pick up his medication. While we were waiting he got sick again. He is so cute after he gets done getting sick he tells me that he is hungry. When we got home from the store he went to sleep on the couch, and did not wake up I had to wake him up to go and get Ashlee. He was not very happy with me, but we brought his blanet and he went right back to sleep. I scheduled his MRI it is for December 7th at 7 in the morning. I was trying to hold off on the MRI until after Christmas, but I figured I would go ahead and do it now. I need to know how the fluid is doing and make sure that he does not need another shunt. I am praying that they will tell me that the tumor is at a stand still or even better that it is gone. Well, I will try to write tomorrow and let everyone know how he he is feeling.
Wednesday, November 9, 2004 12:58 AM CST Michael had a rough start today, but had a great time at preschool. He has still been waking up very early in the morning every morning. Sometime I get lucky and he will sleep all night, but not most of the time. He made a huge mess in the living room this morning. So I guess I had a rough start too waking up to that kind of mess. He woke me up at 4:20 so I think that he had to have waken up around 3. So we cleaned it up and went to school. He could not stop talking about his day so I know that he had fun. He came home and played for a while. We had the hospice nurse come today, and as soon as she left he climbed up on the couch and went to sleep. I thought that getting involved with hospice would be a good thing for all of us, but now I am not too sure. I just don’t feel like I can talk to the nurse about anything. Maybe getting hospice involved was not as good of an idea as I though that it was. The girls went out and played on the play set until they could not stand the cold anymore. They were pretty loud and Michael just slept right through all of the noise. Wednesday, November 8, 2004 12:54 AM CST Michael went to the eye doctors today. He was not happy at all, but he still did very well. The doctor said that he needs glasses so now I am going to have to fight with him everyday to wear them. The doctor said that his eyes are pretty bad. He said that some of the optic nerve in both of his eyes is dead, but he said that he thinks that the glasses will still correct his vision. Right now I do not really complain about his eyes I am just glad that he was blessed by getting his sight back. I just want him to be able to see everything clearly. Now when he watches the t.v. he has to stand on top of it to see it. It will probably be at least two weeks before we can pick up his glasses as soon as I get them I will put a picture of him on the web site so that everyone can see how cute he looks even in glasses. Alexsis has an appointment next Monday to have her eyes tested. Ashlee has not complained about her eyes, and when I ask her she says that she can see fine. Part of me is not surprised at all that they are having problems with their eyes. They did not really have a chance from the door I wear glasses for reading and their dad wears glasses. Thursday, November 4, 2004 Hello Everyone. Well everything is going really good still here. Michael gave us a little scare he slept for a week, and only woke up for about an hour a day. That has now passed thank God, and he is now back to getting up in the middle of the night. Which is ok with me as long as he does not scare me anymore by sleeping all of the time. Wednesday, October 27, 2004 Hello everyone well all is well here. Michael is still doing pretty well. He has a couple of really bad days were he did nothing except sleep, but he is now over that. He is still in preschool, and of course he still hates to be dropped off and picked up. I guess that he does not remember from one day to the next that he does have a good time at school. The kids are all excited about halloween Michael is going to be Bob the Builder (as if I had to tell you) Ashlee is going to be Ragetty Ann and Alexsis is going to be a princess. I will have new pic's on here of halloween I know that I have been really slacking with the pic's. Michael will have another MRI in November. Friday, October 15, 2004 Good morning everyone. Well I made it through my scare he has been doing fine since he was picked up. He slept most of his day yesterday, and he slept through the night, and is doing just fine this morning. Both of the girls remember the day that Michael was diagnosed they told me last night. Mom you remember the last time that Michael was sent home for getting sick the doctor found his bump. They both worry a lot sometimes I wish that they did not worry at all. I mean that is suppose to be my job not theirs. They are only suppose to worry about playing and not getting hurt. Thursday, October 14, 2004 Michael is still doing pretty good. He has not lost any weight that is noticeable at least. He is still waking up in the middle of the night every night. My Aunt is going to pick him up at daycare they called and he is running a fever of 100.1, and getting sick. NOT a good sign in my book, but let’s hope for the best that he is just catching the flu or something. He was fine this morning I am just very scared. Especially since this is the only sign that we got when he was diagnosed. He came home from daycare because he was getting sick.
Thursday, October 7, 2004 Hello everyone. Friday, October 1, 2004 School is really kicking Michael's butt. He has been coming home the past couple of night's and going straight to bed. He has a great time there though because he can not stop telling me about his day until we get home or until he falls asleep in the car. We were running late this morning so I was going to have my mom take them to preschool. I called and they are still there. Ashlee has a 12:40 doctors appoinment so my mom decided to keep them home. I bet they are crushed especially Michael. Fat chance that would happen especially when it comes to spending time with mom-mom. I think that it is so funny if my mom tells Michael no and he does not want to hear it he will tell her that he wants his mom. He will do the same for me if I tell him something that he does not want to hear he cries for his mom-mom (He is not spoiled or anything though).
Thursday, September 29, 2004 Hello everyone today is Mommy's birthday. The kids are not as excited as they were yesterday. School is closed today due to all of the flooding so they got to stay home, and mommy got to spend her birthday with the kids. It was really nice we just sat around the house most of the day, but they were really good. Tuesday, September 28, 2004 HAPPY BIRTHDAY ASHLEE!!!!!
Tuesday, September 21, 2004 Michael has been in school for almost a week now, and has done pretty good. Yesterday he woke up at 1a.m. so he slept most of his day away yesterday at school and at home. Ashlee is also having a blast at preschool she tells me all the time that she has made a lot of new friends, and that she even gets to play with Michael when they go outside. Alexsis is not liking school she complains all of the time that Ashlee and Michael do not have homework, but she does. As for me it feels really wonderful to be back at work. I don't like to be away for the kids, but it seems to be working pretty good for all of us. The kids are all really tired when they come home. Michael's eye appointment was cancelled so no news on that one yet. I will update everyone in a couple days. Thursday, September 16, 2004 Michael and Ashlee started preschool yesterday. Michael has been telling me that he wanted to go, but I was not really sure how he would act once he was really there. My mom and aunt picked them up and they said that they both had a ball. His teacher told me this morning that he was really outgoing yesterday and just having a ball. My mom and my aunt were both telling me that he was giving the teachers high 5's. When they came home last night they both had a mouth full to say. He was very excided this morning he told me he wanted to go to preschool NOW. He goes tomorrow to the eye doctor he is going to need glasses he has a lazy eye. He had that before he was diagnosed. He is now eating better than he was not great, but better. Wednesday, September 1, 2004 Michael has not been eating well at all. He will take a couple of bites and then he is done or he will tell me that he is hungry and then when I fix him something to eat he tells me that he is not hungry. He is now at 32 pounds. He also has not been sleeping very well. He woke his sister up this morning at 2:45 I don't know how long he was up with out us hearing him.
August 27, 2004 Michael went for a MRI today. After he was in the recovery room for about 5 minutes the doctor called down and said that he would like us to come up after he was released from recovery. I called up to the doctor to see if I could reschedule our appointment because we had not slept the night before. He told me that it was very important that he talked to me. I went up and he told me that Michael’s tumor has grown again. It is now the size of a walnut and it has started to stem off in 2 different areas, and has started to intertwine in the brain it’s self now. The tumor on the spine has also had some growth. The doctor once again suggested radiation. Now all of a sudden he is also throwing the suggestion of at home chemo out there. The doctor is also all of a sudden stating that the radiation will not have any affect on him for at least a year. When he first suggested radiation he said that he would have major side affects from the radiation because of the location of the tumor. I just think that it is funny that all of a sudden the affects are going to take a while to kick in. I guess they just want to do some more experiments on him. He has a doctor’s appointment on Thursday the 2nd. Wednesday, July 28, 2004 Hello there sorry to keep everyone waiting again. Michael's MRI went really great the MRI showed that there is no new growth. He has another one scheduled August 26th. He has started to wake-up again nice and early in the morning, and if I do not hear him he tears his room apart waiting for me to wake-up and hear him. He still has a lot of energy.
Thursday, June 3, 2004 Michael goes June 15th for his next MRI. He has been doing pretty well, but the headaches are still there. I have noticed that sometime he will just be sitting there and start hitting himself in the head. His pupils are very small at times without looking at them with a light so the doctor said that is a sign of pressure. He has still been playing and trying his hardest to keep up to the girls. Monday, May 10, 2004 Hello here is an update finally. Michael is doing pretty well he has had a lot of energy lately. He has been outside playing when the weather is nice enough. He has been sleeping through the night he is getting Tylenol every 6 to 8 hours to keep his headaches to a minimum. Without the Tylenol he is complaining full-time that his head hurts. We had a pretty good Mother’s Day. Michael tried his hardest to help me and Cruz cut the grass. The girls helped me clean inside of the house. When it comes to cleaning up inside Michael usually does not want to hear clean up, but if there is something to be done outside he is there. Sunday, March 28, 2004 Hello everyone. We went today and got our pictures taken finally a new picture of him. He is still doing pretty good. He has been crying that his head hurts him a lot. He is also losing weight he says that he is hungry, but every time I put something in front of him, he takes a couple bits and says that he is done.
Tuesday, March 16, 2004 Michael went for his MRI on Thursday. The results were not what I was expecting at all. They doctors said that the old tumor did not really grow, but he now has growth covering the whole outside of the brain. I was for sure that the tumor was not growing. I was praying that it was going to be gone, but I was prepared for it to still be there. However I was not prepared for that kind of growth. Friday at the doctors I asked if they thought that he has eight months, and his responce was no. He said that since there is new growth it will grow faster.
Monday, March 1, 2004 Hello there everyone. Sorry I have not updated in a while. Michael is still doing pretty good the MRI did not get moved up it is still on the 11th. He went outside yesterday, and played in the yard with his sisters for a long time. He has been a lot more tired lately, but maybe that is normal for a three year old. The closer that the MRI gets the more scared that I get. I try to believe that it is going to come back and say that the tumor is gone, but the bad thoughts still linger in my mind. I pray for the best. I want to thank everyone for keeping him in your prayers. I recently found out that a little girl named Sara passed away on September 29, 2003 from the same kind of cancer that Michael has. Tuesday, January 27, 2004 Hello eveyone sorry that we have been away for so long, we do not have our computer right now. We had a really good Christmas Michael liked the balls more than any other toy. I guess that is a boy for you though. He finished his weekly antibiotics so no more going to the doctors every week. Go Michael! ! ! ! He is doing ok right now one night he is sleeping and then the next night he is not sleeping much at all. His next MRI is March 11 I am try to get that moved up because as a mother I am worried. Some of you might not know, but Michael was never sick except for you common cold or earache before he was diagnosed. So if the tumor is growing back, I am not sure if he will be sick or if he will show any signs. The day that he was diagnosed I took him to Newark emergency room because he was vomiting and could not get to sleep. I though that he just had the flu. So hopefully they will be able to do the MRI sooner even if it is just to make me feel better. Today him and Ashlee are both sick they were both up all night vomiting. Therefore, we are guessing that is nothing to worry about because they both have it. Friday, October 10, 2003 Michael's doctors appoinment went really well today. They removed his feeding tube today, and he helped. His counts are all still really good. The tube in his chest will be removed in about 5 more months.
Wednesday, October 8, 2003 Hello everyone. Finally an update sorry to worry everyone we have been without a computer. Michael is doing really well. He did really well with transplant, and recovered really fast. He has not needed blood or platelets since we left the hospital after transplant. He did not want anything to do with food until just about a week ago. He has been getting tube feeds at night. He has had a lot of energy, and has mantained his weight. We went to the doctors a month ago, and I decided not to go with radiation. They will do an MRI every two months to keep an eye on the size to make sure that it does not grow. They told me that it is not going to cure him it would just prolong his life, and at the same time cause him brain damage. We tried whale cartlage, but it was too thick for his tube and, there was not a chance he was going to take it by mouth. We are looking into whale liver oil, and a couple other things that my mom found online. Friday, August 22, 2003 Hello everyone. Sorry that I have not been on in a while. Michael is doing really well. Since the last update he has had an infection in his urine, and was peeing out blood. He still has the infection, but he is not peeing out blood. His counts recovered very quickly, and he is starting to be very active. He has been out of bed at least one time a day all this week. He will hopefully get released next week as long as everything goes smooth. He has had his central line fixed twice now. He is doing very wonderful, and will go for his MRI September 12th. He has been doing really well with his bathes lately too. He gets a bath every morning he did not like it a couple of weeks ago, but now he is doing a lot better with them. Wednesday, August 6, 2003 DAY 11
Tuesday, August 5, 2003 DAY 10
Monday, August 4, 2003 DAY 9 Sunday, August 3, 2003 DAY 8 Saturday, August 2, 2003 DAY 7 Friday, August 1, 2003 DAY 6 Thursday, July 31, 2003 DAY 5 Wednesday, July 30, 2003 DAY 4 Tuesday, July 29, 2003 DAY 3 Monday, July 28, 2003 DAY 2
Sunday, July 27, 2003 DAY 1 Sunday, July 27, 2003 Hello everyone. Michael came back to the hospital Friday morning. He started his big round of chemo today. His transplant date is August 4th. He has been doing really well he is still eating really well. He is now a little over 30 pounds. GO MICHAEL.... These last two weeks he has really been back to his self. He is just so full of life that he amazes me sometimes. Once he came home he did really well he walked instead of crying to be picked up, and took a short nap if he took one instead of sleeping all day. He is such a fighter, and we want to thank all of you for keeping him in your prayers. This month has been a very good one. We have had a couple weeks of up time which is really nice. He is back to his old self which makes me very happy. He got so many cards, and stickers for his birthday from all around the world. Wishing him a wonderful birthday. He was not feeling very well around his birthday, but once he started feeling better he really enjoyed everything. He will probably be here for at least a month. The doctor said that there is a 10-20% chance that the chemo and transplant will get rid of the rest of the tumor. Sunday, July 20, 2003 Michael went to the doctors Wednesday the 17th. He is now 28 pounds, and will probably finally go the beginning of next week for his big round of chemo and transplant. Since he has been home he has been doing really well. He is still on the feeding tube, but he is eating really well on his own. He is mostly eating junk food, but anything that he will eat I will surely give him. He has not been taking naps since we come home so by bedtime you can tell. We had a cook out yesterday with all of his cousins and his Great Aunt from South Dakota. He did not really feel like playing a whole lot he just wanted everyone to take turns holding him so that he could tell him or her about the tube in his nose. He really doesn’t like the tube in his nose, but he has not pulled it out because he understands that it is helping make him strong. Tuesday, July 15, 2003 Michael came home yesterday. He still has the NJ tube so he gets feeds at home, but he has started to eat a little bit now. He was up walking a little bit last night his legs are still wobbly, but he actually got up on his own that is a major improvement all in it’s self. We were all happy to finally come home he has to go back to the doctors on Thursday for labs and to make sure that he is not losing any weight. His youngest sister (Ashlee) got so use to going to the doctors every day. She asked me last night and this morning if we were going to the doctors. Alexsis and Ashlee were both very happy to have him home last night. At bedtime they both asked if Michael was coming too. This is also hard for them as well they have none EVER been away from one another, and now are apart all the time. Friday, July 11, 2003 Michael is still not eating a lot. He is eating more than he has in a long time, but that is still not enough. He is still getting sick every morning, and having the runs. Two weeks ago they sent his bowels away for testing, and they have came back positive. He has an infection is his intestens from all of the antibiotics that he is on. He is getting another antibiotic to help clear that up, but still no luck with his appetite picking up enough for him to gain any weight. I am very thankful that since he has been in the hospital he has not lost any weight he has not gained any either, but at the weight he his now he can not afford to lose even a pound.
Thursday, July 10, 2003 Michael is feeling a little bite better now. He is eating more than he has in a month, but he is still not holding it down he is having the runs and getting sick. He has an infection in his intestens from all of the medications. They gave him an antibiotic by mouth starting yesterday to help clear it up. He is still sleeping a lot, but he sounded better yesterday when he woke up. I have added another link to the bottom of the page it is to his quilt from quilts of love. They did a really great job on both of his quilts. As soon as he can stop getting sick and getting the runs he will be coming home. I ask him every day if he is ready to come home, and yesterday was the first time that he said yes so hopefully that means that he is starting to feel better. He has not been out of bed since he has been in the hospital, and usually once he starts feeling better he is zooming through the halls. I want to thank everyone that worked on his quilt you really did a great job thank you.
Sunday, July 6, 2003 Michael had a lot of fun yesterday. He did not have the energy to play, but he still wanted his balloon. He loves his balloons so much he always has to have at least one every time he goes into the hospital. They put in an NG tube today to feed because he is not eating enough to gain any weight. They started by feeding him 10cc's the first hour they are working it up to 40cc's an hour. He has kept it down so far let's just hope that he keeps it down so that he can gain some weight. He can still eat with the tube in, but if he doesn't then he will at least be getting something through the tube. He is nothing but skin and bones now. When it was time to go back to the hospital he was ready he was so beat. He was ready to go to bed by the time that we did the cake, and opened his presents. His sisters had to open his presents they did not mind at all. The girls went swimming for most of the party so they were also beat when they got home last night they only difference is they fought to go to sleep they did not want the party to end. Michael cried to my mom on the way back to the hospital that he did not want his party. When the girls and I went to the hospital today he played with them with his toys from his bed he does not have the energy nor the stength to get out of bed. There sre new pictures in the album, and also check out the link at the bottom of the page it is his birthday quilt from quilts of love.
Friday, July 4, 2003 Happy 4th of July everyone. Michael is doing better he was playing a little bit more yesterday after he woke up from being sedated. He had a MRI done yesterday of his brain that is just one of the tests that they have to do before he gets his transplant. He has to stay in the hospital until July 8th. He will get to come home for his birthday party, but he has to be back at the hospital by 7p.m. for his 8p.m. antibiotics. They are going to keep him there until the 8th because they want to make sure that his infection is gone this time. The doctor said that if the infection does not stay gone they would have to replace his central line. Tuesday Michael had a biopsy done of his sinuses they thought that he had sinusitis. The results have not come back yet, but the ENT said that he does not think that it is sinusitis. He said that it just looks like a lot of mucus from his allergies acting up. He put him on some nasal drops that he does not like at all. Will let everyone know how tomorrow goes.
Friday, July 4, 2003 Happy 4th of July everyone. Michael is doing better he was playing a little bit more yesterday after he woke up from being sedated. He had a MRI done yesterday of his brain that is just one of the tests that they have to do before he gets his transplant. He has to stay in the hospital until July 8th. He will get to come home for his birthday party, but he has to be back at the hospital by 7p.m. for his 8p.m. antibiotics. They are going to keep him there until the 8th because they want to make sure that his infection is gone this time. The doctor said that if the infection does not stay gone they would have to replace his central line. Tuesday Michael had a biopsy done of his sinuses they thought that he had sinusitis. The results have not come back yet, but the ENT said that he does not think that it is sinusitis. He said that it just looks like a lot of mucus from his allergies acting up. He put him on some nasal drops that he does not like at all. Will let everyone know how tomorrow goes. Wednesday, July 2, 2003 Michael's infection is gone now they have him on three different antibiotics. The doctor told me yesterday that he will be home for his birthday even if he just comes home on a home pass. He ate today---go Michael. He had 1/2 a grilled cheese sandwich and some chips. He is still not in the mood to play for too long, but he did get up yesterday morning and go in the hall and color with his friend Tyler. I am going to redo the web page sometime this month so look for that.
Monday, June 30, 2003 Michael went to the doctors Friday when we got there he still was not keeping anything down, and was running a fever. He was admitted and they did some test to see what was going on that he had a fever. They did a Cat scan to make sure that he was not vomiting from the tumor growing. The Cat scan of the head showed that since his last MRI a month ago the tumor has decreased in size. REALLY good new especially since he has been off of chemo for almost 2 months. They also did a Cat scan of his sinuses it showed that his sinuses we very infected. They doctors told me just because he has cancer does not mean that he can not catch things that we do it just means that he catches them worse, and sometimes they are harder to get rid of. He also had another line infection. Yesterday his culture came back negative. Hopefully the infection will stay gone so that he can be home before his birthday. They are going to send him home on some new medication to flush his line with. Transplant will be pushed back for at least 1 week due to the infection. I have added one new photo. I will change them all next week after his birthday party. I will not have room for all of the, but anyone that wants me to send all of them to you please e-mail me and let me know.
Thursday, June 26, 2003 Michael had an Neuropsychology test yesterday. They could not do any of the test on him because he was very tired. I took him upstairs to the doctors because he is still not holding anything down. The doctors found nothing wrong with him they sent him home on an antibiotic just in case he had something that they looked over. He was suppose to go in today for a sinus cat scan and an MRI he was able to get either one done due to him getting sick they could not put him to sleep for the tests. He has an appointment with opthalmology and an EKG tomorrow. Tuesday his schedule is Physical therapy, chest X-ray, MUGA, and then he will be admitted for a 24 hour Creatinie Clearance. If he is still getting sick he will not be able to go for the MUGA. Him getting sick full-time might push back the date for the big round of chemo and transplant of his stem cells. He has been off of treatment 2 months July 6th. There is a little bit of good news to all of this he did go out and sit in the pool today for a little while. I could not get him to play he just wanted to sit on my lap, but that is a start.
Monday, June 23, 2003 Michael is feeling a little better this morning. He held down a little cup of milk so whatever he had must have started to work it's way out. He has not eaten yet, but keeping down milk is a plus. Saturday, June 21, 2003 Michael is having a rough day today he is getting sick he has got sick twice so far today. He has still been pretty active. He has not had a fever so that is a good sign. He has had a little bit of a cough I think that he has a sinus infection must have caught it from me. He has been getting birthday cards that have made him really happy as we all know being a kids you love to get mail because you don't get any bills. LOL For those of you that do not know his birthday is July 5th he will be 3. If they do not change their minds on the when they want him to start the big round of chemo he will be in the hospital for his birthday so we will be having his birthday a little early. Will let everyone know when and where it will be.
Thursday, June 13, 2003 Michael went to the doctors today and they have decided to go ahead and do the big round of chemo. Doctor Walters said that the doctor in New York did not think that the type of cancer Michael had was ependamoma. The pathology team in New York studied his MRI's and cat scans, and they confirmed that it was ependamoma. Here are the questions that I asked and the answers. Tuesday, June 17, 2003 Michael went today for his spinal tap finally. Dr. Miller did the procedure, and everything went really well. She said that we will not get the results until Friday at the earliest. Sunday, June 15, 2003 Michael went outside today and played in the yard for the first time since he has been diagnosed. He was have a lot of fun he was playing in the sand box, on the swings, and in his little red car. I got two rolls of film of him and the girls outside they were only out there for maybe 1-1/2 hours, but it was just so great to finally see him leave the porch. He will hopefully continue to want to go out and play more. Friday, June 13, 2003 Michael had a doctors appointment today. The doctor said that they have decided not to give him his big round of chemo. They said that he has a very aggressive tumor and they do not think that by doing the transplant it will help him out at all it will only make him sick again. They think that we should just go to radiation. Which will also make him sick, but they said that they do not believe that the transplant will help at all. He said that we can start radiation now or we can wait to do the radiation until he gets sick again. I am going to hold off on the radiation. I am looking around I want to get another opinion. They told me today that they give him six months to a year to live, but he said that he will be very surprised if he makes it until the end of the year. If every doctor that gives me their opinion agrees that radiation is what we should do next I am going to wait until he gets sick to do the radiation. I have been thinking hard and long and I believe that I am making the right decision I want him to be happy. The other little girl that went through the same protocol as him her tumor came back a couple of months ago and she is now under going radiation again they are only giving her a couple of months to live. They made it sound like he was doing so well with the chemo. Michael has a doctors appointment on Thursday at 2p.m. When the doctor gave me this news all I could do was cry. I was not able to ask any questions so I have my note book which I am filling up with tons of questions to ask Thursday. The answers and question that I ask on Thursday will be posted Thursday evening so if anyone that is reading this has a specific question please e-mail me so that I can add it to my list. Please keep on praying for him we need a miracle. I changed the background so that there are tons of angles around him all the time. I have also added one new photo to his album.
Thursday, June 12, 2003 Michael is doing really well. He is some what back to his own self again. He is awake more now and more energy to play with his sisters. He is doing really well with everything. We are still not sure when he will go in for his BIG round, but I am guessing that I will find out tomorrow at his appointment. Since he has started chemo he is very shy now as before he was very out going and loved to talk to anyone that would listen. Now the most you will get out of him most of the time is Bye. His speech is a lot better now than it was before, but now he is very soft spoken. Well, I will let everyone know how it goes tomorrow. Wednesday, July 2, 2003 Michael had an infection in his lines. They have him on two medications to help get rid of it. He came home today, and if all goes well he has a doctors appointment on Friday the 13th and he has his spinal tap on Tuesday the 17th. Wednesday, May 28, 2003 Michael went into the hospital tonight he woke-up around 9p.m. he had a fever of 101 about 10 minutes later his tempature was up to 105. They did blood work on him in both his tubes and in his arm. They are trying to see if he has a blood infection. They took blood from both his tubes and arm to check if he has an ifection in his blood or in his tubes. They started him on three different medications as soon as we got there. Around 10:30 his fever was down to 102.5. Thursday, May 29, 2003 Michael went in last night for blood and platelets. The Doctor came in and told me that he looked at the MRI, and Michael’s tumor is now the size of a grape. In January it started out the size of a tennis ball. He also said that the brain Surgeon said that he is not going to do a second surgery because the tumor is still connected to the stem so he would not be able to remove the whole tumor. The doctor that is handling Michael’s chemo is sending Michael’s MRI’s to another Doctor. The MRI of the spine showed some informality he does not think that it is cancer, but he wants to send it to the Doctor that he sent his first MRI to just to get a second opinion. Thursday, May 22, 2003 Michael went in today for his MRI we should hopefully have the result tomorrow. He has another MRI Tuesday for his spine. He goes Thursday for his Spinal tap. Will let everyone know the results. Sunday, May 19, 2003 Michael came home today he still has a little bit of blood in his urine they sent him home on some medication. The spinal tap that was scheduled for Tuesday was rescheduled to next Tuesday because his counts are still low. Saturday, May 17, 2003 Michael was admitted to the hospital yesterday. We went in for platelets and I had them put a bag on him to do a urine collection. He was screaming in pain the night before last when he went to the bathroom. The put the bag on him and a couple hours later the checked it, and there was blood in the bag they put another bag on and collected some urine and sent it for testing. When they looked at his urine under the microscope they found a lot of blood so the kept him. His is getting an antibiotic every 8 hours and morphine for the pain. His white counts are starting to come back up. They are not sure why his is having the bleeding they did an ultrasound yesterday, but we have not gotten the results back yet. He will probably be in there until Monday at the earliest. Other than that he is doing ok. The doctor said that he should start eating really well by the end of next week. Guess we will see he is now at 27 pounds. Thursday, May 15, 2003 Michael goes in tomorrow for platelets. He will get a spinal tap done on Tuesday 8/20. He will be put to sleep when they do the spinal tap he will also have fluid drained from his shunt at the same time. I will let everyone know how it goes and when the rest of his tests are they are some time this month. We will be talking to Dr. Queenan (the brain surgeon) either the end of this month or early next month. Wednesday, May 14, 2003 Michael went in today for blood he goes back in on Friday for platelets. Tuesday, May 13, 2003 Michael went in today for his doctor's appointment everything went pretty good he got to come home again. He has to go back in the morning for blood. Saturday, May 10, 2003 Michael came home last night around 8p.m. He is doing ok he has been up playing for a while and now he is getting tired. The doctor told us yesterday that the he wants to wait now for about 2 week to start Michael's test because he wants his counts to come back up. After the test Doctor Queenan will decide if he is going to be able to do surgery or not. The doctor also clarified the last round of chemo (The big one). It is his transplant round the medications will run for 3 days like they have, but he will be getting 5 times what he is getting now in those three days then they will run a 24 hour flush to make sure that the chemo is out of his system. After the 24 hours they will then give him back his white blood cells that they collected a couple months ago. He said that his counts should recover in 2 weeks after they give him his cells back. I am really not looking forward to this round. They will have a morphine drip running for this round the doctor said yesterday that this round is very painful. Wednesday, May 7, 2003 Michael is felling better today he has been getting sick they are giving some medicine to help calm his stomach, but it only works for so long. He is still getting sick, but they took out his Foley today so he has been wanting to walk today at least. His chemo is going well they will probably start all the testing next week most of which he will be put to sleep for. They ran a 12 hour urine test on him that went really well. One of the medications that he gets with his chemo messes with his kidneys and hearing that is why they are running all of these tests. So far everything everything is working really well (Knock on wood). Tuesday, May 6, 2003 Michael is doing ok. He is still playing for right now he started his chemo at 12:30. They have to take his blood pressure and temperature before they can hang his chemo. When the nurse took his blood pressure he bit her finger. He is getting so tired of all of this he woke up asking to go home. He does pretty well once the girls get here. His Chemo will be finished Thursday so we will be home Friday. After this round they will start doind tests like the MRI, catscan and other tests to find out what the next step is.
Monday, May 5, 2003 Michael came in today for chemo. They decided that they are going to give him another round of regular chemo, and then give him the big round. They were only going to give him four rounds of regular chemo instead of five because he has not been handling the chemo very well. That is ok though maybe the chemo will get rid of it more with another round. So his big round will probably be May 26th. He has been doing ok so far this time he has been crying that he is ready to go home. He will start his chemo tomorrow around 12:30 p.m. Thursday, May 1, 2003 Michael had his hearing test today. They said that he is hearing really well. I added a new picture today I will try to put more on soon.
Tuesday, April 29, 2003 Michael went in today for blood and platelets. He did really well the girls came in so he had something to do while he was there. Monday, April 28, 2003 Michael's appointment and test were rescheduled for Thursday May 1st. Sunday, April 27, 2003 Michael has a doctors appointment tomorrow and a hearing test. For the hearing test he will be put to sleep so that they can get accurate information. His last hearing test he would not sit still so they did not get a good reading, and they just want to make sure that they did not get a good reading because he was moving. He is still doing pretty good even though he does not have an appetite at all. He has not really eaten in the last two weeks. He is starting to get really cranky and tired because he is not getting the nutrition that he needs. His stomach has been upset since the last round of chemo he is not holding down his medication most of the time. He has been drinking nothing but milk. He has lost a pound, but nothing major thank God. Will let everyone know how the test goes tomorrow. Friday, April 24, 2003 Michael had to go in today and get a platelet transfusion. He came home after the infusion so knock on wood things are going better this time he went to the doctors twice, and came home both times. He is still very tired, but his counts are doing a lot better this round. Tuesday, April 22, 2003 Michael had a doctors appointment today everything went really well. His levels are all still up, and he got to come home. Coming home from a doctors appointment is always a plus. His potassium is a little on the low side so they gave him some medicine to help bring it up so that hopefully we will not have to be admitted as much this time around. All of the kids had a really nice easter they were all pretty excited when they woke up. Michael was pretty tired on easter, but he tried his hardest to stay awake to play with the girls. Friday, April 18, 2003 Michael came home today around 10 p.m. Me and the girls came home around 6:30, and my mom said that he did not go back to sleep he just kept saying he wanted to go home. As soon as he came he went to sleep he was trying to fight it, but he went. He was ready to sleep in his bed with his pillow. He has gotten sick a lot this round which is normal with the kind of chemo that he is getting, but he has never really gotten sick from it until this time. His leg is starting to hurt I think that it is from the shot that he gets every night for is white blood cells. I will try to update a little more often. Thursday, April 17, 2003 Michael is doing very well so far this round. He has a hearing test on April 28th. He had a blood transfusion today. He will come home tomorrow if his counts stay were they are suppose to. He is up walking the halls this time around last time he only wanted to be pulled in the wagon. Saturday, April 12, 2003 Michael is still home he goes back in on Tuesday for his 4th round of chemo. He has been very tired the last couple of days. After this round of chemo he has the big one which should be scheduled on May 5th. He will have an MRI done after the 5th round hopefully the cancer will be gone if not that is when they decide if they are going to do another surgery or not. I talked to the doctor yesterday about it, and he said that the only way that they will do surgery is if they can remove the rest of the tumor. He said that if they can only remove a little bit or if they think that there will be ANY of it left after the surgery they will not do surgery he will just go to radiation. They said that they do not want to take the chance of making him blind again or causing him more harm by doing the surgery that is why they are not going to do it unless they are 100% sure that with surgery it will be removed completely. Sunday, April 6, 2003 Michael came home today he had to get another platelet transfusion before he left. He is doing good and is happy to be home. Friday, April 4, 2003 Michael is still in the hospital. The last round of chemo (March 21) hit him really hard it has not hit him this hard in a while. So far he has had two platelet transfusions and two blood transfusion. He is not holding his levels at all. His potassium and sodium levels keep going up and down. We are hoping that he will get to come home today. The night before last he had a fever of 100.9 if he stays fever free for 24 hours he will hopefully get to come home. His white blood count is still 0. Tuesday, April 1, 2003 Michael went back to the hospital today. A nurse has been coming out to the house every day drawing labs, and today his red blood count, sodium, and potassium were low so he had to be admitted to get blood and potassium. He will have to come home on IV fluids again. We talked to the doctor and he said that he might just send us home on IV fluids after his last two rounds of chemo. The doctor said that this is hitting Michael really hard and they have not figured out why yet. I also talked to the doctor about giving Michael a shot to help his red blood boost back up after chemo. He said after his next round of chemo we will start the shot. The shot should help his body produce red cells on it's own. That means that he might not have to get as many blood transfusions as he has had to get. Right now Michael is getting about 4-5 blood transfusions every 2 months. The shot will help eliminate at least one of those transfusion. Sunday, March 30, 2003 Michael went back to the hospital today for platelets. He got to come home for a change after the platelets were done. I thought for sure that they were going to find some reason to keep him. He is not real active tonight they give him Benadryl before they give him blood or platelets since he had a fever after he got blood the first time.
Friday, March 28, 2003 Michael came home today his potassium level was high enough for him to come home, but he has to be on a 10 hour potassium drip at home. He is very active still and happy to get to go home. He will have a nurse come to the house and do labs on him everyday until the doctor says that he does not need his levels checked daily. Thursday, March 27, 2003 Michael had his clinic appointment today. His potassium level and red blood cells were low so they gave him a potassium drip, and blood his potassium level did not come up as much as they wanted it to so he was admitted. He was given a potassium drip for 24 hours. Tuesday, March 25, 2003 Michael came home from the hospital today. This round of chemo went really well. He still has all of his energy he is not eating all that well nor drinking very well. I gave him some soda today, and now that is all he asks for is soda. I don't want him to get addicted to soda, but that is all that he will drink. The eye doctor came in and looked over Michael, and said that he does have some vision back, but until he can talk we will not know how much. She was really surprized that he had gotten any of his vision back. He has his next lab & clinic appointment Friday. Friday, March 21, 2003 Michael came back to the hospital today for his third round of chemo. The doctor said that the MRI showed that the chemo has gotten rid of a third of the tumor that was left. He is still doing really well. He has been eating and walking around all day. Wednesday, March 19, 2003 Michael has had a pretty good week he has had his moments where he does nothing, but scream and cry but we have stayed home so that is a plus. He is starting to get some more of his vision back he can see up close, but he still can not see far away yet. He has been playing with the girls and just having fun. He is starting to talk really well now (when he wants too the rest of the time he is whining). He has been walking around the house by himself with no problems at all. Well, hopefully we will know the results of the MRI by Friday or Saturday at the latest. Monday, March 17, 2003 Michael went for his labs and clinic appointment today. The doctor said that the staff infection is healing really well. His counts are still up so he will be admitted 3/21 for his third round of chemo. He will also get his MRI done on the 20th. Hopefully the chemo is working really well. Saturday, March 15, 2003 Michael came home last night. He gets an antibiotic through his tubes every 8 hours. The biopsy showed that he has a staff infection. The doctor said that he could have gotten it from anywhere because his white counts were so low. He has to go back to the doctors on Monday so the doctor can make sure that his butt is still healing. He goes back in on Friday, and will be admitted for his next round of chemo. He is now down to 4 medications. He does not have to get a shot for a couple days. His white blood counts are up, and that is what the shot does is help bring his white count back up. Saturday, March 15, 2003 Michael came home last night. He gets an antibiotic through his tubes every 8 hours. The biopsy showed that he has a staff infection. The doctor said that he could have gotten it from anywhere because his white counts were so low. He has to go back to the doctors on Monday so the doctor can make sure that his butt is still healing. He goes back in on Friday, and will be admitted for his next round of chemo. He is now down to 4 medications. He does not have to get a shot for a couple days. His white blood counts are up, and that is what the shot does is help bring his white count blood count come back up. Monday, March 10, 2003 Today Michael woke up complaining that his butt hurt. He had two little red marks on his butt that looked like a rash. The nurse came out today around 10 a.m. The clinic called me around 12:30 with the results. They said that Michael’s counts were down and that he needed to come in and get a blood, and platelet transfusion. When we got here he was complaining that his butt hurt when he sat on it so I had the doctor’s look at it. They said that they think that it is some type of infection so they did a biopsy on it to see if they can see what it is. He has not done much since we have been in the hospital except sleep. The doctor said that he would have to stay in the hospital for two weeks on an antibiotic through his IV. So we will be here until the end of March maybe the beginning of April. He will be on antibiotics for two weeks and as soon as that is done it will be time for his next round of chemo. Sunday, March 9, 2003 Today we went to Chucky Cheese. The girls had a really good time, but Michael did not want to play. He started to get pale today which means that his counts are going down. He has not really eaten today either so the chemo is starting to kick in. The chemo took longer this time to kick in because he was a little bit healthier going into this round. His home nurse is coming out tomorrow to do blood work so we will find out then how his counts are. Saturday, March 8, 2003 Well, things are still going really well. He is still home so that alone is a big plus. He has been up walking around the house by himself. He is adapting really well. We are still not sure how much he can see, but however much he can see he is not letting it interfere with his every day activities. He cries and hollers a lot now because he still can not talk very well. He calls his Bologna cookies. So when we give him a cookie he gets upset because he really wants Bologna. He has very bad temper tantrums now which he never really had. He takes a lot of medications, and gets a shot in his leg every night still, and he does really well with them. Well, I hope to have good next time I write. Thursday, March 6, 2003 Today Michael went for his appointment, and everything went really well. He now weighs 32 pounds so he is back to were he started. His counts were good so we will be going to Chucky Cheese Sunday for Alexsis (his oldest sisters birthday). We have another appointment next Friday morning. He is having a hard time sleeping he has been staying up all night. Last night my mom and I were up with him until he finally fell asleep around 3 a.m. Hopefully I will have good news the next time too. Monday, March 3, 2003 Michael Came home today he is still doing a lot better walking, and talking up a storm. He has a little girl friend at the hospital that went through the same stuff he is going through right now. They get a long pretty good when she comes around he acts shy sometimes though, but as soon as she walks away he starts looking for her. She is a very precious little girl, and it makes things a little bit easier seeing how she is now knowing that she just went through this a year ago, and she is still so full of life, and has recovered very well. Meeting her made me have a better outlook on the situation. Well, Michael goes for his next clinic and lab appointment on Thursday. Saturday, March 1, 2003 We are on day two of the second day of Michael's chemo. He is doing a lot better this time around. He has to get a catheter every time that he gets chemo. He does not like that at all he complains all the time that it hurts. He has not really complained about anything else hurting which is really good. He counts are still up. The doctors are hoping that he will be release Monday or Tuesday. He is still very alert and active mostly at night, but he is not sleeping all the time like he was with his first round of the chemo. He wants to get up and walk around which is another good sign. The ophthalmologist came in yesterday, and told us that your optic nerves are suppose to be pink and his are almost all the way white. So that means that he might not get his eye sight back. They have scheduled people to come out and work with Michael so that he can still learn even though he can not see all the way. We think that he might be able to see shadows, but there is not real way for us to know that yet. Wednesday, February 19, 2003 Michael's counts went up today he is now at 972 yesterday he was at .5 they gave him more blood and platelets today. Hopefully he will be home tomorrow. The social worker brought Michael a sing-a-long tape yesterday. I put it in before I went down to get us something to eat when I came back that he was standing up holding on to the rails on his crib jumping up and down. He scared the shit out of me, but he looked like he was having fun. Saturday, February 15, 2003 Michael had a platelet transfusion today because his counts were really low. After the transfusion his counts came back up. Wednesday, February 25, 2003 The collection went really well yesterday. They got enough from yesterday's collection that he only has to have it done two days. They came in and took the catheter out today around 6:30. He will start his next round of chemo Friday. Tuesday, February 25, 2003 They started the collection today. We will know how the collection went by tomorrow around 1. He slept through the whole procedure. Monday, February 24, 2003 Michael was admitted today to get his second central line line in for the collection. It is a thicker catheter then the last one. This one was place on the right side of his chest. They will start the collection tomorrow. Thursday, February 20, 2003 Michael was released today. They did not find any signs of infection in the labs that they did. Physical Therapy gave him a walker today, and he is just in love. He was walking all around the halls, and just having a good time when we tried to put him back in his bed he got upset. His fluids are still restricted to 12 ozs. every shift. Friday, February 14, 2003 Michael was admitted again today for he had a fever of 100.6 they wanted him to come in and stay for 48 hours so that they could do labs and make sure that he did not have an infection. They think that he might have had a reaction to the blood transfusion. Thursday, February 13, 2003 Michael went in for his clinic appointment today and they did his lab work and it came back very low his white cells were .1 and his red blood cells were also very low. They did a blood transfusion (which is where they give him someone else's blood). He did pretty good with it, but they are talking about going in and putting in another central line. They want to collect a lot of the white cells before they get damaged by the chemo. Tuesday, February 11, 2003 Michael came home today on 10 medications. He also has to get a shot in his leg every night. Monday, February 3, 2003 Michael got a central line put in today. It was placed on the upper right hand side of his chest. Friday, January 24, 2003 Michael underwent a 15 1/2 hour surgery today on his brain. The doctor's were only able to remove 40% of the tumor because of the location of the tumor. At this point he is still in critical condition. Thursday, January 23, 2003 Michael had a MRI done today that showed that the tumor was located on the brain stem. The doctor told us that he was about 99% sure that this tumor was cancerous because he had no symptoms and it hit him so hard. He is in Critical condition. Wednesday, January 22, 2003 Today Michael went to Newark Emergency room for flu like symptoms. While the doctor was examining him he had a seizer. He was then transported to Christiana hospital. He had a couple more seizers at Christiana. He had a CAT scan done which showed that he had a tumor on his brain. He was then transported and admitted to AI DuPont hospital for children. Another CAT scan was done and drip tube was inserted into his head to help release the pressure off of his brain.
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